Continuing saga:94.5 year old dad living with us for 5.5years. Drop foot both feet, considered high fall risk and multiple falls, last two backwards with hitting head. Currently compression fracture base of spine. Macular degeneration both eyes and very low vision, hearing problems despite hearing aids, fine motor issues but can feed self if food cut up, no sense of smell, CKD, colonized UTI, cdiff history, pacemaker, Urostomy, cancer three times (currently cancer free), hypothyroid, mild COPD, constant sinus issues, at times incontinent number two. Cognitive decline well hidden by charm and rehearsed responses but some deficits emerging. Impulsive and unsafe in motor planning and other choices. Does not sleep at night and is often up and down and needs help to move from bed to chair, etc (so I sleep outside his room and go help when I hear him up—sometimes up to seven times a night. He won’t ring a bell and I know would not accept an alarm). Will go outside on front porch at four am to smoke, not knowing the time. I could go on and on. Daily care includes taking BP and HR and oxygenation twice daily before administering BP med, daily weight and observation for edema and PRN water pills, med management of lengthy list, scheduling two pages of doctors/specialists plus labs including monthly urinalysis ( which is quite complicated with a Urostomy), daily hydration encouragement and monitoring, daily exercise encouragement and creative planning so will do, support and supervision for managing Urostomy and safe ambulation, daily poop monitoring for diarrhea or constipation, picky eater so constantly working on nutrition choices, seems slightly OCD as constant adjusting and smoothing of bed clothes, his clothes, etc needed. AND bathroom mistakes and issues to clean up sometimes multiple times a day, sometimes can go weeks with everything ok. Toilets self but does not really get himself clean.
He is currently at a SNF post hospitalization and they are saying they will not accept him long term and had a sister ALF call me. No way is he a fit for ALF (and Hospitalist doc who has treated him while hospitalized for two years said he would not be safe in one, when I discussed long term plans for him with her). I have had difficulty with in home help because of his infectious disease history.
I don’t know what to do. I have asked to meet with decision makers at the SNF, as to how they arrived at the decision. So far nothing quantitative. The social worker for intake who did the cognitive eval literally gave him many answers, going beyond the “hints” they are allowed to do. He is witty and charming and fiercely insists of doing for himself, which I respect but his ability and judgment do not match his commitment and stubborn insistence and puts him in danger. I have severe osteoporosis and cannot lend a lot of physical support safely.
Suggestions? I am really frustrated as it took a lot for me to consider long term care in the first place and I have been conflicted by it, but I know I cannot be his sole caregiver anymore—it’s not safe for either of us. Plus, his filters are increasingly failing and as I annoy him when he doesn’t think he needs help, he can get really nasty. He does not have enough money for ALF plus hired caregivers to supervise 24/7. My other relationships are very strained by the care attention I need to devote and lack of freedom. I want what is best for dad but I am drowning and it feels like the preserver I counted on being there when things became too much, has been yanked away!
Thank you all so much for answering. I cannot tell you how much your taking time to read and consider and respond means to me. This is one of the most difficult and emotional times of my life, and like you all, I’ve been through some stuff!
It turns out the NH was not rejecting dad. (After I finally was able to talk to the right people.) They do think he is high functioning for that type of facility and were giving another option to consider after his rehab. It has higher levels of care available (but is not an ECC). I looked at it and although I think dad would have really enjoyed it even just a couple of years ago, it is not a good fit now and won’t be even if he gets the max rehab.
Their therapy team feels he could be back to baseline in two months, if staying with them and receiving daily therapies.
I am becoming a lunatic over all this. Very conflicted. I know neither of us can go back to how things were before his hospitalization—it honestly isn’t safe or sustainable. So I am trying to take it day by day and see what progress can be made and what the determinations are when he is more fully accessed. One part of the day I will go in and see the person I know—albeit frustrated to be stuck in a wheelchair and told he has to wait for help with things. I can go in another part of the day and see the person that cannot stay awake (was also like this at home), can’t remember if he has even eaten a meal, wants help to roll over in the bed or some other basic thing and is very irritable if his directions are not followed to the letter or as is often happening, he can’t find the words to express what he wants. And I could go on with the many versions and things that concern me—but you guys have already been more than patient! Bottom line, the guy that shows progress and good cognition and a sense of humor I am thinking should come home even before the two months are up, with extra caregivers to help especially at night (I contacted a company we already receive some nursing services from and they will speak to me next week as to whether or not they can accommodate after they review his file. Sounded like the infectious disease stuff, as long as he isn’t active, shouldn’t be a problem.), and PT. This would be as long as he is more stable and has better leg strength than he had going into the hospital. This guy should be home where he can truly relax and be comfortable for whatever time he has left. Of course, all versions of dad have a high chance of continuing to fall wherever he is—and that has been pointed out to me by professionals.
