Care at home for bedridden dementia mom; is this feasible?

Discuss with spouse and make sure he is on board. If he isn't, don't do it! It IS going to put a huge strain on your marriage.

All I can say is that it will AGE YOU rapidly. If you are determined to do this, here is what you need.

If you can get a refurbished Hill-Rom hospital bed with "lateral tilt", that will help tremendously with being able to change her, the linens, etc. There are places all over which sell these beds refurbished, (or you may be able to pay out of pocket above what Medicare offers for a standard hospital bed). It is worth it to get one of these fully automated beds.

Not every hospice service is the same. Research and find out what is the BEST in-home service. If possible, get one that WILL come and bathe her several times a week. They should provide adult diapers too.

Dependable sitters are hard to find. Ask around and get several lined up. I had some private sitters for my aunt. 3 were fantastic, 1 was AWFUL.

Realize and accept it will be difficult and exhausting. Expect exhaustion and anger!

Well, hands up, I did it. From rehab the choice for discharge was between a nursing home 35 miles away, or home with a full package of care.

The package of care was a slightly romantic idea - 4 x 2HCA visits each day turned out to be 1 HCA, once a day, + me - but in truth looking after an immobile post-stroke mother was a lot less stressful than looking after a mobile pinball mother who wouldn't use her call button.

Important - you should ask your mother if she wants you to do this, you know. First things first.

Assuming it's a yes, you will need:

a detailed care needs assessment
an OT to advise on equipment, adaptations and environment
regular, reliable support from *somebody*. There is only one of you, with just the two hands, and there will be times and tasks you cannot manage alone.

I would not have survived without:
a laundry service to collect and deliver (bedlinen especially)
continence supplies deliveries
grocery deliveries
a good GP and allied professionals

What will you do if she does not sleep at night? You cannot survive broken sleep indefinitely. It doesn't have to be a deal-breaker but you do need a plan.

I cared for my bedridden husband who had vascular dementia, and many other issues in our home for the last 22 months of his life. He was under Hospice care, but that only meant a nurse coming once a week to check his vitals, and an aide to bathe him twice a week, so really all his care fell on me. I did hire an aide to come in the morning for an hour, to put him on the bedside commode, so he could poop, as that was much easier than trying to clean him up while he was in the bed. Was it difficult? Of course it was, but my husband had never wanted to go in a facility of any kind, and wanted to die at home, so I did whatever I had to do to make sure that happened. It will be 3 months tomorrow since he died at home, and although it was hard and very stressful at times, I would do it all over again for him, as it gives me great peace knowing that he got his wish to die at home.

Now all that being said, you have to do what's best for you(first)and your mom. I believe you can do whatever you set your mind to, but just know there are no easy answers here, and either way you go, it will be hard on you, so pray about it, and perhaps make a list of the all the pros and cons of bringing her to your home or staying where she's at, and see what those lists look like. You will then have a better understanding of which way to proceed. Wishing you the best.

My advice would be to not bring her home. Although it would initially be comforting to have her near you, I think you will quickly find yourself in an overwhelming situation. 24 hour caregiving is very hard in all aspects, mentally, physically, emotionally. You would need at least 2 other caregivers to be available to assist you, possibly more.

Hospice in the home leaves all the care to the family. The Nurse comes maybe 3x a week to check vitals but should be available by phone 24/7. An aide will be provided for bathing but again only 3x a week and only for an hour. You can ask for more time to run an errand or two or just get away but thats has to be planned in advance to adjust the aides schedule.

You will need to change her deoends, clean her up, change soiled linens while she is in bed. Feed her. Be there 24/7 unless u hire help.

Caring for her will be very physically demanding, as well as that she will need someone with her 24/7 so it will be mentally challenging. You should only attempt this if you have lots of community supports - medical care (is she ready for hospice?), friends of family that can share the load or deep pockets to pay for extra hands. I couldn't manage it, my mom spent her last months in a NH but of course I was able to visit, I'm sorry you are not 🙁

Was she allowed an overnight visitor because she needed overnight monitoring? She was awake 4-5 hours through the night? How would that work if she were in your home?

It’s clearly a very difficult situation. Are you sure that your mother is ‘past the angry stage’, or could it be due to the sedation that you think is happening? Caring 24/7 is clearly very difficult. When it is combined with a total lack of appreciation, plus blaming and worse, many people find that they cannot cope as carers. If you make the decision that way, can you arrange in advance some respite for you, so that you are not under an enormous pressure that means everything goes wrong for both of you?

I don't have the experience to give advice, just a knowledge of the problems that crop up so often on the site. They usually seem to say that it needs a sweet personality on both sides, some respite, and an 'end clause' so that you aren't committing many years. That was what worked for me and my mother's cancer death.

I hope that others can give you more specific advice on 24/7 care.
Lots of love, Margaret