Caring for somebody who has dementia is heart breaking. Its victims look and sometimes act so normal. You can't really test for it like an xray or lab work. It is relentless- robbing us of all our dreams and hopes. Outsiders can't realize the violence and fear that becomes part of our daily lives. It is terrible to have to diaper a spouse. Financial responsibilities are overwhelming. The isolation is awful. We have to remain strong while facing what we know is a losing battle. This will not have a happy ending. Thank you Joan for giving us this outlet.
It makes me cry to think of how many of us are living through this hell. As hard as I try to enjoy times with my husband, it is just a game of pretend since he has no idea of what's going on. I sometimes wonder how caregivers do this for years and years; I haven't been at it long and I feel so burned out and miserable.
I hadn’t read the bulletin boards in several days because we had a lot going on here. Having had a little break, as I was reading what people had written, I was really struck again by the nightmare that many caregivers are living through. It’s like our entire life has gone to pieces—but we are supposed to look and talk and act normal. And we are somehow supposed to manage a complete unmanageable situation.
Sometimes I wonder why we are trying so hard. Are we really improving the life of our loved one as much as our life is being destroyed? Are we improving it ten per cent of the amount that our life is being destroyed? I love my husband. We’ve been married almost four decades. I really do want to take care of him as best I’m able. But I’m also starting to ask myself if I want to be buried in the same coffin as he is. Is it right that we should give up so much—friends, financial security, our own mental well-being, our health, even our lives in some cases—to care for even someone we love? I keep thinking about “life, liberty and the pursuit of happiness”. Some days being a caregiver feels like I’ve given up all three of those.
Jan, I have had those thoughts so many times. It seem like this is a disease that takes the caregiver and the person with the disease, it takes all those who love them right with them. It is a disease that destroys two lives as it takes its journey. I would have to say that it is the length of the disease process that causes this to happen. Years and years slowly destroying both of us. You look up and the years are gone, and also your life with it.
As hard as I'm trying, I don't think my husband has a very good life now. He's frustrated, confused, unable to do anything for himself, and spends most of his time pacing and looking for things (maybe himself!!). So both of us are in this misery and I, frankly, want out of it!! I just feel pity for my husband and an obligation to stay with him. But I'm not the caregiver type and am so impatient and always yelling at him....it's no good.
I understand your frustration.The situation is terrible for all involved.It's impossible not to "lose it" at times.We do the best we as long as we we can and when we can;t cope any longer someone else has to take over.
I know what you mean too, FLgirl. I yell at DH as though he can help not being able to do the things I ask of him. If he could do something last week, and this week is struggling, I'll feel like he's not trying hard enough, which is ridiculous. Some days, I'm yelling at the kids and yelling at DH. Then I feel horrible, like the worst caregiver (and at times parent) on the earth. I feel like I have to take care of them all, but I fail miserably.
I have to be thankful that I don't have children to take care of...I don't know how you do it. My husband keeps telling me that he wants us to have kids! As many times as I explain to him that it is not possible, that thought is stuck in his brain and keeps coming back. I'm glad to hear that others experience the same feelings of failure that I do.
My husband most likely (now they think) has Corticobasal degeneration. He seems OK to others, and can still do lots. But he cannot do his high level job, has been on medical leave and goes on disability soon. There is more and more checking up I need to do. Seems like some days he just plays with email and sudoku instead of the household/family tasks. Tonite we had a fairly good time (physical) together. Then he asked me what I was thinking. I told him that I was sorry we had no future (2-8 yr is prognosis). We used to talk about future plans, some realistic, some not. But I was secure in knowing he was there and I could count on him. No more. He told me that our future is now, maybe that is our problem. I told him I don't think we have a problem...we are dealing with our lives as best we can, and according to the counselor better than most. Our 'now' is the present, and we've always valued that. I will still be here, so I can't stay up/wake up and have sex half the night. My job now is THE job so I need to be sharp and get my rest. With this condition he remembers and can learn/relearn so I do lots of teaching/reteaching. I continually need to be checking up to be sure things get done. He doesn't always tell me right away if he can't do something and needs to be shown again. He managed the finances of the largest college in the university and now can't seem to organize his day to get the few tasks done he needs to do. I'm sure they seem trivial and I try hard to convey how important his tasks are to our family. Never mind that doing things is good therapy! The counselor says the stress (situation, but now having to depend on myself) and sadness DO cause my increased tiredness. What is wrong is that my husband is leaving me and ultimately dying. WE don't have a problem. GRRRR. Sometimes I just wish for this all to be over. And my DH is pretty good...still able to drive well, etc. So I pray for patience. I'm not sure how I'll manage when things get worse. Thanks for listening.
Libby, you will manage just fine. you appear to be doing well, just try to releax and don't worry about things you cannot change, live in the moment as you are doing. You are fortunate you have a counselor to help you navigate the issues you face...in the back of your mind, you know the financial decisions you must make (living will, living trust, etc.) You can count on us to help you with the emotional stress of increased responsibility, and sadness. Welcome to our group of caregivers.