Wife, Mom, Researcher, & Caregiver
Age: Mid 30s
Care Role: Lives locally.
Age: Late 60s
Diagnosis: Dementia, not specified
Progression: Living in Memory Care. History of alcoholism.
Caregiving is so isolating, especially as a younger person. I have no idea where to look for information. No one I know in the same age group as me has gone through this. I had to move my dad to a facility. I haven't seen him since February. It's also isolating because extra time that it adds to your life; you have to get these extra things done every day. There's less time to do whatever else you might be doing.
In March 2019, my dad was not acting like himself. We had probably noticed before but didn’t piece it together. He was a lifelong alcoholic.. Everyone noticed he was forgetful. We had a birthday party for him. His eyes were yellow. He seemed detached from reality. He wasn't participating in conversations. I realized I needed to take him to see a doctor. I later learned dad had $60,000 in debt, credit cards . He wasn't managing his bills and his electricity had been turned off. Now looking back on that I feel bad that we didn't catch this sooner.
Getting a Diagnosis
A friend was going to drive him to the doctor. He found my dad on the floor/ He had fallen. He ended up in the hospital for the first of three hospital stays that month. I was asking desperate questions of the social workers and the psychiatrists. In the hospital, he was diagnosed. with dementia. He had reduced executive function and short and long term memory. He could not be home alone but I also could not afford to hire someone to stay with him the number of hours necessary to keep him safe. My wife was 35 weeks pregnant with our third child; we didn't have the space or time to support him. So the answer was a memory care facility.
My father's body had a lot of toxicity in it. The fall out from the alcohol was contributing to the confusion. During the hospital stays, we were hoping he’d detox. But his confusion did not get any better. After a few rounds in the hospital, the doctors felt something else might be leading to his confusion.
Legal and Financial Planning
For the legal stuff, I had to pick a path and own it. My dad had a family attorney. He and my mom were pretty organized. They had a trust, wills Power of Attorney, and an Advanced Health Directive. The power of attorney was active on signing, so it was all ready to go. For the trust and any accounts associated with the trust, I needed to be a successor trustee. My dad still doesn't believe he had dementia. We had difficulty doing the transition but per the terms of the trust, I could be appointed as a successor with a doctor's note. The legal stuff was really stressful but I needed to find solutions that I could live with. I wish I had just started fresh with unbiased advice, not gone with my dad’s legal relationships.
I took his phone away -- supposedly to fix it. He had been interacting with a bunch of scammers. He had a bunch of -- what he believed were - “girlfriends.” There was a thread of people trying to scam his credit card information and he shared his credit card information, his address and my address. He thought something was wrong with his Facebook account. So I said “let me borrow your phone and I’ll fix it.” I went through his phone and organized his contacts so only trusted people were on his phone, I deleted a bunch of apps but left some games that felt safe.
His verbal skills remain pretty strong, even though if you actually listen you realize it sounds a bit like nonsense. So he could interact fine on social media.
He still texts me but he sort of lost the plot with technology.
His friends don’t really go and visit him, even before the pandemic. He’s not that far from them. Do they not know how to interact with him? Are they uncomfortable? There’s an aspect that I used to experience interacting with kids before I had kids. I didn't know how to talk to them. Now that I have kids, I can engage with lots of kids.
I wish he did more. I've tried to talk to him about even watching TV like with the rest of the folks there. Pre COVID, I had arranged for senior helpers to come five hours a week to talk with him, go on a walk. But now he can’t go out. We did that for like a month before everything fell apart.
My dad had not been driving as much. A family friend often gave him a ride. He had cancer a few years ago and his friend had driven him to chemotherapy, so he was used to having his friend drive him.
Figuring out housing for my dad was challenging. When he was in the hospital, he was deemed to be a risk to himself and we were told he couldn't be alone. My mom’s sister lived with him for two weeks. Then he ended up in the hospital again. We were in over our head. We couldn’t afford a professional and we had exhausted our family resources, so that left us with memory care. The social workers put me in contact with people who could help me with that. The hardest part was figuring out the budget.
He essentially went willingly. He had limited ability to understand his situation. He felt like he was going into a rehab facility. I chose not to disagree with his understanding.
Now, every interaction I have with him, he is asking me when he is leaving the facility. He is always asking me for phone numbers of moving companies. Sometimes I get frustrated. Sometimes, I'll try to steer the conversation to the weather. Like if he starts talking about moving, I’ll say “well, you want to move before it rains.” Then we start talking about the weather. It depends on my ability to engage. I feel overloaded -- with work, kids, etc.
I am not happy with the location of my dad’s memory care. Given his budget, it was our best option. It's an hour away from me and a half hour from his friends. I don't know how I would fix it, but I wish I could. He gets about $2,800/month from social security and his pension. His room and board costs $3,000/month and he has a few other expenses, like his cell phone. So it costs me a few hundred every month.
I struggle with how truthful to be. My wife and I disagree. I tend to lean toward using white lies or at least a simplified reality. Otherwise, you are having the same conversation over and over. It really is an improv strategy. Like when he was moving, we played along with his understanding of what was going on.