Both giving and receiving care can be highly charged subjects. As an adult, needing to receive care is often tied to a loss of independence, loss of the sense of being able to have an equal exchange with others, loss of privacy, loss of dignity, and fear of being unable to fend for one’s self. Giving care to another, whether to a child or another adult, can equal a loss of time for one’s own interests and needs, loss of independence, loss of income, loss of freedom, and a fear of failure. The feelings that are stirred up by a need to provide or receive care can be positive: satisfaction at being able to help; the warmth of feeling needed; the pleasure of watching a loved one recover. But there are frequently very strong negative feelings involved as well: grief and loss when the help is rejected or unsuccessful; depression when the need is extended and stressful; intense loneliness when the demands result in isolation from friends or pleasurable activities.
The strongest positive emotion connected to caregiving is satisfaction when the process goes well for both giver and receiver. There is possibly no other feeling more wonderful than the feeling of having been helped when the help was desperately needed or the feeling of joy that results from seeing a person you have worked hard to help benefit from those efforts. The strongest negative emotion connected to caregiving is guilt: often an overwhelming and destructive sense of guilt that can strike both the recipient of the care and the giver of the care. That feeling of guilt is often made more powerful by feelings of shame and failure that accompany the guilt.
Caregiving is a major part of most people’s lives at any stage but in the final fifteen percent of our lives, the part this blog is most concerned with, we have reached a point where on average we are losing three friends or loved ones a year and the need to be involved in caregiving is at a peak.
Many of us have had to clean out the living space of someone who has died or who is moving to a nursing home or assisted living facility. I have been involved in that task several times and I know it affects my view of how I want my own living space to be when my children inherit that task. Bill and I don’t want our children to have a huge burden when it comes to disposing of our possessions some day. I have heard many stories from others about what they had to deal with in that final “housecleaning.” A few of us might be rich enough to delegate the entire task to hired hands but most of us have to deal, at least to some degree, with the task ourselves. Some of the stories I have heard about this experience have been thought provoking and have given me some ideas for making the task easier. I am going to explain my reasons for arriving at these ideas but the characters in the “case histories” I cite will remain anonymous. After all, these stories are about friends or relations with whom I do want to remain on good terms.
Case History Number One: Perhaps the most alarming case I remember involved a wonderful couple who decided to begin downsizing many years before they actually gave up their home to move in with a caregiver. They wanted to be fair to their surviving children and ensure that each of them received some treasured keepsakes. That was a noble idea that turned, in my opinion, into a complete catastrophe in the execution stage. Here is my first tip on this subject: if one or more of your children have a hoarding disorder, do not invite your heirs to a get together where they place name stickers on the items they want to receive when you are gone. If you choose to ignore my warning, at least provide lots of stickers and retreat to a safe location before you turn the heirs loose to tag their potential bequests. The running of the bulls in Pamplona was tame compared to the stampede that ensued when this couple’s descendants were invited to move about the home placing their stickers. A compulsive hoarding disorder causes its victims to desire to own every single available item. Not a single piece of furniture, decorative item, or personal possession in the entire house was left untagged when the dust had settled.
Here are some additional tips for people who still choose to issue this type of invitation to their progeny: have referees available to settle any disputes; use name tags with strong adhesive so they can’t be ripped off by competing heirs; provide a first-aid kit for the injured; provide grief counselors for the participants who don’t suffer from a hoarding disorder and were thus too slow to successfully tag anything. It wasn’t as though this particular couple had priceless possessions worth fighting to own. I saw the merchandise before the free-for-all began and there wasn’t a single item there I felt the desire to take home with me, not that I could have in any case since I was not one of the surviving descendants. The possessions were lovely but, by middle age, most of us have developed strong preferences for what we want our own homes to look like and we are already considering the fact that we will need to downsize some time in the near future. To a person with a hoarding disorder, these facts make no difference in the desire to possess all he or she sees. Continue reading
The list of items that have gone missing in my household right now is a few pages long. It includes things like the following:
- The booklet that came with my current home phone that will hopefully remind me of how to dial in and collect phone messages that went to the voicemail box that only operates when a call comes in while I’m on the line with someone already. (As opposed to the voice mail that records messages when I’m either not home or just not in the mood to answer the phone.)
