One of the curses of Alzheimer's is Sundowner's, the strange phenomenon that starts in the late afternoon and goes on for about 3 hours. There are many theories as to what causes it but I am going with the belief that it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Joe, Salina and Grayson were here last night. I told Salina it is like the days of the colicky baby, because while they are outside by the pool, I am in the house comforting a very colicky Mom! ; ) Like clockwork she started at 3pm and at 602pm she is sitting next to me resting like a baby.
Mom is adjusting to her new place OKAY but I can tell she misses her old place, the faces and the routines. We get better as I figure out what works best, like today I changed it to where I change her before her nap instead of after. I am thinking this is working better because she really does not like when I change her and so she looks at me with daggers. I started thinking maybe she would enjoy her awake time with me more if she did not have to use part of the time to get "un-mad" at me. So if I change her before her nap then by the time she wakes up she has forgotten being mad at me and now I am just the hero coming to get her for meals! It is just the first day but I think it is helping.
Mom has it in her to be very Tilson stubborn and she will flat out ignore you at times if listening does not suit her. Until today I thought it was a legitimate part of the ALZ but not anymore. We were sitting at the table for lunch and she was being impossible to work with. I started getting tears in my eyes and I said Mom you are not very nice to me sometimes and I do not know why you do that to me. Her head popped up immediately and she looked at me with such compassion. Her mood got a lot better. As nice as this interchange was I am not sure I am thankful for it because all along I thought her crankiness at times was the "disease" but now I will have to wonder if she is really just cranky with me!
Louis is so wonderful with Mom, I could not be doing this without him. He is so patient with the process and me as I figure out what works and as I do so often he is the one picking up the pieces. I just love him!
Sunday, July 31, 2011
Friday, July 29, 2011
Words not Required
So my Mom is dozing in the recliner and she wakes up and motions me over with her hand. I get up and walk over to her and she takes my hand and gives it a kiss and holds it so tight. That is why it is worth it ... because even in the tough times when it is all I can do to not scream I know deep down she appreciates me and will show it again like this just around the next corner! ; )
Settling in.
Things are getting easier as I get a good feel for Mom's schedule. Her breakdowns go from about 3-330 to 6-630 and then she is fine. It is like a water faucet, it comes on as fast as it goes off! I sent a video of her during her episode to my 2 sisters, both of them responded, "Oh My!"
Her naps are pretty consistent so I plan my to do list for those times. It really is a full circle scenario, Mom's world revolved around us as new babies and now she is like a new baby.
I am working on getting some respite care for about 4 hours a day 4 days a week. The Department of Aging provides 8-10 hrs a week paid for by the United Way. And then I will pay for some extra.
Almost time for bed and medicine for Mom so signing off.
Her naps are pretty consistent so I plan my to do list for those times. It really is a full circle scenario, Mom's world revolved around us as new babies and now she is like a new baby.
I am working on getting some respite care for about 4 hours a day 4 days a week. The Department of Aging provides 8-10 hrs a week paid for by the United Way. And then I will pay for some extra.
Almost time for bed and medicine for Mom so signing off.
Day 3 and 4
Wednesday and Thursday were not the best days. She does pretty good as long as I am in her line of vision but she gets very fearful when I am not and starts yelling, babbling, banging or clapping. She always settles for a moment when she hears the familiar chime of her clock that I brought here from the Roaring Springs house. Wednesday I took her to her room where all of her things are including a picture of her Mom and she just sat there looking at the picture and talking the language of Alzheimer's. There were pauses and inflections in her talk that made it sound like she was really in a conversation. When I went to get her I asked, "Mom did you have a good talk with your Mother?" She said, "Yes, it was nice." So I wonder ... She was calm the rest of the evening.
Mom hates getting her hair washed because of the water on her face. She screams bloody murder. It sounds like something straight out of a horror movie. As much as she hates the shower she does seem to feel so energized after she is all dressed, hair combed, and teeth brushed.
Evening came and she went into one of her episodes. She did not eat much supper. She laid down for a nap and when she woke up she ate more supper and then I climbed up in bed with her and we looked at pictures. After a while I asked her if she wanted to look at more pictures and she said, "No, I am tired" I said okay we can look at more tomorrow and she said that is a good idea. Sometimes she is so with it and then in a heartbeat she can change. Even though I hate her lack of memory at times it works in my favor. She absolutely hates it when I change her and looks at me with such contempt. But once I finish, I leave the room for 5 minutes and come back and I am the wonderful daughter again and we have a nice visit. She does not remember I am the one that just changed her! ; )
Mom hates getting her hair washed because of the water on her face. She screams bloody murder. It sounds like something straight out of a horror movie. As much as she hates the shower she does seem to feel so energized after she is all dressed, hair combed, and teeth brushed.
