My husband had a very bad day. There were new symptoms all throughout the day. At one point it was obvious he didn't know who I was. He was looking for [Starling] and asked me if I knew where she was. It didn't get better. When he was ready to go to bed he started undressing in the living room. He has never done that before.
I've known that I needed to make contact with them for quite a while, but just didn't want to do it. I haven't cried, but I sounded like I wanted to while I was talking to them. The local agency will be contacting me on Tuesday. I asked for Tuesday because I've got dentists appointments for both of us Monday morning and a doctor's appointment for me in the afternoon.
If you haven't called the hotline, and you need someone to talk to, call them. I'm glad I did.
Starling, I am so sorry! Each new development is so hard to take. We know that they are going to get worse, that they will eventually get bedridden and then leave us. But knowing doesn't make it any easier to bear. My DH also lost the ability to know who I am this week. He referred to me as "that woman" but he wants to be with me. He hugs and kisses me every morning and every evening, but it's not his wife he's holding hands with, it's "that woman". Hearing about all the abuse others are suffering, his not remembering me doesn't seem so bad to me. He wanted to go to bed at 4 this afternoon and it took a while to convince him it wasn't nighttime, even though it was light outside. It has been a very bad week for his memory and abilities too.
Please keep us posted on what they recommend to you. My DH and yours are almost at the same level. YOU ARE NOT ALONE and neither am I. We have each other. You are in my thoughts and prayers.
My husband, too, has had a bad day with some new symptoms. Right now he won't stay in bed. He keeps muttering in bed and getting up to find me. He is progressing so rapidly that I can't even believe it's happening. He got very angry with me tonight as I was trying to get his underwear on him. Even his clothes touching his body seem to hurt him and if I push him to lean on something so that I can try and dress him, he acts like it really hurts. Soon, people will start thinking that I'm abusing him. He seems very sensitive to touch as well as noises. Is this common?
I've hiddent the car keys. I did it just before I talked to the Alzheimer's Association last night. He hasn't tried to go out yet to get his newspapers. I think he knows that he can't drive. It will be interesting to see what happens when we go to the dentist this morning. Will he get in the car? Will he let me drive? I haven't driven the car with him in it for years. I haven't been on a highway while I'm driving since we left California almost 4 years ago. I need to get that skill back too.
This morning is a bit better. He managed to make himself breakfast. I don't know if there were bananas in the bowl, but I saw the strawberries.
Because of another thread here, I checked the soap this morning. He decided he needed to take a shower, and it was the right time to do it. I tried to peak in while he was in the shower, but only saw the tail end. Did he use soap? It was damp, so maybe yes and maybe no.
One of the interesting things about the conversation was her surprise at how isolated I am for face to face contact with the outside world, and how much I've learned from this site.
I hope Frand doesn't have difficulty with her DH going downhill while on their train tour of the national parks. Hopefully not.
I just wish my DH would stop tearing up trash and flushing it down the toilet! I don't want a stopped up toilet when I go home.
Also, he can't remember what the dog food is, nor the trash can, the washer or dryer. When I got home from work on Friday, I found that he had disconnected the DVR and the tape player from the television and plugged the connections (not the electricity, the other wires) into the wrong places. It took me over 30 minutes to get it back to the correct connections and working correctly! It's strange that there are only two chores he can remember any more: making the bed and pulling weeds. He still bathes himself, and like Starling, I've started checking the soap and the level of the shampoo! I don't know if I need to call Alz. Assn. myself or just wait to see what they tell Starling.
I didn't ask about the bathing or the soap. I had another issue which was sending me into a tailspin. There was a question about my needing surgery. I've just come back from the doctor and I DO NOT need surgery. They found the very early stages of an umbilical hernia, and wouldn't have found it if they weren't checking up on another condition that they also found only because.... At this point nothing needs body work. They might want to keep checking up on stuff, but I haven't been given a time line on any of it.
I mean truly, what would I have down about this person who looks like he can take care of himself, but absolutely can no longer do so? Unlike a lot of people here the immediate reaction both at the Alzheimer's Association and at my doctor's office was helpful. I have been given a list of people and places to call, but I can do it on my own schedule. And I can calm down now.
Mary, I was told that the Alzheimer's Association hot line was a good place to go if you just needed to talk, and it was. Today's call came from the regional association in Philadelphia, but not actually my home one which would be Allentown. Again a good person to talk to called me, will send me a packet of information to follow up with and gave me the phone number of the Allentown office.
Starling, I am glad you received good news (or at least not bad news) from your doctor. We have to keep up our health!
I'm sorry if I gave the impression I wanted an answer about the soap issue! :) I meant if they offered advice in general. As to having someone to listen, I'm fortunate that I have several people at my office who are good listeners, and my close friends are good listeners as well. My best listener is my 45 year old daughter who lives with me and KNOWS exactly everything that I deal with and when she can tell that I'm getting upset, comes into the den/kitchen/living room (whichever room my DH and I are in) and takes over by trying to redirect him and letting me catch my breath. She's good at trying to make a game out of some of the stunts he pulls so that I'll laugh. I don't know what I'd do without her now! I am so lucky!
The Alzheimer's Association has given me all of their literature, and I've read it, but I still hang on to wanting to keep him at home without a person coming in for as long as possible. I guess I know when I take that step, there will be no turning back.
To FLgirl, yes, my DH is extremely sensitive to touch, by me or anyone. I have learned to be careful about touching him, especially when I am trying to get him into the shower. I did get a handheld shower and can turn it from full to about 1/3 pressure. I start washing his feet and then work up his body. It seems to be working for today. Who knows what tomorrow will bring. Nancy
I don't know if being very sensitive to touch is part of the disease or not. My husband would strongly overreact to a salesman just touching his shoulder. In his later stages a touch would provoke a full blown rage. Will we ever understand. Sometimes I think we in the trenches know more than the "experts"
Norbert had posted this info about sensitivity - on the ProHealth Message Board "Sensitivity to touch, and equating it with pain has been frequently reported. The best explanation seems to be that the brain does not sort out the sudden sensation and they automatically assume pain. Sensitivity to slight temperature change also causes an over reaction." This is so true with my husband, Gale. Nancy
That is so true...he is so quick to say that the water temperature is too hot when it is just lukewarm. And I will have to be more careful about how I touch him since it he really does think it hurts.
Every day it seems there is something new to worry about, deal with, etc. Just something else to hate about this horrid disease!
Regarding sensitivity to touch – don’t know if this would be applicable at all, but I had the same problem myself, and eventually found out that I had a severe vitamin D deficiency. If your loved ones don’t get outside much, it’s possible that they have one, too, especially if they live in one of the states with a long winter. A simple blood test could check for this problem. It was like a miracle when my doctor finally found out what the problem was. All that agonizing, burning pain from the slightest touch went away. I later found out that this is a very common problem, and that a lot of people with chronic pain are deficient in vitamin D.
And that is one of the few medical changes I'd be happy to make. I'll keep it in mind if the symptom starts showing up either in me or in my husband.
He can't take fish oil because it interacts with one of his other medical problems. But the stuff got me off pretty heavy pain meds. One of my doctors had started using it on himself for pain that came from arthritis, and started putting all of his arthritis patients on it just to see if it would work on them too. So if you have a chronic pain issue, and fish oil won't interfere with another medication you are taking, it is another thing to try.