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My mom is in a nursing home, moved there in June of last last year, and seems to be going downhill so fast! She was walking, speaking in sentences, eating on her own, dressing herself, going to the toilet on her own. She was having some urinary incontinence and shuffling, leading to falls. Also very confused, but still recognizing close relatives. She is now totally incontinent, wheelchair bound, has to be fed and is totally withdrawn. But most of that happened in the last month or even week. Is this normal? I knew we were going to lose her, but it’s suddenly in hyper speed. Or will she level out a bit and last longer? Not that I want her to. Her life is nothing now. She is still eating, when they feed her. And unfortunately, her NH does not not allow hospice in. I love the staff and I’m glad she’s there but I wish I could use hospice to fill in the gaps and get more info.



Anyway, just wondering

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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.
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DementiainND Mar 2022
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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.
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DementiainND Mar 2022
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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.
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DementiainND Mar 2022
Thanks for the info. Unfortunately her doc works with the nursing home, so I don’t think that will make a difference, but her orders already say no feeding tubes and things of that sort. And they have been very agreeable to all of that. It is a small well run facility and I have confidence in them. I will just see what they do offer in the way of hospice type care and info. Appreciate you getting back to me.
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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.
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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!
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lealonnie1 Mar 2022
Who at the NH will administer morphine & Ativan and other narcotic type meds when your mom needs them and make the decision about when to increase dosages and frequency? THAT is the question, and a tricky one at that. That is what compassionate comfort care at end of life really means. Pulling meds she takes is the least of it. It would always be the 'nursing homes' call not to allow hospice in, which makes no sense. If they want control so badly, then they need to have a plan in place to ACT exactly as hospice WOULD act since they do not allow the organization inside to care for their residents! How is your mom to get a hospital bed, mattress, wheelchair, incontinence supplies, meds, and everything else that is paid for 100% by Medicare when hospice is involved? Is the NH going to provide ALL of that FOR you and do all that hospice does, and bill Medicare? Including a CNA to give mom bed baths when needed? I doubt it. THIS is the problem in a nutshell! For your mom's sake as well as yours, I hope this nursing home DOES act exactly as hospice would, including doling out all the comfort meds and getting her all the necessary supplies to make her transition as smooth and painless as possible.

Vital signs often remain perfectly normal until death is imminent; I saw that twice with both of my parents. Neither of them had low BP or a bad heart rate, etc, until they began the death rattle breathing pattern 12 hours prior to passing. Only THEN did their vital signs begin to plunge.

My mother was incontinent for years with her dementia; it had nothing to do with end of life but with dementia which often brings incontinence with it.

Sending you a prayer that all works out as best as possible with this situation. A hug too.
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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.
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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.
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Judycares Mar 2022
I too am grateful for your response. My husband has early vascular dementia...in addition to heriditary polyneuropathy, cardiac amyloidosis, and central sleep apnea with cheyney-stokes respirations. (The brain signals that tell the muscles that control breathing stop firing and he has periods where he is not breathing...also called the death rattle.). Clinicians treat symptoms, but rarely give any insight into what to expect about progression or mortality. (Even when you ask.) I for one, would appreciate that information.
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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.
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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.
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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
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DementiainND Mar 2022
Thank you. I know no one can tell me what I really want to know. Doesn’t change the wanting, though, does it.🙂 I appreciate your kindness.
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