Trying to make a decision. What do you all think?

24 hr care is a lot to take on so think long and hard before you take this on. Not only the 24/7 but the all encompassing dementia —that will be progressive.

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.

Think long and hard about taking on a patient who needs 24/7 care. I am in the best of situations - consultant, with flexible hours; enough funding; a suite; CNA who comes in- and I will tell you, I'm about dead. Between the constant monitoring (baby monitors all over the house) the medical dilemmas, from falling to skin tears to severe BP issues; to keeping the medical paperwork organized; the side bed commode (he had diarrhea this weekend - it about broke me and my husband), the constant threat of falling (I depend on my two sons to help me help him make transitions - and he still ended up fracturing his hip); the gurney transports, and the constant constant constant ringing and calling with medical professionals, I'm about broken. This is again, with a flexible job, a husband, three children, a CNA and home health care support. I'm extremely independent, and have never been a wimp about work or challenges.  I'm on low-dose xanax, I've gained weight, I feel in a perpetual mental fog (both literally and caretaker FOG), and I feel like the entire household is in some kind of purgatory where we all circle around my dad. I fear that my children - after getting to enjoy my dad for several years living with us- have had those memories shredded in the last year. We're caring for him at home because we cannot find a nursing home opening for a male within a 30 mile radius. You can get 24 - or even nighttime- aids, but lo and behold, I discovered I don't feel comfortable having strange people (particularly because we probably need a male) just sitting in our house for hours at night -- my husband works nights - to make sure dad is okay. There just isn't enough to do, and I'm suspicious enough that I don't want anyone rifling through our house. Soooo. I just told the home health social worker to expand the circle to 50-100 miles. He cannot do assisted living. The group homes cannot deal with his challenges - cardiac failure, kidney failure, fractured hip, low BP. So we wait and take care of him each day. But it is a serious challenge. He is/was a very good dad to me, so I do not have resentment in that way toward him. He is sorry he has "become a burden." But I do have frustration that churns into rage, under the perfect storm of medical issues and crisis. I had no idea it would be this tough. No. Idea.

Your mother will go downhill if she goes to a nursing home. Guaranteed. And she will also go downhill if she doesn't go to a nursing home. Also guaranteed. That is the nature of dementia. It progresses (gets worse), always.

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.

You can have her evaluated by a different hospice company. They may make a different decision

Dat1917, Sunflo on the previous page brought up a good point regarding taking care of your Mom at home. You would need to set up your home like a mini nursing home with a variety of different nursing home needs. Eventually you will need to bring in caregivers to help you but only if your Mom can budget the cost.

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.

24 hr care is a lot to take on so think long and hard before you take this on. Not only the 24/7 but the all encompassing dementia —that will be progressive.

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.

As far as I know, it's up to the doctor, not the hospice workers to make the decision.

Dat, I know from your previous questions that you are trying to do the best for your mom that you can. But I sense from those questions that you’re not really on board with much of what the medical professionals who also care for your mom tell you. Asking questions is wonderful, and required of us when we caregive for someone who ca t ask their own questions. But we need to listen to their answers. When the docs would tell me things about my mom, I’d go home and do extensive research on what they told me. 99% of the time they were right. Our friends on this board are right about Hospice. Palliative Care might be something for you to research. Hugs...

That lexapro not Lexmark.

My mother was in rehab for a uti infection then she got a 2nd uti infection while she was in rehab. She is 95. Everybody told me she was ready for hospice even the hospice workers but she improved so much in one day they couldn't get over it. I do not think assisted living will take her. She cannot walk and trouble controlling her bladder needs adult diapers changed. Help getting dressed. She needs complete care. I was doing that until a month ago. 4 days ago she couldn't even eat on her own and all she wanted to do is sleep that why I thought she was getting towards the end of her life. Dr's told me she needed hospice. That why I thought that. She went down hill when she went on Lexmark she is off of it now but still gets confused. Case worker says she is going to have good days and bad days.

People can need 24/7 care but don’t necessarily qualify for Hospice. If you mothers doctor determines that she has 6 months or less to live he/she can refer her to Hospice.

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.

Dear Dat1917,

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.

Needing 24-hour care and qualifying for hospice are two different things. Hospice generally means a person is coming to the end of their life. A person can need 24-hour care for years and years with dementia or Alzheimers.

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.

Why do you want hospice? Is she dying?

There are plenty of people who need 24/7 supervision that are not dying therefore not eligible for hospice.
 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.