This morning I got things set up so that my husband can use a computer keyboard with much bigger keys. My husband used to love to be on the computer, but because of his many issues his time on the computer is more limited of late.
Besides balance issues and a host of other issues my husband, Wayne, also has small motor issues. It seems like many times when he goes on the computer he messes something up on the computer, and I have to straighten it out after he is off the computer. So I hope the larger keys on the new keyboard will help. Hopefully, this will prove a blessing to him and to me also.
My son was here awhile this morning. He helped me take our desk on which we formerly had our laptop sitting down into the basement. I then took a long table from the basement, and now I have our laptop on this table with the new keyboard in front of it.
This afternoon my son took my husband to see my mother-in-law, who is terminal, for a little while, and then out to lunch at Pizza Hut. It was nice while it lasted, because I could enjoy the quiet and solitude of being alone and doing some reading. Because he had therapy yesterday and because he usually sleeps a lot the day after, I was a little skeptical about having him go away. I let him do this, however.
I think he enjoyed it also, but almost right after he got home he was falling asleep in his wheelchair. I tried to get him to transfer to his recliner chair which is much safer, as it goes way back. Well, that was an ordeal! When he gets really tired, he does not respond to gentle prompts, and I basically had to drag him into the recliner chair. I was afraid he might slip on to the floor. After I got him into the recliner he slept a couple hours plus and was a little better tonight, but he was still spacey. I am thinking he probably will not go to church tomorrow either, because he will be so exhausted. I am wondering if I should have kept him home today, so he could sleep and recharge.
So has our life been reduced to therapy three time a week and sleep days in between to recover? It gets a little discouraging. I am trying to remember the blessings tonight, and there are many. I can’t help but feel a little discouraged tonight, however. I don’t think I could handle this, if I did not have my Lord on my side and holding my future. I know there is purpose in all this even though it is sometimes hard to see.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
G-J
Good morning, Sharon. Although our husbands have different issues, I could related to what you were saying. My husband, Steve, started a sheet metal welding class this week. It is on M and W morning, He is gone from the house from 7-11. Monday, he came home, cleaned his desk, had lunch, and laid down for a nap – for four hours! With sleeping at night, that amount to slightly more than 12 hours of sleep. Friday night he was tired after having a really great day and slept over 12 hours. He naps for at least part of almost every afternoon. I can really relate to what you’re saying!
Denise
Hi Sharon–You’re doing so much to keep the progression of the disease at bay. I can understand your disappointment. It’s like: We do so much just to get to this?
Because of all your efforts, your husband is able to visit with his mom. He can enjoy lunch out with your son. These are wonderful and important events for him. It’s okay that you may have to adjust his activity level today.
Yesterday may have given you a better idea of his limits. Now you can make different decisions, if appropriate, about what he can manage.
The challenge is to not let a difficult ending to yesterday define yesterday. Because, really, it was so much more than that.
I hope today brings comfort and peace to you (and a little encouragement).
Bette
Hi Sharon,
I’m so sorry you were feeling discouraged. Last week, I arranged for a girl from our church to come by and share her pictures from her trip to Israel with us. My mother had gone to Israel years ago. About 10 minutes into the pictures, my mother excused herself and went to lay down. I try and arrange for “active” moments for her, and sometimes I wonder if there will just be more responsive weeks than others. My emotions are just very confused as to which direction to head in all of this.
I think to just know I’ve done my best has be the encouragement for me. We can offer variety, but only offer.
Sharon
Thanks to all of you for your responses. G-J, I think the need for a lot of sleep seems to go along with a lot of neurological diseases.
Denise, thanks for your response also. You are right in saying that one incident should not define the rest of the day. There were many blessings that day also. In fact, I try to think of the blessings of the day each evening. It is so easy to allow a difficult incident or moment to cloud the rest of the day. I think it is also more a reaction of fear that this is a beginning of an even more diffiuclt future.
Bette, you are right. We can only do our best and trust we are being guided.