My Final Post

I’m going to have to file this post under the heading “My Children Think I’m Morbid” although a part of me might argue with that because I don’t think the action I’m describing here ended up being the least bit morbid. In fact, it turned out to be one of the most rewarding actions my husband and I ever took in our lives. I do recognize, however, that most people think that filling out an Advance Directive is, in fact, a morbid thing to have to do.

When my late husband, Bill, and I filled out our Directives, it started out feeling a bit morbid but by the end of the procedure, it had become one of the most enlightening conversations we ever had. We actually did two different sets of forms, one form that was given to us by the mortuary that we used to arrange for our end–of–life services, and a second form that was given to us by our primary care physician. The two forms contained very different questions and all of those questions were important ones.

Most of the questions on both forms were relatively easy to answer but one of the questions was definitely not easy to answer. In fact, it took us several days to come up with an answer that was sufficient to meet our needs. This question involved this subject of when we would choose to terminate life-extending actions. It was easy enough to say that we would choose to discontinue these actions when our life no longer seemed worth living. The hard part, of course, was deciding exactly what made our lives worth living and when those elements were irretrievably gone.

As most of my close friends know, I can be a bit compulsive about certain things. Because my husband was six years older than me and because my health was considerably better than his at the time we filled in the forms, I took this question far more seriously than he did in the beginning. My father died at the way-too-early age of 48 years after an extended illness, and my mother had to make many of the medical decisions as his condition became critical. I was still a teenager at the time but I was very aware of how difficult it was for her making many of the decisions that were necessary.

It was quite easy for Bill and I to say that we did not want to artificially extend our life span if our condition was such that we could no longer enjoy our life. The difficult part was putting into words exactly what made our lives worth living. I had been married to Bill for almost 50 years at the time we chose to fill out these forms and I thought I knew him very well. But when I pinned him down on exactly what was necessary to ensure that his life was worth living, and when I realized that there was a possibility he would not be able to explain this to me as his illness progressed, I knew how important it was to be absolutely clear in my understanding of this matter.

Because I also recognized the possibility that anyone, even people in apparently good health (as I was at the time) could suddenly have an event like a stroke occur that would leave them unable to communicate on this vital issue, I also recognized that I needed to be able to spell out very clearly to Bill and/or my children exactly what made my life worth living. As we began the process of communicating on this issue, we both realized that it was not going to be as easy as we originally expected to understand our own wishes, let alone understand our partner’s wishes.

The process of examining our own considerations on this subject and our own preferences proved to be both extremely difficult and very wonderful. Bill surprised me repeatedly as he began to voice the conditions he felt were necessary to make a life worth living. I would never have guessed that being able to go out and putter in his garage would be so near the top of his list. Nor did I recognize that the ability to listen to music would also be near the top. I wasn’t surprised to hear that the ability to give and receive hugs was his number one item (Bill was a great hugger), but I was surprised when I realized that such an ability would also be right at the top of my own list.

Working together on our lists was extremely helpful to the process. Many of the items that Bill put near the top of his list were not things that we were in the habit of doing regularly. Once I had seen his list and borrowed heavily from it for my own list, we began to make certain that the activities at the top of our list were done frequently from that time forward. Lots more hugging took place after we completed our lists and I have to add that now that Bill is gone, those hugs are the thing that I miss most of all.

The subject of this blog, as the subtitle denotes, has always been about how to make the final 15% of one’s life fulfilling. Many of the activities that Bill and I did during those last years of his life were based on what we learned about each other as we filled out those Advance Directives. Now that Bill is gone, and I am left behind to plan for the remainder of my own life, I still refer back to the realizations I had while filling out those forms. I am currently working hard to rearrange my own life to take advantage of the fact that I have unlimited choices about what I want to do in the future and that I need to give high priority to the items that were on that list.

I hope my own children never have to make those important decisions for me about when it’s time to accept the inevitable, that death comes to us all eventually, and stop life–extending measures. The benefits of completing the forms extend far beyond just knowing when it’s time to allow life to end. Done properly, the information is also vital to making sure to live life fully all the way up to the end. I’m glad we had both sets of forms. The ones provided by our physician were very strong at covering the legal issues and I appreciate that those decisions have been made. The ones given to us by the mortuary focused much more heavily on spelling out what made life worth living and how we wanted to handle the last occasion in our life, whether it be a full–fledged funeral or a simple end-of-life party. The best part of the forms, as we did them, was the spelling out in great detail exactly what made our lives worth living. The benefits were so apparent, that I found myself wishing we had done the forms years sooner. Imagine all the extra hugs I might’ve received if I’d only recognized just how much my husband loved giving and receiving them.

Note: This will be my final post on this site. I have moved into a new stage of life now and will be started a new blog soon based on my greatly changed circumstances.

The Dark Side of Caregiving

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.

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Reducing Clutter or Disposing of Possessions

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

Music Sooths the Savage Beast

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.music soothes the savage beast

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. skating-ladyThen 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

Maintaining a Balance Between Giving and Receiving Help

 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.

Talking to each other

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.

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