Mother in hospital refusing to eat and drink. Any advice?
My mum is 88, has NPD, deafness and mild dementia, and fell and burned her back on a hot floor just after Christmas when she had the flu. She has been in hospital ever since and caught a stomach bug while there, and is now sleeping all the time and refusing to eat or drink enough to be discharged, even though she is no longer medically ill.
My husband, brother and I all had the flu too so are not 100%, but have been visiting local care homes, as the doctors said Mum needed respite care while the social services and medics assessed whether she could go back to living in her AL apartment. A place had been arranged for her and then the hospital refused to discharge her because of the sickness, which only lasted a few days. It is fairly clear that she is not going to improve while in there.
I have had a difficult relationship with my mum all my life (see narcissism and scapegoat child!) and seeing her all frail and small in the hospital bed and not knowing whether she is deliberately bringing on her death or just being her usual non-co-operative self is bringing up all kinds of emotions that are stressing me out. I'm not saying it's all about me - I sincerely want what is best for my mum, but it is very hard to know what that is. The doctors are of course duty-bound to keep pumping antibiotics and drips into her to keep her going, even though it is clear that she has a zero quality of life (it was poor enough before she got ill). I am not an advocate of euthanasia or assisted dying, but just wondered if anyone had any advice or similar experience so I can feel a bit supported. (Our father died within two days of a heart attack, so we have no prior experience of this.)
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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)))))).
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))))))
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)))
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.
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.
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?
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.
Thanks for everyone's help.
Some hospitals have hospice floors or departments.
Did you look into hospice? How are you holding up? This is a difficult time. Sending hugs your way.
Thank you for your kindness. I feel trapped in a horrible limbo and my brother and I are constantly getting coughs, sore throats, fatigue, etc. If I weren't already on medication (largely because of the stress caused by my relationship with my mother) I think I would have gone crazy after a month of this, with no end in sight.
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.
I do understand that the hospital don't want her to die while in their care, but with no living will and now dementia it is impossible to know what my mum really wants. The mental health team are trying to find out why she won't eat, but again she won't co-operate with them. I agree about moving her around, which would be stressful for her, but I just can't see her improving in the hospital.
I would be very happy to just be a daughter, however lacking the relationship between us, but I keep being asked to arrange care for her myself. As if *I *know everything about the local homes and my mum's medical needs!
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.
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.
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.