Sorry, I have not had a particularly good day. It was a day that practically wrote the blog itself. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Alzheimer's Disease affects spouses, their marriage, their relationship, like no other disease, and it is devastating.
Joan, I am so sorry. This is one problem that continues to "hit me along side the head" so to speak. A good day takes me by surprise and I let my guard down, then the next day, which is normal, causes this effect.
Your description of your feelings reminds me of a day probably 10 years ago, or so. It was our anniversary. I wanted to exchange cards and have a dinner out; he wanted to clean the garage before dinner. before the day was over, I had been literally hosed down with a garden hose and hit in the side by the end of a wooden level. He saw the bruse the size of an orange a couple of days later and had no memory of the incident. I told him exactly what he did and he got very quiet; he did not deny it. I actually called a lawyer that day. I tore up the card that I had bought for him and swore that he would never get another. And he has never gotten another card from me on our special day. This june will be 35 years. Most of the years were very happy.
This is the closest that I came to the feeling that you just experienced. A total draining of all feelings that are good, and oh so angry.
You have an amazing uncanny knack of touching issues that we all deal with daily, and issues that come up regularly in my weekly support group. Your latest blog is no exception. Hang in there, Joan!
Joan, I totally understand how you feel. I think Mary In M hit the nail on the head for me when she said that a good day takes me by surprise & then I let my guard down. My DH like yours is also self absorbed, & yes it hurts so much. You describe the pain most of us feel to a T. In my case I know it won’t get better, it just takes me by surprise when I realize he’s getting worse.
Oh Joan..your blog brought me to tears and goosebumps. If it were not for this group of people that you have facilitated to have a place to come, I do not believe I would still have my sanity. The paths we are on are all different and all the same. Hugs to you, Joan. And thank you for being you.
((Joan)) I am so very sorry for the loss you are experiencing and the pain it is causing you. Even after all these years I still remember each monumental loss, and I can still intensely feel each loss. ((big hugs of understanding)) ♥ Nikki
Joan, I'm so sorry for what happened. you think the "case" is closed and out of the blue, it erupts again. They'll forget just about everything and then that little door will open again.
Joan, lower your expectations. I know how upset you are. One thing I have learned is to protect my feelings. I have come to realize that the AD person cannot have empathy. It is all about him. At times I feel like a servant. I could run myself ragged getting what he needs, finding what he has lost, putting out his clothes, giving him his meds. If I have a broken wrist or bronchitis, or cataract surgery, he needs his dinner at six, his coffee in the am. My DH was wandering in the hall of the hospital when I came out of cataract surgery. He had wandered away from my son and was lost. Now, it was about him, again. Don't expect so much and you will not be disappointed again.
Very good advice, maryd. I have finally learned not to expect hardly anything - then I'm not disappointed very often. Most of the time it is all about him.
it hurts very much when the realization of the profound loss hits us blindside. its almost as if our continued efforts to pretend things are normal sometimes makes us as bad as the memory impaired. over and over we forget that they arent able to retain or digest the things that are important to us now and our heart to heart discussions that we hope give them some reason. its a very sad day when you realize all that is over and the overwhelming evidence hits you square between the ears.
Like you I kept feeling at each stage that my DH forgot things that were so important to us or me, that I could never hurt worse than I did after each of those experiences. Then, one day he didn't know who I was, and never would again. I can't explain the pain in my heart, I couldn't breathe for what felt like a long time. It was worse than all the other things that crushed me. This journey is so emotionally painful!
Joan, I'm so sorry, and I can completely relate to your pain.
I read something the other day about how good crying is for you. I never was big on crying, but since it's so healthy I think I'll take it up as a new hobby...
Here is the link - http://www.divinecaroline.com/22189/87999-spilt-milk-seven-reasons-crying
And if anyone needs to jump start a good cry listen to this song. It was my 8th grade graduation song & I listened to it today and it just opened the flood gates: http://www.youtube.com/watch?v=HaVXfHZv50Y
Ok - I wrote elsewhere but now I found the correct place to comment on your blog. Yup, blindsided is such a good word to use - the out of the blue moment that comes out of nowhere. Just when you are having a day to enjoy life and think you are being so patient and kind. Then wham and wham again when a new deficit and a new attitude just comes sliding up to your doorstep of strength and forbearance and knocks you over.
