How long will the final stages of dementia last?

Is hospice involved with my mother in assisted living because she is close to dying?

DementiainND: I did see your additional post further down this thread. I am sorry to hear that your mother's dementia is progressing. Prayers and love sent.
Llamalover47

My mom also entered a nursing home walking and able to eat independently. It was awful to see but we also knew it was unsafe to stay where she was. It’s hard not to blame the facility and some of that decline is the result of life styles in nursing homes and assisted living facilities. They are not staffed to deal with the time and risks it takes to deal with unsteady folks. But I’m totally confused with their attitude about hospice. My mom’s facility actually came me recommending hospice three times over her 12 year stay there. And three times hospice services were discontinued when it appeared that she was going to live on. But this was between 1988- 2004 and things night have changed. I agree that you should involve whatever local agency oversees the use of hospice in your area. They may be concerned that her life expectancy doesn’t meet criteria for hospice.

No hospice? I would check with the Area Agency on Aging in your state. Please. That does not sound legal. Know your rights and that of your loved one in the facility.

Are nursing homes allowed to keep Hospice out. I don't think that is right.

Everybody ages differently. There can be ups and downs and periods of leveling off. Are they giving her medications that might be causing her to be withdrawn? You can talk to her doctor about this.

It will depend on the type of dementia and on the patient's physical condition. Vascular dementia advances more rapidly than Alzheimer's. However, very often they exist together in the same patient. On the patient's side, it depends on his/her age and the presence of other medical problems. A relatively young patient with a healthy heart, kidneys, lungs and liver will probably last 15-20 years with Alzheimer's. A debilitated, old patient suffering from kidney or liver failure, with COPD, heart failure, etc. only a few years, Now, if the Alzheimer's is combined with vascular dementia, even much less.

It's possible the NH is not certified to provide the kind of care that Hospice does. The NH where my mother was wanted to discharge my mother because she was not eating. She intentionally stopped eating so she could starve herself to death. They said they could not let Hospice in because they were not certified for that kind of care. So my brother had an amublance return her to her home where she died three days later as she hoped she would.

Often when people with dementia get moved to a nursing home their dementia advances very fast and they decline very fast. You mother could very well level off though.
My last caregiver position was for a woman with LBD. Over the first year I worked for her she went from waking with a walker and using the toilet to being wheelchair bound and in diapers. She could still talk, feed herself, and be taken out. Then about eight or nine months of being in such condition, she became bedbound and non-verbal. She also had to be spoon-fed and given a baby bottle because she couldn't remember how to drink from a straw. Her medications had to be in liquid form because she couldn't swallow pills anymore.
Hospice at home was brought in and they were convinced she would pass within a few weeks or a month at the most.
She graduated out of hospice because she wasn't dying fast enough for them. She lived for two more years in the condition she was in. It can happen.

I have had a NH tell me they could do anything hospice could do and wanted only the hospice they preferred to work with. So I suppose other NHs also have this policy. I did not choose that NH. Many,, perhaps most people die without hospice but as you say, the services are not only for the patient, but also for the family.
And yes, things can go really slow for a long time and then suddenly the LO is in critical condition. I sometimes wonder if at advanced age it is all just a fine balance?
A fall, a gastro issue, dehydration, UTI, etc. can quickly escalate an already fragile system and then they are gone.
I am sorry for your moms decline. Do come back and let us know how you are doing. We care.

I feel I need to clear up a few things.

I called hospice to get something going and they were the ones that told me they are not allowed in. I think the issue is it is a small (between 30 and 40 patients) NH in a small ND town and, if you know anything about the people here, they are fiercely protective of their control.

They do have a compassionate staff that will help with end of life. We have discussed it and it is really up to me and my dad as to when to pull meds and there are orders in place for no feeding tubes or other things that would prolong her life. They call me every time there is even the smallest change in her condition or if they stop, start or switch any meds. I just really wanted some of the other things hospice can offer, like emotional support.

I am going to ask for some more tests, such as a urine test for uti if her bp doesn’t start going down. I will be checking in again today.

Thanks everyone for your kind wishes and thoughts! I don’t want this to be the start of the end, and yet, I hate for her to have to live like this. Such a vicious disease!

That's completely barbaric to not allow hospice in. My mom's place allowed the nursing home doctor to be her hospice doctor, too. Maybe that's what's the problem here -- your mom's doc wants the pay or doesn't want to hand over care of your mom to another guy. It hardly matters, since they never visit their patients but about once a month anyway.

In my mom's case, it all worked out fine until Mom developed gout from drinking nothing but Ensure for months. The nursing home doctor pooh-poohed that diagnosis, so the hospice nurse went over his head to the hospice company's doctor, and he ordered the test to determine that it was indeed gout. Once the test results confirmed it, the nursing home doc got in line and prescribed the proper meds.

If Mom has no quality of life, and her place is not seeing to the compassionate care of a dying patient (meds to keep her comfortable), I'd consider moving her to someplace that will.

