My 71 year old father with CHF and and ejection fraction of less than 13% has been on hospice for a little over a month. He is in complete denial about his health, despite his rapid health decline within the last six months. He is bed bound and weighs about 80lbs. He had major edema and went to ER 3 months ago where they drained a 2 liters of fluid off of his right lung and ever since then he has been abnormally skinny and declining. He eats very little compared to normal healthy person but surprisingly more than what I read about for end of life hospice patients. He eats about 10 bites of food per meal and I can tell he has hypoproteinemia and doctor says he has severe protein deficiency. I don’t know where this fits in but when he has a pulseometer on, it cannot detect anything and has not been able to for about 4 months. He keeps talking about getting stronger, yet his muscles have literally deteriorated. I keep thinking he will pass any day based on appearance but then his mind is still completely alert. He just ran out of Eliquis and his hospice team will not prescribe anymore. As horrible as it sounds, I am hoping this hastens the dying process, as he is in pain and his quality of life is almost none existent by normal normal standards. As far as I can tell though, he won’t be going anytime soon and its emotionally and mentally exhausting for me. Has anyone had similar experience and can tell me how long did parent survive on hospice?
His acceptance of it is irrelevant to how you feel, so you need to adjust your expectations and acknowledge that your life does indeed go on.
She’d had COVID twice within 3 years, was covered with pressure sores, and totally immobilized for about 6 months before her death, and had been on hospice care for about 1 1/2 years.
I have no reasonable (or unreasonable) explanation for what was holding her here.
Although she was much older than your father, both his and her situations seem to illustrate the unpredictability of terminal conditions.
You have my sympathy. A difficult, painful, exhausting part of life. Please be as good to yourself as you can.
The issue is someone weighing this little even when much of that weight is fluid weight. The truth is that eating and drinking absolutely ZERO will allow life for some weeks, and eating OR drinking very minimal amounts can allow someone to live several months.
The thing here that concerns me is that you say there is pain, and honestly, there is no reason for pain now. That giving adequate pain control may hasten death by some minutes, hours, days or weeks isn't relevant anymore. Hospice is about comfort, and your Dad should be medicated until there is no longer any pain.
I think that death is inevitable here and you will hear many stories from many people about the "amount of time" it took for their elder. That really isn't relevant to you, and the fact is that every person is as individual as his own thumbprint. Your Dad's body has long been acclimating itself to very little heart function, and to maintaining itself with almost no heart function. I am so sorry. You will feel great relief when he is beyond suffering and your life is free of suffering for him/fearing for him. This is so tough. Make use of Hospice and tell them you need help dealing. They are your best guide in this.
If you feel your dad is in pain, please speak to his hospice nurse about increasing his pain meds! Both of my parents were kept very comfortable throughout their transition period, and for that I was thankful.
What I was NOT doing during moms last year of life was humming a cheerful tune while moving on merrily with my own life. Losing a parent is very difficult. Watching the decline is terrible, and with my mother, dementia and constant falls were involved. It's all sad and stressful and I sympathize with your situation. Wishing you Godspeed as you endure this time with your dad, and a smooth, painless transition for him.
My dad said up until the very last that he was gonna live to a 120 years old. He refused to acknowledge that his body was worn out and dying. He lived for a decade after his 1st heart attack and he just slowly declined, triple bypass during covid was the final straw for his worn out heart.
I encourage you to just love him, take care of you and prepare for the unknown, because nobody can say how long this will last but, it doesn't have to be as hard as we make it. Don't do 24/7 bedside vigils, if you are meant to be there at the end, you will be. Get sleep, proper nutrition and sunshine on your eyeballs, this will keep you strong to go through this with him.
May The Lord give you strength, peace, courage and wisdom for this difficult time.
My late husband was under hospice care in our home for the last 22 months of his life, and I was told several times during that time that he was dying, and he didn't until he finally did start his dying process which lasted for 41 days, after hospice told me he'd be dead in 3.
And yes, I was exhausted from the long journey and I felt relief for us both.
My concern for your father in the meantime is the fact that you say he's in pain. While under hospice care, that should not be the case. make sure that they've prescribed him something for his pain as the purpose of hospice is to keep him comfortable and pain free until he dies.
So hang in there and just enjoy whatever time you may have left with your father and make sure that you leave nothing left unsaid.
God bless you.
WE were told back in Feb(?) that she had 2-3 weeks left, at most.
OK, she came home, the kids tried to set up paid CGs and she fired them all within 1/2 hr of them arriving in her home. So the kids have done all the CG, except for the bathing and that's only b/c YS simply can't lift MIL to bathe her. She allows Hospice nurses because she HAS to.
She eats about 300 calories a day, since Feb and doesn't take any of her medications (HBP meds, cholesterol, baby aspirin) and only takes 'comfort meds' of Ativan and Xanax.
The initial "Oh my gosh, she's dying' has been replaced by "Oh my gosh, she's NOT dying' and everyone involved is exhausted.
Hospice reports to the family that she will definitely be here through the holidays--and we're not really happy about that, as she is very difficult and demanding and has simply sucked everyone dry.
She is not in pain--all she takes is Tramadol, something I feel is pretty weak sauce for pain, so I don't think she's IN pain. Just mentally declining.
I had always thought Hospice was for EOL--and it is, but reading on this site, I've come to find that EOL can be anywhere from days to YEARS.
As for his Hospice refusing to refill the Eliquis--that honestly isn't making much difference at this stage. Usually when placed in Hospice, all 'life saving' meds are discontinued. Only comfort meds are used.
You're not horrible to hope that the lack of the Eliquis will hasten his death. It may or may not and you'll never know.
It is sad that he's only 71--that's how old my DH is! My MIL is almost 93 and we really think she'd going to make it to 94. That's 14 months more.
Everyone is exhausted with this ongoing drama. My DH made the decision to be the ONE sibling who was always home, in case of MIL's having a sudden change of health. YS has taken 3 short vacations. OB has taken 2 long ones. We have gone twice, for 48 hrs apiece and cannot plan ANYTHING that takes us out of cell phone range. Am I bitter? You betcha. Dh is very depressed. I am depressed b/c he's so depressed.
There's no 'denial' that she dying. She's just taking forever. It's not like she's had this fantastic, busy, fun life. She's been a complete hermit since BEFORE Covid--so she wasn't doing anything for herself for the last 7 years.
I don't know her 'state of mind' Dh doesn't share. I just know that we're all tired and even a little angry over the incredible waste of time that has been sent her way, when she really ISN'T actively dying at all.
Don't feel bad about the feelings of exhaustion and even anger, it's normal, but it sure isn't 'fun'. I'm barely involved and I'M exhausted!
You dad is just going to die probably where he seems fine one moment and then he’s dead. It doesn’t matter how sharp his mind is. My dad drove around all day on Sunday.
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