Category — Tom's illness

Kim will be able to post about Tom’s illness here, under the category “Tom’s Illness”. It shows up in both the RSS reader and the Tom’s page and Archives but not the main front page. Look for more posts here.

This is a conversation between my lovely 11yo daughter and me. I am constantly looking for ways we can connect, her dad has a terminal illness and is no longer able to be “really” be there for her so I can to continue to try and connect.

ME: M, are you interested in taking a yoga class where we can stretch and meditate.

M: Meditate, what for?

ME: Well, you know, your dad’s illness is progressing and I thought you might need an outlet. We could meditate.

M: Where?

ME: Well, we can try a few places. Seattle is full of yoga/meditative places.

M: Great, can we go to Lululemon first, I just saw the most fabulous pants!

Silently, “My God, to be 11yo again. It would be wonderful to be so self-centered.”

It really is a benefit! I wish it was so easy for me, there is a part of me that dies everyday.

We are home from the ER where Tom’s pulse reached a low of 37bpm. Otherwise, his rhythms and blood pressure were good. After a long lecture from his physician we were allowed to leave. The reason for concern was he could have developed complete heart block. I have to watch him for a few more hours and take over managing his pills. On a happier note, the ER Dr. was an old colleague of Tom’s so he took great care of him and spent a lot of time catching up. It was nice to see him.

I am so tired I’m not sure I will make it through Maddie’s middle school welcome party tonight. I might fall asleep if I sit still too long.

This might be a bit scattered, I apologize ahead of time because I’ve been up since 3:30AM. We seem to be having a lot of issues during the night lately. Well, my husband got up and remembered he had not taken the multitude of pills he takes every evening so he decided to take them at 3:30. After awaking me to tell me how responsible he was I started to panic because he had taken his night pills at 8PM. Well, he takes a medication called Razadyne and it lowers your heart rate. This wouldn’t be an issue except that my husband is a big bike rider and his pulse runs about 41bpm and Razadyne lowers you pulse rate. I, of course, couldn’t go back to sleep. I continued to check his pulse while intermittently learning CPR on YouTube, making sure our life insurance was current, emailing his Dr. and calling the bozos at Poison Control. At the moment his pulse has only dropped to 40bpm and I guess I’ll have to wait and see what happens.

Most of you know that my husband was diagnosed with Early Onset Alzheimer’s Disease about three years ago. Most of the time I feel that I do pretty well handling his disease, this means that I can manage the sadness and difficulties fairly well. There are sometimes when I become very sad…there have been a few of these moments lately..

Tom forgot how to address an envelope. He couldn’t remember how to tie a tie. iTunes became incomprehensable. He picked a fight with Maddie more than once. He couldn’t figure out how to get out of a parking garage. I could go on and on but what is the point.

I struggle all of the time to keep things in perspective but it isn’t always easy.

Today I am a little sad, my husband had a difficult weekend. He got lost leaving a parking garage, had trouble finding a long time friend’s house after dark and forgot about a phone call he made to me 15 minutes later. Also, I have noticed for awhile that his ability to feel empathy has been affected by this disease. He has trouble accepting frustration in anyone other than himself. The reality of this disease is that it robs each one of us of something. Tom will eventually lose the ability to even recognize us. I don’t know which is worse losing your memory or watching the person you love most in the world lose his memory. My girls are watching their father become more irritable, forget the conversations they have had and be less tolerant of any noise. Sometimes, I wonder if I am strong enough for all of this. I guess time will tell.

Today we spend the entire day, at least six hours, at the hospital so Tom can be infused with a new experimental drug. These days are long and exhausting even though I will be sitting on my butt all day. I should have checked out a book on chair exercises or do you think the nurses will mind if I do lunges down the hall? I’ll just take the food baby to the side and quietly lunge along. Also, I have to take massive amounts of healthy food because the food sucks there, we have made the mistake of eating a lunch ladled with grease and not a fresh fruit in sight.

More later……