Thursday, October 16, 2008

Singing at the Threshold

I recently got an email from the Threshold Choir, a wonderful singing community I used to participate in founded by Kate Munger in El Cerrito, California. Choirs have now formed in many places throughout the United States and Sussex, England and new ones are being created all the time.

What makes The Threshold Choir special is that it was specifically formed to comfort the sick and dying. Choir members learn songs in 2-4 part harmony and "perform" them (offer them) at people's bedsides. They sing in pairs or in small groups at hospices, hospitals, nursing homes, and private homes by the invitation of the family or the person's caregivers. Sometimes the family is present when they sing, and they sing as much for them as for the person who is in bed. The service is provided for free although donations are gratefully accepted.

It's a wonderful experience to be sung to like this. All Threshold Choir members get to have the experience themselves and when I was a member of the group I remember it as moving, extremely peaceful and profound.

Here's a lovely video I found on Youtube featuring members of the choir I used to sing with in Santa Cruz. I still find it inspiring work.

Monday, October 13, 2008

24 Hour Caregiving

I recently did a follow-up interview with caregiver Joan M. who took care of both of her parents until they died this past year. Joan did 24-hour caregiving for her father in the last few years of his life after deciding to take him home from the nursing home. She feels like this is one of the best decisions she ever made even though the road was rough and difficult. These are some of the insights she shared with me:

24 hour caregiving seems impossible but it IS doable if you keep several things in mind:

1. You must be committed and determined. You must know without a shadow of a doubt that come hell or high water THIS is what you are determined to do. That kind of commitment and focus unleashes energy that would otherwise be dissipated in indecision and resistance. All your creative forces can then come together and be focussed on the task at hand.

2. You must be organized. You need to create a schedule, assign tasks and be able and willing to follow through.

3. You need to have at least one other person (or more) who will take on some of the tasks and can be counted on to do what they say they will do.

4. You need to stay in the present moment so you can respond appropriately. Things change. What worked yesterday may not work today. Expect change to happen and work with it instead of trying to keep things the same.

5. Whatever services you can pay for are worth the money so don't hesitate to buy the help you need whenever possible.

One of the problems Joan experienced was anger with her sisters because they wouldn't help her with their dad. This is what she wanted to share with other readers about that :

"I realized how many times it interfered with the way I caregave at certain times. I ended up resenting my task at hand. Holding it in, getting high blood pressure to the point of a heart attack. Then being no good to anyone! I remember you telling me once "It is your choice" and I politely agreed, but really thought - NO IT'S NOT, THEY PUT IT ON ME AND I HAVE TO DO IT. That's what interfered with the free flowing energy that comes from caregiving. I didn't realize I wouldn't have had it any other way. It WAS my choice - it is who I am and what I believe in. Take away the family dynamics and old crap from the past and look into your heart of hearts and decide what you can live with. I went to the convalescent hospital to visit Dad during rehab a couple of years ago. For me that was enough, I wanted him home. I can't be mad at anyone else for not feeling like I did."

This blog was an excerpt from the book The Spiritual Journey of Family Caregiving. Buy it online here.

Sunday, September 28, 2008

Losing Perspective by Compulsively Trying Harder

Take a look at your hand and pretend that it represents a problem you are having. Now put your hand (your problem) one inch or less away from your nose. What can you see? Not much besides your problem! In fact, if you're like most people you probably can't even see all the edges of the problem, never mind a solution. But if you put your hand down and take in the wider view, you can see the rest of the room and the view outside the window. Your life gets bigger and encompasses more possibilities, the problem seems less overwhelming and you can automatically breathe more deeply which reduces your stress and anxiety.

Caregivers of people with brain-impairing illnesses often find their lives reduced to nothing more than taking care of that other person. When I ask how they are or what's new nine times out of ten my clients respond by telling me how their patients are. I have to persist in getting my clients to open their focus wide enough to even include their own health.

I understand this. I'm the same way! The only thing in my life is the problem I'm having and if it can't be resolved right away I just try to focus harder. I try to control what's going to happen because the crisis makes me afraid. I think about the problem constantly, turning it over and over in my mind attempting to figure out what couldn't be figured out before. I reject proposed solutions out of hand if they don't match my imagined vision of how things "have" to go and then chastise myself for supposed "missed" opportunities. I'm damned if I do, damned if I don't because clearly if things aren't going the way I want them to after all this time there's something I must have done wrong and, therefore, I ABSOLUTELY MUST TRY HARDER! And don't you try to distract me away from this intense focus. I KNOW I'm right to be trying so hard because -- can't you see? -- I obviously haven't succeeded yet! The problem's still here!

Can anyone live a satisfying life like this? Sometimes you just have to take a break.

There are people with cancer who somehow continue to live satisfying lives. I always find their stories fascinating because if I were in their shoes I know I would frantically put all my attention on surviving. Yet I recently read a wonderful story about a woman with a recent cancer diagnosis who opened my eyes because she started out doing exactly what I would do. She researched all the latest conventional and alternative therapies, she changed her diet, started exercising, did visualizations and worked very hard to control her feelings because she read that she "couldn't afford a single negative thought." Her life became reduced to her illness and what she was doing to combat it.

Then one day she woke up. All her time was consumed with surviving but what was she surviving for?

It suddenly occurred to her that she had to put her illness into the context of a much wider life - that if she had a reason to live and spent more of her time doing exactly THAT she at least wouldn't have wasted the time she had left. So she took a break and went on a healing retreat where she could be cared for and take some time to rest, meditate, relax and dream. She asked herself the question: since she didn't know how much time she had left (and nobody does know how much time they have) how did she want to spend that time? What made her heart sing? What gave life meaning? How could she leave a legacy or make a difference in someone else's life? What did she want to remember on her death bed that she hadn't experienced yet?

She didn't give up her cancer-fighting protocol but she now saw these activities as a beginning in making her life happen. The steps she took to deal with the cancer slowly started to take up less of her time as she started to shift her attention to what gave her life meaning. Some of her anxiety and fear faded away -- she was too busy focussing on the beauty, wonder and intensely interesting activities of the present moment -- and her enjoyment of life increased. The tumor has not changed size -- at least not yet -- but it does seem a lot smaller in her psyche. It doesn't really matter how the story ends. We don't know yet whether she'll beat this scary monster or not. But she's bigger than that. Her existence is shaped by her illness but it encompasses more life, more dreams, more of who she is and that makes all the difference.

We can't always control what happens in life. Earthquakes happen, our lives get disrupted and we have to spend time picking up the pieces and making new choices instead of doing what we thought we most desired. The roof falls in. Do you walk away and start over somewhere else or do you hold your ground and rebuild? The parent who has abused you all your life needs caregiving assistance. Do you hire people to help her and feel guilty because you're not there or do you do the work "like a good daughter" while she continues to make your life hell? Your loving partner has a brain injury from which he will never recover. After the initial crisis has passed, do you ask for a divorce or stay by his side even though he will never be able to be a real partner for anyone ever again? These are not easy questions with straight forward answers. Neither are they situations where you just do what needs to be done, solve the problem as quickly as possible and get back to your old life. There are moral struggles, practical implications, sometimes heartbreaking consequences no matter what you do.

Sometimes the answer is to step back. Take a break, get a fresh perspective.

Ask yourself what gives life meaning, what makes it worthwhile and, if possible, try to find ways to incorporate your highest values into the life you have now. Given what has happened how do you wish to respond? What are your priorities in this life situation? How do these priorities fit with your deepest values, hopes and dreams? This has nothing to do with "shoulds" and moralistic expectations. It has nothing to do with what you hoped to have in your life at this time. It's about what matters in the present moment and what -- over time -- you want to work towards.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. If you like what you read on this site, why not buy the book? You'll be glad you did!

Sunday, September 21, 2008

How To Help A Lonely Elder

This info was written for people in Santa Cruz, CA but there's enough good suggestions here to help you find similar possibilities in your hometown, I'm sure:

Everyone feels lonely from time to time but the elderly are at a greater risk because most of their loneliness comes from long established habits combined with the loss of longtime friends and companions.

