My mother released from rehab a week ago. Should never left rehab. Came home, got worse, went to hospital. They let her stay there until we make a decision. My mother has vascular dementia. Just found out about that. She was going to come home with hospice but because she had a good morning, hospice won't take her. They think she should go back to rehab or long term care. Mom got really bad in the month she was at rehab. I really want to take her home but case worker said she needs 24 hrs care. If she needs that much care why won't she be eligible for hospice? She seems to get worse in the afternoons. I know she doesn't want to go back to rehab. Physical therapy will do an evaluation on her tomorrow but she hasn't been out of bed for a week. I am afraid she will go downhill if she goes to a nursing home. What do you all think?
Check with others on this forum and local agencies for services and hours you need for care. It’s not inexpensive. Actually memory care is cheaper for my mom than 24/7 care in her home. It’s safer for her and her meals, activities, laundry, outings are included. I’m free to live my life and visit without day to day caregiving responsibilities and managing 2 households.
And, btw, with hospice you still have to provide 24/7 care. Hospice workers visit for a few hours a week. They are awesome and I highly recommend using their service when the time comes, even if Mom is in a nursing home then. But they do not fulfill the 24/7 requirement for care.
There are some definite advantages of a nursing home over at-home care. At-home care can often provide "assisted living" levels of care, but a 24/7 skilled nursing level is a lot harder. Even if you have expensive 24 hour nursing help there is only one of them there at a time. In an NH there are as many people as a particular crisis takes. If a drug is prescribed by a doctor it is available very quickly. The resident doesn't have to be dragged out to a doctor -- the doctor comes to her. If she develops a uti or other infection it can be detected early and treatment started. She is showered, nails clipped, helped dress, clothes washed, meals prepared, etc. She has other adults to interact with, many of them in her age bracket and at her cognitive level. There is live entertainment, church services, bingo, crafts, gardening and baking activities. No one has to do any of that, but everyone has the opportunity.
We brought in help to enable our mother to stay in her apartment as long as she possibly could. When that got beyond her (she had dementia and mobility issues) she moved in with my sister for a year of "assisted living" level care. And then she went to a nursing home. We were amazed that she actually perked up there. Her dementia progressed but after a settling in period she became content there. We 4 sisters visited each once a week, and brothers visited occasionally. She had plenty of family company. And that is another advantage of a care center. You can visit as often and long as you care to, and then you can go back to your life. You are not worn out with the day-to-day hands-on care. You are less likely to be resentful and angry. You still need to keep on top of things and advocate for her, but you can let others to the daily tasks.
I suspect that the dementia diagnosis is still new and somewhat of a shock to you. Try to do as much reading about it as you can before you have to make a decision. Your mother may not be eligible for hospice yet, but she is never going to recover. The disease will progress. Caring for someone who has cognitive impairments is really a different kettle of fish than caring for someone with other kinds of illness. There is no way to know what you are getting into until you experience it, but reading about it can help.
My best wishes to you as you make this tough decision.
Better to get Mom into some type of Memory Care while she can still learn her way around the building, learn who are the Staff, and still be able to meet new people. If you wait too long, there could be long waiting lists. If you find the cost isn't within your Mom's budget, then get Mom to apply for Medicaid [which is different from Medicare]. Medicaid will help with all the costs.
Check with others on this forum and local agencies for services and hours you need for care. It’s not inexpensive. Actually memory care is cheaper for my mom than 24/7 care in her home. It’s safer for her and her meals, activities, laundry, outings are included. I’m free to live my life and visit without day to day caregiving responsibilities and managing 2 households.
Ask her doctor to do a Hospice evaluation.
Many elderly folks can go for years with no quality of life but not be candidates for Hospice.
I'm so sorry, I know you are trying to make the best decision for your mother. Hospice is only meant for patients that have less than 6 months to live. They must think your mom is well enough to go to rehab or a nursing home. Yet, I know no one wants to go to rehab or a nursing home.
If you want to take her home and are able to arrange for caregivers or nurses to look after her at home, I might go for it. With my own dad, I had taken a short leave from work to help manage his care. But it is a lot. I failed to realize how much I was taking on and it did lead to anger and resentment on my part.
I know others will have more to share.
What are your mom's medical issues? Why was she in rehab? If she needs 24-hour care, that would be a LOT for you to take on at home unless you can afford 24-hour private duty care, which is incredibly expensive. If she's getting worse in the afternoon, it sounds like she's "sundowning". Google that term and you'll find lots of information about it. It typically accompanies certain forms of dementia.
There comes a time where you have to do what is best for your parent, not necessarily what they want. So mom might not want to go into long-term care, but that may be the safest and most cost-effective alternative for her. Spend some time on this site to see what it's like to have a parent living at home with advanced dementia, to see if you're up for what it will require.
You mention a new diagnosis of Vascular Dementia and that she is worse in the afternoon, which is know as Sundowners, but you don't mention what landed her in rehab in the first place. Perhaps your mom may not a need nursing home level of care but could benefit from assisted living or memory care? In some areas there are also smaller, group home type residences that are more family like.