Sophia

Musician, Stylist, Daughter, Partner, & Caregiver

Caregiver

Age: Early 30s

Care Role: Primary caregiver. Lives with Loved One.

Loved One

Relationship: Dad

Age: Mid-60s

Diagnosis: Early Onset Alzheimer's

Progression: Living with his daughter; diagnosed 1 year ago; likes to bake, read, & do yoga.

My dad is very fit. He’s 64. He was diagnosed at 63 with Early Onset Alzheimers. He’s a young looking Italian guy from New York. . He's into fishing, hiking, bike riding, baking/cooking and yoga. He's hilarious and bright.

I’m heartbroken watching my incredible father slowly disappear. And I’m confused. How do I maintain my life. I'm so young and have so many things I want to do. But I love my father and want to honor him and help him through this with dignity and happiness.

My dad has been very combative about his diagnosis but overall an easygoing guy. I moved him from our home state to be with me, so he’s starting over as well.

Early onset is especially challenging at the beginning. He is still lucid enough to insist on autonomy and self worth and you want to provide for as long as you can in ways that make sense. But society doesn’t have a place for them.

Early Signs

My dad is weird. I don't know how else to say that. He’s kinda aloof. The first time I noticed a change in his personality, we were going to a concert . He was in a mood. We had some drinks together. It was really loud. He freaked out. He reacted really weird. I’d never seen him act like that before. We got into a big fight. My dad and stepmom had recently broken up. I thought he was being a jerk. And, I think that's common in this situation -- to look at your dad and think “what's wrong with you? So I walked away from that situation really angry and then we didn't really talk much.

Then we got back in touch. Everything seemed to be okay. He had some girlfriends but he could not keep one, maybe because he was having signs. He was mostly alone. Not many friends. He was living alone in this old farm house where we grew up. At Christmas that year, he picked me and my partner up from the airport and was driving us to his house and he got lost. He got lost going to the home he had lived in for years and years. And then a little while after that he asked me how to get to my mom’s house. They've both lived in their respective houses since I was a kid. He’s the guy who always knows his way around. He knows what route to take to get there faster or to avoid traffic. He knows.

I called my sister and we talked about it. And we kinda watched it over the next couple months and realized we had to do something.

Getting a Diagnosis

Last year, I’d go up to visit him. Check on him. Bring him to appointments. Finally he was diagnosed about 10 months ago.

My sister went and packed up most of his stuff and drove him down here. We worked to get him diagnosed here at a hospital. The doctor we saw before was very capable but he had no bedside manner and just said to my dad “Well, you have dementia.” So we had questions. This doctor here is really nice. He did a spinal tap. He did a brain scan, he did panels.

There were times when he was really responsive and understood his diagnosis. I think there were some moments where he must have been scared. But, he would always kind of slide back into a defensive posture -- “I’m not sick.”

That’s where we are now. He says he’s not sick. His financial advisor that I work with, called us and said somebody on our staff has experience with Memory Care and can talk to you. I cringed because I knew what was coming. Dad said “What are you talking about? I don't have Alzheimers. I beat that.”

He’s been in big denial recently. When he first got diagnosed, I got him books to explain what was going on. He does yoga block stretches on his lower back and he is convinced that he cured himself.

Telling People

I know it's hard for people to know how to ask about my dad. I posted some things on social media about going through this. I will post little updates here and there. I am busy. I see clients all day, every day. So everyone asks how my dad is and they listen to me talk. Sometimes I have to cancel appointments and clients understand. Some of my friends do check in. Some people get so frozen and can’t engage with tragedy. Other people step up and always ask how you are and what they can do.

Legal and Financial Planning

We didn't really do any planning. He just talked about it. I can't even find his will. I spent too much money on an elder care attorney. We paid a big upfront fee for two years of work and now we pay like $60/year for small things. We'll need more guidance. They helped us set up a trust. The only things that he expressed was “just don't put me in a home.” It is really hard. You want to honor that. But this is intense and I'm young and maybe I want to have a family.

With his money, sometimes I wish he could tell me what to do. He had a vision. He was passionate about his investments. I know it generates money for him. I don’t have that passion but I know it's a system he set up for himself and I want to understand it for him. But every time I bring it up, it just confuses him so I drop it.

A lot of time, I have to step into relationships that are his relationships. He has a bill and I have to reach out and say “Oh my dad has dementia” and they say “Oh, I’m so sorry” and they know me from when I was a kid maybe. Ugh, and you know everyone’s reactions. What do you say?

He has all his money wrapped up in investments. He has a financial advisor. I have to call him every time I need a chunk and I always feel guilty about it. It doesn't feel right to spend his money. I have to manage his money, I took him to the dentist and it's $1,200 and his insurance isn't great.

Activities

My biggest qualm here is there is nothing out there for people who are not going to sit around and play bingo. My dad has never played cards, never played bingo. He’s never ballroom danced. He is not his parents. Or chair yoga. Scrapbooking. He doesn't want to do that. My dad is 64. He is a young 64. He’s fit. He looks really good. He’s barely grey. What should I do with his time?

I think that’s really hard. When we moved him down here we were really struggling with what to do with him. At first he lived with me and my partner. I had just bought my first house. My boyfriend and I had just moved in together. And now, all of a sudden my dad moves in with us. It caused a lot of issues. We were going to rent him an apartment in the hip part of town so he could ride his bike, walk into a coffee shop, whatever. But at this point, he was so confused so that really wasn’t an option. So, we found a 55 and over place that we -- my partner, me, my sister, my mom, my stepmom -- all agreed would be good. But it was horrible. Depressing.

