Making the trade off

Suzzin

A few months ago I got my parents (one AD one with cognitive problems) to independent/assisted living. They transitioned relatively well. Last week dad fell and broke his hip. He had surgery and is now in a pretty grim/basic nursing home for rehab. With Covid there are no other options  

Mom with AD is falling apart, dad is giving up and wants to die. I want to bring him home, even knowing the therapy might be better where he is. To be honest given what I’ve seen I’m not sure. They see him 45 minutes a day and have him stand, but other than that he’s ignored.  I think of it kind of like hospice (as a worst case scenario)—-both of them would rather suffer at home together than get “better” physically while their mental health falls apart. 

What do you think? 

King Boo

I think you are very stressed knowing that their care needs are far beyond what returning to IL/AL can provide (it was probably a very long shot anyway, even before the fracture,with 2 cognitively impaired people).   

At this level of care, there was no 'cushion' to absorb even the smallest increase in care need.  Dad may have 'scaffolded' for Mom for a bit, but alone, she belonged in Memory Care.

It is you who will suffer with them at home.  They don't have the ability due to cognitive impairment, so what they 'want' doesn't figure in here.  You have to be the 'thinker' the 'decision maker'.

And it has to be an option where things are not going to fall apart worse than they are.  As sole caregiver, there has to be a pretty rock solid care plan with additional caregivers in place.

Find Dad a new skilled nursing facility for rehab; see how it ends and what care level he needs upon discharge from rehab.  Hip fractures can be devastating injuries with far reaching impacts on health with declines.    

Mom needs Memory Care or a nursing home too.

Your despair is most likely because you know their care needs cannot be met where they were living.  Don't give up.  There are options.  Reach out to the social worker at the AL/IL to see if they have a MC suggestion for Mom; reach out to the social worker at the nursing home to for Dad.  And find a place where you would actually want him to live.  

Grim, as in not fancy, we do good care and spend our $ on staff and care is OK.  Grim as in neglectful, poor care - time for a change.

PT is sometimes limited by the patient's participation.  When he plateaus, he will be discharged.  Start looking at options now.

I am so very sorry.  Been there many times, the threshold of nursing home discharge.  Don't let panic bring you into an impossible situation

harshedbuzz

Suzzin-

That does sound like a difficult situation all around. This is one of those scenarios that demonstrates the need for a solid Plan B. And maybe C and D, too. 

Some thoughts-

1. Ages, stages and general health play into this decision. You say "1 AD 1 cognitive problems"- does that mean mom has an AD diagnosis and dad has MCI or early, as yet undiagnosed, AD? 

2. It's not an unusual scenario for a hip fracture in an elder to precipitate a significant change in cognition or even a spiral towards end of life. It's hard to say which way this'll play out. My friend's 93 yo mom broke her hip 2 years ago, did her rehab and is back in her IL cottage and driving. My 92 yo aunt broke her hip in the earlier stages of vascular dementia; the experience left her in stage 6 and she passed 4 months later. 

3. Is your home set up to work as a SNF for 2? Is there room for a wheelchair and ramps? Do you have a first floor bedroom? A zero entry shower with room for an aide to assist? 

4. Can you get help in the home? With COVID, many professional caregivers have stepped away from the job for various reasons- childcare issues, vulnerable family members, etc.- so getting help is not as straightforward as it might seem. We were able to get a PT to come to the house for dad; he was great but dad didn't do as well as he had when he was inpatient at a SNF and he was discharged from care as a result. 

5. Are you in this for the long haul? It's hard to predict a timeline for the progression of this disease, depending on where your mom is she could need care for several years. Is there a situation under which you would be moving mom back into a facility- wandering, incontinence, disruptive sleep patterns?

6. It sounds like AL isn't an appropriate fit for mom on her own. Would it be possible to move her into a MCF for respite until you have a better sense of your dad's prognosis or while you set up your home for her care? If he could get to a place where he could get around using a wheelchair, he might be accepted into a MCF as well. Dad's MCF only accepted ambulatory residents but a few we toured would accept people who use wheelchairs. 

I am sorry you are facing this.

HB

Suzzin

HB, thank you for your thoughtful response. My parents are living in a facility with several levels of assisted living, and that’s where I would bring him back to. He would have 24 hour supervision until we (whoever “we” is) feel comfortable that he can at least sleep through the night without trying to get out of bed without using the walker.  Their place is set up for wheelchairs, and they have PT and OT on site. We know this isn’t a long term solution and that mom for sure couldn’t live here in her own, but I honestly don’t think they will live long without each other. Dad is extremely motivated to get better physically and will do any exercises they will let him. At this point the only other option is for me to move in here (leaving husband and teenager) and spend every day shuttling mom there and back and managing her meltdowns and dads emotional decline.

Cynbar

If by supervision you mean there will be caregivers with him 24/7 at first, this plan is worth trying. It's very important that your mother doesn't feel she has to take care of him, she's not up to it and it would make them both more anxious. But if she will trust someone else to tend to his needs, she can relax and just be his wife again. The hurdle would be if she resists the help and insists on being the caregiver --- you know her better and can probably evaluate that. It would also be important for the caregiver to be diligent on helping your dad with his exercise plan several times a day, as drawn up by the PT. Rehab does do physical therapy daily while home care is usually a couple times a week, but if a patient is motivated to keep up with the exercises, it can still be effective. Sounds like your dad is motivated to improve which is a crucial component.

RanchersWife

You’re only a week into this recovery. My mil fell and broke her hip. She was very motivated and they released her from the hospital 5 days after she broke it. No rehab facility. It was a crash course in dementia for me. The ordeal advanced her condition. Being home was good for her. She could walk, eat and recover in her own home. It makes sense for a motivated patient to be at home. Beware of hospital delirium. If you could manage a week or two with them, in their own place you would know what what they really need and find a way to get it for them.

Suzzin

Checking back in, after just a few days at home it seems to have been the right decision. At the nursing home he had to sit in bed or a chair unless someone came for PT; at home he has been up and about on his walker and is getting stronger and more stable. He and my mom are so happy to be back together. We have found fantastic in home (apartment) carers, and unlike last summer both my parents are accepting and appreciative of the help. The hospital/anesthesia delirium is clearing slowly, and I feel so lucky to be able to see them in a happy situation instead of all of us being torn apart by worry and grief.

harshedbuzz

Thanks for the positive update.

HB

abc123

Thank you for sharing the good news. I hope things continue to improve.