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bluebell19 Asked December 2022

How long can this go on (not eating and other issues)?

My 92 yo MIL fell in her home on 11/21, she has vascular dementia that I can't really stage. She has kind of been on the same level for years and just recently started declining. My son lived with her and offered minimal help and she had aides three times a week for bathing/laundry. There are many other supports in place as well (cameras, cleaners, all shopping/home maintenance/finance(me)/daily visits by DH, etc).


 


She suffered a compression fracture in her T11 and was moved to a SNF on Thanksgiving. My family all had Covid at the time and I'm not convinced she didn't have it either although she was not tested. She got a stomach virus immediately upon admission to SNF, got over that, but has not eaten barely anything beyond a few bites since 11/21. She is drinking some when prompted and DH is getting some of the Ensure drinks down her when he visits. She is so weak, cannot stand by herself or dress herself any longer. She developed a horrible UTI this weekend and they are giving her antibiotic shots since Monday. Now the nurse calls last night and says her liver numbers are bad and they are discontinuing Tylenol and giving Tramadol every 12 hours instead of 6. So now she will be in more pain.


Does this sound dire to you? DH is numb, but his family is against the SNF admission (another story), so I don't have anyone to talk to. I guess I'm just trying to figure out if she will ever come home, because I must deal with her finances and my son still living there. I care too, but there are practical considerations that I am the only one who handles.

Catskie62 May 2023
Im so very sorry for the loss of your MIL.

bluebell19 May 2023
I just want to update here, in case it helps anyone else that is searching end of life topics. So I have my answer on how long this can go on. MIL passed on 5/9/23. It was a horrible, painful death. Hospice and nursing staff were little help and fought us all the way for peace. She was the sweetest, kindest person I ever met and did not deserve that. I'm heartbroken.
I'm still around, my dad is still in nursing home in deteriorating health. Mine hasn't been great, I'm 6 weeks out of hysterectomy with a major complication at 3 weeks. DH's family has left all of the planning to us, and I am stressed. Funeral is Tuesday I just need to make it till then and then take up the selling of her house, etc. She did not run out of money and that is a blessing at this time that she can afford everything she wished without causing a financial burden.
funkygrandma59 May 2023
I'm sorry that your MIL had to die under hospice care like my late husband in a horrible and painful way.
It is very traumatic to witness that's for sure. I hope and pray that you will now take this time to take care of yourself as your health matters too.

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bluebell19 Feb 2023
Update: MIL is doing much better on hospice, now eating and weight is stable. Isn't it ironic that hospice is giving her the care she needs but will probably be discontinued after 3 months because she will no longer qualify? Eh, I have mixed feelings about all of this, obviously having sole responsibility of MIL and my father are weighing me down considerably (no vacations, no moving out of state, expense and hassle of maintaining MIL's home), but I guess it's great that she's stable and doing better.
NeedHelpWithMom Feb 2023
Don’t hesitate to have a reevaluation of hospice. Sometimes they will approve for hospice care to continue.

Once, my brother improved and actually walked out of his hospice care facility. When his health started failing he was able to return to the hospice facility where he died.
AlvaDeer Feb 2023
Tramadol, for most people, is quite a lot stronger than tylenol, so the pain relief should be better.
Is your MIL now on hospice care? Is the family recognizing that this is end of life care, and a deliverance into peace rather than something to be fought. As far as intake and givng supplemental drinks, an elder needs very very little nutrition to go on for many months, though often with the complications of little movement, bedsores and etc.
Compression fractures are very painful. I would seriously recommend Hospice, end of life care, and all the medications allowed with little encouraging of food and fluid intake unless she WANTS it.
I am so sorry but it does look as though you are looking at the beginning of the end. The body is now breaking down enough to allow frequent infections in multiple systems. Any one of them might lead to sepsis at any time.
I wish you the best ongoing and peace for your MIL.
bluebell19 Feb 2023
Yes, the hospice papers were filed yesterday. The family is more accepting of the care she is receiving, but there are some (her oldest grandson who she raised in particular) who cannot 'see her like that'. Well my goodness, apart from the emaciation and not knowing who anyone is, she is fairly alert and pleasant - showtiming still. This is going to get much worse, and probably noone will visit then. Even though they all gave their opinion on our choices.
bluebell19 Feb 2023
Update: Hospice started today! Never thought I'd be excited about something like this.
NeedHelpWithMom Feb 2023
Wonderful! Take advantage of all hospice has to offer.
NeedHelpWithMom Jan 2023
Bluebell,

What specifically is causing the delay in setting up hospice? Hospice is so wonderful in allowing a person to die with dignity.

No one should have to suffer at the end of their lives. She can have access to morphine and sedatives while in hospice.
bluebell19 Jan 2023
She is on a medicare rehab stay. You can't be on hospice and rehab at the same time.
Midkid58 Jan 2023
At some point, maybe it's now, even, she is going to need stronger pain meds. Tramadol can be helpful to a lot of people, but my experience is that it's kind of 'weak sauce' for severe pain.

PLease have her evaluated by hospice. There is NO dignity in dying in pain and with no QOL. I've never seen a headstone that states "He died without ever taking anything for pain".

There is no shame in bringing hospice in. There is also no compassion is trying to get mom to drink anything if it just makes her sick. And she's going to PT?