Don't get started on the mini mental status exams which my husband practices for all day. He just can't fake out copying the designs. He's mild? Mild when he can't use a 2-button remote for the fireplace? He can't write a check or use a credit card. He still can drive to the grocery but that's it. He can't use his iPhone but I can send him messages & have a locator on it. Hasn't loaded or remembered his pills for 2 years.
I am thinking he may not know how to use his rod and reel. There is no visual planning or organization. Dressing is starting to be an issue. He can't write a sentence. He was capable of caring for the dog until last week, then no food or outdoor walks when I was out.
DH is 'dear husband'. On the home page - www.thealzheimerspouse.com - on the left side, there is a section that explains many of the abbreviations.
I thought I could not be hurt more than what I felt when he turned on me during the 'driving issues'. But I was wrong. Just as I predicted, last night, he forgot why I was upset. He kept apologizing all night for "making me mad". I told him I was not "mad". I was HURT. He said he never wanted to hurt me. When I asked if he knew what he had done that hurt me so much, he had no idea. Alzheimer's Disease is a completely NO WIN situation for both spouses, but I as time goes on, I think it is much worse on the "well" spouse. He is in his own one dimensional world where he is focused on his needs and wants, and he doesn't even know it. I am the one who remembers all the hurt, not him. I don't think it's good to push aside my feelings all of the time, but neither can I live crying constantly. As I said, a no win situation. I am living with a stranger who I have to take care of. Where is my husband? I hate this with a passion. Hate it.
I am so sorry for what you are going thru Joan...and at a time when you need to have the most important person in your life with you for support...this disease is truly awful! You know you have all of us with you in your heart, so take our good wishes and prayers with you to the hospital on that day.
Joan, so sorry. I think we all empathize with you. Because of issues like driving, bike riding, etc., I spoke with DH's PCP, and with her consent, I've stopped going to the twice yearly neuro appointments for just this reasaon. 2 visits ago, DH scored an 18 on the MME, the last time he scored a 21. On the long drive home, he pronounced himself "cured". He told everyone he came in contact with that he was getting better, and obviously he is declining daily. The neuro doesn't really do anything but confuse DH, thus the decision. I've also weaned him off of Namenda, as his PCP says she doesn't see any significant change. She now sees him twice a year instead of once, and she tracks his progression closely. Hugs to you Joan! Hang in there!
My heart hurts for you, Joan. I know the "dagger to the heart" you describe only too well. I, too, have noticed that although only a bit over 2 years of being diagnosed, my formerly loving, giving spouse has turned into a demanding, pouty, inconsiderate child, only concerned with his/her own well-being. I will pray for you and a successful surgery.
Joan, I am sorry that you had to get hurt. I wish it could be different. You are so good with expressing yourself. I felt your feeling on the blog of holding your hand. I was thinking as I read it, what a wonderful thing to have going in her marriage. I would love to have that and then I read your blog today and I feel what you feel also. I don't know if I have written about this yet or not but 2 months ago when I had my breast biopsies my DH told me that it was not necessary for him to go, I had my girl friend with me. You are right, that hurts, I don't remember when but my DH just all of a sudden a few weeks ago looked at me and said that he is getting better and he thinks he could drive. I told him that he isn't going to get better and asked him "If you think you are getting better then I guess you can go back to work then(delivering pizza) and he said no he can't do that and I said "why not" and he said "I guess I am not that better." He is bad enough now where the people that use to think he was alright is now saying that they can see they he isn't. Again, I am sorry that this disease is taking your husband away from you, I know exactly what you mean.
You know, I had feelings similar to yours, Joan. But, a few weeks ago I had major surgery and had been wondering what it would be like when I got home, alone with my husband. It's so much better than I expected. Even though his memory is going pretty fast, he's been nothing but kind to me. He carries things for me wherever I want to go (I have to use a cane) and is always asking if I need anything. I'm so thankful this is happening. EVen though there are times I have to remind him why I can't do "such and such," he's being very considerate, and I'm SO grateful...
Yes, Joan, we are all blindsided. I put DH in a nursing home, wednesday. In his room I hung pictures of the family, and old photos of old friends he had as a kid. yesteday, I was trying to show him the pictures to make him feel at home, and he didn't recognize the photos of ME, Not knowing who I was to him at that moment (mom or chris) I pointed out that it was him and Chris. OH, yeah??? Suddenly, I was having trouble even pointing out the people. I broke down right there, had to go into the bathroom and calm myself. The day before I also was upset over my visit with him. It doesn't end because he's placed. all that does is give you a little peace at home. It's such a horrible disease.