Evening came and she went into one of her episodes. She did not eat much supper. She laid down for a nap and when she woke up she ate more supper and then I climbed up in bed with her and we looked at pictures. After a while I asked her if she wanted to look at more pictures and she said, "No, I am tired" I said okay we can look at more tomorrow and she said that is a good idea. Sometimes she is so with it and then in a heartbeat she can change. Even though I hate her lack of memory at times it works in my favor. She absolutely hates it when I change her and looks at me with such contempt. But once I finish, I leave the room for 5 minutes and come back and I am the wonderful daughter again and we have a nice visit. She does not remember I am the one that just changed her! ; )
Thursday, July 28, 2011
And so it begins ...
Monday July 25, 2011 I moved Mom home with us. The place she was at was great but when her savings ran out money became an issue. I hated moving her again and had I known she would rebound the way she did after moving to Avalon maybe I would have done things differently. But like she taught us, you cannot cry over spilled milk.
So the first day I tried to move her from her bed to her wheelchair and it immediately went to slow motion as I watched her rear end go lower and lower until I knew that I did not have the strength to get her back up enough to get her bottom in the seat of the wheelchair. I thought, what the heck ... I have done this so many times at Avalon, why is it not working here. How did I get so weak or did she get so heavy? My only option now was to slowly lower her to the floor, grab a pillow for her head and then wait for Louis to get home. So I grabbed some pictures and lay on the floor with her and we sang and looked at pictures. It was actually not a bad experience after all. ; )
She has moments, but most of the time even though she has been diagnosed with Alzheimer's, she is very with it in the moment.
Tuesday I was ahead of the game ... I made sure to put the hoyer blanket in her wheelchair so that if Louis was not here I could be independent ... woo hoo! Well when it came time to put her in bed I was there, by myself (with the hoyer) and I got her into bed! I was so excited ... I will get better, it just takes time.
Then it came time to get her out of bed again and here I come with the hoyer ... but every time I start to raise her she squeals. You see she is laying too low on the hoyer blanket and I do not have the strength to pull her up. I just sat there and cried. She looked at me with the most loving eyes and patted my hand as if to say it is okay. I asked her if she thought we could do it without the hoyer and she said yes! As I reached to raise her up she sat up with so much power and energy, it was as if she was saying from here on out we are in this together and we will make it work together! I got her in the wheelchair ... just she and I working together!
The next time I go to get her out of bed though once again we end up on the floor! But this time I make a point to see what is happening before we get to the floor. She is slipping on the hardwood floors and so her feet slide out from under her. She now wears my converses, problem solved!
Wednesday was not a good day for her ... more later
So the first day I tried to move her from her bed to her wheelchair and it immediately went to slow motion as I watched her rear end go lower and lower until I knew that I did not have the strength to get her back up enough to get her bottom in the seat of the wheelchair. I thought, what the heck ... I have done this so many times at Avalon, why is it not working here. How did I get so weak or did she get so heavy? My only option now was to slowly lower her to the floor, grab a pillow for her head and then wait for Louis to get home. So I grabbed some pictures and lay on the floor with her and we sang and looked at pictures. It was actually not a bad experience after all. ; )
She has moments, but most of the time even though she has been diagnosed with Alzheimer's, she is very with it in the moment.
Tuesday I was ahead of the game ... I made sure to put the hoyer blanket in her wheelchair so that if Louis was not here I could be independent ... woo hoo! Well when it came time to put her in bed I was there, by myself (with the hoyer) and I got her into bed! I was so excited ... I will get better, it just takes time.
Then it came time to get her out of bed again and here I come with the hoyer ... but every time I start to raise her she squeals. You see she is laying too low on the hoyer blanket and I do not have the strength to pull her up. I just sat there and cried. She looked at me with the most loving eyes and patted my hand as if to say it is okay. I asked her if she thought we could do it without the hoyer and she said yes! As I reached to raise her up she sat up with so much power and energy, it was as if she was saying from here on out we are in this together and we will make it work together! I got her in the wheelchair ... just she and I working together!
The next time I go to get her out of bed though once again we end up on the floor! But this time I make a point to see what is happening before we get to the floor. She is slipping on the hardwood floors and so her feet slide out from under her. She now wears my converses, problem solved!
Wednesday was not a good day for her ... more later
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