Hi - My Dad who had a stroke 4 months back was moved to assisted living from the rehab facility. He has global aphasia and can't read, write, or speak about 85% of the time. Originally he was in agreement to living in a ALF, but now every time I go visit him he is telling me to take him home now, or he gets up to leave and tries to get me follow him out, or argues with me that nothing is wrong with him and he needs no help. The last few times I had to get help from the ALF staff to keep him in his room and not try and follow me out when I left. He basically will tell me that I am not leaving the place without me taking him when I do visit with him.
The ALF is the best in the area and is quite nice. He is receiving excellent care. I have tried to reason with him and offer other alternatives since he doesn't like it. I had suggested a couple of times that he could come live with me instead, and once he found out that I would have home health come to the house to assist, he told me no. I work full-time so I would need to hire someone, but my Dad doesn't want any strangers caring for him. Plus everything always needed to be on his terms when I was growing up, and it was an abusive relationship - so I am concerned this wouldn't be the best choice anyway.
I also told him that if he did occupational and speech therapy that we could see in the future if he would be able to move to another facility where he would have more independence, but he refuses to do therapy.
In the beginning, I would visit with him 3 times a week, but with all of his anger about being in ALF, and the fact that now I have to get staff to help me leave when I do visit, I started going once per week, and then even once every two weeks.
I feel like a terrible daughter, but he will not visit with me - it's either pressuring me to take him home, or giving me things to remove from his room so he has less stuff there (and I think he feels more in control that he is actually moving out in his mind).
I am seeing some signs of early dementia from the stroke, so I try to agree with him (about understanding he wants to go), and then distract him and talk about something else - but it never works. He is very stubborn and will not discuss any other topic when I am there.
I also tried taking him out shopping, for ice cream, etc. but a couple of times he refused to go back inside ALF when we returned and I needed staff assistance again. So I can't even do anything fun with him to get his mind off of things.
I really feel stuck - any suggestions?
It sounds to me as though you are trying to placate and please him, hoping that he'll be happy. I don't think, realistically, that that's going to happen.
Your dad likely has developed Vascular Dementia from the stroke. It also sounds as though he doesn't recognize his limitations. No amount of reasoning or explaining is going to help. And you say he is refusing antidepressants as well as all other meds? That's very sad.
I'm glad you've got Hospice on board. Is there a social worker that you can discuss the visiting problem with?
You might find it helpful to stay away for a week or two, and keep in touch via phone calls. It may be that your presence triggers the "I'm leaving with you" response. Staying away may allow him to settle in to the AL routine and get a bit more acclimated.
It sounds as though your dad has been an entitled tyrant all of your life. You seem to keep hoping that he'll turn into the loving and accepting dad you want and deserve, but in reality, that is not going to happen.
He is refusing to accept the therapy and meds that would make his life better. You can't help someone like this.
Keep your visits short; get up and leave when he becomes abusive. "It's not up to me me, dad"; " That decision is in the doctor's hands, dad" and "I'll come back when you're feeling better" are all good phrases to remember and use.
I am going to take the advice of not visiting so much - maybe once every few weeks if things don't improve (which i am not expecting them to). When i was younger I only visited my parents on holidays because of the abuse, so maybe i saw them 7-8 times per year. And honestly, I don't think my Dad really wants to see me. It just a 'means to an end' to try and get him out of the ALF. He is definitely a tyrant - he is very opinionated, doesn't like anyone, has no hobbies and is thinks he is always right and always should get his way.
I was brought up in a very old school Italian household where i was taught it was the responsibility of the children to live close to their parents and care for them. What is interesting, and what i keep coming back to - is that when my Mom was sick, (she was diagnosed with a brain tumor and died within 6 weeks), we didn't know at first that she was going to leave us so soon and my Dad was getting ready to place her in a NH. He told me that he was only going to go see her once a month in the NH facility. He actually stopped visiting her in the hospital and hospice because it was too hard on him, and i believe my Mom gave up and died sooner because he bailed on her. Even though i was there, it didn't replace my Dad, her husband that she was married to for 50 years.
