How to care for totally uncooperative parent

ripscott

My sister and I care for our 101 year old dad. He is almost always uncooperative with everything we try to do to care for him. Most days I would rather wrestle an alligator than dress him. He has recently almost totally stopped walking and he no longer has control of his bowels. He fights us when we try to clean him up after he moves his bowels. He has had a catheter in since a hospital stay 3 months ago. He won't let us clean him up like we should so he ended up in the hospital again last month with another UTI. Some days he yells that he has to pee about every 2 minutes. We explain the catheter and no sooner do we finish explaining when he starts shouting again that he has to pee. Most nights are terrible. Some nights he yells for 9 or 10 hours straight. Nothing we say or do will quiet him down. His primary put him on Trazadone at bedtime but it doesn't seem to do anything most of the time. PCP doesn't want to put him on anything stronger. Moving him from the bed to his chair or the wheelchair or the commode is a struggle. There's no pivot transfer - he won't or can't cooperate. We are basically lifting and dragging him. We can't get him out of the house and even if we get a ramp built we can't get him in or out of the car because he won't or can't cooperate with us so we could. It's 2:00 am now and he has been yelling for the last 3 hours. He goes on and on and on and won't quiet down. His PCP thinks he is doing good. Palliative care says he is doing good. They never see him shouting and yelling or being combative. His vitals are always good and he sits quietly in his chair whenever they see him. He still eats good and he talks more than 10 words so palliative care says not qualified for hospice. There are no geriatric drs in this area. We are going to keep him home because the nursing homes in this area are terrible and all they would do is drug him and let him sit in the cornor in his own waste. THere's no point in hiring outside help to come in the house because he barely lets us touch him, he is not going to let a stranger touch him.

We are going crazy. Any ideas?

towhee

Ripscott, this has been going on for more than a year now, right? You have to be totally sleep deprived. And you and your sister are in danger of severe back injuries. So if the doctor and palliative care do not see the problem, then you have to show it to them. Take a video. You need hospice, if for no other reason than the equipment they can give you which will save your back. If this palliative company will not agree, then contact another hospice company to get an evaluation. You can change companies.

You say he will not let anyone else touch him. How did it work out in the hospital? Did the nurses not handle him there?

I hope something will change for you.

harshedbuzz

I absolutely agree with towhee-- his PCP and the palliative physician need videos of the behavior.

That said, at 101 they may be reluctant to offer more medication. Two options I can think of would be hospice which would come with a bath aide and comfort care medication box or attempting a consult with a geripsych via a telehealth appointment if getting dad on the road isn't doable. Medical transport could probably get him to an IRL appointment if needed. I found dad cooperated with the fit young men who tend to fill this position.

HB

jfkoc

I agree with calling in Hospice. You also need to find a Dr who understands the kind of meds your father needs. Hospice can help with this as well as many other things.

Now about the peeing. From first hand experience he does not understand that he can pee into the catheter. No amount of explaining will help this. Get him in from of the toilet and I bet he will go.

I would either let him stay in his PJs or find very simple clothes to change him into. Hospice will bring a hospital bed that he can sit up in and watch TV.

Bottom line? At 101 try to let go of everything you think is important and just make him comfortable. Again, Hospice will help with this. You can simply call them yourself.

14 Ways to Calm Dementia Screaming and Crying – DailyCaring

Please keep us updated.

mommyandme (m&m)

My first thought is you need hospice involved. The extra level of support will be really helpful. Losing mobility alone could be a reason, not just his verbal skills and comprehension. Also, sometimes a new person will be accepted by the patient to do the dirty work. You might hire in an aide from a Home Care agency. He may feel embarrassed that his two children have to be the ones to help with his toileting and to see him this way. As far as clothing, my mom hated to change clothes. There came a time that she wore the same thing during the day and night. Something very comfortable and I only changed her clothes when absolutely necessary due to being soiled or food spills. She still hated even that. After she was bedridden, she only wore adult briefs (diapers) and shirt and socks. A lot of her being bedridden was that she didn’t want to move to stand. She didn’t want to go anywhere. So for her comfort we switched, put the hospital bed in the living room and it seemed to help her a lot. Although I, of course, was saddened by our new reality. I had to “Accept and Adjust” to so many things, it’s all just very hard. I’m so sorry.

Ed1937

No question you should call hospice agencies. If the first doesn't accept him for hospice, try another one. You don't need a doctor to recommend hospice. You can call yourself to ask for an assessment.

ripscott

Everyone says call hospice. Palliative care saw him about 1 month ago and said he didn't qualify for hospice because he is still eating and he can still talk. His PCP ( who is just a LPN - the only doc who will come to the house) saw him a week ago and said he was not ready for hospice. There is only one palliative care/hospice group in our county. He still does eat good and he can talk- sometimes it doesn't make much sense - but he can talk. He could walk short distances until a couple of weeks ago- now he doesn't seem to know how to move his feet. The bowel incontinence also started a few weeks ago. Today we had to clean him up 3 times and it was battle every time. He yells and is combative the whole time we are cleaning him. How do you keep him calm? It takes time to get all the "stuff" off of him. He wouldn't let a stranger clean him. He fought tooth and nail in the hospital when they put in and removed the catheter 2 times. We don't just want to leave him in the bed 24/7. We have a hospital bed. He's still strong and his heart and blood pressure are good. He has a bad hip ( bone on bone and that causes him pain- tried shots but they didn't help and hip replacement at his age and condition are out. He seems so anxious and uneasy about needing to pee all day whenever he isn't dozing in his chair. He has no interest in anything anymore. Doesn't watch TV at all anymore. He justs sits and drives himself ( and us ) crazy. He doesn't understand what we are doing is for his own good. We just want him to be as comfortable and happy as possible. His quality of life is terrible and I don't know what to do to improve it. Everyone tells us what a good job we are doing taking care of him and I feel we are doing an awful job. They don't see or hear him yelling and screaming. They don't see us fighting with him when we are trying to clean him up after another bowel movement in his pants. Sorry for going on so long. I think I just needed to vent and get this off my chest - today was a really long day. I don't really think there are any answers.

terei

You have been given good advice. CALL THE HOSPICE and have him evaluated. Have videos of him acting out if at all possible. The man

is at the end of his life + if you do not get some support, your own life is in danger IMO