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Her legs are in an almost permanent bent position. She is unable to do anything for herself. We have been rubbing them and trying to do strengthening exercises, but she gets more frail everyday. She is just terribly frail. I do not know what else to do. Any suggestions? Thank you.

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ElizabethAnna, I'm feeling your pain at not being able to provide "all" for your mom the way she did when you were younger.


It's often not possible for even the most devoted child to care for an elder through the end stages of dementia as sole caregiver.

Dementia is not "normal development " the way childhood is. Dementia is a disease; if you'd had, say, CP or Autism as a child, your parents would have sought the best outside resources available . And you need to do the same .
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Anne and Cindy you are both doing a wonderful job caring for your loved ones.
All I have to add is keep everything warm, sheets,blankets, towels etc and warm any lotions or liquid soap. Use plenty of pillows to keep him in the most comfortable position. For example under his knees and between his legs. Don't be afraid to use and medications prescribed he has a right to to be in pain. It is far better to give him pain meds and allow him to spend whatever time he has left in comfort even if he does become very drowsy. Likewise with any any anti anxiety meds. If you know you are going to move him for any reason give pain med at least half an hour before you do it. Your PCP can certainly prescribe home health aides and any equipment such as a hospital bedWhile not allowing someone to just remain in bed is very good advice there comes a time when the pain really defeats the object. Both these loved ones are clearly nearing the end of their journeys and hospice may be a consideration if you follow their philosophy. Both families are doing wonderful jobs which is so refreshing to hear. Blessings to both of you.
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Do you have Visiting Nurse services coming in to check her periodically? Her doctor can write a prescription for that. It sounds as though she may have contractures.

Has the possibility if Hospice been discussed?
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I currently do not have anyone coming in, but I probably will have to soon. I just hate to think that I can not care for her myself as she took care of me when I needed someone. Thank you for your responses and your care about my Mom. She is just the most wonderful, kind, compassionate, intelligent, classy woman I have ever known. The only thing she remembers is that she loves me, so that is what she says every time I am in the room ~ "I love you.. . . . . more than you will ever know.".
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Elizabeth, remember that the situations are completely different. If you're referring to your mother caring for you when you were a child, you were probably a typically active child. Your mother is unfortunately not able to be active, and that's a whole different level of care.

It wouldn't hurt to be prepared and ask one of her doctors for a script for home health care

I'm still hoping others will stop by and offer some suggestions.
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I should have said I hope "more" posters will stop by. I didn't intend to ignore Babalou; she always has good advice.
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I don't have any good suggestions but just wanted to offer my sympathy for your mother, and also to bump this post up so others can find it more readily and offer suggestions.
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I am in much the same situation with my father-in-law. He is bedridden, but we do get him up into the wheelchair for 2 hours twice a day. This is good, but it is oh so hard because he yells and kicks and hits while we are moving him. He hates to be turned for diaper changes, and we basically have to roll him from one side, clean it, and then roll to the other side. Showers are not possible, so sponge bathing is the best he gets. That is a fight as well, but at least he is clean every day. A lot of his issues are because he is in an extreme amount of pain from his knees, which are also bent all the time, but he is unable to tell us if anywhere else hurts. It breaks my heart. To hear him say "please, please" when we are trying to change his soiled diapers, or when we are moving him somehow, it just breaks my heart, but we know we have to do these things for his own health.
So to your question. How do we help ease his physical discomfort?
We rub his legs down several times a day with aspercream, or even just lotion. I use rice hotpacks (easy to make) and 1 1/2 to 2 minutes in a microwave makes them perfect for an hour of heat. We place them on his knees before trying to move him. I try to gently move his legs, but I can never get him to open that knee up very far, but there has been a little progress. He finds comfort in the heatpack. We also use tramadol now 3 x a day. He also takes an anti-anxiety medication. Without it, he becomes very combative and can and does hit and kick very hard. I have bruises to show for it right now because sometimes even with the anti-anxiety med, he still gets angry with us.
Another way we ease his pain is by playing soft music in his room. He seems to relax and go to sleep with it playing, but when it stops, he gets agitated again.
I can sometimes sing him to sleep. Unfortunately sleep doesn't last through the night, so whomever takes the night shift gets to do the routine all over again, but we are trying very hard to keep him in his own home. We do have 2 hired aides who come into his home, and 2-3 of his sons take turns working through the night shift. I work with the aides, and this week have taken shifts by myself. It isn't easy. But, when he grabs my hand for comfort, it makes it all worth the sacrifices. I know it calms him, and that is what I want to do. Unfortunately my father-in-law is in the severe stage of dimensia, with no more bowel or bladder control, his mind just doesn't register most of what he needs to be doing, he has a fear of water so no showering, he doesn't understand even the simplest instructions, but he is still in there and when I can get a connection where he does understand, it is wonderful.
Good luck ElizabethAnna. Just do your best. Don't be afraid to reach out for help. Our family has had to do that, and we all just work together with the aides to make sure he has the best care available.
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The only thing left to do is pray. There is nothing that will prevent contractures in a person with dementia and it signifies the brain is continuing to shut down the muscles. Do not feel badly about your inability to help her. She is in God's hands now. Do not give her drugs as this will NOT help.
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I know in Alzheimers that the end stage is being in a fetal position. It was with my GMom. I would request hospice. Medicare pays fully for everything you need including diapers. You don't have to be dyingin 6 months. Criteria changed a few years back.
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