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Allowing the elderly to maintain some control

I'm sorry this is a long post, but I feel very strongly about sharing my experience. My elderly Mother has decided to move to an assisted living facility.  It is with great relief for myself and my sister. But I want to share an observation, especially since this was our first experience with a parent trying to "age in place". But all this doesn't happen, in most cases, in such a black and white world where decisions by caregivers come easily.

 

Having control is so very very important to her.

 

We have had many discussions with her over the past 3 years about options to move to assisted living. There is nothing about the facility she particularly dislikes except one thing.......she likes living in her own home.  

 

We have been absolutely floored at the audacity of others to interfere at this point in her life. Neighbors, friends, even strangers. I can't tell you how many people (not Drs) have recommended, to the point of interfering way too much, that we move her.  My response to those people is the same, we talked to her, we agree, but her one wish right now is to stay in her home.  I try not to become offended with all the concern; most people are trying to be helpful.   We understand a lot of the benefits and emotions involved because we are in the thick of it ourselves.  And I can't tell you how many stories have been shared with us about how "Mom (or Dad) was mad at me at first, but she ended up loving it there".  Yes, I'm sure that is true and I actually believe that same thing will be true for my Mom.  But we also believe that the initial trauma of uprooting her and going against her wishes to a certain point can be a painful and very unnerving experience for someone wanting to make her own decisions and maintaining control in her own life right now.

 

I was very impressed with the book Being Mortal by Atul Gawande. Frankly it became my only ally in a world I was beginning to feel put pressures on us to make assisted living a solution to everything that we worried about.   Please be aware assisted living is not the answer for every caregiver concern.  It can put the caregiver's mind at ease and make their job easier. But we must not forget that for some elderly, having control over decisions and maintaining good mental health is just as important as physical health.  At least until their choices begin to lead to horrible results for them.

amcoffiebean
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Dear amcoffiebean,

 

     I think it's wonderful that you are as respectful of your mother's wishes as you are. There are no right answers here. We all muddle along, balancing safety and independence the best we can. Your family has found a balance between those two that works for you right now. I think that's great. If, in the future, the safety issues gain greater prominence, I am sure you will reconsider your current plan.

 

     I, too, was bombarded with unsolicited advice from well-meaning people. It irked me as well. I kept remembering that old line, "Everyone's a critic." I also have a favorite saying: "Not all 'help' is helpful." For more on this topic, please see an old AARP.org column that I wrote about handlling others' criticism:

 

http://www.aarp.org/home-family/caregiving/info-2014/caregiving-criticism-usolicited-advice-jacobs.h...

 

      I'm curious: What does your Mom think about all the advice that the two of you are receiving? Does she just deflect it or consider it?--Barry Jacobs, co-author of AARP Meditations for Caregivers

 

 

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Dr. Jacobs:

 

Thank you so much for that link to your article, it decribes what we have been going through with helpful advice and I couldn't agree more with your observations.  And I love some of the suggestions for responses to the well-meaning people offering advice!   I have been prepared for a lot of the physical and mental drain of care giving. You know your parent is changing, you know they can not do for themselves, you know there will be memory lapses, you know there will be physical changes and challenges, but I was not prepared for the large amount of unsolicited advice (so outspoken and some criticism) from so many different people. It does make you second guess your own judgment and it does make you feel guilty because you see safety issues and you have to force yourself to make a decision about what is the best for the parent, their safety or their wishes. 

 

You asked: I'm curious: What does your Mom think about all the advice that the two of you are receiving? Does she just deflect it or consider it?--Barry Jacobs, co-author of AARP Meditations for Caregivers.

 

She has a fairly downpat answer:  "I know it (the assisted living facility) is nice but I'm not ready to go there yet".  We know she has been considering it, but it was only about 5 weeks ago she woke up one morning and just said "I'm moving".  Not sure what made the decision for her, I doubt we will ever know, the relief for us was that it was her decision!

 

 

amcoffiebean
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Here here, I so agree. And I LOVE that book. Should be required reading for humans. Loved the story of his aging father in India with all the people around him sharing the responsibility of keeping him safe so he could live out his days as he wished.

 

Jane

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"....But we must not forget that for some elderly, having control over decisions and maintaining good mental health is just as important as physical health.  At least until their choices begin to lead to horrible results for them....".

 

Ahhh. But determining when their choices have dire consequences is the problem. Some of us have had the experience where their family member insisted on driving, then hurt someone else because their driving skills were so diminished.
At what point does one insist on making the decision to take away the car?


"...Why is everyone a victim? Take personal responsibility for your life..."
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retiredtraveler:

Ahhh. But determining when their choices have dire consequences is the problem. Some of us have had the experience where their family member insisted on driving, then hurt someone else because their driving skills were so diminished.
At what point does one insist on making the decision to take away the car?

 

We had to deal with that too! We held off as long as we could until it became a safety issue for others.  She absolutely refused to give it up.  The amazing thing is that I did it one day when I was pretty hot at her.  I caught her lying to me about her meds and a few other very serious issues, so at the end of the "discussusion" I  said "and, it's time to give up the keys". And you know what, she said "ok".  She was just pushing the limit until we were forced to make that decision for her.  I realize we were very lucky, that is not usually how easy it goes.

 

I guess I was sharing my experience because you cannot read any book, go by other's experiences or really know the answer for each individual situation.  My Aunt made her own decision to move to assisted living and quit driving long before it was necessary....bless her!   Those questions and decisions of "when" are some of the hardest parts of caregiving for a reasonably well person because one wants to honor their parent and you are under constant advice and criticism by others to perform how they think you should. 

 

Edit:  To add, many states have provisions where family can call the driver's license bureau to anonymously report elder drivers who are a driving risk. We did that. She received a letter from the state that due to all her traffic tickets the state was going to require her to immediately re-take her drivers test, written and driving, or forfeit her license.  In most cases the driver fails one or both of the tests.  Not my Mom.  When she concentrated she could drive well enough to pass the driving test and the written so that backfired on us because she believed she was driving just fine....if running up on curbs and speeding down the middle of the road was "fine".

amcoffiebean
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