Posted 1-23-20
Saying “It is what mom would have wanted” when she is alive and, perhaps almost in earshot of the conversation is a savagely hard thing. I mean…she lives and breaths and laughs…it would sure be nice if she could also answer some questions so that we know we are making the right choices for her. But, the disease….
One of the biggest challenges of having a mother with Alzheimer’s disease is balancing what you know your loved one would want/not want, what is best for them (but not addressed), and what they think they want now but are ill-informed (the disease’s effects are now doing the talking). Today I would like to touch on these areas of concern. As I do, remember that this is an extremely challenging topic that can lead to arguments with your loved one and/or family. I am NOT an expert, but I can at least help you think it through by sharing my list. So, off we go with an obviously not complete list, in order of certainty from most to least:
What I know mom would want/not want:
- Mom told us many times over then last decade (an before), with a clear mind, that she didn’t want advanced lifesaving measures performed on her when it was time for her to go and that we should have peace in that. Therefore, she set up advanced directives long ago and her name tag on her door has a red sticker. If you have not made this clear, you need to do so as soon as possible through an elder care lawyer.
- She has always told us, when the time comes, to not feel guilty if she needs to live in the nursing home. She used to minister through song in the same nursing home that she now calls home. She would jokingly brag about enjoying the crafts and activities and made us feel at ease that the time was right a year ago last October in order to keep her safe.
- She would NOT want us wearing ourselves out mentally and financially feeling obligated to visit every day.
- She would have my butt on a platter if she knew I was driving on ice or through storms to see her.
- She would NOT want us to be sad about her situation.
- I know she wanted to be cremated, but not much else about the funeral. Cremation is her choice for 2 reasons: cost and she was annoyed at everyone always saying “She looks so pretty” about the deceased person in the casket. She said to just put out some pictures.
- I just can’t remember what her answer to organ donation was, but I remember she had one. I would bet that she, as a hero to the underdog, would be a fan of organ donation, but I can’t remember. However, the answer is in the lawyer stuff…
What is best for mom (but not addressed):
- Weight gain. We have recently taken away her desserts because she had gained quite a bit of weight and we were worried she may become diabetic, a very real issue for folks in her stage. We really didn’t discuss diets and the like. However, I feel bad restricting foods she loves.
- (Again) We didn’t talk much about her funeral beyond what I listed above. We have some disagreement within our group. The kids want a pretty big deal funeral because she has lived in her town for nearly 70 years. She knows everyone and we should allow them to say farewell. Some would prefer there to be only family. The details are still being worked out…and may not be needed for quite a while. Such is the nature of the long goodbye. 🙁
- Taking her out of the nursing home for day trips. For the first many months, she was in no place to go out. Today, frankly, if we had the means to transport her and a chair it could be done. She weighs around 160(?), so getting her in and out of the truck as dead weight would be a challenge, but I would love to take her somewhere this spring…anywhere. Fishing…visiting her childhood home…anywhere. (Note…the link is the article in Digital Cornbread that still tears me up to reread. Read at your own risk. You have been warned 😉 )
What mom might think she wants even now but is ill-informed (the disease’s effects are now doing the talking):
- Mom used to worry about the money, for no reason, even early in her stay at the nursing home. She mentioned possessions and money several times and I wonder if her bagging up/gathering all of her stuff was partially about money fear rather than forgetting fear? There is no way of knowing.
- Mom wanted to go back home the first few months she was at the nursing home. She said so several times. She also tried to escape many times, which led to the team arranging a stay at a senior behavioral health hospital for a couple of weeks to redo her meds to reduce her anxiety. This was for us and will be for you one of the most gut-wrenching issues. Keep changing the subject, kicking the can forward, offering hope for a cure/better treatment…and most of all keep visiting and making it like home where you can. If you are staying home with your loved one, you are a hero! However…don’t think that it is the only option and don’t feel guilty if it becomes too much.
- Mom may not see the value of her living anymore. We sure do though… Hence the struggle of the Christian life and the dividing line of faith and selfishness. We should want her to be in heaven now, but it is hard to want that and it is even harder to pray FOR that. Until her time’s sands fall to the bottom of the hourglass, we will enjoy visiting and loving on her.
This may be a bit of a pointless piece. I mean, there are a million omissions… However, if you take one thing from this article, take away this: Talk to your loved ones and make known your hopes, dreams, fears, expectations. I have a loved one who told me “If I get that way, just put a bullet in my head”. I get the point…I do. However, this isn’t helpful in the least because I wouldn’t.. and I still don’t know what to do should the situation come up. Have the hard talks. Laugh too. Write it down. Talk to your elder care lawyer. Work it out. (Especially faith topics). Don’t be afraid that addressing the topic of death means that it is going to happen!! It will happen either way. None of us will get out of here alive (heaven aside…). Do it this weekend or, better, today. Then, when it come to this time things for all involved will be an easier version of bad, and that is worth the time.
#EndALZ
Update: The ice kept me from seeing mom yesterday. I called my stepdad, who braves it rain, sleet or snow and all is fine. I am hoping the weather breaks soon…
Thanks for sharing this❤️
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