The key to breaking isolation is to very slowly and gently add activities that get the lonely person into the presence of others. In addition to extra contact from existing family and friends, start with activities that are easy to participate in such as church services or special interest classes. Senior centers offer a variety of activities especially geared towards seniors but Santa Cruz is also rich in adult education opportunities ranging from Parks and Recreation classes to community education courses at the University or Cabrillo College. If travel was always a source of pleasure try group tours or day trips. If the person enjoys reading try the public readings and book signings presented by local bookstores. If the person used to gain pleasure by caring for others (children or a spouse) consider volunteer opportunities with a social service agency or child care center. Even a part-time job can make a difference.

For very frail or housebound seniors, an adult day program that includes transportation and medical supervision might serve the purpose. (In Santa Cruz, try Elderday 458-3481 and Cindy's Celebrations 479-7509). If the person truly can't or won't leave the house, it is possible to arrange for a volunteer or paid companion to visit there. Try a Friendly Visitor program (427-5070) or Senior Companion (475-0816 ext. 10). Many others find that what they need most is to live with other people -- try assisted living or retirement communities or rent out a room to another senior citizen or college student (Senior Network Services Shared Housing Program 462-6788). In Santa Cruz it is even possible to try out having a housemate for a very short time by offering a room to a visiting professor or foreign exchange student for one semester or by providing space for a Shakespeare Santa Cruz performer for the summer. (458-3506)

Tuesday, September 16, 2008

Loneliness May Be Hazardous To Your Health

Social isolation and loneliness is a major contributing factor in all kinds of illnesses. A famous study exposed paid volunteers to a cold virus and then recorded how many actually came down with symptoms. It was found that those who described themselves as more lonely or isolated were far more likely to get sick. Other studies have shown that loneliness increases the risk of heart disease and cancer and reduces the life expectancy of those already diagnosed. A recent article in Science News reported that people who live alone are 50% more likely to develop dementia than others and that those who live alone and have no friends are 60% more at risk. It is my opinion that loneliness is probably more dangerous than smoking, lack of exercise and poor diet combined and there are some physicians who are beginning to agree.

Dr Dean Ornish became famous for his multi-faceted program for recovery from heart disease. It included a very strict diet, exercise, meditation and support group participation. He had tremendous results and assumed that the most important factors were the exercise and diet plans. However, his follow-up research did not bear this out. In his most recent book Love and Survival: The Scientific Basis for the Healing Power of Intimacy he writes that he is now convinced that, although diet and exercise is important to the success of his program, the single most effective factor seems to be the support group. People who feel loved and cared for thrive.

It is theorized that having only one strong social bond isn't as effective as having a variety of social relationships which is why a support group can be so effective. Strong family relationships or church and community ties are equally helpful. So my question to you all today is: how are your friendships and social ties? Is there a way they could be strengthened? Are there social activities you would like to try but keep putting off? Make social activity a priority and see how it affects your life. It's well worth the effort over time.

From my book The Spiritual Journey of Family Caregiving, available directly from me for $14.95 plus shipping.

Saturday, September 13, 2008

More Food-Related Tidbits for Dementia Patients

Sugar and caffeine can contribute to agitation. If this is a problem for your patient try substituting decaf coffee or herbal tea and use a sugar substitute.

Does your loved one have incontinence or mild bladder dysfunction? Try eliminating citrus, caffeine and sugar. Remember chocolate contains caffeine! Try carob instead. (No, it doesn't taste the same but it's better than nothing.)

From The Spiritual Journey of Family Caregiving

Wednesday, September 10, 2008

Do You or Your Dementia Patient Snack on Crackers or Sugary Snacks All Day?

Be aware that overuse of sugar and sensitivity to wheat is extremely common and can create dementia-like symptoms in healthy people. Fatigue, fuzzy thinking, mild confusion, water retention, even arthritis can all be exacerbated by dependency on these products.

How do you tell if this is a problem for you or your patient? For two weeks try substituting potatoes, 100% rye bread, rice or other grains for bread and other products made with wheat including soy sauce. Eat more protein and vegetables and use a sugar substitute like stevia or give up sugar altogether for the same time period. If you don't have another health condition creating the symptoms and you are not allergic to anything else you should see a significant change within that period of time.

Be warned! This is not an easy task! Just like any other physical dependency, the body tends to crave the very substances making it sick. Not only that, sugar and wheat are everywhere in our society. Sugar includes honey, corn syrup, maltose, dextrose, maple syrup, jellies and jams, etc. Wheat is in almost everything made with flour. Still, if you find enough substitutes to satisfy the cravings, the increase in energy and clear thinking alone may be the worth the effort.

From The Spiritual Journey of Family Caregving. Buy it now directly from the author.

Saturday, September 6, 2008

Is it possible to prevent Alzheimer's Disease and Reverse Early-Stage Memory Loss?

As soon as people find out what I do they often ask me what they can do to prevent Alzheimer's Disease and other brain-impairing illnesses. There are no definitive answers but in my work as a family consultant I've noticed a few trends.

Many of my clients tell me that their brain-impaired relative was "just fine" until they suffered some devastating emotional setback such as the death of a spouse or other close relative, a change of residence or community, or a forced retirement. Then, what used to look like normal aging blossomed into full-blown dementia.

Why is that? My boss at the Alzheimer's Association always used to say that the disease must have been present before, it just wasn't noticed because there was nothing to bring it to the family's attention. I think it is much more likely that the changes we associate with "normal" aging actually indicate accumulated damage from multiple causes and then emotional devastation delivers the final blow.

What are the multiple causes? We know that the brain depends on the proper utilization of amino acids to create the neurotransmitters we depend on for healthy brain functioning. In Alzheimer's Disease these neurotransmitters become scarce. However, things that disrupt amino acid metabolism are plentiful and well known.

First and foremost is nutrition and, in particular, how much protein a person eats and how well they metabolize it. Amino acids are found in protein sources like meat, chicken or fish and in adequate vegetarian combinations of beans and whole grains. In order to properly utilize these amino acids, however, a person needs to have adequate amounts of folic acid, B6, B12 and Vitamin C. The body breaks down the amino acids to create other compounds the body needs for various functions. If that does not happen properly in the case of the amino acid methionine, compounds that would otherwise be used to lower cholesterol are not made while a metabolite called homocysteine is created which is toxic in large amounts. High levels of homocysteine injure the arteries and encourages the formation of plaque. There also seems to be some correlation between high homocysteine levels and early stage Alzheimer's Disease.

Things that interfere with amino acid metabolism include not eating enough vegetables (the dark leafy kinds have folic acid in them), having an allergy or sensitivity to wheat or other foods, excessive exposure to pesticides and other environmental toxins, and long term exposure to mental stress and depression.

Things that help the body cope and recover from these things include:

* Adequate but not excessive protein consumption (remember, you need B vitamins and folic acid to metabolize the protein -- it takes a lot of spinach to make up for that Big Mac!)

* High dosages of folate, Vitamins B6 and B12

* Lots of lightly cooked fruits and vegetables

* If you have a wheat sensitivity (which is very common) give up bread, pasta, cookies and other wheat-containing products (I guarantee you'll lose weight!)

* Adequate fresh clean water

* Exercise and mental stimulation (don't watch TV all day!)

* Love and active engagement in life

I believe these last two items are most important. Even people who have already been diagnosed with Alzheimer's Disease ward off the worst effects of the disease and maintain their ability to function longer if they are positively engaged in life than people who are clearly depressed and withdrawn. And sometimes -- I've seen it only a few times in five years of doing this work -- the symptoms of memory loss and confusion can go away almost completely when a person renews their ability to find joy and excitement in being alive and gets the care and attention it takes to make that happen.

The previous blog post is an excerpt from my book The Spiritual Journey of Family Caregiving available now directly from me for $14.95 plus shipping.

Thursday, August 21, 2008

How Do You Perceive Your Caregiving Role?

An excerpt from The Spiritual Journey of Family Caregiving:

On the assessment form we use to judge a caregiver's level of stress, there's a section about how the person perceives his or her caregiving role. As that section is written, I find it fairly useless for my purposes as a family consultant but it occurred to me the other day that the topic in general is actually quite significant. You see, how a person thinks of themselves in relationship to family caregiving determines how they interpret what happens in that experience and, subsequently, how they respond.

