Getting involved in NPDf's care plan

[Beowolf]

I haven't posted on this site for a while as I have been living a relatively peaceful life. Until earlier this year when I was deeply drawn into elderly NPDf's care planning.

I visited NPDf at Christmas 2022 (I live abroad) and while I was visiting he appointed me as director of his business as part of a succession contingency plan in the event of his demise. There was no expectation for me to take an active role in the business at that time and I returned home to resume my life.

A few weeks later he called several times in a panic to say that he is being defrauded by his assistant and is not coping in general. He asked me to visit again to provide assistance. I waited a few weeks to determine whether there was a genuine need and talked it through with my support network before I made a decision. I went.

When I arrived, NPDf was genuinely in a bad way. Extreme fatigue. Significant memory loss. Malnourished. Dehydrated. I wondered if he had suffered a minor stroke as his physical condition had deteriorated in the month since my visit. My arrival seemed to give him the confidence to visit his GP which he did of his own accord. The GP noted a significant decline in cognition and referred him to a neurologist. Just getting NPDf to agree to the consultations was a battle. But eventually I joined NPDf at multiple consultations and he reluctantly agreed to an MRI and a PET scan. He was diagnosed with Alzheimer's disease and the consultant stated he had likely had it for some time. The process of getting a diagnosis took about four months, during which time NPDf was still trying to work which generally created chaos. His assistant was earning a significant wage for doing not very much and various people were taking advantage of his dementia. A former window cleaner was dropping by regularly to take large cash 'donations' from him. A former housekeeper was dropping by every week to provide 'illegal services'. His neighbours had stopped talking to him long ago and there were various building management items that I stepped in to solve. His life was a mess. With his permission, I problem solved a large number of issues.

In these few months we shared some bonding moments. I developed a daily agenda to improve his diet, exercise and general routine. I took him for daily walks and we shared some quiet and relatively unchallenging times together. As time went on however he became more and more belligerent. He ultimately distrusted the neurologist and disagreed with the diagnosis. He accused various people of defrauding him but continued working with them. He started taking my support for granted. It started with little gestures. Shoving the washing up at me. Random insults. Rejecting food I had prepared. Tantrums. Rages. Becoming agitated because I was there, then becoming agitated because I wasn't there.

NPDf would repeat himself endlessly. Old family stories I had heard hundreds of times. But also repetitive comments that showed some awareness of his condition like, 'I'm going to die.' 'I should go into a home.' 'Will you take care of everything for me?' Followed by aggrandized statements like, 'I will live until I am a hundred. I don't need help. What are you doing here?'

The healthier he became, the more challenging he was. When I arrived, he was humbled and relatively easy to deal with. But as he got his strength back, the familiar gaslighting, aggression and verbal abuse started.

Five months went by in a flash it seemed. I had goals each week and each month that kept me motivated and focused. 'Get him to the GP. Get him to the neurologist. Plan a meeting with his accountant. Get him to his lawyer. Get him to the MRI scan. Get him to the PET scan. Get him assessed by a nursing consultant. Get him to choose his preferred nursing home. Get the application submitted. One consultation led to another. It all took five months.

NPDf refused to accept in-home care. And he refused to try out a nursing home. The neurologist advised that there was not much we could do but wait for a crisis. I started to feel burnt out. NPDf must have sensed it and he turned on me. Started taking every opportunity to argue with me. Started defending the people who had defrauded him and accused me of interfering in his affairs. He became vicious and insulting. He raged at me a few times and I saw the familiar abusive side of his personality returning. At that point, I realized I couldn't achieve anything more. I decided to vacate for my own safety and I advised the GP, neurologist, lawyer that I was leaving. I let NPDf know that I would be going away for a while but I'll be looking out for him in an emergency. He took it on board in that moment but I knew that he would not remember.

The next day, NPDf started calling me incessantly. What happened to you? Are you coming back? Did something happen? He obviously had no recollection of his tantrums. For a few days he called about eight times per day. If he left a voicemail, I would call back. The voicemails became upsetting. 'Whoever this is, I am looking for my son. I am very worried about him. If you have seen him or know where he is, please call me back.' He invented a narrative that I had been kidnapped and was being held against my will. In one of his voicemails he stated that if I am not coming back to help him, he needs to move into a nursing home immediately. When I called him back, he had no recollection of his message and declared he didn't need help. I was totally confused. The neurologist advised me to leave and provided a formal letter excusing me from any further caregiving duties. They advised to wait for a serious emergency and they advised they had a duty to enlist him with social services.

At this point, I left. Walking away was hard. I felt I did an honorable thing by spending time with him at this critical time in his dementia trajectory. And I feel I left at the right time. But I am left reeling from giving so much to someone who takes it for granted. I feel I fell into the same old pattern. But I also feel that I did the right thing. I feel divided. I feel that any day I might get a call with a piece of news that might compel me to handle another 'emergency' that has the potential to seriously disrupt my life. I don't know how much attention to give to such an event. I don't know whether returning again will actually help. I am very distracted that he is still at risk of being defrauded. And there is an added complication that he would like me to run his business when he retires, but he is refusing to retire and is stuck in a circular conversation about his retirement plan. I have been working on building a strict set of boundaries regarding my future involvement in his care plan, but otherwise I am finding it challenging moving on with my life.

I would love to hear from the community with their thoughts regarding how much attention to give to a problematic elderly PD parent with care needs.







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[moglow]

I wish I had words of wisdom for you, but I'm at a complete loss on this one. I remember that Woman Interrupted had an awful time with hers, ultimately went no contact and handled what needed from a distance. I'm sure it was a hard dance with the devil getting to the point where she could let go but she did it. May help to pull up her posts, might provide some insight for you 

I do think there's a certain amount of "familiarity breeds contempt" in some of our interactions even as they age. How much is intentional (or what they genuinely can't help) I don't know, but it does seems that some double down on putting us in the place they chose for us. Yes I meant that the way it's written - it's like we were assigned roles way back and that image persists, all evidence to the contrary. 

"Attention" is still all relative to your reality, not necessarily his. I try to keep in mind that other people's demands aren't mine to fulfill. What he wants simply may not be possible for you, and you don't have to apologize for that. First and foremost I believe we're obligated to protect ourselves and our peace. I don't this we find that by deliberately antagonizing others, but we do have to weigh our stuff against theirs and decide which is truly our to carry.

Regardless, you can always talk through it here. Never know when you'll pick up that tidbit you're needing for the next step or three.

[FromTheSwamp]

The neurologist was an important observer here, and felt that you should back away until the next crisis.  I would listen to that.  Unfortunately, there's not a lot you can do when a parent acts like this, wanting to put responsibilities on you but not giving you the power to act in their best interest without their cooperation.  Unless and until someone is willing to write a letter of incapacitation, even power of attorney won't help here.  He is an adult, and is considered capable of making his own decisions, even remarkably stupid ones that may later impact his ability to pay for his care.  Things have to get really bad before that's taken away from him. 

I've been there, and it was incredibly stressful and frustrating. I felt every day like I was screwing up somehow.  My parent blamed me for their situation but wouldn't let me do obvious things to make things better. 

You have done a lot, and it's okay to step back and wait for now.  If he was cooperative, you'd still be helping, but you did what you could while you had limited cooperation, then he'd had enough for reasons that only make sense inside his head, and now will likely continue to lash out. 

It's not uncommon for dementia patients to make things super difficult, and his neurologist knows this.