Friday, April 27, 2012

Dementia Blues

I've been in a "funk" the past week or so. I knew this was going to be an emotional roller coaster. I was feeling really strong for a while; but for the past week I have been feeling really down. Nothing has really changed over the course of the week, but I've been noticing a change in my dad. He is a self-employed contractor. Despite our horrible economy, he's been doing fairly well for himself. The past few weeks, however, he hasn't had any work. He has been home everyday with my mom. Normally it wouldn't be such a terrible thing; and it's not that being with her is terrible. But it is difficult, and it can be depressing. Between the stress of not working and the stress of my mom (and finally slowing down enough to metally process her condition), my dad has seemed very depressed.

My dad is my hero; he is the rock of our family. He is a go-getter and an optimist. He is not the kind of guy to show too many emotions; his attitude, when life gets hard, is a "suck it up" and "deal with it" kind of attitude. He never feels sorry for himself and he doesn't let a whole lot get to him. He is also one of the most giving people I know. You've heard of those kinds of people who would "give you the shirt off their back" if you needed it. My dad would give you the shirt off his back and then go and buy you a dozen more. I have met very few people who are as generous and give so freely of their time and talents as my dad. When my grandfather (my mom's stepdad) was dying of Lou Gehrig's disease and needed round the clock care, my dad became his primary caregiver. He made time to work and still be there every single day to care for my grandpa. As tiring and as daunting a task that was, he never complained. Not once. 

It's been difficult to see this change in my dad over the last few weeks. I know it's not mom's health alone, but it is a big contributing factor. I can see that he is lonely. My mom is there physically, but mentally she's pretty far out there. She makes the same conversations day after day; talking about what a good driver she is, about this pain and that ache, about this medicine and that medicine, about her doctors, her upcoming visits,'s exhausting. Conversations with her consist of her sharing what is on her mind, the other person responding, and mom acting as if she never heard a word. Sometimes she will give blank looks, other times she will jump back into talking about the next thing she is thinking about. Occassionally, she will hear tidbits of what we say and that is after saying it repeatedly before it registers. Even then, she most often interprets things differently in her mind and hears something different than what we actually said.

For example, my twin brother and his family are coming to visit next month over Memorial Weekend. Camping for Memorial Weekend has become somewhat of a tradition in our family. We usually go up to the mountains with our extended family to the same campground every year; we have been doing this since I was a kid. This year is a bit more complicated; dad needs new tires on their camping trailer and due to a lack of work, new tires are not in the budget right now. We have been talking about different options including going camping in our tents, without the trailer. However, my mom refuses to go without the trailer. She needs a shower, she needs to do her hair and her makeup, she's not comfortable tent camping...there is no flexibility or reasoning on the issue.

I had a great idea. We have a campground only a couple of miles away from our house. It's not our usual, quiet place in the mountains, but it is close to home and has a lot of fun activities for the kids. It's close enough that my dad could probably drive the trailer down, and if not, it's close enough to home that mom can come during the day and return to her comfort at home in the evening. My dad seemed happy with this solution and talked to my mom about it. However, she apparently did not hear what he said. As I was driving her around yesterday, the topic came up. Immediately, her defense came up and she got upset with me.

"Your dad wants to go to the mountains too. And my brother's going too, he invited us too. Your dad said we were going. He really wants to go too."

Me: "Mom, dad can't afford the tires for the trailer right now and the trailer can't make it that far on those tires. The only way we can go camping is to stay close to home."

Mom: "No, I'm not going camping in those other things" (tents) "I'm not comfortable in those. I want the trailer. I need a shower and to decorate my hair and other things too."

I tried to repeat my point, "Dad can't buy new tires right now, he isn't working."

To which she replied, "I already told him I'd give him the money from my savings or we could use the credit card too."

My once-frugal mother is losing the concept of money. I tried explaining to her that they may need her savings for other things until dad gets some jobs lined up, and that to put something on a credit card means you have to have the money to pay it off. I don't know if she doesn't hear when I am talking or if her mind just can't process the words I am saying (though I'm fairly certain it's the latter).

"No we can just put it on a credit card. Your dad really wants to go. And if you go that other place then I'm not going!"

This is the condensed version of the conversation. Conversations like these can go on and on as we try to reiterate our point, hoping that she will hear what we are saying and eventually make sense of it. I am learning that it is pointless to argue with her. It makes as much sense as arguing with a two-year old. They are stubborn, they want only what they want and do not hear (or cannot yet process) most of what you say. They will pout and frown and make you miserable when they don't get what they want. This is how my mom has become. I am having to learn to let things go and not spend too much energy arguing and trying to reason with her. A friend (who was a caretaker to her Alzheimer's mother) told me that there comes a point when you give up arguing altogether; you just smile and tell them you love them. I understand her point completely.

It is emotionally exhausting. I think I've been doing considerably well over the past couple of months. For the most part, I have been able to keep my cool with her and I've been able to talk and interact calmly with her. I was very patient with her when trying to book her a flight out to see her brother, which was a huge ordeal. She was stubborn about which airport she flew out of (the more affordable airport is further away), stubborn about the times (they either left too early, came in too late, or took too long to get there)...she was confused on what luggage is and what layovers are (and why she has to fly to Colorado first to get to Montana) and threw little tantrums at the mere suggestion of a flight that wasn't ideal for her. It was extremely tiring. Yet somehow I was able to keep it together; my husband even commended me on my patience with her.

This week, I think I am feeling a bit depleted; my patience is running thin. Yesterday, I was all too anxious to drop her off at home after our venture out. It was all I could do to keep my composure and not lose it. I hate that I feel like this. There comes a point where it becomes too much to handle; as patient and understanding as we try to be, it becomes difficult in times when that feeling of depression is beginning to overwhelm your sense of reasoning. I know that as bad as I am feeling, my dad is feeling worse. It's no wonder why he has been feeling depressed lately. I am beginning to feel it too. I feel helpless. I wish there was something that I could do for my mom to help her condition to improve; I wish there was something I could do for my dad to lift his spirit and help him to feel happy again. I lay awake at night, worrying about both of them and the road that lies ahead. My heart is heavy and I feel a dark cloud looming overhead. I know that I need to do something.

I have heard that there are support groups for people dealing with dementia. I've even researched it a little bit. There is nothing specifically for Semantic Dementia, but there are support groups for Alzheimers. I'm hesitant to go. It won't really fix anything, it's not going to change my mom's condition. But I know that I need to do something to strengthen myself. My dad has been a rock for all of us over the years. Now it's my turn to be his.


  1. You have said it all for both of us. I find myself identifying with all the emotions you described. I don't like to talk about it so much, not do I want to sit down and write about it, so I am glad you are. A compilation of ask your entries would make a great educational book one day.

  2. It's disturbing how accurate your accounts are "Conversations with her consist of her sharing what is on her mind, the other person responding, and mom acting as if she never heard a word. Sometimes she will give blank looks, other times she will jump back into talking about the next thing she is thinking about.