For example, when you think about your caregiving situation, do you think of yourself as a prisoner? If so, your patient or the other family members you think cast you into this role must look like jailers. Within such a perspective every additional caregiving task becomes a symbol of oppression, family interactions become battlegrounds, and caregiving is nothing more than a nightmare to somehow survive.

But what would happen if you changed your perspective? I've met other caregivers who thought of their caregiving as a mission from God. One person even told me that he believed his life was saved from a near fatal heart attack so he could come back and provide assistance for his wife. For him, every new caregiving task was further evidence of how important and needed he was and provided him with yet another opportunity to show his love and devotion. He was proud of his mission and was doing everything he could -- including calling me for respite assistance -- so he could do God's work and be of service to his wife until the day she died. What a contrast!

Most people I meet fall somewhere in the middle of these two ends of the spectrum and many change their perspectives from day to day depending on how they feel or how well their own needs are being met. It's become really clear to me that I can't work with a caregiver well unless I know what mindset they are living in.

My greatest joy as a family consultant is when I can help a person step outside of a life-limiting perspective and choose a more empowering approach. Nobody has to be a prisoner -- on some level caregiving is always a choice. When someone feels like a prisoner it's because they don't want to face the consequences of breaking out of jail. Someone will be mad at them or they might feel guilty if they back away from the job, they might have to put their relative into a nursing home or use resources to pay for in-home care the caregiver was hoping to keep for themselves. There's always something the person doesn't want to face. . . but it's always a choice!

Very often, there isn't anything a caregiver really wants to do to change their situations when they consider the alternatives but they can always change their point of view. "I'm not a prisoner --I chose this life and if I want to change it, I'll just face what I don't want to face and do it !"

Tuesday, August 12, 2008

Gratefulness and Family Caregiving

Is the glass half full or half empty? It depends on what you choose to focus on. When times get rough you can't ignore the empty part because that's information about what needs to change, eventually, as time goes on. But neither should you ignore what you have left because that's what makes life worthwhile. Who do you love? Who has loved you? Do you have a roof over your head? If things get really bad will you have the family, friends and community support to survive?

Most of my clients are very focussed on what they've lost, as is normal and natural when life is filled with loss and change. But I had a conversation with a friend yesterday that changed my perspective. He's been given a death sentence -- he was diagnosed with an illness that, theoretically, at least, only gives him a few months to a year to live. Of course, he wants to beat those odds and live a long healthy life but he knows -- like all of us -- that he could die in his sleep at any time. He feels healthy enough now so he was trying to decide what to do with his life. Should he take on a long-term commitment to make a particular dream come true? What if he doesn't have enough time left to accomplish his aims? Or should he take the next flight out to the Bahamas and live the rest of his life on a boat in the Caribbean, fishing, drinking rum, with his feet up in a hammock? The answer, for him, was to live with the paradox. To live as if each day was his last while continuing to do the long-term things that those of us who think we have forever would choose. On his deathbed he didn't want to think that he could have accomplished his dream but threw the opportunity away because he was so afraid he might die. AND he wants to enjoy the time he has left. He wants to be grateful for the time he has left and use that time to work towards his dearest life dreams.

That's the paradox we live with as caregivers, too. Yes, we want things to be different and need to plan for and make changes as time goes on. AND we need to find things to appreciate every day because every day COULD be our last. What do you appreciate within the context of being a family caregiver?

This blog is an excerpt from The Spiritual Journey of Family Caregiving.

Tuesday, August 5, 2008

Give Yourself to Love

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.

Wednesday, July 30, 2008

Flat Land

Excerpted from the Spiritual Journey of Family Caregiving, available directly from me for $14.95.

A few months ago I had lunch with Mark O'Neil, an interfaith minister writing a book on spiritual lessons he learned on a cross-country bicycle trip with other people. He told me that when the going was rough, cycling up mountains, all the riders could think about was flat land when everything would be easy. That's all they could think about mile after mile and then finally they got there. Kansas, Utah, Nebraska! Blissful relief!

At first.

But then the reality of flat land would hit: mile after mile of unrelenting boredom. Cornfields and unchanging vistas for as far as the eye could see. It eventually dawned on them that as hard as the mountainous roads were, they were far preferable, far more interesting, and a lot more fun.

I had a similar experience recently. I finally got away for a long weekend in the country. Life had been so stressful that I had made no plans and brought no projects, not even a book to read. I was looking forward to a long weekend with nothing to do, socializing with friends and enjoying the scenery. It was great for the first day and a half. But there were no hiking trails nearby and I didn't have access to our car for much of the time. Suddenly the reality of being stuck in the country with nothing to do sunk in -- I felt trapped! Hours of unrelenting boredom! I wanted to do something, go somewhere -- anything would do! What seemed like heaven on earth quickly turned into hell. (Clearly, I wasn't into the idea of this becoming a meditation retreat!)

On the way home our car broke down in San Francisco just after we got off the Golden Gate Bridge. I normally think of that kind of an experience as a disaster -- stuck in the city on a heavily traveled street with cars whizzing by narrowly missing our vehicle, waiting for hours for a tow truck to take us safely home. But instead of feeling awful I was struck by how uplifted and excited I was. Finally, I was having an adventure! It had challenges, perils, and involved interesting experiences I never had had before. We met wonderful people who helped us call for help and got us off the Presidio and onto a quieter, safer street nearby. We played a game while waiting for help: trying to guess at what point cars would notice our flashers and pull into the next lane and trying to see if we could influence drivers to pull over more quickly through prayer and psychic intervention (it actually worked!). We noticed and commented on the weird variety of reactions people had to seeing us stopped by the side of the road -- everything from kind suggestions for help to yelling at us for tying up traffic! We got to have the fire department inspect our car to see if it was a fire hazard and then watched the process of having our vehicle lifted onto a flatbed truck and hauled to Santa Cruz. In short, even though parts of it were very stressful, this "bad" experience was the most interesting and engaging thing that happened all weekend.

So what does this have to do with caregiving? Well, I've noticed in the caregiving support groups I lead that when week after week people report that nothing has changed, nothing is happening, the energy level of the group appears to drop. It's like everything is stuck in a rut and, instead of enjoying the calm, people seem demoralized. But when something does happen, when there's a crisis or a change that needs to be accommodated, the group rises to the occasion with vim and vigor. People become energized, interested, they get ready for action or do what they can to pump up the person who needs to take action. It's quite inspiring as a support group leader to watch everyone come together to help one person figure out how to do what needs to be done.

Right now, we're not on flat land. Our country is on red alert, watching, waiting to see what's going to happen next. [This was written not long after 9/11.] I see the stress on everyone's face and recognize it in myself; yet, I'm also energized. I'm awake. I'm interested and engaged in what's happening in the world in a way that felt more difficult a few weeks ago. And I'm not alone. Suddenly we all have an urgency to do what needs to be done and an acknowledgment that this isn't something we can do alone.

And neither is family caregiving.

The message for today is together we can do whatever needs to be done. People in a common struggle help each other out. That's what happened in New York. That's what happened here in Santa Cruz after the '89 earthquake. In a crisis you can't just wait for the Marines -- they're busy! You depend on whoever is available and they depend on you. Are you getting overwhelmed by caregiving but close-by family and friends are hard to find? Notice who is in the struggle with you: your fellow caregivers! Join an online support group. Join an in-person support group. Then call these people up and exchange friendship and support. Hire an in-home support person together for an afternoon and go to the movies. Invite each other over for dinner with your patients. Then make a pact to call each other for support when you need extra help. This is different from imposing -- it's a mutual agreement to help each other through whatever needs to happen. Not only that, you get to have more fun. Three women I know who met each other through an Alzheimer's support group, support each other to get respite and take weekend trips together. You should see their happy relaxed faces in the photos they took of their last trip to Tahoe! Their partners are steadily getting worse. None of these women are on flat land -- they're climbing mountains -- but they're starting to have fun along the way and they know they'll have support through thick and thin.

