Yesterday I went to the first appointment for a 36-week study for a medical condition that I have. It was a really strange experience. For six and a half years, every single thing has been about DH and the illness he has. This was about ME and an illness that I have. Reading the literature I got was really different. It had caregiver information, but it was how MY caregiver was supposed to help me deal with my disease. I do have several reasonably serious medical conditions, but I certainly don’t have a caregiver to help me. Instead, I’m a caregiver for somebody else.
I talked to several people over an hour and a half while I was there, and the subject never came up that my husband has dementia. (I can’t remember the last time I had a conversation like that.) We talked about ME, and problems I was having with my health, and with this disease in particular. It was like a breath of fresh air to me. No, it was more like having air—being able to breathe. For that hour and a half, I wasn’t a caregiver for somebody else. I was somebody who had valid issues with their own health.
For quite some time I’ve thought that it’s just way too easy to lose yourself in being a caregiver. Everything else can fall by the wayside if you’re not very vigilant to take care of yourself and keep a life of your own. I feel bad for even saying this, but I think I’m ready to try to reclaim a lot more of life for myself. Not just little bits and pieces here and there, but a real life of my own. With my myriad of health problems, I’m certainly not guaranteed an “after” period where I get to try to regain a normal life. If there’s any life to be lived yet, I think I need to start doing it right now, while I can still function enough to do it.
Why do I feel so guilty for wanting to have a life of my own? I think it’s another cruel aspect of this disease, that we wind up feeling guilty if just being a caregiver for our spouse isn’t enough for us. When we decide that just making their life as good as possible for the time they have left isn’t enough to keep us happy, we feel guilty about it. Unbelievable. Why should we feel guilty for wanting to make the time that WE have left as good as possible?
No, I never really had such thoughts, but then I didn't have your medical situation. But your words and conclusions make a lot of sense. It's something all caregivers should strive for. We get so caught up in caring for our LO, we all but disappear. For what it's worth--I give you permission to have a life of your own without feeling guilt. Good luck, Jan. I hope the study you are in has positive outcomes.
Jan K. - I have thought a lot about it but doubt that I will ever act on it. My husband has been in placement for 3 months and I truly thought that having him there would free up some time for me but it really hasn't. I still work all day and I go off to the nursing home right after work so that I can feed him his dinner. I come home, grab a piece of toast or a bowl of cereal and go to bed to get up and do it all over again the next day. Last week a woman I work with had a "ladies night" at her house. Dinner and watch a movie. There was 8 of us. I was really looking forward to it but ended up miserable. I think I have forgotten how to socialize and by the time "after" arrives for me I can see me not wanting to go anywhere or do anything. I am that way now. All through dinner and the movie I just kept thinking that I should be at the nursing home and not where I was. I know that I have no one but myelf to blame for this but I just don't know how to change it.
Jan - Sorry, I was sitting here trying to phrase my next remark in my head and hit the add comments button without meaning to. Hope you get a lot or insight and support for your own medical condition. It sounds like you really got a lot out of the first session.
Jan, you asked: "Why do I feel so guilty for wanting to have a life of my own? " Because we have been raised to take care of those we love, especially when they are ill. No one knew that it would entail YEARS of care (and of them not even knowing we are doing it)! That is why we feel guilty.
NOW, SHOULD WE???? NO!!!
We are individuals first and foremost. If we don't take care of ourselves, no one will, especially in our present situations. We have the right to have our own separate lives. We can make certain that our spice are cared for, whether in our homes or in ALFs or in nursing homes, but we are entitled to pursue our interests, hobbies, jobs (for those of us who have to work) and HAVE SOME FUN on occasion! I honestly can't remember the last time I went out and had fun. I've gone to the movies (and taken my husband and got him a bucket of popcorn to eat while I watched the movie) and gone out to dinner (and taken him and cut up his food for him so he could eat). While both are bringing me some small pleasure, part of my brain was constantly looking at him, making certain he was okay, and since he can't talk, conversation with him is non-existent.