I am with Glad here. Is it that Hospice is not allowed in because of COVID? If not, then I have never heard of Hospice not being allowed in. My Mom had it in her last week and others on the forum have mentioned a LO on Hospice in a NH. If they are not allowing Hospice in, do they have the ability to provide "comfort care". I would talk to the doctor who is affiliated with the NH. He writes the orderfor Hospice. If that doesn't work, talk to an Ombudsman to see if the NH is allowed to deprive Mom of Hospice care.

My Moms decline was monthly. But the last month of her life it happened quickly. By that time she was in her last stage of the Dementia. She started humming and each day it got a little louder so she was medicated. Eventually, she closed her eyes and would not open them. Then, she would not get out of bed. After a week being bedridden, she could not swallow so Hospice was called in. Six days later she was gone.

Are you certain about not allowing hospice in? That does seem strange. Were you told this when she was admitted? Maybe that was a Covid related rule that has since been relaxed. I would ask why this is the case.

My heart goes out to you dementiain and Ann and everyone seeing their LO going through this
my dads decline has also been rapid of late, he is now in a nursing home since his last hospital spell at the beginning of the month as his needs changed, I can’t believe how quickly it has happened.
i wonder like you how long this can go on. It is the cruelest of things. I feel in the last month his decline has been so rapid, like you I ask is this normal.

im so thankful for this forum, Sending love to you all and your LOs xxx

We are on the roller coaster right now too, and you have all the sympathy in my heart.

Some days I go prepared to say goodbye, and some days, like today, we can share a silly conversation and a few giggles.

Naturally, I’m between tears and giggles all the time, and I’m sure you are too.

I try as much as I can, to stay right with her, in her moment, when I visit. I can’t let my mind wander to Christmas Past, or how much she loved my grandson, or her endearing tendency to surprise me with something she’d hear me mention, no special event necessary, just because she loved surprising people and wanting to make them happy.

Her deterioration was very similar to your mom’s. Until about Thanksgiving, peaceful and content, until as of now, bed bound and often not waking up at all when I’m there.

A tough wait, for all of us who love them. Trust me, you’re not alone.

Why on earth would the SNF not allow hospice in, I've never heard of such a thing?! How is your mother supposed to get comfort care during her end of life experience w/o help from hospice?? My mother just went through this, at 95, and w/o hospice on board, I shudder to think how that end of life experience would have played out, to be honest with you. If I were in your shoes, I'd move my mother into a different SNF that DID allow hospice in to help, b/c why should an elder be allowed to pass away without comfort care in place to help them?

My mother had an ABRUPT downturn in her health and dementia during the last 6 months of her life, but a HUGE downturn in the last month. She just started slumping over in her wheelchair, no matter how many times the staff would help her back to an upright position, she'd immediately slump back over again. She was having neurological problems, we think, probably TIAs or larger strokes, but diagnostic testing isn't done with hospice on board (no hospital trips, thank GOD), so we weren't sure what was happening exactly. But one day, she just went to bed and died a week later, remaining semi-comatose in bed the entire time, save for one short rally that first night where she got up to watch TV for a couple of hours. Her dementia had gotten very bad during that 6 month period of time; she couldn't understand language, cut down her eating (her favorite thing to do previously), was taking more naps in her wheelchair, just very disoriented and 'out of it' in general. She was having a very hard time understanding me, so I had to use short sentences; she stopped being able to use the phone/make calls, etc. The doctor is sure that heart failure is the true cause of her death, but of course, dementia was a huge contributor as well.

It's hard to say how long your mom has left to live; that's where hospice is VERY helpful, too; they have an instinctual way of knowing those things that the rest of us are clueless about.

Wishing you the best of luck with a difficult situation. Sending you a hug and a prayer for peace.

My mom was as helpless as a newborn for the entire 18 months she was in a NH and she was 95% wheelchair bound and subsisting on thickened fluids and pureed meals for a very long time before she moved there, so the answer could be "far too long".

Hi!

I send compassion to you and your mother.

You know, for sure you know:

No one can guess when someone will die.

Your mother’s doctors can guess better than any of us. Doctors’ guesses are also often wrong (guessed too short, or too long).

You also know that people often go downhill fast in NH (I’m not referring to cases where going downhill would have happened anyway).

I mean - sometimes - going downhill is directly caused by being in NH. The reasons aren’t always the same:
—sometimes neglect
—sometimes loss of will to live
—sometimes because mentally you feel you went to NH just to wait to die
—etc.

I wish for your mother to be well, and you too!

We all try our best.

A lot of things can’t be prevented.

Again, my compassion to you and your mother.

Poodle

I would check in to in-facility hospice through Mom's doctor. This is so much more rare now (unfortunately) but if it exists in your area then that would be best option. Would prevent anyone coming along with NG feedings and PEG feedings and such that could prolong this misery so much longer. Otherwise try to find in facility care that WILL allow hospice in.
And pass your question on to your Mom's doctor, asking for, at the least Palliative Care. You doctor knows your Mom best, and will have some "guess" and it is only a guess. You would be amazed how long that heart can just keep pumping when all else is gone. Each patient is pretty much as individual as his or her own fingerprints. Wish I could be more helpful in giving you some idea.