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.

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.

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.

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.

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.