Mark Twain

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Wednesday, August 25, 2010

Caregiving - an essay on a difficult topic

I resisted covering the topic of elder care - specifically care of an elderly parent. It is hard to be objective since I am a caregiver for my mother. I feel, however, to totally ignore this topic (which is a major part of my life) would be like omitting the color of your hair if someone were giving a description of you. And I do have a perspective to share. So I will comment on it now.

Caring for an elderly parent is a slippery slope of declining health, poor decision making, resistance to change (even good stuff like hearing aids or a stair lift), loss of individual control, loss of friendships, loss of mobility, and the worst of all ... sadness - sadness that things aren't the same, can never be the same as they were, and that the roles of parent and child have switched - with you becoming the "parent" of your parent. Sadness and loss.

Four years ago I moved my mom into my home. I had experience caring for 2 elderly relatives previously - inlaws and for short periods of time. I was not a rookie, I thought. I know the score. But this time I was caring for my mom and very early on I discovered that my previous experience didn't count for much.

Caring for any elderly parent is one of the hardest and loneliest things you can do. Before she lived with me, I read several current elder care books, and I have since thrown them all away. To begin with, they all recommended not inviting an elderly parent into your home. I was appalled at this view of senior care. This was how it was done for ages (and in some cultures it continues). I felt strongly that this choice should be a viable one - even if it is the most difficult and complicated one!! I had one nurse friend who also discouraged me from this choice and once even implied that I was stupid for taking this step. It was a hurtful comment thrown out carelessly and I am sure that was not her intention to cause pain. And after four years taking care of my mom in my home I think I understand this point of view better, but as hard as this is, I would have made the same choice again. At the time I felt she should be living with family, and I still feel that way.

Oh, we did discuss several options - discussed them for 2 years prior to her move here. But even then red flags were flying. She couldn't make a decision. Getting her to seriously consider any move (even though she made motions about doing it) got no where. Lack of decision making was the first red flag. She also had memory issues, and she was getting very frail. I worried that she had reached the point where others might take advantage of her if she continued to live on her own. Certainly at the beginning of the discussions, she had many independent options to choose from, but she delayed her decision until she could no longer take advantage of those options and her choices narrowed considerably.

Nothing would be gained in the recitation of the things that drive me crazy daily. But I do have a wish list I would like to share. If you know someone who is caring for an elderly parent - their list is probably similar. Wishes are sometimes hard to grant - these wishes are toughies.

So here goes.
  1. I wish I had more help. I am surrounded by a wonderful family, but with the exception of my daughter and my husband, no one intimately understands how much of yourself you sacrifice to care for an elderly parent. Unless you have walked in these shoes, you can't truly understand. It is not my nature to ever ask for help. I believe if you are an adult son or a daughter (or even an adult grandchild) of an elderly parent, some things should be obvious - shouldn't need to be asked of you, shouldn't need reminders. That is what being an "adult" means.
  2. I wish my mother could have her life back. She has given up so much. Her independence, driving which restricts her freedom, control over her meds, control over her health choices, her financial tasks, her friendships, her physical mobility, even her ability to visit others overnight (she can't climb stairs) ... she is so restricted and so much is lost. While it is true that some of these loses could have been avoided, it doesn't change the fact that they are gone now. When my mother signed over her car to another family member I thought I would cry. Yes, she couldn't safely drive any more, and I wanted that car gone from our parking lot so she wasn't tempted ... but still ... I want her to have her life back.
  3. I wish I could have my life back.
  4. I wish my husband didn't have to deal with these daily frustrations, and I wish that we could have more time - just the two of us - in our own house. Yes, traveling away is fun, but sometimes just being at home is fun too.
  5. I wish friends who hold different opinions about senior care would keep those opinions to themselves. If you can't be supportive of an unselfish choice made by your friend, then you really aren't a friend. You are a judge - Caregivers don't need judges in their lives.
  6. I wish the decisions that I am forced to make on my mother's behalf weren't so hard to do at times.
  7. I wish she was more supportive of my efforts to help her.
  8. I wish I didn't have to be her "parent".
  9. I wish I wasn't creating a "wish list".
Mom and I are like cookie cutters of each other physically. In many ways we are different in attitude, and we are very, very different in our approach to life. But watching her is sort of like watching me in 20 years - unless I do things differently now. There is one last wish I want to make.

10. I wish that my kids won't be forced into making a wish list in 20 years. I wish that with all my heart. I am working on that now.

PS - Mom, I love you!

4 comments:

  1. I admire you for your honesty and your commitment of taking care of you mom. There should be more people like you!!
    I took care of my dad when he was dying. I only had him at home for less than a year but it was hard, and I am so thankful that I was able to care for him. He died at home in his own bed.

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  2. I spent from 1983 until January of 2008 helping my relatives through illnesses and dying. I didn't seek the position, but as a woman with no children and not working out of the home, I was available. I took care of my mother-in-law (Alzheimer's), her brother (in a nursing home, but I handled the finances and saw him monthly), my mother (cancer), my first husband (cancer), my father (Parkinson's and dementia), and my second husband. All are gone now. 25 years of stress, learning patience, on-the-job learning how to be a caregiver, frequent laughter, some crying, some foot-stamping, some time going to an Alzheimer's support group (I recommend that when in that situation), many many nights of only three hours' sleep, and so on and so on. Through it all, I knew I was where God wanted me, doing what He wanted me to do. It wasn't easy, but not much in this life is, and at the end of it all,when people would ask, How did you get through it?, I replied, "You prayed for me, didn't you?"
    I will be praying for you.

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  3. You should know that no matter what, I will take care of you and dad. Whether that's in my house or somewhere else.
    As for people who have insinuated you made a "stupid decision"...I am young, but have worked in several nice assisted livings and skilled nursing communities (as you know). Resident abuse is rampant (even in a nice community), well intentioned care staff are over worked and underpaid. You are the bigger person by putting Grandmas care first. Love you.

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  4. Thank you all. The essay was meant to put some of my thoughts into words and to round out the picture of me as I move forward with this process.

    Thank you for sharing your experiences. Knowing that you can relate because you have been there is a hugh value to me.

    And as for my dear daughter, I have learned a lot watching my mom. The biggest lesson is that I don't want to walk in her shoes as I get older ... and i dont want you to have to walk in mine. We can't always contol the future, but we can fight to make things different. That is what this blog is about.

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