Care at home for bedridden dementia mom; is this feasible?
If you have or are currently caring for your bedridden dementia parent at home, what advice can you give? Is this feasible? Any regrets? Mom is now past the angry stage but the nursing home keeps her heavily sedated because they can’t tend to her every need and (I’m guessing) have to keep her quiet for other patients. I’m afraid they are taking advantage of no visitors (Covid) and sedating all patients to make their jobs easier. Recently admitted to the hospital, she was allowed an overnight visitor. Doc agreed not to overmedicate her since I was there for her care. It was the first time we could touch each other since February....and I must say it was very healing for both of us. She was awake for 4-5 hours at a time and although she can no longer say complete sentences, it was the best visit we’ve had in 9 months. I WANT TO BRING HER HOME WITH ME. What’s your advice?
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!
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.
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.
Mom used to have the most horrible outbursts and was so hateful to everyone around her. It was easier to have her in a NH then because when she had an “episode” we could leave before hurt set in and before she started throwing things, including her fists. My brother who lived in town was faithful in seeing her twice a week and I saw her once a month due to the 2-1/2 hour drive and other life events for our children (but twice a year I stayed overnight with her). Now she is back to her sweet self except when she has UTIs. We are afraid she doesn’t get enough fluids these days as she can’t reach or handle the water glass. When she was in the hospital, she drank a lot because I was able to get it to her.
You’re right—a pros & cons list is the best and a lot of prayer to make the right decision. I’ve read once a patient is bedridden, the prognosis is roughly 2-1/2 years. If that’s the case, I also need to make sure my husband will be supportive for the long haul.
How did you handle your own needs? Shopping, appointments, illness? How did you handle his outbursts? Does a hospice nurse decide if a hospital visit is necessary or does a physician ever make house calls?
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.
I thought about that this morning...what would happen if I got no sleep at night??
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
My friend is a hospice nurse and I will ask her what options (help and/or respite) are available from hospice. I want to know as much as possible and get opinions before I present this to my husband. He was open to this before, but I need to make sure my decision is based on facts and not feelings.