Coping With Dementia – Sorting Out the Feelings

A number of people have thanked me for spelling out what’s been happening with my father’s dementia and how we continually adapted to A New Normal. A few have asked me to go deeper with my feelings about it. That’s even harder for me to do and I’ve probably been waiting for something to trigger it – that’s how my writing works.  The occasion happened this week while in San Francisco.

A little background is necessary and it’s obviously easier to think about what’s recent more easily than when I was a child. In the previous blog, I noted that my dad’s an alpha. He’s a big guy at 6’2” and 190lbs with a personality that says when he wants your respect and attention, he expects it. That’s been the case as far as I remember. He didn’t get mad a lot and I dot ever recall physical punishment as a kid. Still, when you’re 6, screw up, and get this giant upset at you, it can be scary. Just looming over you and being mad was well enough to get the point across.

The definition of success. He never raced cars but with dementia, his stories became reality.

That’s the backdrop of me growing up and how he’d impose his will on the family. He was successful and had lots of lessons to give about life which made a lot of sense. As I graduated college, got married, and built my career, I was able to lean on this advice and use him as a mentor. We had lots of fun when we’d do things as a family. It was really a terrific relationship where I can honestly say I learned a lot and blended my own approaches to make myself into the kind of adult I want to be. I saw less and less of the angriness and much more of him as a grown up.  There’s a time when the father-son relationship gets to be more to a peer level and this worked well. It made me proud to do well at my job, sports I played, and building family. I really hope to do the same with my children.

Moving forward 10-15 years and this started to change somewhat. The side of him which had to have its own way resurfaced at times, particularly when in newer situations. This is where the San Francisco trip comes in. My father was 70 and about 6 years into a good retirement. My cousin was getting married in the Bay area in late May but my wife was teaching school and couldn’t take a week off just before finals. I took our boys who were 8 and 5 ahead of the rest of the family and toured  the city to make the most of the cross-country trip. Once my parents came in, this changed. We were locked into the Fisherman’s Wharf area because he was unwilling to travel around the city. This was frustrating because it meant we’d have to miss out on a few areas I really wanted to take my kids. While that was simmering somewhat, it got worse when it came time to go to Half Moon Bay for the wedding. The drive down the coast on Highway 1 is gorgeous and was in my plans for that day given that the weather was perfect. We picked up my brother at the airport and my dad refused to give me directions which were anything but direct (sorry, this was just before iPhones so we used an actual paper map). I did manage to drive us up the coast for lunch and we got to enjoy the rest of the day. I actively resented his actions though and had a very difficult time accepting it. Had we not been sharing a minivan, I would have split off from them.

Early stages of dementia added tenseness to even this scene.

Things changed more over the next several years. As long as I can remember, he’s been at one end of the political spectrum while my mother-in-law is at the other. She’s a successful attorney which translates to being highly intelligent and also being able to hold the focus of a conversation and make clear points. There were plenty of times when this made gatherings uncomfortable. Early on, they  would have two-sided conversations. Looking back, I’d have to say that his ability to make points in the verbal chess match went down as did his ability to grasp a differing point of view. There were plenty of times when I just chose not to join in because the post-dinner conversations migrated from being debates to pushing matches. Eventually, they really stopped happening which made things stranger yet. It’s impossible to have that kind of exchange without current events so he’d end up cornering a family member and going on about a topic of his choosing. These weren’t discussions, they were him showing off his knowledge and could get heated to the point of finger prodding. Since it would be World War II or Middle-eastern politics, the other person didn’t always have the same grasp as he did and they’d actually need “rescuing” after a while. Honest thoughts here were that this was embarrassing as I’d have to help manage him. It added to the stress factor which can often accompany family gatherings and really sucked some of the joy out of them.

A normally calm get together which could turn messy.

Dementia can cast a cloud over even the happiest of events.

This really came to a head prior to my oldest son’s bar mitzvah. My wife and I didn’t add everyone my parents wanted us to invite. She and I didn’t think much of it because every large event with a per-seat cost inevitably has people cut from the guest list. When my parents found out, my dad blew up. There were several tense phone calls which led to a sit down meeting at my house. The voice was up and the pointer finger was out again with him asking me if I “Wanted to run the show.” I hadn’t seen this since I was a child. It was certainly a big departure from that peer relationship we’d grown. I didn’t quite know how to handle it other than to push back. It certainly was our show not his and it became much more of an issue than the cost of a few plates of food.

There was something deeply wrong with how I felt the relationship was going and I don’t think I’ve ever really looked at him the same way. I certainly realize now that these were symptoms of dementia but this was also the old him trying to discipline one of his kids who’d messed up. Even now, I truly have a difficult time separating the disease from behavior I’ve seen him have well before it started. There’s a part of me which feels like dementia has stripped away those great fatherly traits and what’s left is a self-centered bully. I know that it’s exacerbated because his mind can only draw on certain memories and that his reactions have a lot to do with this. Dementia changes the part of the brain which exerts self control and that surely plays a role. While I know this, it’s hard not to let it affect how I feel. It’s a huge challenge which I have to constantly remind myself of.

Had he not been the kind of person he was earlier in life, it would be easier to attribute everything to the disease and be done with it. The conflict at times makes me divorce myself from history and just try to be impartial when making decisions. Choices can be a lot more black and white if you take the human factor out of it but that can also lead to some guilt.

Somehow this whole process has led to everyone involved looking alien to each other. He’s not who he was before and that’s changed us all as well.

Everyone’s perspective of reality ends up looking different and distorted.