Caregiver Family,

My mom, under hospice care since Feb 2019, has basically stopped eating and is sleeping all day. For the past two weeks she's only eaten maybe three bites of anything in one given day. She's pocketing food and the other said it hurts when she eats. She had been drinking pretty ok but even that seems to be stopping and she's refusing to take pills now.

Because she's not eating, she's starting to have skin breakdown all over, but especially on her bottom. I've kept hospice in the loop and nurse attributes her decline as disease progression. The nurse has been sending over supplies so that I can keep bottom cleaned and bandaged.

I'm not sure what else to do and what else to be asking of hospice. Advice please!

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Nurturbynature. Sorry for your loss.
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Reply to answry

So sorry for your loss.
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Reply to JoAnn29

Hello Everyone,

Just wanted to update you all. My mom passed away on Thursday, the 16th. Mom had developed a Kennedy ulcer, hence the fast decline I stated in my post.

Thanks to everyone here on AgingCare. I read way more than I posted and this board has been a tremendous help on this journey.

God bless and take care!
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Reply to Nurturbynature
Cover99 Sep 18, 2021
I'm so sorry

Thank you for the update,

Maybe Norm McDonald was waiting to welcome her with humour :}

God Bless and Take care
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Thanks everyone.

The hospice nurse is coming over. The phone nurse wants her evaluated for thrush.
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Reply to Nurturbynature

When my dad got that point, I called hospice and said, "I can't do this alone now."

Someone was there within two hours, and they stayed until he passed about 24 hours later.

Do not force food or drink on your mom. (Offer, but never force.) She should be getting the comfort meds now, and possibly oxygen, too.

Get hospice over there now.
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Reply to MJ1929

Has the Hospice Nurse visited recently? If not I would ask that they make a visit ASAP. Just to evaluate what is going on.
There does not have to be skin breakdown as mom declines.
The proper mattress, changing her position goes a long way in preventing that from happening.
If mom does have a pressure sore ask that a Wound Specialist visit and make sure that it is being treated properly. Just because someone is "Actively Dying" does not mean they can allow skin breakdown happen and pressure sores to worsen.
Do not worry if mom is not eating. Do not force her.
Continue to provide liquids that she can take in. You can use any liquid she will consume so Ensure, Protein shakes would also be acceptable.
If the medication is necessary ask that it be provided in liquid form or you can crush pills (not capsules and usually not coated pills) and add them to any liquid she will drink. Some medications can also be given as a patch or as a suppository.
Most Hospice also have Volunteers that will "Sit Vigil". A volunteer will come in and be with you if you are alone so that you will not be by yourself when mom dies. Typically a Volunteer will stay 4 hours then another will come. They will do this for days if necessary.
Have the Nurse explain to you what to expect the last 2 or 3 days, the last 24 hours so that you are prepared. (Trust me when you think you are prepared and you know what to expect when death occurs you realize how unprepared you actually are for that moment!)
((hugs)) to you and mom
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Reply to Grandma1954
SEAGULL9 Sep 14, 2021
When my mom died on home hospice, I was the only one there. She had vascular dementia and was bedridden and incontinent.

In the last two days of her life she became unable to swallow or even roll over in bed.

Her consciousness became less and less.

When I looked in on her, it looked like she was breathing in a labored manner. I tried to give her some morphine and lorazepam liquid inside her cheek as I couldn't open her mouth.

About an hour later she wasn't breathing and I couldn't detect a pulse. I called the hospice nurse who pronounced her dead, and I called the funeral parlor to come get the body.

I felt numb and was stone faced. I felt no emotion at all. Later that night I stared out in the darkness and felt almost disbelief the inevitable had happened.

After a couple of months the same grief that I had felt that day in April 2020 when she went into the hospital aftee a fall at hone returned.

It was a confusing time as Cuomo had ordered snf's to take in hospital patients early.

I felt she was too advanced for rehab but that is what she was admitted to the SNF for.

My grief anxiety and depression were through the roof, as I really wanted hospice, not pt at a snf. I pleaded with them to let her go and I couldn't get into the SNF because of Covid restrictions. They refused and used up all her medicare rehab days for that benefit period.

My grief panic and depression were through the roof while she was at this snf. I would stay in bed all day, couldn't sleep without waking up with a panic attack. My weight went from the 120 s to tjr high 70s.

It was a long saga from april 2020 until death on home hospice in March 2021.

I saw my initial plans of downsizing to a condo and her finding assisted living somewhere near me go down the drain.

I was filled with anger and depression that she resisted assisted living fot years...... And now was bedridden and incontinent..... So snf to AL with an enhanced license to home hospice which u renounced as I Waned original medicare part a back should I need to bring her to the hospital.

I was overcome with diaper changing the next night and called 911 as I couldn't take it anymore. It turned out to be c difficile and from there another snf as I did not think things were disinfected at home.

Social workers and the attending were all angry.

So she went to another snf for so called end of life care, private pay two months up front.

The cost was exorbitant and I took her out after a little less than a month and got her on another home hospice. I got a partial refund from the SNF as she was there for a bit less than a month and I had paid for three months.

She continued to go go stepwise downhill at home from being able to lift up a bit so I could change her diaper and she could eat a bit and drink from a baby bottle.

The last two days she couldn't roll over in bed any more and couldn't swallow.

After my stone faced look as they removed the body I went into horrific depression grief and anger.

That is pretty much how I stayed from March 2020 until now.

I am also trying to deal with all the paperwork lawyer and probate a couple of weeks after the death until now September 2021, which is still ongoing.

I feel overwhelmed and would like to sell this old house I inherited from her. Repairs maintenance insurance taxes bills are just too much for me not to agonize over.

I so want to downsize to a more age appropriate area for me.
I am 66 years old and can no longer enjoy anything I used to.

I hope no one else gets holding the bag of things to be done in the aftermath of a death after caregiving.
It sounds like perhaps your mom might be starting her final journey, but the hospice nurses should be better able to let you know that for sure.
Sleeping a lot, not eating and drinking are all signs that death is near. And when a persons dying process starts, it can be very painful for them to eat and drink as their digestive system is shutting down.
As far as her medicines are concerned, if they are needed in the end, hospice can put a midline in your moms arm where you can administer the morphine and whatever else may be needed.
Everyone's final journey is different. My husband didn't eat anything for 41 days and didn't drink anything for over 25 days, before he finally died a year ago, and he was under hospice care in our home for the last 22 months of his life.
Just enjoy whatever time you may have left with your mom, and remember that hearing is the last sense to go, so make sure you leave nothing left unsaid.
God bless you as you continue on this journey with your mom.
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Reply to funkygrandma59

Have you asked hospice what this means? Is she now actively dying? Call hospice now.
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Reply to vegaslady

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