October 10, 2010

A Real Life Love Story - Caring for Your Parents

A little over a month ago I wrote about learning to help your aging parents (or relatives). It is one of the toughest things most of us will have to go through. Watching the physical and mental decline is not an easy thing to accept. In many societies the norm is for one or both parents to live with one of the children and their family. While there can be tremendous positives in a multi-generational household, it does come with major risks and headaches.


In America it is much more likely that a nursing home or long-term care facility will be the end destination. There are probably many reasons why this is our standard way of dealing with aging parents. This is not the blog to explore why, though I'd welcome your thoughts in the comments section. . But, even that scenario certainly doesn't promise a stress-free period.


One of the comments left on the original post is worth reprinting here. His explanation is well-written, emotionally honest, and representative of what  many of us have, are, or will face.  


My Dad died at the age of 81, but his decline started well before that. During his lifetime, he often went through lengthy bouts of depression, and in his later years, the depression mingled with confusion, memory loss, irritability, and no doubt endless boredom, making his last years a nightmare, not only for him, but for those of us who tried our level best to be patient and understanding. He took boatloads of pills, and I often wonder how much the medication contributed to his moodiness and overall state of mind.

 
My Mom had no life at all during those years, such was her sense of commitment to taking care of him. In his final years, he could never be left on his own for fear of falling or getting into some other sort of predicament. With his confusion, he would often mistake her for someone else, and sometimes he would even convince himself that there were 2 versions of her, one good and one evil. He would often hallucinate and sometimes vehemently accuse her of cheating on him, even though she tended to him on an almost 24/7 basis and had no time to take care of herself, let alone find a boyfriend.

 
In later years Mom did all the driving. This tiny woman would load a man who could hardly walk under his own steam into her car and trot him around to his doctors’ appointments. I have no idea how she managed this without help.


If Mom was to have any time to herself in those years, it would require that I be available to “babysit” Dad while she went out. I hated every minute of it. I loved my Dad, but we seldom saw eye to eye on anything (I suppose the way many fathers and sons do). Conversation was difficult for any number of reasons, not the least of which was because he was so confused about what was going on around him, sometimes repeatedly asking me if I was going to take him home soon, when he was sitting in his favourite chair in the only home he’d known for 40 years. How can a man look out his front window at the same neighbour’s house that he’s seen every morning for 40 years and want to know if we’re going home soon?


My Dad would fall constantly. Even with his walker, I would have to walk slightly behind him with my hand gripping his belt to try and steady him so he wouldn’t hit the deck. You haven’t lived until you’ve had to wipe your father’s blood off of the kitchen wall because he split his head open on a corner after taking a spill. Or how about putting his head through the side of the bedroom dresser after falling backwards? And try lifting an elderly man off the floor by yourself when he’s too feeble to help in the process. I use to grab a blanket and wrap it around behind him to try and get some leverage to pull him back up on his feet, but sometimes I just had to wait it out until someone else came along to grab one arm. There is so little dignity in old age that I often wonder why we all seem to want to live forever.


I don’t judge my Dad based on those years. At his best, he was a decent, hardworking man, always willing to help a neighbour or drive the local kids to hockey practice when other fathers were nowhere in sight. It’s an unfortunate fact of life that the most recent memory we’re likely to be left with of an aging parent is usually a snapshot of them when they’re at their fragile worst, both physically and mentally, and possibly a glimpse into our own future.
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This comment is absolutely first-rate in bringing to life the pain and struggles inherent in this situation. It is remarkably consistent with everything I have read on the subject, and my own limited experience to this point. The writer identifies several key areas of concern that are worth highlighting.


How much does increasingly high doses of medication help or hurt? How many of the problems during this stage of life are actually enhanced because the parent is taking medicines that counteract each other, or have serious side effects?  With strict privacy laws in place, how do you get straight answers?


The effect on the spouse or partner is significant. Control is lost over most of that person's own life. Having to be on call means being unable to do anything that delays immediate response to a need. The potential for abusive behavior is real, as is the heartache of confusion. It is impossible to imagine the pain of having your spouse of many decades not even remember who you are. Performance of unpleasant tasks of personal hygiene can't be handed off to someone else. Personal dignity is lost.


When to take away the car keys is a major area of contention. Driving an automobile is a significant statement of personal freedom. When that is taken away from someone for this own good, the emotional outbursts can be tremendous. The original post had a link to a very well written article on this subject. If you didn't see it the first time, click here


The final memories of a parent or loved one may not be the ones we want to hold onto. But, the struggles and pain make it difficult to remember all the good times that came before. Allowing some time to pass and then recalling pleasant memories of the past with family photos or videos would seem a possible way to soften the painful thoughts of the last few days. But, the hurt of those last months or days never goes away.


