My wife is right now, gone mentally but still physically here. Am I being selfish to want her here like this? I know she has no quality of life. But I just get so very scared sometimes of the thought of being without any vestige of her. I wish I had a greater faith, I know that would help. I don't mean to bring anyone down-but sometimes I get so scared. And my friends and family think I'm just a scared worrier. I really appreciate being able to share on boards like this. thomp360
You are right to be scared, thomp360. This is scary stuff. First of all, Alzheimers is going to win. That's inevitable. And it's a real challenge--not for the fainthearted--to take care of your spouse while trying as hard as you can not to let Alzheimers get you, too. It gets you in a different way, but it still gets you--if you let it. And it's an uphill battle to fight, that's for sure. Don't forget that while you're taking care of your wife, you also have to take care of yourself...much easier said than done. But people here understand the situation--probably much better than your friends and family do--and they will help you. One thing we have here is the knotted rope--you just grab the end and hold on--and the rest of us are at the other end holding onto you and helping you get through it. So here's the knotted rope--don't be scared--because we're all here and we've got you. x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----
And no, you're not selfish. Your care, love, and concern for your wife comes shining through with everything you post.
Thomp360, in my humble opinion (IMHO) you are not being selfish. Here, on this board, I am not sure you can bring anyone down. We are all here with you. In my mind whatever I feel is what is right for me. No one else gets.to tell me I am selfish or stupid for feeling scared. It sounds like you love your wife very much and even though she is no longer that woman, as long as she is physically there it not completely over for you. There is nothing selfish about feeling that kind of love. Far from it IMHO. I am a bit different in that I don't like this physical being that is living here with me. Frequently he doesn't behave anything like the man I married. Sometimes I wish I could rush to the end of this. Sometimes I am incredibly jealous of the ones who are done with it. No one gets to tell me I should feel.some other way. When I get scared like that I put on my engineer hat and start analyzing the situation. I want to go through his old photos and make more slide shows of his life so I can go through them when he is gone. I have kept some of the model airplanes and other flying chotchkes that he was going to throw away so that, when he is gone I will have some vestige of him. I have planned funerals for us. I work on my estate plan. I should have been an accountant, because I constantly analyze our financial.situation. I am pretty confident we can handle what is coming down the road. That kind of analysis minimizes some worries. But it doesn't stop the worrying.
thomp, you won't be without any vestige of your wife -- you'll still have your memories of her. One thing that I think helped me as I was losing my wife of 60 years was going back through a lifetime of photos and slides and picking out ones that would remind me of happy times. Those are the times she'd want to be remembered by. In the lonely months before her death my son and I found it a welcome and rewarding diversion going through maybe 50 Carousel trays of slides -- that's like 5000 slides -- projecting them on a screen and picking out about 700 to be scanned and placed on a DVD by a commercial outfit. All of those happy images now reside on my computer and my tablet, where I can "visit" with her anytime I wish. An enlarged photo sits on sort of a shrine in the living room, and I give her a wink and a blown kiss every time I pass. And even beyond that her imprint really is still everywhere in the form of home decorations, landscaping around the house, stained glass pieces she made, the dishes we eat from, you name it. Your wife needn't be gone as long as she lives on in your memory. With effort, I guess i could still summon up memories of the bad days, but I just don't choose to do that.
thomp, I was thinking about your comment on this thread and remembering how scared I was during my husband's illness. (He died in March.) I think a lot of us feel that way and we have good reason - this disease and what it does to families are scary things. The problem is that you are expressing your fears to the wrong people. Your friends and family just don't have the wherewithal to fully understand what you are feeling, so they just say things they think are reassuring. In addition to this website, you might look for a local support group where you can talk to other Alzheimer's caregivers in person.
I go to a local support once a month. It is wonderful. Sometimes we share and sometimes we listen and hug. Next Tues is our day and I am looking forward to it.
I think my biggest fear is when he placed, how much will they leave me to live on? SS tells me once he dies then mine will increase to almost what he was getting which we were able to live on. Being alone, being single - does not bother me as much.
I have suggested a few times to the group that puts on the Alzheimer's support group to offer one of them during the day instead of at 5:30. 1) during rush hour 2) have to fix his dinner before I leave - but they have not changed it. the regular caregiver group during the day is OK, but I would rather have one with AD caregivers. At the regular most have Parkinson's or MS.
It is something to worry about charlotte. I can afford us at ALF but, not her in memory care unit with me in alf, if she goe there where do i go? So, both in ALF as long as I can stand it. Maybe cancer will change things. ALF is,out of my pocket..
Charlottee, be thanfull for the little things. At least you can get away a little. My get away is the OR in the hospital. I give up a lot to keep things running smoothlike. Except for maybe doctor and hospital time it has been 24/7-365 for me.
I notice dcr's skin temperature is a lot more cooler than mine lately. I wonder if thyroid being affected by cancer. Face swelling slightly where angisarcoma has started. On Oct 10th Oncology visit the doctory felt all around her neck a long time. More cancer tests next week and an oncologist visit November 8th. Maybe real facts then.