I don't know if I remember how to have fun. AFTER, I'll have to relearn to let the past go and reach out and have fun again. Now, I settle for a good book in my recliner while he sits in his and either sleeps, watches me, or glances at the TV.
Jan, I am so sorry you are having health issues. I pray that none are debilitating or fatal, or that you will require someone to take care of you. I hope that you can recover from all of them. Please keep us posted. (((HUGS)))
Maybe after all is said and done the 'new' group of caregivers, who come after us here, will be able to learn that having a life separate from AD is to be started early on.
i probably would have strived harder to maintain my own friendships and social circles more if i knew what i know now 10yrs later.
not getting so overly consumed by AD along the way that you forget your own likes and self worth needs to be more on the forefront for sure. its so easy to get wrapped up in all the sickness. divvi
Today's "Dear Abby" Is grief can begin long before a death. It addresses the guilt issues for caretakers and also as one reader said It is a grieve-as-you-go-guilt. If your paper has this column it is well worth reading.
Dear Abby | Caregiver's grief began long before her husband's death By JEANNE PHILLIPS Universal Press Syndicate
DEAR ABBY: I am responding to “Alone But Happy in Canada,” who feels guilty because she feels relieved following the death of her husband from a long, difficult illness.
Everyone grieves differently, but I don’t think grieving a loved one’s loss BEFORE his or her death is uncommon. I’ve known several people who watched loved ones wither away into helpless, needy and miserable individuals. I can’t think of one who didn’t feel the same as “Alone But Happy.”
I have begun referring to it as “grieve-as-you-go guilt.” A person grieves through the decline and eventual demise of a beloved mate, and when she fails to feel sadness, she substitutes guilt where she believes her grief should be. But actually she has been grieving all along, and needs to acknowledge that fact. Only then will she be able to enjoy not only her clean house, but her clear conscience as well. — Azy in Washington
DEAR AZY: You have keen insight. Other readers wrote wanting to offer reassurance:
DEAR ABBY: Your answer to “Alone” was appreciated by all caregivers, I’m sure. Nobody knows, unless they have walked that particular path, how difficult and lonely it is to watch a spouse disappear over a long time, losing the history you share together, making hard decisions alone, and rebuilding an identity not tied to the past. Every morning brings a new bout of grief from the moment of wakening — every day another day you don’t want to face.
Keeping healthy and planning ahead for yourself, not as a caregiver but as a participant in the “real world,” is the only way to maintain sanity sometimes. Though I love my husband dearly, I look forward to having a life again that is not centered on his disease. No one should be made to feel guilty for restarting life when he or she has given so much. — Day at a Time
DEAR ABBY: I also lost my husband of 35 years just a month ago. He endured several years of health problems and as his caregiver, I, too, felt a great sense of relief with his passing. I do not, however, feel guilty about it.
I realize that I have been grieving for several years already, as I knew this time would be coming. In many ways it is as if I am in the final stage of the process even though my husband’s death has only just occurred.
Our son put it best when he said at my husband’s bedside, “I lost my dad several years ago, but my father died tonight.” — Moving Forward
Mary, you are so smart. I didn't have a clue about posting that column here. Have I told you that I really like you? I do think that this is something that all of us should read.
It's a good column. Thanks, Bama and Mary. By the way, I think all of us here are smart, and I like all of you. I can't believe how involved I feel in everyone's life. I'm constantly thinking about Nancy's granddaughter and Jen and her family and Susan L. with all her problems and all the rest of you. I want to meet all of you someday. Maybe I'll do a tour of the U.S. with stops at all your homes - then on to Canada, England, and the Netherlands. Do we have someone in Australia also?
It happened that while the VNA nurse was here today I had two phone calls about orgs I'm involved with, and had to do a conference-call minicourse starting at 12 (she was here 11-12). Don't know what she thought! I AM involved with other things and am grateful to be so, I can promise you. This afternoon my husband was sitting in the room with me while I took a long involved call going over some problems with the on-line database we're using (to maintain records of members of a land trust). My friend and I got to talking about how the post office is trying to regularize names, etc. She had changed a particular street name from Alfred Drowne to Alfred Drown, because p.o. has. I said I thought that smacked of government nannyism. Got to talking about my name, which you know as "Clare" but which by my birth certificate is "St. Clare" - and by medicare is SAINTCLARE. And how I can't even begin to think how I could get medicare to change it!!