Tuesday, July 22, 2008

The Effect of Worrying and What to do About It

An excerpt from my book, The Spiritual Journey of Family Caregiving:

When it comes to stress we usually like to think that something outside of ourselves has made us be stressed out, and often there IS an outside event that sets the process in motion. However, our reactions to stress actually stem from a very complex interrelationship between our physical heredity or current level of stamina, our thoughts about the situation we are dealing with, our past history, and a multitude of other factors, both environmental and internal. How we perceive the situations we find ourselves in is related to all of the above factors which explains why one person might handle a confused or ill-tempered relative with ease while another dissolves in tears of frustration.

Whenever a person perceives a threat to their well-being (real or imagined) there is a chemical reaction that occurs in the brain. Part of your brain called the hypothalamus sends a signal to your nervous system to release epinephrine and norepinephrine (also known as adrenaline and noradrenaline) and related hormones. The job of these hormones is to prepare you to respond effectively to danger. Your heart rate, blood pressure, breathing rate and muscle tension all increase which is exactly what you need to have the power to fight a battle or run away.

However, in the world of caregiving, many of our challenges are not the kind we can fight or run away from. When stress hormones are not used by the body to cope with an emergency, or released in some other way (see below), they build up. If we go beyond the capacity of our body's ability to cope, a wide assortment of physical ailments result ranging from headaches and stomach upset to heart disease and cancer.

So What Can We Do About This?

Because the source of our stress is often more complex than it might appear on the surface, the process of reducing stress is most effective when it addresses these multiple levels of experience. Here are a few approaches that may work for you. Mix and match at will.

The Physical Approach: Many people find that the most effective solution is to use those stress chemicals for the purpose they were designed for -- fight or flight. Hit a punching bag, run around the block, do a few jumping jacks, join a dance class, or swing a tennis racket. Do anything that gets your body moving actively at least once or twice a week. My mom's technique was to clean the house. We had the shiniest windows and floors around when she was upset!

The Emotional Approach: It has been found that the tears of a person crying because they are sad contains stress hormones that are not present in the tears of someone cutting onions so it is theorized that crying is how the body discharges these excessive chemicals. During the release of fear or anger perspiration and respiration may act the same way. So find a safe place, where you won't needlessly hurt the person you care for, and let it out! Cry, laugh, shout. Express how you feel. Sometimes just the process of telling your story to another person who cares can help. Join a support group, call a friend, call a therapist, write in your journal, get on-line and write to a discussion group, pray or talk to God -- do anything that helps you release the tension of struggling emotionally by yourself.

The Do-Something Approach: My personal favorite stress reduction technique is to do something that will keep me from being stressed by the same situation in the future. If there's something I can change to keep from having to feel these feelings again, I do it if I can. This entails seeking the root cause of your emotional reactions and creating an action plan to address it. For example, if you blow up when stuck in traffic and the reason is that you have so little time to handle your many responsibilities, one solution might be to get help with those chores. Perhaps you can call on family, friends, or community agencies to fill in for you or pay someone to do them.

The Mental Approach: Sometimes the best way to reduce tension in our lives is to change our mental attitudes and expectations. There is only so much we can do and sometimes there is no great solution to our problems. So then the change we seek is internal. We give up on our preconceived notions of perfection, of how things "have" to be and adapt to how things are instead. Changing negative thought patterns into positive ones takes time and practice but the rewards can make all the difference. Think back to a time when you handled a stressful situation with ease. What was different? Chances are, you were different. For example, one day last week every little thing I tried to do went wrong. I felt aggravated all day long. The next day started out exactly the same way but, instead of fighting it, I burst out laughing. "I give up! This is obviously beyond me -- it must be in the stars, a bad day astrologically!" I normally wouldn't believe that but it changed my attitude and I immediately felt better.

The Spiritual Approach: Studies indicate that people who have some kind of spiritual focus to their lives cope with stress better and have a higher level of well-being than those who do not. Trusting in a power greater than yourself that you can draw on for guidance and support is the key here. If you have no spiritual beliefs or religious practice, a similar benefit can be attained by cultivating the attitude that the world is basically benign and that by utilizing all your internal and external resources you can handle anything that comes your way.

Wednesday, July 16, 2008

Taking "Family" Caregiving to New Limits

Okay, I know it's out of the realm of what this blog is "supposed" to be about. But, really, caregiving is all about love in action and that's what this video is about as well. Enjoy!

Monday, July 14, 2008

Elder Fraud and Elder Abuse, Part Two

Another excerpt from The Spiritual Journey of Family Caregiving. Buy it now directly from the author.

Elder Abuse

People think:
"I care about my mother -- that's why I brought her home to live with me when she started to slip. But my own life is starting to fall apart. I just found out my husband is having an affair and my youngest son is failing in school. I'm afraid he might be abusing drugs. I'm at my wit's end and when my mother starts in with her criticisms and complaints I just want to shake her. I have never hit her but sometimes I don't come when she calls for help, and once I gave her an extra dose of pain medication to keep her in bed so I could get a moment's peace."

"I have no choice about being a caregiver and I hate it. My father was abusive to me when I was growing up and he's still a mean-spirited old man. But I can't afford to move out and taking care of him is the price I have to pay. Even though he's in a wheelchair and can't physically hurt me, I feel so angry with him that I just can't tolerate his demands at all. I just let him sit in his dirty Depends all day if he doesn't treat me right."

"I don't have the problems some people I know have with their relatives. If Aunt Mary doesn't do what I want I just threaten to send her to a nursing home and she shuts up."

Reality: None of these people think they are abusing their relative. After all they don't hit them. But under the law, the definition of elder abuse includes neglect, deliberate overmedication, and psychological abuse and threats.

The common thread in all of these examples is the caregiver trying to avoid feeling victimized by the circumstances of caregiving. The fact is: nobody can make you give up your own life against your will. If your own well-being (physical, financial, emotional, etc.) is eroded by caregiving it is time to ask for help. Call a family consultant at the Del Mar Caregiver Resource Center, a social worker at the Human Resource Agency or a case manager at Senior Network Services as a starting place.

Thursday, July 10, 2008

Another Book Review

The Spiritual Journey of Family Caregiving was featured in Quest, the national magazine for the Muscular Dystrophy Association this month. It's a nice magazine. You might want to check it out.

Tuesday, July 8, 2008

Elder Fraud and Elder Abuse, Part One

An excerpt from The Spiritual Journey of Family Caregiving.

On Oct. 27, 2000 the San Jose Mercury News reported on the case of a San Jose mortgage broker charged with embezzling more than $700,000 from his 90-year-old mother. The article indicates that he had taken control of his mother's finances when she became incapable of handling her own affairs and had taken multiple mortgages out on her home and made large withdrawals from her investment accounts for his own benefit. He was eventually forced to sell her home because he could not make the payments.

This is a pretty extreme case but, unfortunately, elder fraud and elder abuse is not uncommon. In fact, the conditions that lead to these abuses are the very substance of what all caregivers have to contend with. What people believe is a reasonable response to a stressful situation can look very different in a court of law. Could you be committing a crime and not even know it?

Elder Fraud

People think: "I'm doing so much for grandma. I'm with her round the clock. I change her diapers. I listen to her complaints all day long. I answer the same questions over and over. Sometimes she doesn't recognize me and screams at me to get out of her house. You don't know what I go through! And meanwhile, I'm not working, I have no income, I can't take care of my own life because I'm taking care of hers. I deserve to be compensated for this! Who's going to take care of me when I'm old? I have to manage grandma's finances because she can't figure it out anymore. When I have her sign checks I arrange to have some of the money go to me. She doesn't know-she doesn't see that well. But it's ok. After all, it's MY money. When she dies, it's going to me anyway - or it ought to be. So what's the big deal?"

Reality: Feelings like those expressed above are perfectly natural -- I hear stories like this every day. However, when a person starts taking compensation from grandma's pocketbook the line has been crossed into elder fraud. No matter how it feels, there is no justification for taking someone else's money for your own purposes in a court of law.

People think: "But if I don't use her money for myself I will have to leave her to get a job and who will take care of her if I'm not there? My mom won't let anyone take care of her but me! And we can't afford to hire someone even if she did."

Reality: This is a hard situation to deal with by yourself. Luckily, you don't have to. Ask for help. If you are dealing with dementia or some other form of brain impairment call Del Mar Caregiver Resource Center. If you are involved in some other form of elder caregiving, call Senior Network Services to find out what services are available. Speak with a family consultant, counselor or social worker who can help you sort out your options and feelings. Even joining a support group can help you figure out ways to get your elder to accept help from social services or other friends and family so you'll be free to create a healthier life for yourself.

