So in the hospital, my mother was in kidney failure. The last couple days after stopping vancomycin for about five days, her GFR had come up to 19. That’s the most recent Number and then they stopped drawing labs because we placed her own Hospice. We consulted with palliative care team. They wanted to do a feeding tube and we said no. They said she had advanced dementia. That was unmasked by her hospital day, etc. So we went with comfort care. She spent two extra days in the hospital because there were a lot of hassles with the transport here to a local skilled nursing facility. But we got her in there late yesterday evening.we went to see her today, and she was sitting up in her wheelchair, but calm. They are giving her a scheduled dose of Ativan and she’s been nothing but easy and pleasant. But she went from failing a swallow study at the hospital to easily holding her own cup, and swallowing punch that has been thickened. She still doesn’t really eat. Hospice nurse told me she fed herself a few spoons of purée breakfast. We were there at lunch and it does not seem like she ate anything. We were briefly called away to the business office, but upon coming back, the food looked untouched.
she is much more verbal than previously. Her speech is no longer garbled. She does say some things that are still not true, like referencing being at that facility before when she’s actually never been there. Or looking out her window at a pond and saying there was some sort of animal with a made-up name. Or holding onto her stuffed dog and kind of enjoying it like a child would yet not asking about her real life dog. She has a Foley catheter that is draining some tea colored urine. She had urinary retention at the hospital, which is why she still has a Foley.What if she gets taken off hospice? Now we’ve sat here and only halfway treated her spinal osteomyelitis three weeks out of six of the IV antibiotics. But she got taken off of them for renal failure and now she’s on hospice.what if her brain turns out to be just temporary delirium and not actual advanced dementia, which is what they kept saying at the hospital. And I kept telling them she always gets wacky cognitively with hospital stays. Admittedly this was the very worst. I’ve ever seen her.
what if she no longer qualifies for hospice, passes as normal cognitively, starts demanding to go home, does not qualify for long-term care, Medicaid, etc. I made a self-pay payment today from her account for the last two weeks of September. I can’t even imagine the trouble that would happen if she realized that we had spent her money on her staying there. Tomorrow they are giving her the BIMS test. But I am super unnerved because she looks a whole lot better than she has been looking. She is still not yet walked since being in the hospital. Has not attempted to probably due to the happy drugs Hospice is giving her. Oh and she also got off of oxygen while still at the hospital. Her stats are in the low 90s, so I guess when the pneumonia resolved her oxygen levels rose.she has been some level of mentally altered since about June 24. But today she looks so much better. It’s a drastic difference from the last few days.
Whatever happens , you remain that she can not go home and that you can not care for her . I doubt she will get so much better that she could actually go home .
Remember delerium uncovered the dementia that is there . I have to say some of these mini cog tests are useless depending on the type of dementia .
My mother’s memory was still good with vascular dementia . However her executive functions were bad , her reasoning and decision making abilities bad . She was not safe home alone .
enjoy her pleasant demeanor while it lasts.
Your mom qualified for hospice because she is dying, not because she has dementia. It wasn't the confusion that qualified her, it was all the other stuff.
It is VERY common for people to rally a bit when medications are removed. Especially when kidney function is compromised.
Take one day at a time, you can always take her off hospice but, she is never going to be well enough to go home, even if this isn't just a rally. She can't afford 24/7 care and you are unable to provide it, that is what you need to remember when you are worried about the what ifs.
Take care of you during this difficult time.
Try to relax a bit, I know how hard all this is.
Hugs!
I think it is pretty rare for people to come off hospice unless they are doing well at the 6 month point.
Perhaps some of the other (wiser) forum folks can add their input on this specific hospice subject?
I understand how frustrating and even frightening this can be.
My dad (92) is on hospice at his home, and at least twice now he was in bed, struggling and sleeping, for two days straight, I thought for the last time. We called the hospice nurse to come as soon as possible, which was the next day.
I live out of state and the caregiver asked if I would be flying in. My other brother wondered if he should change his work plans and fly in, too. My brother (the POA) who lives near our parents asked if we were all on board with what to do next. We thought this was it. Kind of an all hands on deck situation.
Then the next day my dad was out of bed, at the table watching a documentary, as if nothing had ever happened. The weekend hospice nurse showed up with a ‘why am I here?’ look on his face.
