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In-home Hospice Decision
Pioneer woman
Posted: Saturday, February 9, 2019 6:29 AM
Joined: 12/28/2015
Posts: 58

At a turning point with my 92 yr old parents, married 72 years, and still devoted to each other.

Last 3 years incredibly hard for me. Left job, my home and prior life to take care of mom with VD. She is now severe. Difficulty with using her walker,  grabs on to things and won't let go Stopped eating on her own. Still sucking straws most of the time. At medical day care 4 days a week. Not sure how long that will last. Few words (not new) and repeats what you say to her sometimes. Difficult getting her up to change, use toilet, etc. 

My dad is very frail and has numerous health issues. Plus he has FTD and VD. He fell 3 times in past week, out of breathe consistently and is worried about his wife. Cries. Affects his eating and drinking. Both have a geriatric specialist and other specialists.

I used to go home for respite one day a week. 4 hours away. Can no longer do that. Aide, agencies are a nightmare. We've accessed VA for dad, Community Medicaid for mom, and lots of private pay geriatric managers and aides. Never reached an acceptable level. I am really burned out when they seem to need me the most. Sisters both abandoned us. One visited for 3 hours once in the past 7 months. The other one keeps telling me not to do this anymore - as if there is an option. She is in denial. Lives 5 miles away from my parents but has never been a caregiver or manager. So, I am on my own with too much responsibility.

Will explore possible placement in SNK but that doesn't seem realistic. Instead, might try Hospice. The support would help. The advice may help and they could help with supervising/managing an aide agency. Both my parents will qualify for Hospice. Is there a reason why I would want both on Hospice at the same time? My dad could pass at any time due to heart failure and my mom could outlive him. Once in Hospice home care for 3 months, they would then qualify for a Hospice Comfort Care home if we could no longer keep them home. That's an important consideration for me.

 Any idea on how long the end stage of VD lasts once the person stops eating?  Can you folks give me some feedback on this situation with two parents declining at the same time. 

Thanks. I am really struggling or have been for quite awhile.



Posted: Saturday, February 9, 2019 7:12 AM
Joined: 2/29/2016
Posts: 1268

Hi Pioneer woman. What a struggle. And what an amazing human being you are to do so much for your ailing parents. A hospice consult is a great idea. My mother is on hospice in her home; we also have aides whom we pay. None of this is easy.

What hospice will do for you: skilled nursing visits for health assessments, medical supervision, medication management, medication delivery, durable medical equipment (hospital bed, Hoyer lift, wheelchair, pressure relief mattress, etc.), incontinence supplies, skin care supplies, a home health aide/bath aide a few times a week, ancillary services like social work and spiritual care. You might also get a physical therapy consult to assess gait and transfer. The nursing visits and medical supervision are very helpful as there is no need to take your parents out of the home to see doctors.  Besides giving your parents support, they will give you emotional support. 

Hospice does not provide 24/7 care in the home, at least not until the very end, but the support they give can make home care feasible a little longer. One of the most valuable aspects of hospice care is that when the person does pass away, instead of calling 911 and having police and EMS respond, you simply call hospice and they take care of all the details.

In terms of not eating, if a person is still taking liquids, the time frame is usually weeks. If not drinking at all, it is shorter. I can't give any feedback on caring for two declining parents; taking care of one is wearing me out. As for siblings, from what I see here and in y own family, dysfunction and vanishing siblings are the rule rather than the exception. Not sure what your sister means by telling you not to do anything more...your parents are alive and need care.

You are struggling; I hope that hospice involvement brings you some relief. I do recommend the book Hard Choices for Loving People by Hank Dunn which addresses many of these difficult questions. Stay strong.

Wishing you peace, iam

Posted: Saturday, February 9, 2019 8:49 AM
Joined: 5/21/2016
Posts: 1940

Hi, Pioneer Woman, What a lot you are doing! Yes, hospice will give you some more support. Specifically answering your question about how long a person can last without food or water. My dad with congestive heart failure ate and drank about 24 hours before he died. My mom started refusing food about a month and a half before she died, but she would take small bites of nourishing substances like ice cream and sips of Ensure and she drank fresh squeezed orange juice. She refused all food and lost the ability to swallow about three days before she died; she appeared to be in a kind of coma and was on a heavy dose of hydromorphone (because of her crumbling spine which was causing her pain) and Ativan (because of agitation) prior to her death. The dying process is not easy to witness, but I understand now that death is not something to fear.
Posted: Saturday, February 9, 2019 12:55 PM
Joined: 12/4/2011
Posts: 17061

I think you are right ready for extra eyes and hands and yes, I would get Hospice for each of them. I might even use two different ones.

Have you researched all of the services available through Medicaid?

Posted: Saturday, February 9, 2019 9:09 PM
Joined: 5/2/2016
Posts: 35

Though I only had one parent to tend to, with solo full-time caregiving 24/7 for 5 years, I offer you at least the knowledge that you are not the first to have given everything up to provide care at home.  My siblings, too, were for the most part nowhere to be seen.  That is just how things worked out.  I am a better man for the experience, having taken it on willingly. 


 My Mom is gone now, three months tomorrow, and I cannot praise hospice care enough.  It was called in for what turned out to be Mom's last 6 weeks of life.  Their experience, skill, care and devotion was incalculable.  They had ideas and knowledge which I had not learned "on the job" and listened to their suggestions.


It was also my experience that my Mom took to their care quite easily.  Perhaps it was just being in someone else's hands, rather than mine.  Mom had Wernicke's aphasia and dementia, so all I can do is speculate.


I suggest that you call in the pros, the hospice team, and see what transpires.  You have nothing to lose, and much to gain.



Posted: Saturday, February 9, 2019 10:39 PM
Joined: 7/12/2017
Posts: 1287

I don't understand your question.  If its feeling guilty for letting others help well ffs let them!  Your parents are old.  They will die. Its going to happen and anything anything that gives you a break, helps them, and makes the death process easier should be embraced.  Why are you so afraid to accept reality?  You don't have to make sure they stay at home..why?  SO you can get sick?  So you can suffer?  I am giving some tough love here because sometimes people need it.  Not sure why you want to suffer so when you have options.  Bring in help!  Let others in!
Posted: Sunday, February 10, 2019 1:43 PM
Joined: 12/15/2011
Posts: 3908

Pioneer woman, your mother sounds like she is very end stage - based on what happened with my mother who had vascular dementia.  When the  symptoms you describe appeared, along with contractures in my mother's arms, she lost the ability to swallow, got aspiration pneumonia, then sepsis and died in a matter of 2-3 months.  In your situation, I would move your mother and father into a SNF near YOUR home (4 hours away) and call in hospice for both of them.  Sell their house and stuff to pay for their care, move back to your home and try to restart your life while visiting them from time to time. Nothing you do is going to change what will inevitably happen.  I think it is important to understand that.
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