Thursday, July 3, 2008

The Connections Between Patient and Caregiver Mental Health

Excerpt from The Spiritual Journey of Family Caregiving:

I co-lead a support group for patients in the early stage of Alzheimer's Disease and their caregivers for the Alzheimer's Association in conjunction with Del Mar Caregiver Resource Center. One of the caregivers in the group had emergency surgery several weeks ago and almost died. When she returned she looked radiant. I had never seen her look so healthy and relaxed.

"I learned something wonderful!" she joyfully reported. She had been sick for a long time without realizing it. But now that she was healthy, rested and relaxed after a long enforced break from caregiving, her husband (the Alzheimer's patient) had improved! He wasn't cured by any means, but because he felt less nervous around her he was able to remember things more easily.

Her husband piped in at this point."It's important to feel confident around the person who takes care of you." He agreed that it made a big difference.

So, caregivers, take care of yourself! And don't be afraid to take a break when you need it.

Tuesday, July 1, 2008

The "Relaxation Response"

Why is it that people in the medical profession need to create new jargon for perfectly acceptable techniques? I'm talking about Dr. Herbert Benson and what he calls "The Relaxation Response." Benson conducted a study showing that teaching his patients this technique resulted in decreased metabolism, rate of breathing, blood pressure, muscle tension and heart rate. It was effective in the treatment of a wide variety of disorders including hypertension, cardiac arrhythmias, chronic pain, insomnia, mild to moderate depression, infertility, PMS, migraine and cluster headaches, even dealing with symptoms associated with cancer and AIDS.

What is this miraculous technique? Meditation. Mantra-based meditation to be specific. Benson teaches his patients to repeat any word, sound or phrase that has meaning for them. "Peace", "Om" or something longer like "The Lord is my shepherd." He tells them to passively disregard any intrusive thoughts that come to mind and return to the mantra instead.

That's it. Meditation. I remember when he announced this amazing new "Relaxation Response" technique. I was at a seminar on Spirituality and Health put on by Harvard University several years ago and he did a highly-touted presentation on his findings at that event. I remember wanting to shout from my seat "Where were all you people in the 60's and 70's when Transcendental Meditation was shown to have the exact same effect? Why the hell did it take a doctor giving it a socially-acceptable name to make it alright to come out of the closet and say 'yes' to something millions of people have trusted and used effectively for hundreds of years?"

I better go practice my "relaxation response." The inanity of this situation makes me want to gnash my teeth.

Om mani padme hum, Om mani padme hum, Om mani padme hum...

Ah.... much better.

Saturday, June 28, 2008

Give Yourself to Love

"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf

My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.

I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!

Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).

What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving.

Buddhist Philosophy and Family Caregiving

A caregiver said something very profound to me one day which I decided to tape to my wall. She said that as a young woman in her forties she couldn't stand the Buddhist philosophy of acceptance of what is. She always was a crusader for social change and "making things right." But now that she's 84 years old, as her body is failing her and her short term memory is leaving, she clings to the following Buddhist philosophy as a lifeline. Her words:

That it is possible and ultimately desirable to accept life's limitations while enjoying the mental and emotional freedom that comes from noticing the beauty inherent in every present moment. That no matter how bad things get there is always something in the present moment that makes life worth living and that it is my task to learn to spend more time noticing those things than I do lamenting the losses of the past and the worries of the future.

Today, as I sit writing this, I have the windows of my house closed up tight to keep the smoke in the air from billowing in. There's a huge fire burning across the bay in Big Sur and the wind is blowing the smoke directly this way. The heavy Santa Cruz fog keeps the smoke trapped in the air. We haven't seen the sun in two days.

Two friends were evacuated and narrowly missed losing their homes in a fire just a few miles away and now business associates are in danger of losing almost everything (home and livelihood) in Big Sur. The fires are literally just across the street from their homes. When I think about the challenges friends have been facing lately I have to be thankful for what I have in my life right now.

It frequently takes a crisis to remember what matters most. My Buddhist caregiver friend reminded me to take time to do that every day.

Monday, June 16, 2008

Rosemary is For Remembrance

"There's rosemary; that's for remembrance.

Pray, love, remember."
~Shakespeare, Hamlet

Paul's mom sent us a nice article about aromatherapy that she clipped from Prevention Magazine. In it was reported that a study with college students at the University of Northumbria showed a significant increase in memory and feelings of alertness for those who used rosemary essential oil as compared to a control group. Oddly, the Prevention Magazine article did not report that the study also showed that rosemary slowed memory recall for the same test subjects. In other words, the students outperformed other students in two different kinds of memory tests (and felt more awake doing it) but took a little longer to come up with the results. Hmmm. Could it be that if we stay awake and slow down our brains function better?

I took a quick look around the internet to see if I could find more about this. According to research done by the Burnham Institute for Medical Research there are ingredients in the rosemary herb that protect the brain from the injurious effects of free radical production. Free radicals are thought to contribute to a wide variety of neurological conditions such as stroke and Alzheimer’s in addition to what is considered "normal" age-related memory loss. You can read more about free radicals in another blog I wrote here. In that post I was talking about antioxidants such as those found in blueberries that have a useful effect in counteracting free radical reproduction in the human body. It turns out that the carnosol and carnosic acid found in rosemary are powerful antioxidants. In addition to having a significant effect on memory loss they have been shown to have a protective effect against cancer.

Scientists are hard at work trying to use these findings to create powerful drugs which could be used for the same purpose. Meanwhile it couldn't hurt to add a little rosemary into your life. I like it in my garden--I can't seem to resist picking a little bit and rubbing the leaves between my fingers whenever I can. The smell is irresistible. I use it in my Mama Love for Focussed Attention perfume.

Thursday, June 12, 2008

Stroke of Insight

I just finished reading My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor and I highly recommend it to everyone. Jill Taylor was a neuroanatomist who had a severe stroke on the left side of her brain and managed to recover completely. It took 8 years of step by step progress in which she needed to relearn everything most of us take for granted. How to talk and understand language, how to walk, how to dress and feed herself. And now she has gone back to teaching brain anatomy on the college level, and promotes brain research across the country.

Her book is fascinating because she tells the story of what it was like to have a stroke and what it was like to recover from it from the perspective of not only someone who experienced it but as a scientist who was fascinated with the process and delights in sharing it. Not only that, her book offers very interesting insights into the functions of the right and left hemispheres of the brain, especially in terms of processing experience. She's waxes very eloquent about how living in the right brain is very much identical to what people experience in high states of mystical experience.

It's a great book, easy to read and understand. It could be invaluable to anybody taking care of a loved one with stroke but I recommend to everybody.

Sunday, June 8, 2008

How Do I Get My Parents to Move?

David Solie, author of How to Say It to Seniors: Closing the Communication Gap with Our Elders, has a wonderful article on his blog on this topic. In it, he helps his readers close the gap between our generation's desire to keep our parents safe and well-cared for and their intense insistence on staying at home as long as possible. "How can they be so unreasonable?" we think. "Can't they see that I can't do it all for them anymore--I have a job, a husband and kids of my own. Dad keeps falling down, he's losing his eyesight. Mom gets lost on the way to the grocery store. But they fight me tooth and nail every step of the way!"

According to Solie, all is as it should be. And now that I have a fresh perspective on the problem I'd have to agree. Our parents are very much aware that they are in their final days, step by step losing everything they once held dear. For them having even one more day with the people they love, one more day in the home they created and care so much about, one more day means so very much.

You have a choice about the role you play in this progression. Silently, holding their hands, and doing everything possible to help them hold on to those minutes and days as long as possible without any limits and boundaries on your part is one. Many people come to me with this as their expectation. But there are limits and boundaries -- physical ones, financial ones. Eventually something -- or someone-- gives out. Or you can do the same thing but hold on to a reasonable expectation about what's happening and what can be done. "I'm here for you mom, I'm here for you dad but when we get to the point of xyz (set your limit and boundary here) we're going to have to try something else. Can we put a plan in place for that together?"