This can be an emotional roller coaster. Good days, bad days, horrible days, questionable days, what just happened? days, am I going crazy days.
We are all thinking of you and sending positive thoughts your way.
I spent eight hours at her bedside, not being able to leave for a minute without her trying to get up. Hospice had placed a concave mattress to deter her from getting up. Didn’t work. The wheelchair that is supposed to prevent her from getting up didn’t arrive. That is supposed to be today.
I went to the dining room with her where she actually managed to get up out of her wheelchair, and I was trying to detain her. She grabbed both of my arms, including my frozen shoulder arm and stretch them out. I had to loudly tell her to let go of me. We were in a separate dining room for people who needed feeding Assistance. Finally a staff member wandered by and got her settled back down. I am 116 pounds and she is 145 pounds. I cannot physically manage her.
I spent some time wheeling her up and down the hall, trying to quell her restlessness. Dayshift turn to night shift at 6 PM. The new night nurse said she was going to look up what medication she could add. They were going to add some morphine to her scheduled Ativan.
She began to look sleepy around 8 PM and I took her to her room. I parked her chair and considered trying to get her in bed when I realized her catheter was still hooked to her wheelchair. But she was suddenly getting up and not following direction to stop moving because her catheter was still hooked to the chair.
I yelled for help and the nurse came and said she was going to get several people to come help. I sat there another 20 minutes or so before finally another couple of aides came.
One of the aids was there from the night of her admission and she seemed really helpful. She looked at me and said I looked exhausted and I said yes it had been a heck of a month. And she told me to go home but they would handle things. The charge nurse really seem distressed. But I could not leave mother side for two minutes yesterday without her, trying to get up.
Hospice tells me the weekend hospice nurse has a lot of psych experience. In addition to trying the addition of morphine, they are going to try a cream called ABH, which is Ativan Benadryl and Haldol. They tell me they’re kind of limited and how much they can give her due to state regulations and such. Hopefully today the better wheelchair will arrive.
when she was discharged from the hospital on palliative care, she was minimally responsive. I think at that time they figured her need for a memory care no longer applied because she was just going to remain bedbound and passed away. Obviously, that is not the case. She ate 80% of her puréed lunch with an aid feeding her yesterday. I’m told breakfast yesterday with bites, and dinner for me last night with bites. I keep saying I’m at my wits end and then something new and more bizarre happens.
I gave the facility a check for $2000 through the end of July with my mother‘s funds. If this doesn’t get lined out, they’re gonna make her go to memory care. Someone mentioned last night we should hire a sitter. I’m trying to make her funds for a bed last. I do have an appointment with a Medicaid elder attorney. She has enough money to pay for a few months, plus about $8000 in bonds in an IRA. I keep thinking I don’t want to spend that money on an aid. I just want her to have a bed in a facility.
My father (no dementia) is on Hospice care for CHF and a very weak heart. He has had some bad days then is perfectly fine the next day. We prepare for the end of life one day then the next day is fine. His 6 months is due in September and I'm worried about "graduating " from hospice. Then do I go back to the same in and out of hospital again. Then take him to all the different doctors again?
I
then there's my mom( in memory care) who is slowly slowly slowly declining.
the rollercoaster is maddening!
But when the end came, it came quickly. She began to get loopy, had started seeing people who were not there. She lost a massive amount of weight over a short time. She stopped eating, was cold all the time. And then her skin became mottled in some areas. The big decline took about two weeks.
If she improves dramatically, enough to go home and to be taken off of hospice care, then be happy for her improved health. If there is no one to take care of her at home, you can ask that she be transferred to a care facility. She will pay out of pocket until the money runs low, then should qualify for medicaid.
She has no reason to be angry that money was spent on her care.
If you are looking for a diagnosis of her cognitive ability, get her to a neurologist. A neurologist can determine whether she has temporary delirium, permanent brain damage, or a progressive disease.
Stop worrying so much. Hospice is great when needed. If she no longer qualifies for hospice care, that's ok. She can get hospice again in the future, when appropriate. There are other care options; Home Care, Memory Care facility, Assisted Living, Skilled Nursing Facility.
