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humkat Asked June 2017

When is it time to move my father-in-law on hospice care into a nursing home?

I've been caring for my FIL for the past 13 months - 24/7. He had fallen and broken his hip, had surgery, went to a rehab, nursing home facility - where he received NO rehabilitation, received a major injury to his foot (a pressure sore so deep it went to the bone and took 9 months to fully heal) - we decided they were trying to kill him and brought him to our home. I quit my job and became a vocal advocate for him to get extensive physical and occupational therapy at home. Up until January he was walking, going to the bathroom, taking showers (assisted), doing his own grooming, coming to the dinner table, able to get into the car for appts, etc. In January he decided one morning that he was NOT getting up and almost stopped eating anything. After 4 days of pulling, prodding and talking til I was blue in the face, I gave up and called his doctor who promptly sent a hospice representative. Long story short - he has been under hospice care since February - they have been lifesavers!! I have help with his bathing, changing linens, he sees the nurse each week and has been seen by the doctor as well. When I told him it was hospice care - he became upset. I've tried to explain that his refusal to move has now caused him to be completely bed-ridden - and that it was by his choice. Until recently he has been in excellent health, but we are now noticing that although he eats well (everything in sight) - he is losing weight, his left foot is swelling and if he sets up at all his feet turn purple. The nurses also noticed he has at times been slightly jaundiced. I can handle all the diaper changes, meals, clothing/ bed changes and endless laundry as long as he is able to move, turn to the side and not be just pure dead weight - but he is 6'4" and no featherweight. I am torn, should we go about getting him placed in a nursing facility or do I wait to see how all this goes? He could self-pay for about 10 months, then he would need medic-aid. I should mention that he is a gentle, kind soul, never abusive or demanding - which is making this decision a hard one....

freqflyer Jun 2017
humkat, since your Dad can self-pay for a nursing home [they average $10k per month], I agree with CountyMouse above and hire a caregiver for home. Even one shift of 8 hours would give you more time to be yourself, while someone else is doing the heavy lifting [meaning the care].

My Dad had professional caregivers from an Agency because he was a fall risk. They were great with him. The cost was around $30/hour for my neck of the woods, and Da had saved for this "rainy day". You might want to try a variety of caregivers to find the right fit.

BlackHole Jun 2017
You are blessed to have a husband who acknowledges the toll this is taking on you. Partner with him in researching placement for FIL. Now.

Put some serious effort into finding a care facility that's not as dire as his last one. It's great that FIL can self-pay initially. That really expands your options.

Also -- research care facilities that are a little farther from home than you might initially consider. The wider you cast your net, the better the chance you'll find a good fit.

I'm not recommending that you park him someplace that's hours away. Just remember that you will "only" be a guest -- not a daily slave. If an extra 30-minutes in the car 1x-2x a week per visit is the "price" of having FIL in a better facility, sign those papers before someone else takes the last bed!

You have done all you can do, and then some. You deserve to reclaim your time, your home and your privacy. Shake off the Stockholm Syndrome and return to the real "#1 guy" in your life -- your husband.

This forum is full of women whose husbands "pimp out" their wives to tend to ailing in-laws. Again, you are so blessed that your husband does not have that mentality. Your hubby is making your health and your sanity a priority. That is the right thing to do -- so join him!

Good luck. I have faith that you'll find the right residential care for FIL. Align yourself with hubby and keep an open mind. 🙂

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Countrymouse Jun 2017
If it's affordable in the short-term I should hire in as much help as you possibly can - ideally 24 hour, so that you can get adequate sleep and respite during the day. Wishing you and your family comfort.

humkat Jun 2017
My FIL is 92 years old. His mental state has been good until recently - I did speak with the hospice nurse this week and she was very open and clear that the new developments are not good and that it is part of the end stage processes. I am really tired - both physically and mentally and guess that's why I'm even considering the nursing home. My husband is pushing to have him in a nursing home because he sees how this has drained and affected me - but it is still a hard decision to make after what we experienced last year when he was in the rehab/nursing facility.
Thank you everyone for your input - you have given some good options and things to consider. I appreciate your advice.

Countrymouse Jun 2017
I should have a word with your hospice provider and see what they can do about increasing support, specifically for the manual handling aspects of your FIL's care. And as soon as he can't assist you himself, you have to stop - without the right training and equipment, and/or two people if that's what it takes, you're going to injure yourself.

But there's no law that says he has to be in a nursing home to have his personal care stepped up; so don't feel you have to move him for that reason alone. That's not to say that you should feel you have to continue at home, either - see what you can negotiate, and think it through carefully.

The new symptoms don't sound too good. What does his doctor say?

cwillie Jun 2017
It would help if we had a crystal ball to know how much time is left, wouldn't it? I was determined to keep my mom at home with me until her death but her increasing inability to stand at all was one of the tipping points in my decision to place her in NH. The true deciding factor though was my mental health, I had become so burned out, angry and bitter towards her and life in general that I knew keeping her home wasn't fair to either of us. Mom has been in NH for 9 weeks now and although that has it's own stressors I truly feel as though a giant weight has been lifted from my soul. Many people are able to keep their loved ones with them until the end, but from my reading on this forum those without a good support system are often deeply scarred by the experience, I didn't want my memories of mom forever tainted by those final months and moments.

blannie Jun 2017
What are his underlying medical conditions? What does the hospice doctor/nurse say about his prognosis? How old is he? Is he mentally sound as far as you can tell? Sorry for all of the questions, but if you give us more information, we can give better advice. It sounds like his circulation is very poor if his feet turn purple when he sits up. And if he's jaundiced, that's not a good sign either. What does your husband say about his dad's care?

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