They may refuse that, too. "I lived in this house my whole life and I'm going to die here!" Your parents are accepting that this process is going to end in death. Under the circumstances their "safety" and "comfort" isn't necessarily their highest concern. It's about cherishing what they do have left a little bit longer. You'll do better if you can accept this, too. At least to some extent. Deal with your feelings about their impending death. Don't fight the reaper—work with it instead, choosing to make this time a loving end of life experience as much as possible.

Or you can fight with them, missing the point of why we're here together on this planet and why you're doing so much for them in the first place: you love each other. Keep that thought foremost in your minds and whatever has to be done will happen.

Wednesday, June 4, 2008

Deciding to Use a Nursing Home

The following blog entry is an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it now by clicking here!

The decision to place a loved one in a nursing home is always tough. We feel horrified by the options available to us. We feel guilty. We worry that the move will send our loved one into a tailspin. But when caring for a loved one at home requires more emotional and physical resources than you have available using a skilled nursing facility is sometimes the best decision. Consider the cost to everyone involved.

I once had a caregiver tell me that she had given up her career to take care of her mother and that in the course of caregiving she had become a virtual prisoner in her house. Her mother could not be left alone and the daughter could not find the paid help she needed. She had lost all her friends because she was never available to see them. She was unable to sleep because her mother would call for help several times a night, and she was losing her hair from worry and stress. There were very few workable options left but the caregiver hung on and on until the day she was diagnosed with a serious illness. Her doctor insisted that her mom be placed immediately.

All her life the mother had told her daughter “I’ll kill myself if you put me in a nursing home,” but within a few weeks she adjusted and eventually came to like her new caregivers and friends. My job shifted to consoling the caregiver for not doing it sooner.

The most loving option is to do what people need, not necessarily what they think they want. Keep in mind that placement is not the end of your caregiving career. The family caregiver can and should play an important role in providing the emotional, spiritual, and advocacy support the placed person needs to weather such a difficult transition in the best way possible. This shift in role begins the moment you start to prepare for making the move.

Preparing for Making the Move

Step 1. Prove the Need. What are the costs involved in keeping the patient at home? Is the patient’s safety at risk? Is a single caregiver being expected to meet all the patient’s needs at the risk of their own health and well-being? Are there community services or paid services available that are adequate to keep the patient at home?

Step 2. Involve the Family. The whole family needs to be in agreement about this decision as much as possible. Family meetings are hard to arrange when people live out of town or have busy schedules. It can be emotionally difficult to face the fears and guilt and sadness such a choice entails. But for the good of family relations an effort to communicate via telephone or email must be made. Let everyone express their feelings without attack. Decide as a group to put each person’s needs ahead of other people’s desires and make choices based on what’s best for all concerned. Ideally, the patient should be involved in this meeting but when dementia is fairly progressed that is not always the most prudent path. Also, if family members have differences of opinion which cannot be easily resolved it can be very helpful to do this kind of preplanning with an objective third party acting as facilitator.

Step 3. Talk to the Patient. This has got to be one of the hardest things to do. The ideal situation is to approach the patient with honesty and a clear explanation of the reasons why the family wants them to consider this option. If the patient has enough savvy to be able to make rational choices about their future include them in the decision-making process from the start. You may find that with enough advance preparation they may actually feel relieved that their needs and the needs of their family are being well thought about.

Sometimes, though, the demented relative completely forgets that any discussion took place or is too volatile to be included in the first place. In any case, the patient is likely to need (or demand) a chance to express their full feelings. Responses like “How could you do this to me?” or “I’d rather die than go to a nursing home” are expressions of fear and grief. It can be hard to be treated with such reproach but consider what you might need if you were in their shoes and reach for the most loving approach you can. Acknowledge the pain they are feeling as best you can, but resist letting yourself be guilt-tripped into making a choice that is simply not sustainable. Allowing your patient’s fear to run the show is not, in the long run, healthy for either one of you. Stay firm. Stay loving. Get help with the feelings that come up by talking to a counselor, a supportive family member or friend.

Step 4. Begin Your Search. Now it’s time to visit homes if you haven’t already. Get on waiting lists. Talk to your financial and legal advisors. Talk to your local senior service agencies to find out what kinds of complaints have been registered (if any) about the homes you are interested in. Take your time. Plan ahead if possible so you don’t have to make a swift decision from a limited number of choices. And keep in mind that in many parts of the country there is a shortage of space in local homes and waiting lists are the norm. The wait for MediCal or Medicare-paid beds can be even longer. You may need to expand your search for facilities to another county or even further away. The commute may be inconvenient, but the quality and price of the facility might be worth the ride. Be flexible. Be brave. Let go of finding the perfect situation and you’ll get what you need.

Saturday, May 31, 2008

Should My Relative Move into an Assisted Living Facility?

First, what’s great about assisted living?

Assisted living is NOT nursing home care! Most people get a horrified expression on their faces when I suggest they look into assisted living for their relatives but I’ve met many other people who happily have chosen this option for themselves to retain their independence and enjoyment of living longer. Assisted living communities can be a great source of new friendships. Most of them offer activities that beat sitting by yourself in front of the television any day. Some provide transportation to things people want to do and all of them provide meal preparation, housecleaning assistance and personal care services that would otherwise be hard to manage. Assisted living frees family members from the burden of juggling caregiving with dual careers and child-rearing. It can give an overstressed spouse a chance to rest at night and can even be used, in some cases, for a week to a month of respite for those caregivers intent on mostly caring for a loved one at home.

What’s not great about assisted living?

It’s expensive. $3000-$6000/month is not unusual in this area. MediCal and Medicare do not cover assisted living and neither do many long-term care insurance policies. (Be sure to read the fine print!) However, the reality is that 24 hour in-home care is much more expensive and, when a person is willing to move, there is often a house that can then be sold to pay for services. Unfortunately, for many families the choice to use either facility care or extensive in-home services is, financially, out of the question.

Also, change, by it’s very nature, is disruptive and stressful. Moving into a new home can be especially traumatic for people who have lived in one place many years and have their whole identities wrapped up in their home environments. Dementia patients almost always go through a period of increased disorientation when they move. If they are prone to having catastrophic reactions, these displays of intense emotion are much more likely to occur in the wake of a move and caregivers who don’t expect this can be wracked with anguish and grief. Even healthy people go through incredible grief and loss at the reality of dismantling a beloved home and trying to reduce a household of belongings into what will fit in a 1-2 room apartment. New routines, diminished expectations, and being surrounded by a sea of unfamiliar wrinkled faces can bring thoughts and fears about one’s own age and mortality into sharper focus. If part of one’s belief system includes a fear of dying alone among strangers, it can feel as if one’s worst nightmares have come true.

None of these are reasons not to choose assisted living and not all people have reactions even close to this. The earlier in the course of the disease such a choice is made, the better in terms of ease of adjustment. In fact, many of my clients have been pleasantly surprised by how well their loved one adjusted to their new homes and how easily they made new friends. Some people positively thrive and come back to life. Still, it is foolish to ignore the downside. I hear just as many stories about people who gave up on living as soon as they left home and died.

So how is an exhausted caregiver supposed to make such a difficult decision?

You need to address the worries and needs of the care receiver as much as possible while doing what has to be done for your own physical health and mental well-being. Nobody benefits when a caregiver dies or goes into physical decline as a result of trying to do too much. Then there are two patients instead of one and the care receiver almost always winds up in a facility anyway—only instead of having the support their dearest loved one would have provided, they have none.

If using an assisted living facility is something the family is willing to consider, start visiting them early. Educate yourself on who provides the services and environment you prefer in a price range you can consider. Make peace with not leaving your children an inheritance or, if it’s not too late, get a long term care insurance policy that covers assisted living care.

Choose to focus on the positives when you introduce the concept of assisted living to your relative and the rest of the family. Bring the care receiver for a visit during lunch or at a time when an activity they might enjoy is planned. If you have friends or family who deliberately chose this arrangement for their retirement take advantage of their help and positive mental attitude by visiting or talking with them by phone. Alternatively, ask the facility if they have any happy residents who might be willing to chat with you. Find out why they like it and how they made their decision. Knowing others who are having a positive experience goes a long way towards dispelling many of the fears you and your family members may be carrying.

