Mother in hospital refusing to eat and drink. Any advice?

I'm sorry you had a fraught final leg of the journey with your Mom. Don't second-guess anything -- you did your best. May you receive peace in your heart!

Helen, I just saw your update to us that your Mom passed. I want to thank you for updating us and letting us know; so few think to do that. I am so sorry for your loss. I hope your good memories sustain you through your grief, and bring you comfort.

So sorry, Helen. It sounds as though what was best for your mum is what she did -- know when it was time to leave and do it.

In recent times I've had two friends (both with pretty serious physical issues) who did an interesting thing -- they refused treatment, which made them eligible for hospice (i.e. without treatment they would die in 6 months) and when they were home with hospice they immediately stopped eating and drinking. Hospice doesn't treat people; it only offers palliative care. Starving/dying of thirst is painful, so they both began to receive heavy doses of morphine and valium, and in 3-4 peaceful days (mostly in a kind of coma) they died.

Both of them had filled out legal DNR papers allowing them to refuse treatment. One of them, who had had a really awful stroke but was still lucid and able to talk, told me (and her son and DIL) -- "It's just time for me to go." She wasn't frightened or fighting it. She had an ironic sense of humor and said, "I don't want to be like the kind of people at a party who are still in the living room drinking and laughing while the hosts are pointedly getting into their pajamas."

Since then I have thought a lot about this -- about honoring the behavior of elderly or very sick people that may indicate that they feel it is "time to go." And from what I read in this group and others, the act of stopping eating and drinking is not an uncommon way for people who have no other powers (or don't live in a state with Right-to-Die, or wouldn't qualify for Right-to-Die) to depart on their own terms. The answer below of Alva Deer (before your mother passed) says better what I am trying to say.

I should add that my late first husband, who had a terminal lung condition and was home with hospice, made this choice. Watching what he was going through convinced me that not interfering was a gift of love -- the last one I could give him -- although of course I was shattered when he was gone. He also had some thrush although that was not the primary reason he was ready to go. He was unable to continue the work he had loved his whole life and, as someone with a strong interest in ecology, believed that death is the inevitable end of the journey and essential to the survival of those who came later. He told me sadly before he made his decision that all he was doing was absorbing resources of all kinds and giving nothing back. With the help of hospice he was able to have a peaceful and more or less pain-free death. For me it was a time to learn the terribly hard lesson of putting my own fear of losing him on the back burner and making his own interests a priority. I hope I'll be able to do this with my current husband, who has dementia, in whatever way it develops. Leaving at the right time can be seen as a kind of heroic act...

Many ((((((hugs)))))).

(((((((helen))))) grieving is not easy, nor may we pass through it quickly.

Be kind to yourself now, in these days after the funeral and after all the various duties have been carried out. There can be an emptiness and a longing for the past and the one who has passed. And that is normal. They played a big part in our lives and will never be forgotten.

The pain of loss will subside in time. Feel your feelings. even though uncomfortable, cry your tears and know that has been the way of life over the years.

I have found that certain times after were more difficult than others - at 3 months, as it is coming up now for you, 6 months, especially 9 months, and, of course the anniversaries, 1 year, two years, and holidays, birthdays any special days.

Look after yourself at these times, even treat yourself to some little special things that comfort you. Have a meal out in a favourite restaurant, listen to music that uplifts you, light a candle in memory of your mother...

Know there are others who care and have walked this difficult journey. (((((((hugs))))))

Oh Helen, I am so sorry I missed your post in Jan. I found it now & saw the sad update. So sorry for your loss.

A long long chapter ends.

I"ve seen how these long chapters can bring mixed feelings. Of current loss, but also acceptance of the past & renewed vigour for the future too.

I've seen people choose to stop or substantially reduce their food & drink. It can look like a cognitive choice but the older I get the more I wonder.. maybe invisible brain changes are the cause? Or maybe the body decides, not the brain? Or maybe both the mind & body know when to change down into that final slow gear.

Today I heard a term I hadn't heard before : 'cognitive frailty'.

