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Mom just completed a stay in the hospital and rehab. She has exercises she needs to do daily and a special no sugar no salt diet. Mom lives with us and we make sure she follows the guidelines.
Mom just seems to want to stop the exercises and eat what she wants. We know that allowed to do this she will either aggravate her conditions and or no longer be able to be cared for at home. A nursing home would be the option since they could then do her bathing and care.
Am I forcing her to take care of herself and being unfair to her by requiring her to follow the Dr and therapist suggestions?
Mom forgets from day to day what they have told her about excercise and diet and the alternative.
What should I do? Continue to now be her parent and make her do what’s needed or let her make the decisions?
Thanks

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Hi, my sil died at 40 from cirrosis (spelling?) Of the liver. We didn't know she had it. The fluid retention and weeping was unbelievable!! The pain was unbearable, too. I agree with the salt restrictions 💯 percent.
That added information would have made a difference in my reply.

No, you're right I wouldn't let a child eat poison. But a child hasn't endured 94 years on this Earth. Some of which I'm sure we're not easy. I simply feel, how long do you expect her to live? So with that in mind, I personally, would let her enjoy a little carbs and sugar. But that's just me.

You sound very proud of yourself that you've been able to eliminate the diabetes meds. Great, but is she thrilled too? Maybe she is, I don't know. She's your Mom, so continue to do what you think is right. In the end I don't understand what you were looking for with your post. I do hope you've gotten it though.

Good luck. Enjoy that remarkable Lady!
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Thank you all for your input.
First off let me say that since Mom has been home there has been no need for insulin and her blood pressure is low enough that two of her meds are no longer needed.
The reason salt is off of her diet is that she has cirrhosis of the liver. If she has too much salt and fluids she goes back to the hospital because the fluid will build up around her heart, lungs and other organs and she can't breath.
As for making her happy we took her to the beach this past week for her great grand daughters birthday. We got Mom out on the beach with me and my son carrying her across the sand in her chair and placed her under the pier out of the sun. It was a great time for all.
We do our best to maintain happiness for Mom and at the same time try and incorporate some fun also. The wife and I are both retired now and really thought we would be traveling the world.
We know that someday if Mom continues her life there will come a time when we will no longer be able to care for her in the way that is needed.
For now we do the best we can.
Mom got out with us today for lunch and she walked in and out of the house and the restaurant. I didn't even mention exercise today since she had a good walk workout.
She sees the difference in her ability to move about already. So hopefully she will continue to do what needs to be done.
I guess what I am trying to say is: If you had a child that was getting ready to eat poison would you let them? Of coarse not. Unfortunately salt is one of her worse enemies when it comes to her condition.
Thank you all for your well meant comments.
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1) Read "Being Mortal: Medicine and What Matters in the End" by Atul Gawande. It addresses the topic of quality of life near the end.
2) Ease up on the exercises. If Mom can do some somedays, call that good. At 94 she doesn't need to be fit enough to run a marathon. She just needs to maintain enough strength to be able to assist with transfer. Can she do that with something she enjoys or at least doesn't hate? At my mother's NH batting a balloon across a table counted as upper body exercise!
3) If she does exercise and that makes her want to sleep, let her sleep.
4) For heaven's sake, let the poor woman enjoy her food. She got by with enjoying her food and taking insulin? What is wrong with that? Well, OK, I know that insulin is crazy expensive. But if she can afford the co-pay, and it gives her a higher quality of life near the end (where she is, no matter what she eats or doesn't) why not let her spend her money on insulin?
5) If you think that the rule for people with diabetes is "no sugar" I hope you will sign up with a certified diabetes educator and learn the truth. Your mother's insurance will cover that, including for you as her meal preparer.
6) If I were restricted to no sugar, no salt, and exercise 6 six days a week, I would simply give up, too. Staying alive is not the same as enjoying life.
7) Read "Being Mortal."
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My mother survived a hemorrhagic stroke at 85, refused therapy, rehabbed herself by sheer stubborn will, and told her bemused neurologist 2 days after she was hospitalized that she wanted to go home because she didn’t like the hospital food.
I stayed with her at her house for less than a week, and she told me to go home.
Five years later she called me on her bedroom phone and told me she’d fallen.
She’d broken her hip, and following replacement surgery, she was no longer capable of independent living.
Following a 2 month residential rehab, we took her into our home with a live in aide. She never adjusted to life there. After 8 difficult months in home care, she became a significant fall risk, and we sought placement in the same rehab center where she’d lived after she’d broken her hip.
When she’d fallen I stayed with her literally night and day, and lost my job, so as she entered residential care, I had to find work, having as I did two almost college aged children.
From that September until she died, I went every afternoon to help her with dinner, and her sisters went every noon to help her with lunch.
Much to the surprise of her whole family, SHE THRIVED under the care of the residence staff, and the 5 1/2 years she lived at the center became some of the most peaceful, pleasant, and happiest of her life.
As much as I wish I could say that the care I was able to provide at home was better than the care she received in the nursing home, that wouldn’t be true.
Every decision that we made on her behalf was made with the deepest love for her and her feelings and needs. But there was NO WAY we could provide what was available in the residence we found.
In the residence, they cheered her through activities she would NEVER have done at home, prepared wacky but nutritious meals (cream cheese and jelly softened in a plate of yoghurt) that she would actually eat, and loved her as she was, instead of mourning who she’d been.
My husband and I used to say that caring for a dearly loved, very elderly disabled relative, is a matter of making the best decisions from the only (sometimes sad) decisions available,
You, as responsible loved one, have to decide what aspects of her life are supported and enriched by the exercise, dietary restrictions, and superimposed rules, and also which recommendations have less impact on her life, and also on yours. They were the hardest years of my life, but I have NOREGRETS.
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When are you next travelling?