Also, understand that using facility care does not mean giving up on providing your own loving care. Reject the stereotype of the heartless relative who dumps their patient in a rest home and forgets about them. Families can still maintain a loving connection even when a demented loved one lives in a separate place. I know caregivers who pick up their patients every day to go for a drive, go out for ice cream, take in a movie or go for a walk and report that their relationships are sweeter because they can focus on love and creating pleasant experiences instead of on how to survive the stress of not getting enough sleep and providing constant supervision. The care facility provides the much needed hands-on care and respite so the caregiver is free to be a daughter, son, spouse or friend again.

Thursday, May 29, 2008

Mindfulness Meditation for Family Caregiving

Pamela Larsen Schroeder has a nice blog article about the practice of mindfulness (Vipasana) meditation as a tool for stress reduction for family caregivers. Bob Stahl, the person who co-led the Early Stage Alzheimer's Patient and Caregiver Group with me taught several of us this technique one day. I highly recommend it.

Wednesday, May 28, 2008

Should I Move My Parents In With Me?

The following blog is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me for $14.95 plus shipping.

I wish more people would ask me this question before going ahead and doing it. It can be a great solution IF the caregiver is prepared for what it will really mean. Too often, though, people have an overly romantic notion about how great it will be for their children to have their grandparents nearby and how wonderful it will be to have a closer relationship with mom and dad. They look forward to the move only to find out that dementia has changed grandpa into a mean-spirited person who spouts obscenities and grandma is so used to having her way in her own home that she is not prepared for the shift in role being a member of a combined household can mean.

Even in the very best of situations it is not simple to lose your autonomy after years of being independent. It’s hard for parents to be the rulers of their own roost and suddenly have to learn to negotiate and compromise. It’s devastating to have to lose a lifetime of belongings and the precious memories each of those possessions holds to move into a smaller space. Even young healthy people find it challenging to make the shifts and changes a new living arrangement tends to entail, especially when it involves multiple people and long-standing family dynamics. For elders, it’s doubly so.

People who have lived all their lives in multiple family households do the best... but I rarely meet those people because large extended family units who band together to share the work don’t tend to need my assistance so much. It can also work well if a family has a private apartment on the same property so their parents have their own domain and the caregiver’s family maintains its privacy and daily routines. When people choose to share a more limited space, communication about beliefs and expectations needs to be particularly clear, and there needs to be patience with the shifts and changes and negotiation living together often entails. It can be very rewarding. Mutual exchange between the generations really CAN be one of the best things you could do. But it’s equally important to plan ahead for the challenges and pitfalls. Ask yourself the following questions:

  1. Can you and your parent speak honestly and openly? Do you communicate well enough to work out differences of opinion?
  2. Do you and your parent have unresolved conflicts between you?
  3. Is there enough room in your house for everyone to have sufficient privacy?
  4. Is your home able to be adapted for someone who may have disabilities or whose mobility might be impaired? Are there specific needs that may require remodeling? Can you afford to do it?
  5. Have you determined how much care your parent will need? Can you realistically provide that much care?
  6. What will happen if more care is needed? Have you talked about long-term arrangements?
  7. How do all members of the family feel about this decision? Is anyone going to be resentful or unhappy? Are you prepared to deal with that?
  8. Are you ready to state the rules of your household and set limits on what you will or will not do? Will your parent be able to accept these expectations and limitations?
  9. How do you really feel about sharing your household? Will you be able to give up some of your autonomy in order to allow your parents to have some say in decision-making and household responsibilities? Have you created strategies to address these concerns, if any?
  10. Will you be able to find other living arrangements for your parent if the situation is no longer working?
  11. What will be great about living together? Will the advantages outweigh the disadvantages?

These questions represent only the tip of the iceberg. The Family Caregiving Alliance has a well-written and very thorough fact sheet on their website called “Home Away from Home: Relocating Your Parents.” If this is your issue it’s well worth a read!

Wednesday, May 21, 2008

Should I Move in with Grandma?

This blog post is excerpted from my book The Spiritual Journey of Family Caregiving. Buy it directly from me for $14.95.

I’ve had a number of young people in their 20’s or early 30’s decide to take on the caregiving of a beloved grandparent while staying in the grandparent’s house. Because the cost of housing is so high in the Santa Cruz area many people think doing caregiving in exchange for housing is a good deal. Grandma gets in-home care for free, the rest of the family doesn’t have to worry about her, and the grandchild has a place to live for free while figuring out what they’re going to do next. Everyone wins, right? Not so fast! The typical scenario goes like this:

Grandma has been living at home without supervision for a long time but then does something that scares the family often enough that they decide she needs more help. They offer this great arrangement to a granddaughter who is currently unemployed, just got divorced or never married and has no children. She’s the one person in the family with the fewest responsibilities and the greatest need, and she loves grandma, so she says yes. Nobody including the granddaughter thinks that grandma needs more than a few hours of assistance a day because, after all, she’s been living alone up until now. It looks like a pretty easy assignment.

So granddaughter moves in and the first thing she sees is that it takes grandma three hours to take a shower, get dressed and have breakfast (if she does any of these things at all.) Nobody has been around to see this and grandma always said she was fine and didn’t need any help. She was always dressed by the time the family saw her and she still had her social skills except for the obvious memory lapses so it appeared everything was going okay. But now granddaughter sees how hard things are for her and thinks, “Oh my goodness, this is terrible. I can’t let her struggle like this!” So she does the compassionate thing and helps grandma shower, get dressed and undressed and makes all her meals in addition to whatever else the family assumed she’d be doing.

Then granddaughter finds grandma’s handbag in the dishwasher when she’s cleaning up one day. She sees that grandma cannot remember the sequence of events needed to make a peanut butter sandwich. She sees that grandma doesn’t remember how the microwave works and leaves the heat turned up on the stove all day or the water running. Not only that, grandma starts demanding more and more attention—some of it she needs, some she just expects, sometimes it’s once or twice in the middle of the night. Sometimes she doesn’t know who the caregiver is and yells at her for invading her home or accuses her of stealing items she continually misplaces. Granddaughter was only supposed to do some light housecleaning, make sure medication was taken correctly, make the evening meal and be available if grandma needed her at night. She was going to take community college classes or get some job training but now she’s afraid to leave grandma alone during the day. Can someone who acts like this be trusted alone by herself? Could she even remember to dial 911 in an emergency? In almost no time at all the caregiver is a prisoner in the home, she has no time to do what she needs to do about her own life, she starts asking for help, and the family doesn’t understand why.

Then I hear the following complaints: “What’s her problem?!! She has free room and board! I have to work hard to put food on the table for my family and all she has to do is sit around and give grandma her meals and medication. Grandma was getting dressed by herself before! She must be making her dependent. And, personally, I think she’s just trying to take advantage of all of us. Grandma says she’s been stealing from her! Can you imagine that? The nerve of her! She just wants a free ride!” This is not a win-win situation.

Before arrangements like this are made the family needs to know a few facts.

First, everyone needs education on the typical course of the illness Grandma is diagnosed with. Read The 36-Hour Day or some other comprehensive dementia-care classic. Even those who don’t plan to do any hands-on care should know what kinds of things the hands-on caregiver is likely to encounter so they know what to expect.

Second, it’s important to be aware of the value of the services a live-in caregiver provides. One home care agency we work with (in Santa Cruz) charges $265 a day for a 24-hr live-in assistant. The same agency charges $18/hr for shorter lengths of time. Other homecare agencies charge a lot more. If you advertise through the newspaper you might find an independent home-care worker who will charge $12-15/hr but no matter how you do the math, daily live-in help is worth a lot!

But getting free room and board is worth a lot, too, you say? Again, let’s do the math! A typical studio apartment or small one-bedroom in the city of Santa Cruz rents for between $850-1200 a month. Shared housing (two or more people sharing a multi-bedroom house) runs between $550-800 per bedroom (although a few “bargains” exist in converted storage sheds or by choosing to live in a more remote or run-down location.) If the caregiver has a private bedroom, all utilities paid, and access to the entire house and yard, in Santa Cruz that work exchange could be worth about $750/month or more. At $15/hr, $750 will buy you 50 hours/month of homecare services or 12 hours/week. In lower rent districts, the number of work exchange hours would be even less. But this is family, you say? OK, but even if the service is valued at the minimum wage of $6.75, that’s 111 hours/month or less than 25 hours/week. Under any circumstance, for their basic health and well-being, the caregiver should still have a few days or evenings off.