- The booklet that came with my iPhone that will explain how to use all those wonderful features that I haven’t figured out yet (this is a very large booklet: perhaps I should have called it a book). Yes, Siri, I know you are there waiting to answer my questions and I’ll talk to you as soon as I figure out how to do it.
- The great little pan I bought because it would be perfect for cooking meat loaf for two. I’m pretty certain it is on one of the upper shelves in my kitchen: the ones that a person who is 5 feet-2 inches tall and whose available kitchen space consists of cupboards that average 6 feet-4 inches in height never sees.
- The instructions for where to call if I need to make use of the cremation services Bill and I purchased more than ten years ago. After all, who knows when they might be needed?
- The Christmas wrapping paper that was such a bargain right after the holiday last year: I’d better hurry on this one as the paper is in danger of being wasted (again) if I don’t find it soon.
- The container of vinegar that I was going to use to keep the appliances sparkling clean. You’d think this one would be highly visible since it was the giant, economy size. I’m fairly certain it is hiding under one of the sinks I was planning to rinse with it.
- The batteries for my computer mouse that I desperately needed yesterday when I had to switch to using the laptop’s built-in thingy, which I hate.
- The contact cement that is going to help me stick back the piece of backsplash tile that has come loose again for the umpteenth time.
Dealing with the Cycle of Life in the Physical Universe
Recently, my husband, Bill, and I spent an hour with his doctor talking about whether the time had come to consider hospice care for him. It is hard to explain the effect it had on us to catalog the many ways in which his body has entered the cycle of life where decay starts to take center stage. My husband participated in this discussion of the abilities he has lost, the bodily functions that are becoming difficult to control, the ways in which his brain can no longer keep up with the demands of living. It was a brutal but necessary discussion and it could have been held without Bill in the room but he chose to take part in it. Bill has an extraordinary ability to confront the parts of life that most of us avert our eyes to avoid seeing. But the time spent in that room did take a heavy toll on both of us and, after the discussion was over and the decisions had been made, we needed to find a way to return to a place where we could find some sense of fulfillment and peace in our lives. This story is about how we managed to do that in spite of the harsh realities we are facing.
My husband and I love to have philosophical discussions about why we are on Planet Earth at this time; what the purpose of our journey here is; whether we cease to exist or live on as spirits when our bodies die; and why this place, in so many ways, is a violent, unforgiving planet. I believe, for example, that love and compassion are extremely important qualities to focus on developing and yet, the needs of this body of mine dictate that I regularly have to eat other species to help my own body survive. (Yes, as the accompanying photo shows, I include vegetables as a species: just because I can’t hear a tomato scream when I eat it doesn’t mean it is happy to be served for lunch.)
All those nature shows on television are wonderful until they get to the scene where the lions start chowing down on Bambi or the industrious ant colony gets crushed under a falling rock. Then the true nature of the planet and its inhabitants becomes apparent: it is often a cold, seemingly cruel, and painful place to live. It is hard to reconcile stories about the loving God who cares for every living thing and stories about the vengeful God who appears to smite folks regularly. Especially if I, or a person I love, seem to be the person being smitten. Add that confusion to the fact that some days I feel like the rock (intentionally or unintentionally) and other days I feel like the ant (this last statement is probably influenced by the invasion of ants we had in our kitchen recently and the harsh but effective way I dealt with the problem).