I am also going to try ending the visit when he won' t stop talking about leaving, which should make the visits under 5 minutes.. lol. But maybe if he realizes that i am not going to stay and listen to him curse me out or scold me for not removing him, he will stop the behavior. Or if not, at least i won't continue to subject myself to it.
Part of this is probably ties to trying to heal old wounds from childhood. Finally getting acceptance and appreciation for who i am as his daughter, and that i am trying to be helpful, but that never would have happened if i am being honest with myself - stroke or no stroke.
lealonnie1 - your situation sounds similar to mine - and I worry about my Dad getting kicked out of AL and eventually MC when that time comes. The last thing i would ever want to do is place him in NH, but that is the only option for those that can't acclimate. I keep thinking if they would just try a little bit, this difficult situation may not be so difficult.
What they don't think about is this: they wind up taking the decision making OUT of our hands by disruptive behavior. If we have to place them in nursing homes, so be it, it will not be because we 'want' to but because we 'have' to.
Your dad reminds me of my uncle Bob..........I too grew up in an Italian family where certain things were/are 'expected' of the children, even if the 'children' are old themselves! Uncle Bob was a tyrant & refused to call an ambulance for his wife of 50 years who was having an acute emphysema episode. The co pay for the ambulance was something he didn't want to pay, even though he had Medicare! The next morning, he called his children, mumbled something about Mom being sick, they rushed over & got her to the hospital where she stayed for 10 days before being well enough to get released. On her way out, one of the nurses realized she hadn't had a BM in 10 days.........by that time, she went septic, turned purple and passed away. The hospital was sued for malpractice but my cousins lost their mother prematurely.......and blame their father for ultimately 'killing' their mother. Sigh. It's crazy what goes on in families, isn't it?
My dad, the old Italian immigrant, NEVER said anything nice to me or told me he loved me, or thanked me in general for all I'd done, until he was on his deathbed 4 years ago. His eyes got all teary and he quietly told me I'd gone above and beyond as a daughter, and thanked me for all I'd done for him. He actually told me he was proud of me, which I was shocked *and thankful* to hear after 58 years. I hope your Dad gives you that validation as well, I really do,.
All the best of luck!
lealonnie1 - I totally agree about the NH thing. It's certainly not because we want our parents there, but sometimes there is no other choice due to their behavior. There is almost so much we can do.
I am very sorry to hear about your Dad's passing, but glad your he was finally thankful and recognized all you did for him. You have that comfort in knowing he got it and was appreciative which is HUGE and i am sure it was a big relief for you just to have that acknowledgment after so many years. I can totally 100% relate. And that story about your Uncle Bob.. that is crazy stuff. Your poor Aunt. Such a sad story that didn't have to happen. It's crazy how they sometimes focus more on the money, or their comfort / well-being than anything else. He does sound an awful lot like my Dad.
I have stayed away as long as 2 weeks a couple of times, (in the process of doing that now), but when i go back to see him unfortunately it doesn't improve anything. I call AL to check in on him during these times, but i don't call and speak with him directly because of the global aphasia, so my concern is that he thinks he has been abandoned.
The other 'interesting' thing he is doing now is asking the AL staff to call me so he can ask when we are going. I think that is what he is saying anyway, so hard to tell and the staff can't tell either. He also told them he wants a phone in his room, and i don't think that's a good idea as he will call non-stop and i can't understand what he is saying.
I have tried telling him that these visits are very stressful for me because of the arguing, and he said 'don't come then'. He's not a person that cares about other people's feelings and has always just wanted things his way. If you don't agree or do it his way, you are given silent treatment, cut off or badgered until you do agree with him. It's like the stroke has magnified all the not so great qualities. It's very sad.
I agree with you about the vascular dementia. He is definitely starting to show signs, so i know i need to be patient and go with the flow. It is just stressing me out so much to go see him, and i am concerned the frequency will be less and less if this continues. I am going to have to balance my sanity with my guilt over this.