Expert: Mary Gordon - 5/8/2010

Question
About 6 years ago Dad started showing signs of dementia. He is now 72. Of course he said there was nothing wrong. Last summer
mom started complaining he was becoming verbally abusive. Then she got sick and passed away in November from cancer. Dad wouldn't live with us tried it and he just was uncontrollable. Tried home health but wasn't enough supervision. By mid-December
he had to have a Foley catheter put in and it is permanent due to
uncontrolled diabetes. Got him to assisted living with home health visiting 4 times a day, and things were kind of okay for
a a few weeks till the first UTI. Got it treated.  Another UTI in March. Short hospitalization.  Another UTI in April.  This time 3 weeks in acute care.  I asked for a dementia assessment while he was in the acute care, and he staged at 5.  This was well after he
had recovered from the UTI and most of that confusion was gone.  The reason for the repeated UTI is he WILL NOT leave his bag/catheter alone. Pulls the bag off, wraps the hose around his leg, etc. The neuropsychologist upon being questioned by me said that even though at stage 5 he might not need a nursing home, it might be the only solution to keeping his hands off the catheter-
because he won't be emptying it himself or able to hide alone
very long - and keep these infections to a minimum. Each UTI leaves him more permanently affected. Not to mention all the stress he's been under these last months.  He lost his wife but also his compass. He cannot be depended on to remember anything and doesn't learn anything new. Thanks for any advice.

Answer
Hi Amy, you do realize that the catheter itself is probably why he is getting repeated UTIs - and this is true even if he wasn't pulling at it.  It is a major problem with Foleys. This occurs because bacteria can travel up the catheters to the bladder and cause infection. To combat this, the industry is moving to antibiotic (often silver) coated catheters. This has been helpful, but it has not completely solved this enormous problem. An additional problem is that Foley catheters tend to become coated over time with a biofilm or mineral deposits that can keep them from properly draining the bladder. This increases the amount of stale urine left in the bladder, which further contributes to UTIs. When a Foley catheter becomes clogged, it must be flushed or replaced. Most experts advise changing the catheter monthly.

http://www.wocn.org/pdfs/WOCN_Library/Fact_Sheets/cauti_fact_sheet.pdf

Is the purpose of the catheter to deal with urine retention - i.e. inability to void without it due to a narrowing or blockage? If so, you might want to look into a prostatic stent instead of the catheter. I'm not understanding what the diabetes has to do with the need for a catheter. If the catheter is to deal with incontinence, you may want to consider alternatives, such as a condom catheter or adult diapers, both of which will reduce the infection problem.   

A nursing home is not going to prevent him from touching the catheter and bag, so the logic of what the neuropsychologist is saying escapes me. A nursing home isn't going to restrain him in any way, and he'll mess about with  the same things there as he would in other settings. It is also common for people with dementia to endlessly pick at things and worry at them. It is a form of agitation behavior.

The thing is, his dementia will get much worse from here - I'd be talking to the doctor about that Foley and what you can do instead because if you leave that thing in, the pattern of infections will continue.

Have you looked into specialized dementia care? I take it that the form of assisted living you describe is not a supportive residential facility but more independent and when you say nursing home, you are referring to a residential facility that offers personal care support. I would not think he needed a nursing home the way it is commonly defined because those are for people  who have complex or high maintenance medical needs and needs 24 hour professional nursing care.

http://www.housingcare.org/guides/item-extra-care-housing.aspx

The thing is, even with supports, he isn't going to be safe to on his own without 24/7 supervision because his illness will progress. He is now close to the point where he needs someone with him all the time - not just for health, but for his safety. From here on in his needs will become more and more relentlessly demanding and physically challenging, as I know you can appreciate.

When my mother in law was in later Stage 5, she had to leave a lovely assisted living residential facility because they could not provide the degree of support and supervision she needed. They did provide a sheltered environment, meals, programs and all kinds of in-house services for her convenience. They could help with prompting her during dressing and bathing, but she could not be trusted not to wander, couldn't use her door lock, couldn't tell time to get herself to programs or meals, was getting lost in the building, was doing dangerous things in the bathroom and common kitchenette etc. If she had taken it into her head to leave the facility, they wouldn't have stopped her and that would have been disastrous and dangerous. She still could do many things for herself, but she really couldn't be left alone at all - she needed to be supervised all the time so someone could prompt her, escort her, assist her - and stop her from doing various things she no longer understood were dangerous etc.  

She went to a locked dementia ward with specialized programs for two years where they could manage her until she lost the ability to walk and bowel continence - at that point, she had to go to the nursing ward where they could provide heavy care (i.e. she was in a wheelchair, had to be hand fed, bathed, dressed and couldn't do anything for herself).

If your dad is in a residential care home with some dementia expertise, they can likely get the diabetes under control by supervising his diet and medications.

I hope this helps - I know how difficult this is to cope with, and how frustrating.

Mary G.