Update on Al
Alis doing pretty good on being home five out of seven days now. I think he likes not being tossed…
Al is doing pretty good on being home five out of seven days now. I think he likes not being tossed around on the bus and isn’t quite as tired. Although if he had his way he would go to Day Program five days per week.
His crying has leveled off quite a bit. The doctor took him off one of the medications and I think that was the culprit that made his tears so much worse. His appetite has been big lately. I guess he makes up for the days he doesn’t eat.
He got a Christmas card from a lady who also is in the M.S.A group. He really likes it and holds it quite a bit as it sparkles when you turn it in different directions. If anyone wants to send him a Christmas card, please email me at firstname.lastname@example.org for his address.
Although we have had our tree up for sometime Al has begun his ritual of now not being able to talk about Christmas. He doesn’t speak about Christmas that he and I share. His memories go back to when he lived at home and Mom and Dad were still here.
I heard him telling someone that he hated the holidays and yet he likes the Christmas tree lit up and the white lights in his bedroom. So I guess the point is he misses our parents so much and he longs for Christmas to be the way it used to. Deep down inside, so do I. I just don’t talk about it.
He has been complaining of burning feet the past two days. I have researched it and find that many M.S.A. patients have this issue. It is sort of like Neuropathy I think, caused from the disease. I give him pain medications but like his other symptoms the medication takes the edge off but doesn’t fix it enough.
Al and I had an interview with a young lady today who wants to work the weekends. Al started talking to her almost immediately. Filling her in on his coca cola and cars. She jumped right in and helped turn him and was dabbing his slobber.
I have to admit I was really impressed. She is strong too. She had no problem rolling him over. She said she wanted the job so I am hoping she will or can start this weekend. She will mostly be with him but I spoke to her about dusting his room and feeding him. Cleaning up the dishes. I think it is fair, don’t you?
I told her there would be no medications to give as I do that. I explained that her major job would be making him feel special, she agreed.
A Seed Was Planted
I started my day off pretty good but as it went on I became more tired, sleepy, worn out and…
I started my day off pretty good but as it went on I became more tired, sleepy, worn out and irritable. By the time I had to meet the hospice nurse, I must have looked ragged because she asked, ” what is wrong with you?” I guess my body gave me a way.
I had company this afternoon. The phone rang over and over. It was always about Al. I didn’t even get my 15 minute cat nap today. Oh don’t get me wrong, I would have it no other way. I like knowing Al is home and this is where he will remain.
But gosh dang, my age is starting to catch up with me. What I could do five years ago, I can’t now. What energy I had this morning was gone by afternoon.
I tried to talk Al into letting me transfer him from his wheelchair into the car. I said, ” let’s eat out.”
No was his reply. I brought him in and fixed supper. After supper he brushed his teeth. I emptied his lunch box and cleaned it out. I emptied his back pack and put his show and tell car a way in his room.
Then I changed his brief. He took one look at his room and started crying. I was afraid of this but had to do what I had to do. You see, I don’t like being the mean bitch of the house. But with Al’s illness going at a shooting star http://youtu.be/EUlJsbIXsNo I have to change things around in his room.
I had to rearrange his room moving his bed to another wall so I can parallel his wheel chair to the bed as he can’t pivot any longer. Of course I explained why I did what I did but he didn’t care.
Well I did care. I cared about whether he was going to fall. If I let him go it would take him about five minutes to move one step. I can’t afford that kind of time so this is once I did what I did for his sake.
After his crying spell was over I left the room and he did nap. I came out to the kitchen and did the dishes. I had pill boxes to refill and his takes a long time to do. Mine is done in about a minute.
I then got his stuff ready for his lunch for tomorrow and got his clothes ready for his shower in the morning. Finally, I was done. I looked at the clock and I had 23 minutes to spare before he would get up according to his routine. I hurriedly got me a nice cup of coffee and came over to the computer. I flipped my game on FB on and was in the middle of the first game and the bell went off.
Crap, double crap he was a wake. I didn’t know whether to laugh or cry. I went in and changed his brief. Lined up the wheelchair and stood him up. I took hold of his one arm to put him in his chair as there was no walking involved and he hung on to the bed for dear life.
I told him to let go that I had him. I think he about broke my back because my mind was on forward as his was on stay. Finally I got it done and he was seated in his wheelchair, transferred then to his recliner.
I started to walk out of his room back to my coffee and he wants to hold cars. Which cars I asked, those cars, which ones bud, those. Fine, I will figure it out. I will get each one down until you tell me I have the right one. Eventually I had the right one for him and came out to my cold cup of coffee.
I suppose I am hurting because I had to stand yesterday at the auction for four hours. My diabetic feet and back can’t take it. In order for me to get fully refreshed and a good day’s start I need 8 hours sleep. Ya, I know, to some that is a lot, but for my body that is what it takes to feel my best.
Day after day I don’t get that. Sometimes six, five, two, I never seem to catch up. I guess a little bit can be contributed to the fact I am almost 60.
While sitting here I remembered I hadn’t opened the mail. I discovered there was mail for Al. Three cards in fact. I want to thank Sandra R. from North Carolina. Thank-you also for the gift you gave to Al, Sandy. Diane S. from Canada, and thank-you for the prayer cloth my friend. Also I want to thank Paula A. from West Yorkshire. Thank-you also for the post card you inserted about Whitby Harbour. I appreciate you sending me my own little card with your photo on it. It is very pretty.
It was at this moment that God had intervened. He knew I was at one of my little breaking points. I was going to sit and cry in my coffee but instead he planted the seed that we had mail.
I took Al’s cards to him and his tears turned into smiles, then I smiled. I am tired, I hurt, I want to sleep for three days at least, but God let me know that you are all standing by me and Al.
God bless and many hugs to each and every one of you who has sent cards. I think in all he has about 21 cards. Remember if anyone wants to send him a feel good card please email me at
for his address.
As I am getting ready to close on this post I have to say caring for Al is very hard work, but he is working harder at staying functioning. My concerns are nothing to his, and when I get tired, I can stand by you.