I am deeply indebted to the unnamed person who left the comment I have used as the focal point for this post. He has voiced some of the fears and concerns many of us must face. Here are some excellent links to articles from the web site Maturity Matters. I found them to be well-written and practical in their advice. If you are facing the dilemma of caring for aging parents, maybe you will find these links a good place to start.

Links to helpful articles
I can also recommend the book, How to Care for Aging Parents, by Virginia Morris. It is easy to understand and very comprehensive. I am using it for my parent's situations. Our health care system is confusing enough with trying to handle it alone.


In this area, we can learn from each other. If you have suggestions, insight, or a personal experience to share, I would be most grateful if you left a comment. This is an area where your experiences and suggestions will be very helpful to others.

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10 comments:

  1. What a poignant statement "There is so little dignity in old age that I often wonder why we all seem to want to live forever." Very scary to see our parents grow old and become less than they were throughout our lives. Equally as scary to realize that we are next in line. Thank you for sharing this post as well as the various links to offer help. It is a difficult road but we all must travel it...

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  2. You hit on one of the elemental fears in this situation: seeing our parents and loved ones decline makes it hard to ignore what our future holds. That is why it is so important to make the most out of this life while we can. There is no "re-do." Every day not spent fully is an opportunity gone forever.

    On that cheery note, I think I'll go to the gym and delay that decline as long as possible!

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  3. Bob,This is such an important topic and I'm so glad you are writing about it. I don't think there are any easy answers. I myself don't find nursing homes the best solution, but sometimes they are required. We also need to look ahead and see that one day we will be in our parents shoes - sooner rather than later.

    Thanks for an excellent exploration of the topic and recommendations for resources.

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  4. Here's a practical note on the driving issue .... Naturally, it is very difficult to get a parent to voluntarily turn in their car keys. In our state we can contact the DMV and request that they write a letter to our parent requiring them to come take the driver's tests (written and driving) even though it is not yet the normal renewal time. In our case the parent declined to take the tests and turned in her car keys .... without placing blame on the children (and, significantly, in the process having an outcome that protected her and other drivers).

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  5. It is not an easy subject to write about or think about, but that doesn't mean it won't become part of our life. The good news is the resources available on the Internet do help a lot.

    Thanks for your comment, Sandra.

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  6. To J295,

    That is an excellent piece of information to check on. Any revoking of driving comes from the state and not the family. I have not heard about such a law in Arizona but I will see what the DMV has to say.

    That could be a tremendous help.

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  7. We also are going through some of this with my husband's parents. Fortunately (or perhaps not so fortuantely) their minds are fairly good but my father in law is so weak that he cannot transfer himself anywhere without help. My mother-in-law can see and hear little. For us some of the most difficult aspects have been respecting their autonomy while encouraging or cajoling them to assisted living and now nursing care - and knowing that they are bored and frustrated by their situation. Often there are no right choices, only the best we can do. Take care.

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  8. The autonomy issue is a sticky one. At some point you must step in to handle finances or living arrangements. But, having to be the "parent" is very hard for the child.

    You have brought up two other important concerns: boredom and frustration. My Mom is bored silly in the nursing home, even with long visits from my Dad. But she is 90% blind and unable to take care of herself so there are no logical options. She can only listen to so many talking books.

    My wife and I, along with our daughters and grandkids, visit at least once a week, but that is only a brief respite for her.

    Note: Chris, I visited your blog and like it. I will plan on reading and leaving comments on your site. Thanks for stopping by.

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  9. You've touched on many difficult elements of caring for a parent, and there's another to be considered: the complicated mix of decisions when there had been abuse in the past from that parent or the heightened emotions when a parent's decline occurs at least in part due to the parent's lifestyle choices such as prescription drug abuse. Does "tough love" apply when it's an elderly and fragile parent who is abusing prescription drugs--even driving to Mexico to obtain them--or are you an uncaring child if you don't abandon your own life in another city to deal with the health consequences of that aging parent's continuing decisions? What if the drug-induced and age-related declines in mental health result in episodes when the parent reverts to abusive behaviors or finds new ones such as deliberately urinating on those children trying to help with physical care? People looking in from the outside may be seeing the gentle decline of a former upstanding member of their community but family members trying to make the right decisions may be facing agonizing circumstances and decisions that others don't see. While making those wrenching decisions, they may be faced with censure. Fortunately, when these circumstances arose in my family, all the siblings maintained open communication without censure of each other, at least, but I've seen other families in which the declining health of a parent ruptured ties between siblings.

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  10. Linda, you have added an important new perspective to this discussion. The situation you describe is horrendous. It would try anyone's patience and understanding. It is encouraging to read that your family managed to handle it without tearing apart the children in the process.

    I deeply appreciate your sharing this story. It is probably more common than I can imagine.

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