That might be a good opportunity to try out a nursing home and see how well it works for everyone. You could judge how well they cared for her and find out whether she adjusts comfortably to others looking after her. If it works, great; if it falls short, you can bring her home with no hard feelings.

Exercise: you remind her, you encourage her, you assist her; if she says no, you try again later. You do not force her.

Diet: a little of what you fancy does you good. You're monitoring her blood sugar, if she doesn't already have a px for Metformin or injectable insulin you can always ask for one to have on standby; the relationship between salt intake and blood pressure isn't simply cause and effect, and there's not much to be gained by spoiling her enjoyment of food. Aim for a good diet rather than a special diet, and let her have treats.

Do not conflate making her happy with letting her make the decisions. Your mother has some dementia, and she is 94, and she is dependent on your care. She cannot reasonably be expected to make decisions. But you should make decisions for her based on what you know her preferences are. The aim is to make her as happy, comfortable and healthy as possible - pretty much in that order, too.
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jeannegibbs Jun 2018
CM, I sure agree with the priority order you estabished: "The aim is to make her as happy, comfortable and healthy as possible - pretty much in that order, too."

My own caregiving got less stressful when I decided that my role was to maintain as much quality of life for my dear husband Coy as I could. Improving his health was only important to the extent it improved his quality of life.

He had been on a heart-healthy diet for as long as I knew him. He had more recently been watching carbs for his diabetes. When he developed dementia his geriatrician and his neurologist both said, "let him eat what he wants." I hope my caregivers will be that sensible if/when I am ever in that state.
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I agree heck at 94 give her what she wants ,,make her happy in her final years. Hugs and prayers to you and your mom
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Hi RRF,
At 94, could you imagine just how many times Mother had to do things she didn't want to? How many times she needed to bite the bullet and just do what needed to be done? She also was a depression era baby. Living for all those years, with scars of life that you'll never be able to see, never know.

Leave her be. Sheesh, at that age if she wants to eat a cookie and sleep...let her! She earned some  peace and happiness for her end years.
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What you do with your Mom is really all up to you. Your life is her’s right now. She could maintain for a few more years yet. I suspect that no nursing home exists that would provide the level of care you want for your mom. I believe you posted previously about your mother’s diet while she was in the facility. You may want to revisit the answers you got on that thread and see if any of those answers may aide you in dealing with her possible future visits to a facility.

If you decide a facility is not for Mom, and I predict you will, you must understand that her condition will most likely only worsen. Do you have in-home health care aides? You may want to get them on board. Hospice? That as well. You have no choice, if you travel and don’t send Mom to respite, to haul all the DME with you and care for her in a different atmosphere, making sure you bring not only the equipment but also all the other supplies. If you’re traveling for pleasure, with Mom along, it could be rather unenjoyable.

You seem very dedicated, knowledgeable about what needs to be done and a very loving daughter. But at 94, Mom is tired. Respect that.
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Mom is 94. She has Sclerosis of the liver, Diabetes, heart disease some dementia and a whole list of other issues.
Mom sleeps a lot and just doesn't want to keep going at times.
Today I got her to do her exercises and then she slept for 4 hours.
Yesterday she didn't want to do her exercises at all but i finally got her too. Sunday is a rest day.
The problem with compromise is that she doesn't remember what she did form one day to the next. In fact sometimes forgets what she had for breakfast in the same day.
At times I think a nursing home would be better for us all but I know they would not take care of Mom as good as I can for now.
She just spent a month in rehab where they gave her salt and also gave her sugared drinks not to mention cakes. They were having to give her insulin. Since we have had her home her sugar is normal and we have controlled that with diet alone.
Unfortunately the nursing homes are sometimes worse. I just have a problem with letting Mom self destruct. Given to her own devices she will shake the bottom out of a salt shaker and she doesn't realize the difference in a Coke and diet Coke. When she ask for a Coke and they give her one she doesn't remember to ask for diet Coke.
So there is my dilemma. When we travel we have to take Mom and that is a whole other issue of walkers, potty chairs, wheel chair etc.
If I was sure she could be happy and well taken care of I would be okay with Mom being in a nursing home but dealing with the unknown is hard.
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How old is your mom, and what are the health conditions she is struggling with? It can be difficult to juggle the issues around maintaining their health versus quality of life, especially since we can't be sure how much longer they will be with us. Can you compromise a little - maybe allow a cheat day every week?
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