My DH is stage 6-7 in a dementia ALF. My daughter, who does not live nearby will soon be having surgery. I feel guilty-but as my DH no longer knows me I will be with my daughter. Of course, every time my cell rings my heart will go into my shoes. It is getting harder and harder to remember my husband as a vital important part of my life. Makes me feel selfish as I enjoy being without him.
Dear Bluedaze: This is Nature at work. Oh, God, how we want to hold on, but life moves ahead whether we want it that way or not. Don't most of us save baby shoes, teeth, hair, photos, little clothes? But we can't stay there forever. Babies move on, soon they have their own. Our lives change all the time. New memories replace old ones and then new memories replace those again, over and over. Right now your daughter needs you, and you need your sweet love more than he needs you--he would tell you to go to her. It will be best for everyone if you let Nature guide you. You are not being selfish, Blue, Nature is just telling you to breathe. We can't control it all.
I just can't get into this guilt thing. I didn't cause this, I didn't ask for this, so what is there for me to feel guilty about? I have absolutely no feelings of guilt. I have absolved myself. Sometimes you have to remember that other family members need you too, and what is wrong with that? Don't get so bogged down that you can't be a "normal" mother. She knows who you are! Of course you enjoy being away from him, who wouldn't? I spent the most delightful time with my son in NYC over Mother's Day. And you know what? Not once did we mention my husband. It was a total escape. I had FUN. Remember that?
bluedaze, I totally relate to what you are saying! Our daughter is getting married in August, and I feel so cheated that I get to have so little involvement! I actually wanted to find respite care and leave him behind...My daughter wanted all of us "girls" to get our hair done together the morning of (it is a noon wedding), and I would love to be fussing around and doing all the things I dreamed I would be doing on her wedding day. She is normally pretty tuned-in to her father's decline, but can't let go of her dream to have him walk her down the aisle! Every aspect now has to have a back-up plan! Her brother will walk her down the aisle if it appears her dad will be unable to. I have found a friend who will handle my husband so we can do the hair thing. Someone is ready to whisk him away if it looks as though he will be disruptive during the ceremony or reception. It goes on and on! I feel selfish for just wanting to be able to enjoy her wedding and not be worried what he may do; after all, she is his daughter too! This just is not what I envisioned for her day!
When our son got married almost everyone knew about DH. We had a caregiver for him and as he wandered around, the man kept track of him. My son & I walked on each side of him down the aisle. A bit unusual, but people understood. During the ceremony he sat suietly with me. The day went well. I hope your's does too--you deserve it and so does your daughter. He was fine for our daughter's wedding years before, and we did get our hair done together and I got to do hers. If he acts up, the caregiver will take him out & people will understand if there is an interruption. Please enjoy the day--really, it will be special, I know it was for us.
Marge, you deserve to be involved in every bit of the plans. having a caregiver who will be able to look after your husband is a very good plan. you didnt say where you are having the wedding in a hotel or such but i would recommend if you arent close to home where he can be taken if he tires or becomes anxious, then have a hotel room ready. maybe if it would be agreeable to your daughter you could have her/dad/you take wedding pics before it all starts and get that done just in case so hes 'fresh' and willing? the walk down the isle will be iffy depending on how far along and how he does in public etc. it may be too overwhelming for him so be prepared. i understand the daughters wanting dad to be present and all that, but you and she should be realistic about his ability to comply. if it were me, i'd be sure to have that CG there from the first minute to take charge of him. its the only way you can focus on the bride and enjoy it. i took my DH to a family wedding and he didnt do well and wanted to leave the whole time. it was stressful on us both. looking back i wish i had someone to just sit with him in the hotel room and not taken him..divvi
Thanks to everyone for their input! My husband is about a stage 6; we have been dealing with this crummy disease at least 8 years. The wedding is in Oregon; we live in Washington. My daughter decided to do it that way to reduce stress on me...near her house rather than ours.She has chosen a lovely location (I have only seen pictures so far!). At Christmas, he was referring to her as "that girl" at least part of the time. Just in the past two weeks, he didn't know me for the first time...thought I was his mother. She is hopeful the wedding day will be one of his good days...I, on the other hand, fear with being away from home and his routine, unusual activity and people (train trip down there, rehearsal dinner, meeting her future in-laws for the first time, etc) we are nearly doomed to expect anything but major confusion. The confusion I can handle, but if he goes into rage mode it will be awful! As I said, I really wanted to selfishly just leave him behind so I didn't have to worry how he will behave. Not going to be that way!
Marge: One other thing we did on son's wedding day, besides the CG, we gave DH a mild tranquilizer, enough to take the edge off, but still keep him going. Talk to his doc. You are right, it will be a lot for him to handle, but maybe you can skip most things like the rehearsal dinner, just so he's at the ceremony. Simplify it as much as possible.