If a family member cannot be trusted to live in their home alone anymore, it’s important to understand that, eventually, more than one person will need to be involved in their care. Live-in arrangements need to include regular time off and, if the time required for caregiving prevents the caregiver from having a normal part-time job, adequate compensation in addition to room and board should be provided to give the caregiver an income and a reasonable standard of living.

Sunday, May 18, 2008

Making Choices About Living Arrangements for Dementia Patients

The following post is an excerpt from my book The Spiritual Journey of Family Caregiving available directly from me, autographed, for $14.95 plus shipping.

To Move or Not to Move

I moved this past month and coincidentally (or not) almost all of my new clients this month have been grappling with issues related to moving. Should I move my mom in with me? Should I move closer to her? Should I be looking for a nursing home or an assisted living facility for my relative? How can I avoid moving my spouse? These are big questions with few simple answers. Moving is stressful even under the best of circumstances but when dementia is part of the picture some kind of change in living arrangement is almost always absolutely necessary as time goes by. This is such a big issue we’ll be looking at various aspects of it over the next few months. I hope it helps sort things out for those of you grappling with this very challenging subject.

The Choice to Keep a Loved One at Home

This is by far the most popular choice, the one most people say they want. And yet, with Alzheimer’s Disease and other progressive dementing illnesses, it is a choice that many people will say is impossible. The Number One complaint I hear from caregivers is that somebody they trusted tried to convince them to place their relative despite their wish to do otherwise. Instead of receiving help in how to keep their relative home they heard “You can’t expect to be able to do this! It’ll kill you!”

Please understand the love and concern behind such a statement. According to the Journal of the American Medical Association (JAMA), in an article printed a few years ago, dementia caregivers over the age of 60 die at a much higher rate than people who are not caregiving. And yet, a new study recently published in the New England Journal of Medicine found that a year after the death of an Alzheimer’s patient, hands-on caregivers were less depressed than those who moved their loved one to a nursing home. Even though taking care of a person with Alzheimer’s Disease is known to be harder on people than taking care of someone with cancer or many other diseases, death appears to bring closure for caregivers while institutionalization can bring guilt and loneliness. In my work with family caregivers I’ve noticed that if the caregiver has enough help to handle the stresses involved, caregiving at home brings the highest sense of satisfaction. There’s the pride and increased self-esteem that comes with the completion of any hard job and relief that the journey is over. Hands-on caregiving also gives the opportunity to heal old wounds or make amends for past behavior.

What you most need to know is that most of the time caring for someone with dementia at home CAN be done and—if you are willing to do whatever it takes—it is often the best solution for all concerned. The key, though, is being willing and able to do whatever it takes.

  • Are you willing to ask for help?
  • Are you willing to make changes in your home environment and normal routines?
  • Are you willing to accept help from wherever it comes (family, friends, neighbors, church members, and community agencies) even if you would prefer that your problems be kept in the family?
  • Are you willing and able to have care workers in your home 24 hours a day at the very end?
  • Are you willing to deal with incontinence, difficult behaviors and physical disability for as long as it takes, even 10-15 years?
  • Most importantly, are you willing to do whatever it takes to take care of yourself so you are able to be a caregiver as long as you desire?

You CAN do this work if it’s your highest heart’s desire. The first caregiver I met through the Alzheimer’s Association was a woman in her 90s who proudly cared for her husband at home until he died. I’ve met caregivers so frail I couldn’t believe they weren’t patients themselves who steadfastly stayed the course. They usually (but not always!) have a patient who is sweet and appreciative, they accept help wherever it comes from, and they know in their hearts, without any doubt, that this work is their highest calling.

Not everyone is so lucky.

Some patients are abusive, keep the family up all night, wander, or have a history of having been so difficult throughout their lives that people who could have helped stay away. If solutions are not found for these problems, home care can become a nightmare.

Some people don’t have family members who can help, refuse to ask assistance of neighbors or friends and can’t or won’t pay for services. Some people have chaotic work schedules, are raising small children, and can’t meet the needs of someone with severe and worsening dementia as time goes on without a lot of help. Some have health problems of their own and others have made choices that make long-term caregiving an impossibility. Then different solutions have to be found.

But let’s assume, for this article, that you’re going to make this choice. What needs to happen to make that successful? The following list of suggestions is the best place to begin no matter what decisions you make about caring for your relative but they are absolutely essential for anyone planning to care for a loved one at home.

1. Find out everything you can about the typical course of the illness or conditions you are grappling with. What are the most likely issues to arise? What is the worst case scenario? What agencies provide services you might need? Where can you get more information?

2. Call a family meeting. Include your patient if they are still capable of making choices and planning for the future. The purpose of the meeting is to educate people about the disease and make sure everyone is on the same page when it comes to what’s coming next. Choices will have to be made about care and who can provide it or pay for it. If your patient will need 24-hour care, eventually, the job will not be possible to do at home if it falls to one or two people alone.

People need to sleep, eat, get plenty of exercise and social contact and have ways to find enjoyment in life. A plan that does not include an adequate night’s sleep and time off for rest and recreation is not a realistic plan. How will the family divide the work or find and hire workers to supplement the work family members do? What community services is the caregiver or patient eligible for? What will your insurance plan cover? What resources do you have to pay for care (rainy day savings, a line of credit or a reverse mortgage on the house, etc.) Is there an extra room for a care worker to spend the night or can family members take turns doing night care duty? Will people need training to handle incontinence, lifting and helping the patient move from a bed to a chair, or managing difficult behaviors? There needs to be a contingency plan made for the worst case scenario.

If you don’t have all the information you need at this first meeting, split up the task of finding the information and schedule more meetings until a plan of action is in place. Expect that the plan will change because the true course of the illness is what will dictate the actions required and that can never be predicted 100% in advance. But at least you will have talked about possible scenarios and will have done the advance planning required to allow your most desired outcome a chance to come true.

3. Based on what was discussed at the family meetings, make any needed appointments with attorneys and/or financial planners. You need to know how to invest or free up money wisely and legal documents need to be written that will allow a person you designate to make necessary decisions for you and your loved one should one or both of you become incapacitated and unable to make decisions for yourself.

4. Learn to let go and share the caregiving with others before you think you “need” to. Your loved one needs to get used to receiving help from others BEFORE a crisis forces such a change to occur. Get in the habit of having time off every week for your own interests. Most people with dementia become very dependent on the person who provides them care. Don’t let that responsibility be yours alone!

5. Make taking care of your own physical and emotional health your highest priority. Forgive me if you’ve heard this before but, as on an airplane, you must put your own oxygen mask on first before attempting to help other people. Create an enjoyable routine that includes adequate rest, exercise, nutritious meals, social contact and recreational activities. If/when caregiving activities start to eat into that time a big red flag should come up for you. Never skimp on these activities except in an emergency and know that an “emergency” that lasts more than a few weeks is not an emergency—it’s time to make a change in how caregiving is done and how much help you need to have.

6. Join a support group either in person or online. You don’t have to tough it out on your own even you have no family or friends nearby. A group of people who understand what you are going through can even be a better source of support than long-time friends who don’t know how to help in exactly the way you need. In a support group you’ll make new friends, share some laughs, maybe even create a caregiving cooperative to spread the work around and lighten the load. And there’s nothing like getting input from a variety of sources for inspiring you with how human creativity can come up with solutions for just about any challenge you may encounter.

7. Keep a notebook with all the information anyone would need to provide care for your loved one inside. List all the medication he or she is taking, what they are for and how and when they need to be taken. Have emergency contacts with social security numbers, Medicare and MediCal information, health insurance numbers and anything else a person filling in for you would need to have in an emergency.

8. Call family and friends regularly and keep them informed of what’s happening. Keep them involved by sharing your concerns and help them help you by planning respite breaks or by accepting their offers to be of assistance in other ways. A home-cooked meal brought over with a loving smile can go a long way when times get rough. Say “yes” when people ask to help and insist that they let you help them.