The vast majority of the population gets tremendous fulfillment through music: some by writing it; some by playing it; some by listening to it. When other pleasures in life may become more difficult to access as our bodies age, music often remains a great source of pleasure although we may have to make modifications in the way we enjoy it. According to a good friend of ours, Karen Skipper, owner of Orange Coast Music Therapy (http://www.orangecoastmusictherapy.com) and a Neurologic Music Therapy Fellow, music can be used to provide great pleasure for all people and also to help people who have had strokes, traumatic brain injuries, Parkinson’s and Huntington’s disease, Cerebral Palsy, Alzheimer’s disease, Autism, and other neurological diseases affecting cognition, movement, and communication such as Multiple Sclerosis and Muscular Dystrophy. Music can promote wellness, manage stress, alleviate pain, express feelings, enhance memory, improve communication and just plain be lots of fun. Karen has been known to work with patients who are completely unresponsive and, within an hour or two, have them singing along as she plays her guitar. If music can do all that for an unresponsive person, it might be able to pull the rest of us out of a funk, add pleasure to our day, and help us make the final fifteen percent of our lives more fulfilling.
I have first-hand experience of how music can help relieve pain. I decided to learn to rollerblade a few years ago. I assumed it would be quite similar to roller-skating as I had done it in my youth. I was wrong. It is far more like ice-skating. Within minutes of strapping on the skates and taking off across the park, my ankles were wobbling and my insteps were burning. I kept at it for a few weeks thinking I would build up strength and the pain would diminish. It didn’t: if anything it got worse. I was also a great deal clumsier than I had been as a teenager when we would skate for hours to music at the roller rink. Then one day, I took my headphones and Walkman with me (Judging by the Walkman, this was clearly more than a few years ago, probably more like twenty years ago). When I put it on and started playing Bob Seger’s “Give Me That Old Time Rock and Roll,” suddenly I not only became less clumsy but the pain was reduced. When the song ended, the discomfort returned. I eventually developed a whole play list of music with a strong rhythm and a rousing melody and the pain diminished so much I began to enjoy skating. If I were to follow the lead of the woman in the photograph, I bet I could still manage to roller blade. At 72, I would definitely want to use a walker as she is doing as a safety measure. Continue reading
This blog is all about making the final fifteen percent of one’s life rewarding, and the most common item on the wish list of many people in that stage of life is travel. As long as we remain able-bodied and have sufficient income, travel is an obvious way to get pleasure from life. Unfortunately, when people start to face some physical challenges, travel often becomes one of the first pleasures in life to disappear. My husband and I both think there are ways to extend the period of time when travel can be pleasurable. Because I have served on the Board of Directors of the Parkinson’s Association of Orange County for the last five years and because both Bill and I have attended one of their best programs, a vocal therapy group, we both have lots of friends with physical challenges. A few of these friends have offered to contribute some information on how they manage to keep on traveling even with the mobility issues that Parkinson’s causes. Another friend with parents who have both mobility and cognitive issues is also contributing some ideas to this post.
There is so much information to cover on this subject that we will break this post into several parts. In this first part, we are going to talk about traveling by airplane. Future posts on travel will cover other forms of transportation as well as hotel stays, sightseeing, and other elements of pleasurable travel.
Finishing the Journey
Having a great travel experience involves far more planning than it did when we were young and could just grab a backpack and take off. Now there are items like medicines, mobility devices, personal hygiene issues (how to dispose of the Depends discretely), energy supply, etc. But all that planning can be half the fun because of the sense of anticipation it brings, and the end result is made clear in the picture we have included here.
I got depressed today! It happens. Although this blog is about how to make the final 15% of your life fulfilling, and most of the time I do feel happy and fulfilled, there are times when depression overwhelms me. Not clinical depression: not the kind of depression that comes over a person for no reason in spite of the fact that life seems to be going well. I’m talking about the kind of depression that happens when life is tough. My life has felt tough recently. Correction: I should say that my husband’s life has been tough lately. It’s watching him deal with the tough parts that has made my life tough. Whoops! That’s not totally true either. Some days it’s hard to be completely honest. My life has been tough lately too.
Dementia steals so many things from the person who is experiencing it (and their loved ones). Over the last few years, my husband has had to sell his beloved Harley and his Madass Motorscooter, and then he had to give up driving completely. He’s had to give up the freedom to go anywhere he wants on his own; to be home alone if he chooses; or to go out in the garage and work on his projects. In short, he has lost the freedom to feel like an independent adult. But as everyone who is a caregiver knows, watching a loved one suffer such terrible losses has a profound effect on the observer too.