Everyone in the cafeteria was in wheelchairs. They were struggling. He was the youngest fittest person there. He felt alienated and alone.

We were going to move him into another regular apartment. And then COVID happened so we said “ok, we he’s moving in with us!” He’s been doing really well since then. He has a routine. And I don't feel stressed because he’s here. I don't have to worry about going to see him every day and also getting my stuff done. I just keep an eye on him.

But he’s bored and feels like he lacks purpose. I have so much empathy for him but I have no idea what he could do. Three days a week he goes with a companion on outings, as safely as they can with COVID. I don’t have the heart to keep him cooped up 24/7 because I know his brain will suffer. Otherwise we hang out and live a pretty low key home life trying to find joy where we can. But still he’s sad.

He bakes bread sometimes. That’s still something he can do. He’s on his ipad or iphone a lot. He’s always reading the news. He goes on and on about the news. I know he can’t work, he can’t drive and honestly I have to give him extremely detailed instructions for everything and watch over his tasks.

He wants to maybe volunteer. With the virus and his condition I fear he’ll never experience fulfillment again. Is this true? If i sent him to do volunteer work, I’d have to send his “assistant” or I’d go with him because you can't throw him into a volunteer situation and expect someone else to manage him.

Driving

He was getting lost. I would drive with him and he would be distracted. It worried me. We let him drive up until he moved here. When he got here, we said you can't drive. Maybe if he was still at home, we would have so “oh, maybe he can go to the grocery store.” But here he isn't used to driving. He doesn't have places he is used to going. So, he was kinda ok with not driving .

When he got fully diagnosed, I asked the doctor and the social worker and the lawyers how you know when you stop driving. They said “would you let your kids drive with him?” I said “no” and they said “well that’s your answer.” So we told him he could drive and he would get really upset. We fought about it but he never stole the keys or anything. So that’s pretty good.

It's not totally resolved. The other day he wanted to go to a yoga class near my house. And I said you could ride your bike or you could Uber and he said I could drive. I didn't say anything and he hasn't brought it up since.

Personal Care and Day-to-Day Stuff

On top of all the logistics, you are constantly thinking about their well-being. Their well being mentally. Their well being emotionally. Their well being physically. I took him to the dentist this morning. He is still remaining mostly hygienic..

Paid Help

In December, we got a friend of mine to come take him three days a week from noon to four. They go to the botanical garden or the Art Museum. They like to look at used books. They go out to lunch. They go hiking or on bike rides,. They used to do hot yoga. Whatever he wants to do

. I tell him “Dad, he’s your assistant” so they can just do what he wants to do. And he seems more or less settled in and they get along. Once in awhile, he’ll really protest. That has happened in awhile. But every few months he’ll say “I don't want to hang out with him.” But then they hang out and he has a good time. During COVID, he goes out three times a week with his companion.

Caregiver Health

People express their sympathies. My least favorite one is “My grandmother had that also, sorry.” It's really sensitive. I'm sorry your grandmother had it. But you know, I yeah, I'm 32 and I shouldn't be living with my father and paying his bills and caring for him worrying about him. I should be enjoying my 30s, enjoying living with my partner for the first time. You didn't deal with that with your grandma. It's terrible to witness but it's very different when you're the one making the decisions.

I'm lucky. Right now, we're in a good swing. He's more or less good. He might not make sense all the time and requires my time -- like, you know, I call him my “dad son.” But we can still joke and talk and remember things. So people are supportive but we are in a good time. You go through these phases, when shit gets real, when you need more support. If ebbs and flows.

The other thing I wished he shared is the garden. He's such a great gardener. I wish he could really give me his knowledge.

Caregiver Approach

I’ve gotten a few good pieces of advice. One of them is don’t be afraid to tell a white lie. That’s a really hard one. The other one -- hang on to being the child as long as you can. I don't always know what that looks like but i always try to remember he’s my dad and treat him as such.

I regret some of the decisions that I made. I fumbled at the process of moving him here. He should have always lived with us -- I shouldn't have not moved him to that assisted living and then here. We wasted money and time and we jostled him around. And on driving. Could he have driven longer? Maybe?

I’m really proud of where we're at now. It could just be a lot worse. Overall, I think we're really happy. My partner is supportive and loves my day and tries to make him happy. He’s really turned up for us and it solidified the relationship.

A year ago my dad was really flailing. He would call me 6, 7, 8 times a day and he would just be so confused. He’d lose his wallet. He’d called me. He’d tell me someone tried to mug him. He’d call me. He said someone tried to drive down the driveway and steal his car. It felt like paranoia or delusions. Now, he’s a different person. He’s much more like my dad. You know Alzheimer’s patients don't do well with stress. It triggers them. I think he was stressed. So I try to keep him stress free. I think the slowdown from COVID has been somewhat of a blessing for us. We tell him we can't go anywhere. So we are just being safe. He reads the paper, he keeps the TV on. It's really been hammered into him and he’s slowly resigned to slowing down. We make dinner together. We laugh at the TV together. He’s really thriving in this environment, as opposed to being alone in a house that's full of memories and too big for him to manage and isolating.

With Alzheimer’s you molt your old self and you pick up these new traits and you have different needs. So we as caregivers need to learn how to meet those new needs. It's a multi-pronged thing, It's not one magic trick. You are reading nonverbal cues.

Are you worried about getting it? I think why does my dad have it? He played football. He had a few head injuries. That might be it. Everyone else in my family is very sharp. My grandmother had it near the end but she was in a car accident that exacerbated her decline and then she got dementia and died. It was different then this. So maybe I’m ok. I smoke weed. So that might not be good for my brain. But I eat a whole diet and exercise. I’m trying to live my life.