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My 85 year old grandfather can no longer walk due to multiple conditions relating to his bones/muscles. This came on fairly quickly.



He lives with his caregivers - his 85 year old wife and his 60 year old daughter - are at the end of their tether/patience and are starting to concern me with their comments ("I wish he would die, I can't live like this for the rest of my life" etc).



He is a 24/7 commitment. He and his wife have savings but don't want to put him in a care/nursing home as all of the reviews for anything local are terrible and they are concerned he won't get the right care. They also don't want to throw away their life savings on care.



Just to give an example of what they are dealing with every day:



1. Due to his immobility, he needs lifting and transporting using equipment every 4-6 hours for circulation reasons. This involves both of them lifting him (he is 220lbs, they are both around 150lbs). He gets very stressed and anxious as he hates being moved due to the main it causes so often moans/cries/shouts.



2. He has infrequent delirium. Some days he gets very bad - hallucinations, slurring his speech, forgetting names/faces etc and thrashes his arms. Some days he is better, stays quiet and you can hold a brief conversation. When he is delirious he cannot follow instructions.



3. He takes water tablets, wears compression stockings etc and has frequent urge incontinence due to a prostate issue. He normally shouts if he needs help. Sometimes it is just a few seconds notice. As he cannot urinate standing up, he has to urinate into a bottle whilst sitting and due to his "aim" always missing and the urinate sprays back at him and all over himself and his chair - which needs cleaning up.



4. He has to urinate multiple times during the night. He wears adult diapers/nappies with pads to try and deal with this, but hates the feelings of urinating on himself and being wet. He cries out and shouts in the middle of the night loudly for help - or presses his help buzzer/alarm. It just isn't right that my 85 year old grandmother is having to get up 3 times in the early hours (3am!) to clean him up/change him.



5. Due to circulation problems/water tablets his feet are very swollen and have to be raised to reduce the swelling. He finds his uncomfortable whether in a chair on on a bed), so has to turn over (equally uncomfortable), which means he awake longer.



6. He just sits in his chair all day when wake -doesn't try to talk, doesn't like to eat much, is stressed himself about both his caregivers as he gets embarrassed and doesn't like upsetting them. He doesn't watch TV, doesn't read just sits and thinks and sleeps.








They have tried bringing in carers, but found them very intrusive and weren't around when need. The most that care companies will allow their staff to visit is 4 times a day maximum - but even with 4 visits, he would often urinate/soil himself minutes after they left and would be sitting in his own filth for hours until the returned.



His daughter is particularly concerned that if they send him to a care/nursing home he will have a similar situation - having to wait hours to be cleaned up etc.



I don't know what to do. They are just both at the end of their tethers and severely stressed and I'm genuinely worried his wife will attempt to smother him with a pillow when she finally does break.



Things I think would help if they could find a solution:



- A way for him to sleep through the night without shouting for help in the early hours because he doesn't want to lay in a urine-soaked bed/diaper etc. This would allow his caregivers to actually get some sleep.



- A way for him to urinate whilst sitting down that doesn't result in him still getting his chair and himself wet and need cleaning up/changing again





Any input would be much appreciated.

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If they steadfastly refuse to place him in care where he will get 24/7 care that he needs contact a Hospice and from what you have written I am sure he would qualify.
There would be a Nurse that would come 1 time a week.
A CNA that would come at least 2 times a week to bathe him or if possible shower him.
The would get all the equipment that they would need to SAFELY transfer him. Probably a Hoyer Lift.
A Hospital Bed that would make caring for him easier. It can be raised and lowered so changing him would be safer and easier. Changing bedding would be easier.
And a Volunteer could come in and sit with him while they get a break.
AND.....
On Hospice they can request RESPITE care.
He would be placed in the Hospice In Patient Unit or a close facility for a few days so that they can get a break. He would get cared for. They get a break and then he can return home. this would be covered by Hospice Benefit and Medicare/Medicaid covers it. This would be a few days..unless they decide that the care that he is getting is worth having him not at home with them being the sole caregivers.
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This is not sustainable as 24 hour caregivers. Right? He needs a SNF since awake caregivers work in shifts. The life savings needs an elder law consultant so that wife does not spend everything down. The assets need to be divided. Medicaid and SNF is the answer, but they need to make a long hard look at their choices. There is no in-between other than some Medicaid at home care which is quite limited but will give them a break to get out of the house
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Reply to MACinCT
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