I have a friend who says "it was their time". It is from his cultural background - where fate held more sway than western medicine.

I hope those 'what ifs' don't weigh you down. See them. Acknowledge them. Let them pass by. It was her time.

Helen I wish you so much happiness for this next new chapter of your life. Your sensational sixties.
(((Hugs)))

Helen, I'm so sorry for the loss of your mom.

Helen, I am sorry for your loss.

I am so sorry for your loss, helen. (((((((hugs))))). When my mother stopped eating and drinking, she passed within a few days. I had a difficult relationship with my mum too, but did the best I could in making those tough decisions. I know you have too. Time for you to start healing now. I felt some relief when mother finally passed and it is OK if you do too. We all leave this world sometime and it sounds like your mother had a very poor quality of life. The "what ifs" and "if onlys" are part of grieving. No need to second guess. She is at peace now, and I pray you are too.

I would just like to let you know that my mother died last Saturday, a week after we had finally got her into a pleasant and supportive nursing home. She basically starved herself to death. I feel very strongly that if she had been allowed to leave the hospital before she gave up, things might not have happened as they did, but of course I will never know that.

I want to thank you all for all of the support, advice and sympathy you have provided since I joined this forum. I think that these, along with counselling and prayer, have been what have kept me from going under since Mum moved to live near us.

God bless you.

I have made it to 60! But the hospital staff have been giving us mixed messages about the level of care my mother will need, so we have been rushing round the county visiting the wrong type of care home. We have now found one we really like and are praying they will assess her and move her very soon. That would be the best birthday present I could have...

No, the doctors are not duty bound to pump in anything on a fragile and dying elder.
Who is POA for your Mom if she has dementia.
She is making her wishes clear. She is exhausted with life and wishes to pass, or she is passing whether she wishes it or not. One of those is true.
Please ask the doctors NOW about palliative care consult and/or hospice care for your Mother so she doesn't have people trying to pump anything into her and so she is medicated and can pass peacefully if she doesn't wish to eat anymore.

She can have hospice care at her AL. I would talk to the AL to see if its possible. I think she would be more comfortable there than in a hospital.

My MIL willed herself to die at 91. A UTI put her in Rehab. She was a passive-aggressive person. I think she thought by not doing what was expected of her in PT her sons would take her home. She was told that to get out she needed to do her PT. Then she was told she was going to finish Rehab in the neighboring State the POA lived in. The other 2 sons lived 12 and 16 hrs away. Her and that DIL did not get along so last place she wanted to be. She went downhill from there. Doctor called it a failure to thrive. She lost the will to live because her life was going to change. She would lose everything.

So Mom may just be tired of living. Does she have a directive?

If your mother's AL permits it, hospice can come to her at her place.

You don't have to be "wanting to die" to go on hospice either, nor does hospice cut off all meds, food and water, and let you croak.

Your mother is failing to thrive, which tells me hospice is the logical next step.

Hospice is not necessarily a facility where you go. Hospice will come into assisted living facilities, nursing homes, care homes or even private homes. If in other than hospice house, the care is not 24/7 they come in a few times a week to help with bathing, etc.

Some hospitals have hospice floors or departments.

I have now! Thanks for suggesting it.

Yes. Let them refuse. Thus is life. Xoxo

Helen,

Did you look into hospice? How are you holding up? This is a difficult time. Sending hugs your way.

Hi Helen
It is a bit of a catch22 as a caregiver to go from being concerned that the right meds are being given, that no UTIs are at play, that the diet is appropriate,then to all of a sudden, switch lanes and decide, well if she doesn’t want to eat, That’s okay. Hard transition.

