I invite you to go to the home page- www.thealzheimerspouse.com- and read today's blog about my take on patience and acceptance, and post comments here.
Joan, I don't have much patience with Mac now when he forgets what I have said or the stories he has told me so many times. He is normal in many ways and I expect him to remember somethings if he would try. I don't how I will make it when and if he gets to the later stages. I can't imagine being patient day after day after day.
Patience come slowly and sadly. This morning the dentist office called to remind us of an appointment. When I told DH he had an appointment with Dr R. He said who is he. I told him your dentist. He has gone to this practice for 40 years and this Dr. for 12. Then he asked where is he located. As I explained where and how we get there all I got was a confused stare. I assured him I would go with him, drive him there. I could have cried, we had been there a week ago. He sees his neurologist on Wednesday. We will see how that goes.
I wholeheartedly and sadly agree with todays blog that patience and acceptance go handinhand. one without the other is most difficult. if i didnt accept that AD has taken my DH abilities to reason/think/act i could never be as patient with him now during the more difficult mental/physical issues. divvi
I was at the store buying dinner items. He had planned the menu. Baked chicken, etc. I noticed a "missed call" on my cell and it was from our house. So I called DH at home and he was wondering why I was calling. I told him that I had just missed his call. He asked what call. I told him that I had a "missed call" from our house. He never did acknowledge that he call me and then said something like "my (his) sister called me (him)." I asked him what his sister said in the call and he asked me what I was talking about and that he would just talk to me later. When I got home, I asked him if he needed anything when he called. He really avoided the question, so I dropped it. Then I asked him what his sister wanted when she called. He told me that no one had called and what was I trying to do confuse him or something. He is still so "normal" acting that this whole thing left me scared and up set. I can't believe that he called me and didn't remember doing it. I thought I had reached a level of acceptance, but I guess I have a long way to go.
Acceptance happened for me as I learned more and more about the disease. There are some aspects of it that I still have difficulty with. One of the best things about this site is that enough other people have run into similar problems that I don't feel so alone and isolated. That helped with accepting what was going on with him too.
My husband has not gone the slow steady decline route. Instead his version of the disease is one of plateaus and sudden steep drops. When those drops happen, it starts the acceptance process all over again as I adjust to the new level.
I have always had a lot of patience so as I learned I did better with the patience part. If you can handle it taking an hour and a half for a shower without losing it, you are being patient.
The other part is learning to keep your eye on them as you would a child and try and be there to stop something before they go too far and cause lots of problems. I found this more difficult when he was in earlier stages and still having lucid times. It was very hard to get my head around the fact that this grown person needed constant watching. That took a long time to accept and learn to be patient with.
Today as he no longer makes sense when he talks most of the time, I use his tone of voice and body language to tell me what is going on with him so I can respond appropriately to him.
Today, understanding the disease has helped me to accept it, but like bluedaze and Mary - I don't like it.
since I mentioned my store and phone call incident in this discussion, I thought I would talk about this one here also.
I have mentioned in the past that I'm pretty sure that age 54 DH has FTD but is not diagnosed. Has not been to the doctor with it. sometimes, he seems so "normal" that I question myself. I deal with a lot of moodiness, anger and agitation, rants, etc.
this happened yesterday. I had bought him some music CDs at his request on Friday. He played them a couple of times over the weekend. On Tuesday night, he told me that "the kids" (probably meaning our 29 YO son) must have taken them because they aren't in the cases. I asked if they were in the CD player. He said that he checked and that there was a different country CD in the CD player and that all three were missing. He was all upset because he wanted to listen to them and couldn't find them. Last night he mentioned again that he couldn't find the CDs. I checked all three CD boxes and the CDs were in two of the boxes. I looked in the CD player and the third CD was in the player. I took it out and put it in the case. He had me show him. He said that someone must have been at our house and took out the other country CD and put his in because it wasn't in there last night. Then he got really quite and didn't mention it again. This is how he handles these times when he is aware that something strange just happened.
This is just another one of the "weird" things that reminds me that DH really is dealing with something. Why is it that they always blame it on "the kids"?
I've been pretty 'proud' of my display of patience the last several weeks. I have this feeling that I'm growing and learning how to cope. You've all heard the old saying "price goeth before the fall." Well, I think perhaps today was the day.
We were playing cards at our weekly card social at church. He was bidding. Everyong was laughing and having a good time. He made a huge bid. I said "Oh, you must have a really good hand to bid so high." He got really sore and shouted "I just want the bid. I was his only opponent at that time so I passed and gave up. It turned out that we were then partners for that hand and wouldn't you know it, he went set.
He reacted that was two more times before we quit playing. Then we had a pot-luck lunch. He was standing back and not fixing a plate so I asked him if he wanted me to get something for him. He just snarled "No, I'm capable of doing it myself."
