Saturday our youngest daughter was married in DC. We traveled by car the Tuesday before. My parents were with my DH and I. The trip up was uneventful. But then things started to change. There was a lot going on and I knew it would be hard. I wanted my DH to walk his daughter down the asile. She was our last to get married. It had been my prayer that he would be able to do this. He was. Thursday, we went to get his tux and try it on for adjustments. I had to help him get dressed. This is really the first time I noticed how much help he needed from me to do this. I have had to learn to tie a tie. I cried. I cried at the rehearsal when they practiced. That was not the only time I cried this weekend. Friday night was the event that I had hoped would never happen, but knew that someday it would. We had returned to our hotel room after the rehearsal and went to bed. My oldest daughter and her husband stayed in our room so that they could help me get there dad ready the next day and still have time to spend with my daughter getting married. He got up to go to the bathroom as he does every night. I left the light on in there so he could find his way. When he came back he would not get in the bed. I finally got him to lay down, and he said he did not understand. I asked him what he did not understand. That is when he said "Who are you?". My heart broke. I held his hand and patted him. I said lets go to sleep it will be all right. He said why go to sleep. I told him it was night time. Then he repeated what he did before, "I do not understand, Who are you?". This happened 5 times during the night. I did not sleep the night before the wedding. We had dear friends of 30 years with us in DC and many family members. I called them and the next morning his best friend from childhood took him to Arlington Cemetary. He knew me that morning and seemed better. They brought him back in time for my son-in-law to get him dressed in his tux. I was given the time to spend with my daughter as she got ready for her wedding. He did well walking her at the church. I did get up to get him after the preacher asked who gives this bride. He just stood and did not remember what to do next. The reception was quite an event. He danced off many times with the guest. We would hunt him down and bring him back to our table. He did the father daughter dance and I cried. We slowed danced also. On the way home I held back the tears. But today, I have cried many times.
The things I miss. I miss my DH comforting me when I am stressed, like at the wedding, and telling me it will be alright. At a dinner last weekend it was pouring rain. I drove his mother and him to the dinner and let them out at the door. I parked the car and ran in the rain. I miss my DH letting me out at the door or just holding the umbrella for me. I miss him driving me. I miss him when I have a nightmare and cannot sleep. I miss talking about all the wonderful things that happened at the wedding. Our oldest daughter found out she was pregnant 2 months ago and we just now told everyone, and he was surprised. We had told him when she found out he did not remember. I miss having him be as excited as I am and hugging me and thinking of the future of our grandchildren. I am crying writing this. I miss my DH that could fix anything. I miss him handling all the things that need fixed around here. I mostly miss HIM. Sorry but I just had to come here and let it out.
I am going to England soon for a blessing that they are giving there for our daughter and son-in-law. My husband will stay here with family. I know that I need this break, but I will miss him.
Jackie: I almost cried just reading your post. It is just to real. I had a similar experience regarding my daughters wedding and my wife. I don't have time now, but, I will write about it tomorrow. I think you can relate to it. This is a cruel disease.
What wonderful memories will be in your daughter's photo album..her dad at her wedding, ALz notwithstanding. How wonderful he could do that.
I hear you about his not knowing who you are. I sometimes wonder if my DH isn't doing that at times just with a look that is puzzled yet he does not voice anything.
Your list has many things that we all miss with our LOs...so many things.....it leaves us with that hollow empty feeling.
Your trip to England will be wonderful, bittersweet to be sure, but still joyful..At the risk of being flip, you could take a picture of your DH and put it on a sort of little stick and have him travel like the kids do with "Flat Sam" It might be kind of fun for your daughter...something to think about.
I haven't posted much lately - just reading, but Jackie, I too, almost cried when I read your post. So many things you said, I have experienced. Not knowing who I am is one thing. When DH asks who I am or if I'm married, I tell him, yes, he's my husband and we've been married 58 years. He is very pleased that we are married and says he is so glad we're married. Then maybe 30 minutes later, he will ask me who I am again. All the things you said you miss, oh yes, me too! I was so heartbroken after we had attended my niece's wedding. There's an old post here stating that I couldn't quit crying so you are not alone. All of us here at Joan's place understand and grieve with you.
Oh Jackie, I’m so sorry that your DH’s not knowing you came during what should have been a weekend filled with only joy and celebration. No doubt all the whirl of the wedding, the traveling, and the strange hotel room with other people present contributed to his confusion. Try to focus on the positive – he did walk your daughter down the aisle – yay!
I totally understand the “missing him” - every minute of every day. I’ve also been missing myself. From my blog yesterday:
“You see, all those [my] positive personality traits may have come from God, but they were sustained each and every day by my husband. They came from knowing that each night I would go to sleep, and each morning I would awake next to my soulmate. The person who shared so many of my own values and priorities, and perfectly complemented me when he didn’t. The person who lifted my heart simply by entering the room. The person who cared about how my day went, who needed to know I was okay so that he could be okay. The person who could finish my sentences…who could share a laugh…who could make me laugh. The person who always had my back.
