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.