Managing long-term supervision needs of someone with ALZ and catheter. (part 1)

Dad is 88, has Alzheimer's…and prostate cancer. He’s lived with me and husband for almost four years. I’ve built a support system of day care, various volunteers and formal overnight respite that has worked thus far. Dad is otherwise healthy, robust for his age; I adore my Dad – we have fun together - we actually go out dancing occasionally! He is pleasant, funny engaging and thankful for the assistance I provide. All the helpers love him! I know that in the world of Alzheimer’s – I am lucky.

This week he had to have a catheter inserted directly into his bladder – as the Foley catheter through the penis either came out - or he pulled it out – seven times in three days! – most of those while in the ER or hospital, twice overnight at home. He is still @ VA hospital where he is getting good care – medically stable and ready for discharge. We are trying to come up with a discharge plan that meets his needs – and doesn’t burn me out. (He had Foley catheter once before, recovering here at home; I didn’t sleep for those 3 weeks! I’d startle awake every time he shuffled to the bathroom.)

Dad's care needs are complicated of course by the Alzheimer's, and his inability to understand/remember he has a catheter. Everyone is concerned he'll pull it out again. Since the insertion, he's been on 24-hour 1-1 bedside supervision, now being weaned from that. Also has had an elastic abdominal binder (essentially an elastic girdle) to make it harder for him to get at the catheter. He repeatedly (like several times an hour!) asks to go to bathroom – needs eyeball supervision in bathroom, and tends to reach for the catheter when he first wakes up or is not otherwise engaged in conversation/activity. The medical staff now suspect that bladder/prostate spasms were the cause of the catheter coming out so much; he is now on some medication to reduce that. And the direct catheter is less irritating, less of an ‘attractive nuisance’ than the Foley, thus the hope is he will have less urge to pee, and less likely to pull out catheter.

He's done well at Memory Care in the past, but that facility is not licensed to take anyone with a catheter; now needs higher level skilled nursing care, though he otherwise doesn't really fit the nursing home profile. He needs almost constant supervision due to risk of his messing with the catheter! This is what worries me the most about having him back home. NO ONE can do that alone, provide that level of supervision 24/7; and even with possible at home nursing care, I fear it will bury me. But, in reality, none of the facilities can provide that level of 1-1 supervision either. And now we have just learned that NYS health regulations prohibit use of an abdominal binder outside of hospital - as it is considered a restraint. So we are having difficulty finding a NYS facility that would take him, with those supervision parameters. The VA now wants to look at facilities in neighboring Massachusetts where rules are different – an hour’s ride away. NOT a good idea in my view!

So for now we are working on making a plan to get him into an appropriate facility - at least for several weeks – to see how that works out while he heals from the surgery - while also looking at what home care services could provide. VA is working on weaning him off the intense supervision and the binder - so as to assess what sort of supervision he actually needs. I have asked the SWker to speak directly with the NYS Health Dept to check into this “no abdominal binder” rule - find out if there is some work-around. Also asking the medical staff to speak to the necessity of the binder or to come up with some alternative.

Continued in next post......