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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