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BeeBee2047 Asked February 12, 2024

Question about dad's swollen feet and hospice.

My dad is 83 with advanced dementia. This is year six of decline. He broke his hip in 2022 which led a huge decrease in quality of life and his ability to be independent. In December he got bronchitis and does not seem like he's been able to recover very well.


 


Now we are seeing that his feet have turned very red and are a bit swollen. It almost looks like tiny veins in his feet have burst. He is not walking very much anymore at all.


 


My mother took him to the doctor (his bedside manner was absolutely terrible, but I suppose that's a rant for another thread) and he suggested hospice on the basis that "he's never any better" when the doctor sees him. I wondering why he suggested it. He was not clear at all but is discontinuing a lot of his medications.


 


It's been a really hard couple of years for everyone and we are all ready to see him go but I think having some clarity on whether it's imminent or hospice can last for years, may help us be a bit more prepared.

BeeBee2047 Feb 12, 2024
Sorry for your loss. Glad you all have peace, I know how gut wrenching this is to watch. Agreed the ER is the worst place to be. Thanks for your feedback!

lealonnie1 Feb 12, 2024
Having advanced dementia ALONE is reason enough for dads doctor to recommend hospice, since dementia is terminal. Add in the bronchitis which he's not recovering from very well, the inability to walk much, and now swollen red feet means that dad is going down a path he's not likely to recover from. An elder reaches a point where it's impossible TO recover from the various illnesses that set in, their bodies are too compromised to heal.

Only God knows when it's time for dad to pass, in reality. A hospice nurse can give you an idea if s/he thinks it will be within 6 months. Then dad will be accepted into the program. Which doesn't mean he WILL pass within 6 months, it could be a year or more. Only God knows for certain. My mother was 94 when she was accepted into hospice care, with advanced dementia. The nurse saw her living at LEAST 6 months with no danger of imminent death occurring. Mom passed 2 months and 1 day later. It was her time and it was a relief because she was suffering with dementia for 6 years at that point. Hospice kept her comfortable and out of the horrible ER, away from all that poking and prodding for NOTHING.

Good luck to you and God bless.

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MACinCT Feb 12, 2024
2 months of congested cough and swelling legs might just be CHF like AlvaDeer mentioned. The swelling may eventually lead to reduced circulation and then a cellulitis infection. So what next? Hospice, pursuit of a rule of rescue, or comfort for his symptoms. The doctor sounds either like a piece of work or your mom is not able to understand. You might take him back to the doctor and go with him, make an appointment with someone else in the doctors group, or wait for him to get worse such as shortness of breath and low oxygen levels during an acute crisis where he should go to the ER.
As far as hospice, speak to your mom to see what her wishes are. It seems that she may get more overwhelmed as his care needs get worse.
BeeBee2047 Feb 12, 2024
He was a piece of work. We were on speaker and he basically said we don't care about our dad and don't support his care (despite me coming to help 7x a year, managing finances, and my brother visiting weekly and assisting with doctor's appointments).

We have in home care already but sounds like hospice can add another layer that is needed. Thanks for the feedback!
funkygrandma59 Feb 12, 2024
Well the nice thing about going under hospice care is that your mother won't have to drag him to the doctors anymore.
You would have to ask his doctor why he suggested hospice if you're not clear why, other than the fact that "he's never any better." Or check his appointment notes on the patient portal.
And yes, hospice care can go on for years. My late husband was under their care in our home for the last 22 months of his life and I know there are others on this forum whose loved ones were under it even longer.
As long as the patient continues to decline they can remain under hospice.
But don't expect much from hospice if having it at home, as a nurse will come once a week(for about 30 minutes tops)to start, to check his vitals, and aides will come at least twice a week to bathe your father, and your family will have access to their social worker, chaplain, and volunteers.
They will supply any and all needed equipment, supplies and medications all covered 100% under your fathers Medicare.
But please know that even with the nominal help from hospice, your mother will still be doing 99% of his care.
And just to clarify, when a doctor recommends hospice, they typically believe that the person will die within the next 6 months. However, that is often proven wrong as only the Good Lord knows the day and time that He will call us Home.
BeeBee2047 Feb 12, 2024
We have in-home care for a lot of the day, so that helps and I think hospice will add additional support.

Sorry for your loss. 22 months is a long time, I hope you're doing okay now too. Thanks for the feedback!
AlvaDeer Feb 12, 2024
You need to discuss with the doctor and with Hospice itself exactly what hospice means in terms of getting more care and help, and what it means in DECLINING FURTHER HOSPITAL TTREATMENT and CARE TOWARD CURE. You need full understanding that Hospice is end of life care.

From what little you say of your dad's diagnosis and prognosis it is difficult to say what he is suffering from, but if it is CHF (congestive heart failure) that means that his heart is a failing pump. That isn't fixable and his meds only can help with symptoms for so long. Again you need a more clear understanding. We are strangers. We can't give you that. Please speak with his doctor.

Speak with your MD and with Hospice.
BeeBee2047 Feb 12, 2024
I know further discussion is needed. Sometimes it helps to tap on an anonymous community to see if they have any insight before having to do the work.

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