Where is your anxiety coming from? Is it money worries? Is it the emotional roller coaster of thinking she is near end of life, then reversing that? Or because you don't know exactly what her status is? I think a neurologist can help you to figure out what's going on with her and determine the best course of action for her care.
I hope that Oedgar23 knows that we all understand what they are going through and empathize completely. I would suggest asking anyone and everyone about the hospice cost concerns, talk to hospice and the doctors about the changes the loved one is experiencing and try to get some good advice, and consult with family members about decision (if possible) even if for moral support. All we can do is do what we can and know that we are doing it with love and to the best of our ability.
My mum also perked up when she was placed onto palliative care (similar to hospice in the US). It was unnerving as I wondered if I'd made the right choice. For a short while, Mum was alert and like her old self, so I was scared that my agreeing with the doctor's decision was wrong.
The palliative care drugs eased Mum's end stage COPD symptoms considerably, but they weren't drugs that she could have had in those high doses long-term.
Mum went onto palliative care because she was dying - her illnesses couldn't be cured. It had nothing to do with her dementia, which wasn't that bad. However, please be prepared - Mum's dementia worsened rapidly in the last weeks of her life, as she grew weaker. She still remembered me and other close family, though, but she became almost childlike.
Palliative care, or hospice, provides comfort care only. It's for people who cannot get better. It enables them to die peacefully and with dignity, rather than being kept alive artificially when they no longer can have any quality of life.
I was grateful for palliative care which meant my mum's last weeks were pain free and comfortable, so she wasn't scared. It gave me back my mum, briefly, before she went downhill suddenly and slept her last week away.
I don’t know what to say except, hang on for the ride.
I see it in my mom at home on hospice. One day she out of it and then the next she’s smiling and talking.
Our bodies are incredible and do some strange stuff!
Prayers for you both for some peace and answers.
I believe God has a plan and I just trust in Him. I don’t know if you believe that or not, but it gives me peace. Take care.
You will see small rallies and then nothing..it's an emotional roller coaster but she will never "get better". If the determination was made for hospice (end of life/comfort care)
Then that is what's needed to keep her pain free and comfortable. I wish you peace - this is a tough time.
She does qualify for Medicaid and can go into LTC. As you know, if she's holding any assets like a house, bank accounts, or insurance policies they will have to be liquidated and spent down on her care before Medicaid will start paying. Any LTC is going to take her monthly income as well. After her assets are gone, she will be Medicaid approved.
It sounds like your mother will improve enough to get released from hospice so Medicare is not going to pay anymore. She needs to go into a LTC facility. So communicate with the hospice people about how to get her placed if this happens. They will help you.
When her apparent pre existing dementia was uncovered by this hospital stay…. That was the final straw for me. I haven’t liked her in YEARS anyway. She abused and neglected my (absent) brother and me. Ive just reached my limit on what I can do for her. I will support in a facility. That’s it. But when she rallied and became violent, the second SNF was pressuring me to hire a sitter… I thought I was facing g more of her mental illness , anger, and now dementia… yes it panicked me. There is a whole horrible history that I know you’re not aware of.
And what an experience It’s been. Learning first hand that repeated delerium episodes often point to hidden but somewhat compensated dementia. This is her 4th episode, except she catapulted straight to end stage dementia this time.
I’ve got nothing left in me. I’ve not been to the SNF to see her in days. I just let the hospice nurses update me. But for me, there is no enjoying my time with her.
What you are experiencing has happened to others.
You've done and been through more than enough. Step back.
This isn't your fight; let someone else deal with whatever the next stage is.
If your mum deteriorates, only sit by her side if you think it will make you feel better, or to give you closure.
If your mum rallies round, let whatever agencies that deal with the aged place her somewhere suitable. You've done your bit.
I hope that you can now move on with your life and avoid getting sucked back into the vortex of your mother's.
Wishing you all the best.
People tend to leave this world not much different than they have been their whole lives. It is demonstrated by the fact that some have many visits from family while others don’t.
It’s ok to stay away , protect yourself and put you and your husband first .
We are all thinking of you and hoping you try to take some time for yourself.
We are all here for you, just as we are for every other poster (except for those stinkin’ spam posts lol).
Sending you an internet hug : )
Your mom is in good hands thanks to all your effort, well done!
Now is time for you to take care of you and let the professionals deal with her insanity.