Jan K - What a great topic. You hit the nail on the head. Being a caregiver really robs you of who you are. We get so caught up in the care of our LO that we forget we have a right to some special time just for US. I can understand your feelings when you went to the Ladies Night. Your body was there, but your mind was with your DH, and you couldn't get over the guilt that you were doing something for yourself.
My life (aside from my time at work) totally revolves around my spouse. His needs have taken over my life. I turn down so many invitations to do things with "the girls" because I don't have that freedom anymore. And the care we have to give encompases every detail of that person's life ... feeding, bathing, dressing, doctoring, worrying, directing, sheltering. It's no wonder there's very little time left for ourselves.
I'm so sorry you have a medical condition of your own. I will pray that it can be taken care of. In the meantime, let's all of us try to free ourselves of any guilt on any level. We're all trying so hard to do the right thing. We need to cut some slack for ourselves.
Thank God for this website. Hearing what all of you have to say really helps. I love us all, too.
Jan K, when I read your post, it made me think through the last couple of years of my life. Because of stress, and not taking care of myself but doing everything for DH, my kids, and my Father, I ended up in the ER 4 or 5 times, had an infection that would not go away, which resulted in a pretty serious surgery, and complications after....then another few trips to the ER, then another surgery...all because I felt I had to handle everything and there wasn't anything left for me. Guilt is my middle name, but I have started to grow so much, to change the way I think, and to realize if I don't change, there won't be anything left. My DH loves the guilt trip thing, he always has, and uses it often. But now I realize I am doing everything I can, but I have to take care of myself. You need to too! There won't be anything left to give if you have nothing left. This site has helped me realize that I am normal, my feelings are normal, and I can get through this, but I need help, and I have to help myself first. Wishing you the best, as well as all others here, Linda
When my husband reached the point where he couldn't cope with people without going into a rage we just stayed home together. After a while I just started going places without him. Sure I felt sad-but not guilty. There is no reason for this monster of a disease to claim two victems. My enjoyment of life was not going to speed his progression into hell.
I posted but took too long. Here goes again...Thinking about this makes me realize how deeply we can become entrenched before we even realize it. The effort to do the first things (find out whats wrong)..the effort to find help..medicine..guidance..information..and everything else..THEN the work of managing..It can consume us.
Jan K, I do hope your health problems can be managed and that you do get the support you need. I certainly agree with Divvi, in hoping that those reading along in the earlier phases now, will be even more determined to maintain that healthy balance that we seriously need.
If we had known then, what we know now ... If I had known then, what I know now ...
I'd have found some way to continue to have a life. I'd have found some way to have friends over even if he didn't want to. I'd have found some way to go out with "the girls" or even to have had some women friends. I'd have...
I've got a To Do list for tomorrow and next week, and just added that I need to call the woman neighbor who helped me get to the Breast Center without my husband and ask for help again. My insurance company has sent the Advice Nurses after me because they haven't paid for an eye test in two years. I had eye surgery two years ago, and did not need glasses so I didn't go. But I might need them now, and the insurance company wants to pay for a glaucoma test. Pretty much or else!
I'm pretty good about going to medical stuff, but I can't take him with me for the vision test or to pick up the glasses when they are ready if I need them. He can't cooperate and have a test and I'm not buying him any more pairs of glasses. He has two pairs and can't cooperate to make sure that they will work either (the last pair needed adjustment and he could not explain what was wrong with them). I HAVE to go without him, but almost never have time without him, and I'm going to need an appointment for the eye test.
And this is why we don't take care of ourselves medically. Much less have a life of our own. It is all just too hard.
Starling, it's NOT too late for you to make friends or pick up with older ones. You sound to me like a strong and interesting person, and surely you can decide to work on this. Is there no way for you to get someone in for respite? Is it impossible to leave him alone for a short time?