A lot of the pleasure that we get in the final 15% of our lives will be based on whether we have judged our actions or events during that period as successes or failures. Everyone has certain criteria that they use to make that judgment. But I think some of us would benefit from making an adjustment to those criteria. I have a story to tell that will explain why I feel that way.
I was talking to my husband Bill last night about an event from our past that I considered to be a wonderful adventure and therefore a great success. I was surprised to hear from him that he remembered it as a failure. I was having great pleasure just thinking about the event while he was experiencing a sense of loss thinking about the exact same event. It was a complex event in our life that contained many hopes and aspirations as well as actions and incidents that could each be judged a success or failure. I rated the overall event is a tremendous success because we had some amazing new experiences, many extremely enjoyable moments, some wonderful recognition for hard work done and, in my opinion, just one failure. Bill remembered only the failure.
Epcot Center Giant Ball marks the entrance to our adventure
The incident I am going to describe was based upon one of my husband’s amazing talents. Bill, in my opinion and the opinion of many other people, is a mechanical genius. On every project he’s ever worked on around the house or in the garage, he has ended up inventing some new tool or way of doing the action required. I didn’t always appreciate that talent when it resulted in the project taking much longer than I had anticipated but I could always appreciate the intelligence and thought behind the end result. Over the course of our youth, it never occurred to us to try to patent any of these amazing inventions or to try to profit from them financially. I think it never occurred to me that not everyone’s husband invented new tools regularly. What a shame. If I had one “do over” in life, I would be wiser about recognizing that my husband’s inventive talents might have been marketable. Continue reading
I was talking to my husband last night and he reminded me of a story I had written about a woman I worked with when I was working as a trauma counselor. That story had ended up as an article in Caregiver Magazine. The woman in the story is someone I admire more than I could possibly express. He suggested that the woman’s story, as I had written it many years ago, would be a good thing to post on this blog. He was right, as he so often is, and here is the story.
Communication can be a great form of help
I first met Helen shortly after she had been diagnosed with ALS, a progressively debilitating and usually fatal illness. As a long-time trauma counselor, I had frequently worked with people who had terminal illnesses but it was never easy. Helen surprised me though. Her biggest concern was not for her own all-too-brief future; it was for her husband, who was performing more and more care-giving tasks. Helen was afraid that her long-term illness would have a crushing effect on her husband’s health and spirits. Helen had nursed her first husband though his long and ultimately fatal illness so she knew exactly what her husband, Frank, would be up against in his attempts to care for her as the disease took its toll.
If you’ve ever been tested by a doctor to see if you have memory problems, or if you’ve ever accompanied someone else who has undergone the testing, you know exactly what counting down from 100 by sevens indicates. It’s a test that is commonly done to measure whether you have any signs of dementia. My husband, who was first diagnosed with dementia in 1995, has had the test many times while I have sat by and watched. I haven’t had the test done on me by a doctor yet, but I have attempted to do it on myself innumerable times. All I have to do is forget a word or forget to do something important, or have any other little memory lapse and I get a panicky feeling that is only quelled by starting to count down from 100 by sevens. Okay, I know, how could I tell if my answers were wrong if I truly had dementia! All my answers might be wrong and I would never know it. But common sense doesn’t enter into it when I’m overcome by that panicky feeling.
Why should I react so strongly to the thought that I might be developing dementia? Dementia is an expensive illness. My husband’s dementia has reached the stage known as moderate. He would not be able to live by himself; he is not able to drive; he has no idea if the bills get paid, the dishes get done, or any of the other vital tasks of running a household are accomplished. If he was a widower or if I had lost my marbles too (that is Bill’s description of his illness, by the way, not mine), he would have to be in a nursing home. Like many people in our age group, we are relatively comfortable in our retirement financially, but our budget would not cover two people in a nursing home at the same time for any extended period. That’s a cold hard fact of life. The fact that I talk about it and make back up plans is one of the reasons that some people think I’m morbid, but I consider it being practical.