Wednesday, August 12, 2009

Roller Coaster

Ugh! Having a loved one with Alzheimer's is just like riding a gut-wrenching roller coaster, one of those coasters that goes upside down over and over, and suspends you up in the air where you never know when you are going to drop. A few weeks ago I wrote about a party we had where my Mom was acting pretty normal. Apparently that was not the norm, and we've discovered that in the last few weeks.

After I pushed my Dad into going to the assisted living place to check it out, I noticed that the "run away" emergencies had tapered off. I was afraid that perhaps I pissed him off so much that he retreated even further into his shell and had decided to just avoid telling me about things that were happening. Well, I think that is not quite true. His doctor had given him some medication to help him cope, and it seems that the medication is helping him. No "normal" person likes to be put on medication solely to be able to cope with a sick person. But in my dad's case, it was a good move.

Over those few weeks, I just wasn't getting much information, so assumed that "all was well". It wasn't. Although he got her on a steady schedule of taking her meds correctly, every once in awhile something would get messed up and she would get her hands on the meds and double dose something. This always resulted in some sort of fight or difficulty the following day. I found out about some of these incidents accidentally. This really frustrated me because I felt that my Dad was no longer confiding in me about these problems. I didn't want him to suffer in silence.

Several of these incidents occurred on days he was to go golfing. I think that Mom panics when she senses he is going to "leave" her, so she wigs out when he goes. Sometimes things escalate to the point where he is forced to cancel, but some times he just puts his foot down and goes. In these cases she thinks he has "left her for good". When I hear about these incidents (usually from my Mom's sister, who she often calls when she feels lonely) I know that he is just golfing and will eventually be home around 3 pm.

I really don't think that she should be left alone anymore. My dad doesn't agree with this, but I think he probably does agree, but doesn't want to lose the tiny shred of independence he has left, and doesn't want the hassle of lining up someone to stay with her. I think he lets her make way too many decisions and do way too many things for herself that he should be managing. Of course it is easy for me to say all that, because I am not the one who has to deal with her moment to moment. When I voice my frustrations to my aunt, who grew up with my Mom, she says that she totally empathizes with him and fears her sister in the same way. Mom was a very independent, take charge person. Telling her what to do was not an option, throughout her life. When there was something she didn't want to face or admit, pushing her would just piss her off. Thing is, she is not that same person anymore. But it's hard to undo all the years of "programming."

A few weekends ago I called Mom and Dad on a Sunday night. I hadn't heard from them for a few days, which still bothers me because if I don't call I generally don't hear from them. Again, it's the programming, throughout my life Mom was the one to always call. She was chatty and in the conversation she matter-of-factly said "Oh, I blacked out at church today." What? I was shocked. This sounded similar to a blackout a few weeks before where my Dad said he had called 911, then cancelled the call when she came to and told him she was fine. The details she gave me were all jumbled, and I really wanted to talk to my Dad to get the story straight. She said he had gone to bed. Funny, I thought I heard him in the background trying to correct her details when she was telling me the story. I signed off shortly thereafter and pounded out an email.

Dad confirmed the next morning that the situation was similar to the other blackout she had. I was way irritated that he didn't think that 2 blackouts justified an immediate visit to her Doctor or at least a phone call to the Doctor. He seemed too lax about it, saying that she had appointments coming up later in the month, and that they would mention it when they went. I was frustrated so I called the 24-hour help line at the Alzheimer's Association. They had a counselor call me back, which ended up being while I was shopping at Target. I stood in the aisle detailing the situation. The counselor said that these were not typical Alzheimer's symptoms, and warranted a visit to the Doctor immediately. She was concerned that Mom might be having a stroke, or a conflict with her medications. I passed on this info to Dad and decided to back off. I told the counselor of my frustration with not hearing from my Dad anymore. She said that I shouldn't stop with the "advice" because he likely WAS listening, just was trying to process and implement things when he was ready.

Last Saturday we had another birthday party. Mom was way different than last time. She didn't talk much, and shuffled in like a 90-year-old. She had a confused, bewildered look on her face and was not very talkative. My cousin Katie was here with her family, and had not seen Mom in several years. She told me later she was shocked at how old and out of it she was. It really blew her away. And she was shocked at how little Mom had to say. In the past at any given get together my Mom was usually the biggest yapper. Mom did look like a little old lady. She had her pants hiked up so high that the bottoms were at least 5 inches from the tops of her shoes. Total floods. This is weird, she is 5'1" and has always had to hem her pants because they were too long. She looked ridiculous, and didn't seem to care. And it was the same damn pair of blue pants she wears every day.

Monday morning I heard my cell phone ringing. I looked at the caller ID and saw that it was my Dad calling from his cell phone. My stomach sank. He only called from his cell phone when there was a crisis and he had "run away". I picked up tentatively, and he said that Mom was in the hospital. She had another blackout incident that morning and he took her to the hospital. I don't think he forced her, I think that she told him she felt so strange that she wanted to go there. She was having a CT scan done right that moment. I got all the details and hung up, sort of relieved that they were finally going to find out what was causing the blackouts. I made arrangements to head that way to the hospital later that day.

Late afternoon I showed up at the hospital and Mom was thrilled to see me. We had a fun conversation and everything seemed upbeat. She was complaining about her socks being tight, so I offered to put on the pair of hospital socks that were all stretchy and had the grippy things all over them. She said yes, then proceeded to criticize the socks, saying they were "strangling" her, and that I put them on upside down. So much drama!

She kept scratching at her head and said she had bumps there that hurt. I took a look at the bumps and they were crusty dark red/purple patches. Ewww. I was worried it might be skin cancer, they were so ugly. We told her to be sure to mention it to the Doctor when he came by. The next morning, I found out that the Doctor was there before my Dad got there. That was disappointing, because we had to depend on Mom to tell us what he said. Apparently, she wasn't having a stroke, the tests were normal, but the spots were Shingles. Now that it was determined she had Shingles, which is infectious, they had to move her to the "infectious" area of the hospital.

When it got around time for me to leave, the nurse came in to move Mom's IV to her other arm. Mom thought she was going home. When she realized that she was staying the night in the hospital, she was mortified. She sat there like a confused, petulant little kid saying that she was not staying the night. It took about 45 minutes of coaxing. This pattern repeated itself later after I left and again the following day.

She is supposed to be released this morning, with no answers as to why she had the fainting spells. All the tests were normal, and the only thing she left with was a diagnosis of Shingles. So for now there is nothing to do other than get the shingles under control, and watch and wait for the next crisis to strike.