My DH aunt (96, bed bound, dementia, on hospice, in a NH) got so sick she was transferred to a hospital before Thanksgiving.
She was there a couple of weeks and given an opportunity to regain lost weight and to take therapy. Instead she lost more weight, went back to the NH where she was again given an opportunity for rehab which she mainly rejected and continued to lose weight.
She had been on an appetite stimulate which didn’t seem to be working. I asked she be changed to a different one that I was familiar with. It does seem to be working.
Not sure if she will have gained weight when she is weighed this week but it is reassuring to see her eat with an appetite. Whether the food will actually nourish her body and she be able to recover her strength is unknown.
Quality of life, zero and yes, I feel very responsible at times….which is fairly grandiose of me, given that at 96 she is at the end of her life span and who am I to think I can will her to live?!
My go to mind set these days is that while I know that death is in her near future, I don’t want her to pass from any negligence.
That doesn’t sound like much of an effort and I really have little control over even that but I have put as many layers of care around her as I can. Her hospice aide sees her daily for a bath, A nurse once a week. She has a priest who visits weekly, a friend from two different churches who bring her communion and I visit her weekly. She has a roommate who keeps me updated on the daily soap opera of facility care.
The rest is between her and her faith, which brings her comfort.

Medical care seems often dictated by insurances regulations and hospitals sometimes have to be actually providing a curative service in order to keep the patient admitted while they wait for a rebound from the latest situation. Eating isn’t always advised as the body may not be able to digest the food. There are so many considerations that aren’t always shared. Moving someone in your mums condition can be hard on her as well.
Regardless of her care plan, please give yourself an opportunity to simply be a daughter.
That was the hardest part for me with my own mom, yet the part I remember the most. Allow yourself to sit and smile, hold her hand, brush her hair. Give a little kiss and let your emotions be felt.
If that is too hard, ask for a smile from her. That is my greatest treasure from my mom. I hope I never lose that memory or the one I have of my dads strong warm arm and his “I love you”.
I read several of your posts and saw that you were helped by therapy and if you aren’t going now, it might be helpful to resume to help you through these times.
I’m glad your family has recovered from the flu. We are here for you. Keep us updated.

My experience: when my sister started sleeping all day, all night I called Hospice. She had cancer and because I had experience this type of sleeping with my mama and daddy I knew what was happening. You need to call Hospice and they will assist and answer questions for you. Hospice - when you get a good one will send nurses 24 hours so you can rest and they will administer pain meds. With my sister the hospice required that I do it. Since I had experience it and been there with my mama and daddy I knew what to do for my sister. Not easy. You love your mom and to experience this will be with you forever. prayers and hugs

Who is POA?
Doctors are not obligated to keep pumping anything into an 88 year old who is likely now facing end of life issues.
Have you discussed Hospice (rather has the POA discussed it) with doctors.
From all you say your mother is unable now to gain enough wellness to leave hospital for ANY other facility. Leaving will not make her well, nor will staying. Measures such as tube feedings are unlikely to help for long, often lead to severe diarrhea, wasting, bedsores, sepsis.
I think you need support now to know that your mom is 88, at the end of her life, and may not survive no matter what interventions are done. I would speak to the doctors about hospice or palliative care at this time.
I am so sorry for all of this suffering.

When someone stops eating and starts sleeping most of the time, it's their way of shutting down and easing into death. Eating can actually be harmful at the end of life (choking, aspirating, vomiting). She's leaving the physical world bit by bit. That's how most of us die…slowly.

Hospice will provide a lot of support and services (hospital bed in your home, pain meds if necessary, patient hygiene, emotional support for the patient and family, visits). It sounds like your mom is dying. Trying to keep her alive by "pumping antibiotics" is what doctors are duty-bound to do unless she has specific advanced directives.

Get in touch with a nonprofit hospice, preferably one affiliated with a hospital. You'll be glad you did.

If your mum is not wanting to eat or drink and is sleeping all the time, it may be time to talk to her doctors about bringing hospice on board now, as those are both signs of end of life. I can't believe her doctors haven't already suggested that.
Hospice will make sure your mum is kept comfortable and pain free until she transitions from this life to the next.
And you can call hospice yourself to bring them on board, as most states don't require an order from a doctor.
Best wishes.

Have you thought about getting her evaluated for hospice, which is not euthanasia or assisted dying.