An evaluation of her status NOW will help you to make decisions. Accepting that someone is actively dying is hard. But we're all going to do it, so being as compassionate as you can be is the best gift you can give a loved one.
bluebell19 Jan 2023
SNF keeps saying 'We have her approved for medicare for two more weeks' and then two weeks go by and she's approved for another. I don't understand what is going on. We definitely want hospice and I think husband should set up the evaluation himself at this point. MIL has funds to pay for approx a year in SNF. So I don't 'think' money is an issue unless she lives longer than that.
bluebell19 Jan 2023
Update: MIL is still hanging in there. Trying to get hospice set up. She drinks a little water and a few sips of coke now and then. Still fairly alert but she has developed a bedsore on her tailbone. I think she might be an immortal saint.
NeedHelpWithMom Jan 2023
I’m so sorry that you’re going through this. It’s so hard to watch.

Those bedsores are painful.
bluebell19 Jan 2023
MIL is still hanging on, she's gone from baseline weight of 114 to now 87 pounds since 11/21.
NeedHelpWithMom Jan 2023
So hard. Thanks for the update.
bluebell19 Dec 2022
Just to update that MIL is still on the Medicare rehab stay and nothing has changed with her condition - better or worse. So apparently this can last a long, long time.
NeedHelpWithMom Dec 2022
This is the toughest thing to endure. You’re hanging in limbo.

Wishing you peace as you continue on in this journey.
Tynagh Dec 2022
Bluebell, IDK if anyone else mentioned this but see if you can find some of the videos on Youtube or TikTok by Hospice Nurse Julie. She will explain in detail what is happening at the end of life and what to expect. But being in hospice doesn't necessarily mean that your loved one is dying right now, but over the course of days, weeks, months. The most important part is make the person comfortable and they will work to do that so that you and your DH and son can hopefully make arrangements for yourselves and her.
Msblcb Feb 2023
I agree. I found hospice nurse Julie after my mom died. If I had known what she speaks about at the time, my mom’s last day would have not seemed so unusual. I would have known it was normal. It something that you don’t think about learning when you are in the moment and frantically trying to make decisions. She is a great source.
NeedHelpWithMom Dec 2022
I am so sorry that your MIL is in this situation. This is a lot for her and for your family to be dealing with.

My mom started hospice at home but went into a ‘hospice care home’ near the end of her life and received wonderful care. Hospice provides palliative care (comfort care) so they will give her pain medication to keep her free from any pain. My mother was given morphine as needed.

My mom also received a low dose of Ativan and Seroquel which helped with anxiety. My mother had been diagnosed with dementia also. They discontinued her Parkinson’s medication at the end.

I don’t understand why your family members are against her receiving help outside of her home. In your situation it would be too difficult to care for her at home. I found comfort in knowing that my mom had care around the clock. You and your husband will too.

Wishing you peace as you go through this difficult time.
bluebell19 Dec 2022
I'm sorry that you went through that with your mom.

Husband's nephew called him a 'bad person' for putting her in the SNF. He had to set him straight on the truth about his mother, it's not in husband's nature to participate in drama or talk bad about people, so that was doubly hard on him. Nephew said they would just leave her and she'd be dead in a month. But SIL has been saying all along she wants her to die in her sleep and she won't be forcing any food/drink. So what's the difference? At least here we can visit every day and question and/or demand more comfort care/hospice. They were all or are still in the health care field so I guess they have their minds made up. Dying/being sick is not easy no matter where you are, and I don't think my MIL would have wanted to be a burden. Even though she did next to nothing to plan for this.
Daughterof1930 Dec 2022
Our hospice nurse told us the 3 signs to look for as the end neared would be loss of communicating, loss of interest in food, and sleeping a deeper sleep than usual. It proved very true. We also learned that trying to feed someone who doesn’t want it in their later days is detrimental as the body reaches a point of not being able to process food. We were told to do hydration, even if it was minimal. You’ll likely know soon if she can recover and come home or if her life may be coming to a close. Hospice is a great resource even if the end isn’t imminent.
bluebell19 Dec 2022
DH just got back, they skipped therapy this morning because she is so tired. He gave her half an Ensure before she refused. Then she fell asleep with him there which she has not done before. I think the shakes are hurting her stomach, she always complains after she drinks them. She is still communicating, but seems to be less and less, and drawing more inward. Not asking the normal 'so what are you up to today?' a million times and more like 'Is it day or night?' type questions over and over.
funkygrandma59 Dec 2022
It sounds like it's time to get hospice involved as they will try their best to keep her out of pain and give her medications much stronger than Tramadol. Hospice is covered 100% under your MIL's Medicare and they will supply all needed equipment, supplies, and medications. Plus a nurse will come once a week to start and they will have their aides come about twice a week to bathe her.
It doesn't sound like she will be coming home either, as vascular dementia is the most aggressive dementia, with a life expectancy of only 5 years.
Hospice will be able to better explain things and if she is close to dying they can transfer her to one of their hospice homes where she will be able to die in peace. And again that is all covered 100% under her Medicare.
My husband was under hospice care in our home for the last 22 months of his life and at the end he went 41 days without eating anything and about 25 days with no drink.
bluebell19 Dec 2022
Thank you. She is in the SNF as a Medicare approved rehab stay. I suppose she would have to be removed from that to go on hospice? I know you may not know this, but I'm just thinking out loud!
lealonnie1 Dec 2022
Call hospice in for comfort care at this point. Your MIL should not be returning home to live alone again, that much is certain.

Best of luck.
bluebell19 Dec 2022
Thank you. If she does come home to live, if her daughter puts her foot down on the nursing home, then my husband will move in there as well. He is not a nurturer though, so I feel like she would be getting better care in a SNF. Not to mention that will probably ruin our shaky marriage. But it's not about me.

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