I heard something on television tonight that really struck a chord with me. Someone said that their situation "feels like drowning—drowning so slowly that you don't quite realize what's happening to you". They weren't talking about caregiving, but it sure sounded like they were.
This is exactly how I feel right now—like I'm drowning. From reading some of the other posts recently, I feel like a lot of other people have similar feelings.
Lately I've been wondering, not about HOW caregivers can keep going, but whether we SHOULD keep going. Maybe there's a point (hopefully before we drop) when we say that no matter what stage we are currently in, we just can't do it any more.
My DH is in respite right now (and there is a long story behind that). A little, tiny bit at a time, I can feel myself unclenching from being on duty—and on guard—24 hours a day. Someone at the nursing home told me that they could tell that I really needed the rest and the time away. I asked them if I looked that bad, and they said no, but that they could just tell. I hope before the respite is over I will feel differently. But right now, I do feel like I'm drowning, and I'd really, really like to crawl back up on solid ground while I still can.
Jan - each of us are different and each has their own breaking point. I do not think I can go as far into the disease as many here have. I just do not have that type of devotion to my hb or don't think I do. It sounds to me like you are past the point of needing to place him or you need lots of help in-home.
I agree completely. There comes a point where everyone reaches the "I can't do this" stage, and for some it is sooner than others. I can tell that I'm a "sooner" kind of gal. Just his broken foot is wearing me out. I can't imagine what it will be like when he is totally dependent. I'm not cut out for that type of caregiving. I don't have the physical stamina for it.
I have to be honest. I don't think I'll be able to handle the later stages. My body will not be able to take care of his daily needs. I will never be able to lift him or turn him over. Hopefully, it will not come to that. Maybe some here will be shocked when I say this, but, he has a bad heart and I hope his heart gives out before his brain and body. I will take care of him, though, as long as possible.
Bev, we have all said that : we hope something else will take them before they have to endure the journey. So we are not shocked - probably most of us agree. Unfortunately my hb is healthy except for his mind.
I am like Joan and Bev - I don't think I can physically handle it if he falls or needs too much help. In my younger years maybe, but over the years in playing around I would grab his hand and try to help him out of a chair and couldn't without his help.
It does feel like drowning and I'm not sure respite is any real help. Just back from 5 days and I don't know that it helped recharge me at all. The free time was incredibly wonderful and fun (with family in another town) but it did not (and cannot) change the "real" life I have here at home. Ah well, just keep puttin' one foot in front of the other....
Weejun - respite can also be a time to put things in perspective. maybe see how much our spouse has changed; allows one to see they can not do it any longer - placement time as arrived; etc.
I am sorry that you don't feel any different, but it sounds like you did fun and that is important.
Bev, I'm not at all shocked by what you said. I think we all feel that way at times. Someone just asked me how my DH was. It was hard to answer because the situation is never going to get any better. He's really fine healthwise except for his brain, which is slowing deteriorating. My prayer is always, "Dear God, heal him or take him." I really don't want to see him get to the point where he is completely helpless and loses all his dignity.
I'm presently working full time, (I pay someone to stay with him from 9 - 5) but planning to retire in February to do full time caregiving. I wonder how I will handle that and if I'll get burned out. Right now, work is a form of respite for me. This sure is a hard road. I hope I have the strength and dedication to do it.
I always knew that placement was an option, but I was also strong and had perservence. Not high normal energy, I'm very sedentary, but my perservence carried me far past the time my body said to quit. And I wanted to do it--to prove that I could and because I truly loved him and was so attached. I had occasional respite from son & DIL, they were there in an emergency and I did benefit from that, but it's true, you do go back to the 24/7. Could people tell? My children kept begging, 'please, Mom, we don't want to lose you to the same disease.' They were right. I see photos of myself before placement & I can hardly believe it's me, it shows so clearly on my face. I've written this before and will again for those on the fence. I waited too long for my own good. Your LO will continue on whether at home or in a care facility. You're the one who is important that you family wants to hold on to. Respite, placement is for the CG, do it sooner than later. I know not everyone can do it, and how hard it is--been there, done that--but please--if possible--sooner than later--save yourself, you're worth it.
Yesterday I saw a neighbor at the grocery store. He asked how I was doing. I told him I was doing okay. That was as far as the conversation went. He couldn't wait to get away. I guess he was afraid I might really tell him how I was feeling. Of course, I wouldn't have....
Jan, you said it yourself and you know yourself better than anyone else. If you can still crawl back onto solid ground then do what you have to do to do so. Don't wait until you don't have the strength any longer.