I was so very blessed for so many years! And to my everlasting shame – I took it all for granted. Joni Mitchell was right, “Don’t it always seem to go that you don’t know what you got ‘til it’s gone...”
My life is never going to be what it used to be. My future is never going to be what I had dreamt it would be. So far, all the alternate futures I have tried painting in my mind don’t work. The realistic ones are unappealing; the appealing ones are unrealistic. But I have to keep taking out the canvas and brushes, I have to keep trying…and trusting God.”
Ditto all that. The nighttime thing was striking and familiar, and getting him to just relax, because you're pretty sure he'll know who you are again in the morning. For now. Next year, maybe not.
But yes...missing all the shared experiences, reciprocal understanding, having a partner--we sure grow some strong bits on this Alzheimer's ride.
Jackie--your paragraph about the things you miss really hit home--very accurate description of my feelings. I am further along in this journey than you are--and I can tell you, from my experience--it does get better. You will never stop missing those things, but the losses won't be as acute as time goes by. Because of Steve's AD, I was forced to become stronger, to comfort myself when stressed, to share experiences with others that I previously would have shared with him. I know that any future relationships I have will not have the same level of closeness that ours did. And as far as fixing things--I've learned to "write a check"...just thankful for close to 30 years with never having to hire a handyman. I always knew he was wonderful, but as Mary22033 pointed out--I also took some of it for granted. Now I know how lucky I was.
P. S. Another loss--can't wear those stiletto shoes anymore--being dropped off at the door was great in bad weather and in bad walking shoes :)
Jackie and all of you that have contributed words of wisdom garnered from life experiences: My DW thought that I could fix everything regarding feelings, other people, finances (not the kitchen sink) and as her disease progressed, she relied (trusted, leaned on) me even more. The saddest experience of my life was when she thought I could fix her memory. She almost begged. And I couldn't. I don't like to think about it even nor because I can see the desperation in her face. Sad time.
On a little bit of happier note, a few years ago, our daughter divorced her husband and I think that hurt my DW (me too) worse than anything in our marriage. She thought I could fix that also, and I couldn't. She shed a lot of tears over that.
But, about six months before she passed away, they remarried. We had the ceremony in the NH and she dressed up(?) as best she could and attended. I bought her a rose. We don't know how much she knew about what was happening and I am sure that she didn't even remember the event a few minutes later. But, it happened while she was still living and I am so thankful and pleased that it did. It would still be great anytime it happened, but, it seems like a terrible thing in her life that hurt her terribly was made right.
yes this is deeply and truly written jackie29 and strikes deeply. Thank you so much for telling us that. I hope that your trip to England brings you smiles and joy, among your grief.
We had 2 weddings this year that DH was not able to attend..grand daughter in January and youngest son #2 just 2 weeks ago on Dh's birthday. I miss him too...no one to share special moments with, big empty house, that's not so much a home anymore.
Jackie I am so happy to hear he got to walk the bride down the isle. how wonderful for her and those memories. your losses signify what many of us feel. I am much further near the end of the journey going now on 14yrs. and still miss all those things you mention. it will always bring nostalgia and sadness now and in the after that we are forced to lose so much. your trip sounds lovely.. enjoy it to the max.! divvi
You miss all they did for and with you in the good days before the disease hit. Then, when they are gone from you forever, you miss them even more. The whole experience is very, very sad!
mary75--re your question--first of all, because of this experience, I don't stress as much as I used to over small things. Really, when you compare just about anything to the love of your life having AD, it pales by comparison! Second, I tell myself that if I could handle Steve's AD, I can handle whatever the problem is. Even my tolerance for physical pain has increased because I tell myself "this is nothing compared to what you've been through". Bottom line, I know caregiving toughened me up a bit and has made me more independent.
Marilyn, thank you for your comments. I think you have pinpointed part of my problem. Yes, I may have grown so strong and independent when caregiving that I have little tolerance for things that pre-AD I would have let go out of fear. A balance is needed.
Jackie, your post really pulled at my heartstrings. The first are so very difficult, that it happened on such a joyous occasion is sadder still. As others said, try to concentrate on the beauty of the day and that he was able to walk his daughter down the aisle. One day, this will bring you comfort. ((hugs))
Your post got me all teary. I so can relate to what you wrote. Our daughter got married last October and my husband wasn't able to walk her down the aisle because he didn't understand what he needed to do. Our son walked her down the aisle. She didn't have a father/daughter dance because we weren't sure he would cooperate. But it was still a lovely day and he behaved himself. Had friends help keep an eye on him so I could enjoy our only daughter's wedding. I'm glad that your husband was at least able to take part in the day.
It's like a door opens and shuts. I'll never forget the time my DH asked me (out of the blue) who I was. I cried and he didn't even care. No comforting at all. Not at all like him.