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 She is now totally incontinent, wheelchair bound, has to be fed and is totally withdrawn.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
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.
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.
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.
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 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!
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.
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 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