Two minutes later, he came over wanted a hug and a kiss and then he patted me on the bottom right in frong of everyone. He told everyone I was the best wife a guy could have and of course, they all laughed and agreed.
He doesn't remember any of this. And, my take on this....If I hadn't been here, I wouldn't have known that those outbursts can and do come. I just hope they aren't permanent and that he doesn't make a practice of doing it.
It's just like tonight. He wanted to have a barbecue with the kids. So I called them and they are coming over at 5:30. So then he calls and tells me that he hopes it doesn't go on all night because he is getting tired already. He asked what food I was getting and I mentioned a macaroni salad and sausage dogs. Then I call him back about something and he asked what we were having for food. Wondered if I had thought about it. I told him Sausage dogs and macaroni salad. then 30 seconds later, on the same call, he asks if we should have a salad with the sausage dogs. I told him that was a good idea and I would get macaroni salad. If you didn't know better, you would think they were "pulling your leg."
I agree the hug and kiss, and a** slapping thing is really irritating when they have just been really rude to you. It is especially embarrassing when they say unkind things in front of others. Even if the others know what is going on. I don't care, it's embarrassing.
Blaming things on "the kids" is quite normal for a dementia patient. There is an older thread all about that.
Repeating questions over and over again was one of the first things that led me to believe that there was something wrong with my husband over a year before I asked the first doctor for an assessment. It is a common early symptom.
I am soooo not patient these days. I swear that the next time he tells me he should get a divorce that I will go out and buy him one. He is finished working out of town and I sure don't know how he handled it. He must have been able to focus his energy on working because he was not at home having to deal with home issues. Now that he is home, all hell is breaking loose.
He has been home for two weekends and one full week. Each mid-afternoon, he gets tired and cold. Then in late-afternoon, he either gets more tired and wants to doze on the couch, or he gets agitated and wants to do a project or talk about a "problem" issue. Yesterday, we were going to unload and clean his trailer from working out of town. And get it ready for hunting. We elk and deer hunt. The first week (I take vacation) we camp/hunt out of the truck. It is always a little cold but we have the right equipment to handle it. After that, we take our trailer to a place in the mountains and hunt from it. Our hunt is usually me taking walks and him picking me up on the other end. Or we drive together and park and watch a hill side. Over the last few years, with him getting so tired and cold, we do not do much aggressive hunting. We hardly do a walking hunt together any more.
This being said, we winterized the trailer and organized on Saturday. On Sunday, we were going to put everything back in the truck and/or trailer. I do the dishes/ bedding / clothes. He handles stoves / heaters / hoses and propane bottles. Over the course of five really stressful hours, he wanted to take everything out of our large pole barn to organize it and put the trailer away. It might get rained on. it has been out in the rain for 4 months at work. Then he wanted to clean the garage. I got to hear that "the kids" or "our boy" must have taken this or that. Someone must have taken our propane hose, etc. All the time, I was yelled at for not being there for him to talk to, not paying attention, then he used the "no body likes or loves me," you must have a boy friend or you would be nicer to me. Then, all of the sudden, a switch was turned and he wanted to go in to the house "before he got tired" so that we could have a nice evening. Wondered if he did ok. Thanked me for helping and wanted to know if we had gotten a lot done, wanted to know if we had much more to get ready. I just said that we did good and were pretty much ready.
What a roller coaster. Also, there were almost tears Shoegirl. Sometimes they do come. For me, it's when I just can't take the verbal stuff anymore. My feelings get hurt. However, I'm hanging in there. Although we did have an incident reading the bank statement at noon. I'm actually looking forward to the time when I can give him the same bank statement each month and he won't know the difference. Better yet will be when he doesn't notice when I hid stuff. What a challenge.
Ummm ... Mary, you're not seriously considering letting your husband roam around with a loaded gun any more, are you? People who DON'T have cognition problems have been known to shoot other hunters or people hiking in the area. (Like, presumably, the Vice President.)
Short of tying him up which I'm sure would get me arrested for Kidnapping, without a diagnosis, and it being in the very early stages of what I'm sure is FTD, and with him thinking that I am the problem and not him, and with his doctor still thinking that I am looking for problems, I really don't have much choice. This would be a good discussion and I would love to hear with others who have hunted together all of their adult life. How did hunting finally leave your lives? He has been losing a desire for it for several years. He says he should buy a beef instead. May be next year, he can buy his beef and stay home.
All joking aside, Sunshyne, I see this as being along the same line as the driving issue, just a different weapon of choice. When is it over and how do you make them stop?
I have found from the other spouses who are dealing with FTD, that they retain so much of their (I'm groping for a correct word here) normalness, if he can be away in the mountains and away from the daily life stresses, he is probably much safer than in town doing something else, and he and I do pretty good together.
The short answer, Sunshyne, is probably Yes, at least for this year. May be next year, the beef.