But it’s the other guys I sometimes see, and the memory of how physically weak and unstable and impulsive he has become, that makes me pause (and if I’m being honest, panic a little in the dark of the night). Not to mention not knowing how all this can progress!
And last but not least, my dear and patient husband who must be a priority also is a consideration.
So, waiting to see—not my strong suit. AND my POA is not enacted, so there is also Dad and what he wants in all of this as well (and that is why I looked at the ALF. If when it is time for him to be discharged from rehab, he does not agree to extensive home help including with bathing, —if that IS the road chosen based on improvement physically and cognitively—then I wanted the ALF option to present to him as his alternative. BEFORE discharge.). Again, thank you all so much!
You have to have a meeting with the NH he's in and tell them you absolutely refuse to allow him to return to your home. Make it very plain that you cannot have him living in your home anymore because it is not safe for him. They will then have a social worker from the facility come and lie to you. This person will promise all kinds of homecare resources and will make it sound like taking him back with you will be a good thing for everyone. It will not be. There aren't going to be all kinds of support and help and homecare aides around the clock. He may get a hygiene aide to come and help a couple hours a week for a shower which no doubt he will refuse.
The nursing home will then likely make some financial threats like you having to 'co-sign' for his care and they will hold you financially responsible to pay for it if your father can't cover it himself. This is all intimidation tactics all care facilities use if someone is in there who doesn't have LTC insurance or large assets. The NH cannot force you to move him back into your home, nor can they force you to be financially responsible for his care. So long as you DO NOT sign any documents from the nursing home.
If the social worker deems him mentally competent then he's making his own decisions. You don't have to agree to anything from the NH or sign anything. Let them figure it out and they will. They figure it out for people who have no family.
If he is currently in the NH now, don't get talked into taking him back or signing anything. As long as he's there they are responsible for him, not you. I know you probably feel bad about leaving it to them because he's your father, but this is what out healthcare system is. He needs to be where he is in a nursing home. Don't let anyone convince you otherwise.
If so the VA has what they call Medical Foster Homes. These are private homes the owners have been vetted, trained and they take in Veterans that need medical care but do not want to go to a facility and can not remain at home.
I honestly do not know how many there are or where thy are located. I did just pick up a information leaflet on it and this is the info.
John Zidek, LCSW
Medical Foster Home Coordinator
John.Zidek@va.gov
Then it says..
For more information contact the Medical Foster Home Program Coordinator:
1-224-610-3784
It does sound like a smaller care home would be a good fit for your dad.
You could contact a local Senior Service Center in your are and ask if they are aware of any in the area.
You might find a facility that will LOOSELY drape a belt around the patient who tries to get up and wander. Under whatever different rules they follow that's okay, though the POA must sign a paper that says blah blah blah.
Look for family-run places, care homes (my BIL is in one of those) or something off the beaten track. Good luck with all of this difficult stuff!
You are not failing your dad by saying you cannot do this anymore. With his fall risk, nighttime wandering, vision loss, toileting issues, medical needs, and your own osteoporosis, this is unsafe for both of you.
I would ask for a formal care conference with the SNF administrator, social worker, nursing director, therapy team, and doctor. Ask them to explain in writing what level of care they believe he needs and why. I would also ask his doctor to document that assisted living is not safe if that is the medical opinion.
Most importantly, I would not agree to bring him home unless there is a realistic and safe care plan. Loving him does not mean you have to destroy your own health trying to provide 24/7 care alone.
I do not think AL is enough care. He needs memory or skilled nursing. Please save yourself. I care about you.
If the current SNF is billing to Medicare, there is a limited number of days which Medicare will pay. If that is their reason for discharging him, you can resolve that by paying out of pocket (using your dad's funds) or applying for Medicaid for him if his assets and income are low.
If he can not stay at his current facility, find another SNF. Schedule a tour with an admissions director of at least 2 or 3 facilities. They will want to know what his abilities and requirements are before accepting him as a patient.
The care management nurse that we pay a monthly fee to to help monitor his healthcare choices says it may be that since he isn’t very compliant with waiting for assistance, and I have him down to not be sedated, etc, they may just not want to deal with him. No matter what I will be seeking something to help him sleep at night…..I’ve just always been concerned it would add to fall risk and if he is awake even a little bit, he is going to do whatever he feels like doing.
Hire an overnight aid (that he pays for) so that you can at least get some sleep. If he doesn't like it, tough toenails. Tell him the option is a facility.
Option #2:
Get him assessed for LTC. Find a LTC facility that has Medicaid beds and move him. Tell him it's temporary. When he runs out of money, apply for Medicaid for him.
Is he on any medication for his nighttime agitation? If not, I would talk to his doctor about this soon.
Lealonnie1's Mom was in MC and fell 50+ times. There is no solution when an elder doesn't have the wherewithal to stay seated or use a walker. They eventually will break their hip or femur and become bedridden, solving the problem in its own way.