This is what I wrote early in my journal: "Everywhere I went trying to find help for my DH, I was called the 'caregiver.' It drove me nuts. I was not a 'caregiver.' In this little scenario, I was the wife, and that's all I ever wanted to be. But no matter how many times I asked not to be addressed as 'caregiver' that's what it always was."
That was about 1995. And I, too, was never all that I wanted to be. I yelled when I wanted to speak softly, I rushed when I wanted to be patient. And too often I didn't care, I just wanted--needed--to get thru the day. The husband/wife marriage, as I knew it, disappeared--but thru it all, the love remained.
I'm very tired of it at the moment. I think my husband, stage-wise, is similar to where Joan's is. Our relationship is not contentious or loud, because I steer clear of conflict--it's my nature--and he tends to be a mostly passive guy...though that can sometimes mean passive-aggressive.
But I'm finding that I relish time alone. He's going to lunch with a friend today. Good. I'd rather be by myself. He goes to bed early. Good. I'd really just rather be on my own, but I will see it through, gauging decisions at each stage as we get there.
I just put my husband to bed. Whatever time he starts to go upstairs and I follow to help him, I somehow miss the evening news! At least, with cable, and stuff on the net, one can watch later much of what's been missed.
I've slept in my daughter's old bedroom, and he in our joint bedroom in a hospital bed, for the last nine years (that's when he had his last serious bout of infection in his leg). I think that really from that time on MOST - but not ALL - of the time I've considered myself his caregiver, although not realizing until couple of years ago that much of what I thought was just his obtuseness was shading into pre-senility and then AZ. Our fiftieth anniversary came (in '06) and went with no real recognition from him. I'd long since made a life for myself separate from the family, while still being a part of it. How many lives we can live - how many hats we can wear!
This is the first day that for the whole day he assumed I was hired to take care of him: talking of me in the third person: Clare does this, Clare does that. I watched a movie in the living room (thank heavens for Netflix) and he came in and sat down on the couch and lay there throughout the movie. He was annoyed that dinner wasn't ready at five. I said, the movie was over before five and that's when I have said that I will START dinner, not SERVE it. He said, when is Clare coming back? And I said, I don't know. None of this was acrimonious, he's too polite to be rude to servants!
So in HIS eyes anyhow, I have morphed into a caregiver. I think there may be advantages to this! but it does sadden me.
I am in a quandry as to my role in this relationship with my husband of 57yrs. For the first few years of his illness (AD) I was able to cling to the illusion of wife, then my title of caregiver became the prominent relationship with my sweetheart. However, I continued to try to relate to my DH as his wife predominantly. AS time passed, I finally was able to let go of the no longer realistic aspect of our relationship and accept the inevitable separation of our paths in this life.
Now suddenly , when I visit my husband in the VA home where he has been for the past 4 yrs., I am seeing him again as my husband and I recall the precious memories of our life together . I am rediscovering this precious individual and I once again feel connected to him.
I share this to reassure my friends that we may become primarily caregivers to our spouses and our emotions and relationships dissolve and change from sweethearts to mother/father and child. But the marriage committment is still within us lying dormant reasserting its presence from time to time and when we think our past love is truly in the past, we are surprised to find it alive within us never having fled for good but deep within waiting patiently to let us realize we are still husband/wife.
This is my first post to the message board. I have been a caregiver for about 8-10 years, full time 24/7 for 5 years. My husband is now a long term resident in a Nursing Home - he has been there for almost 6 months. He is 67 years old, and I am 66. We have been to gether for 18 years, married for 15 years. This is a copy of a letter I wrote earlier today to Joan, because of the blog she wrote today. If nothing else - I have learned patience from caring for my husband. Joan and I have become e-mail buddies for the past few months. Maybe someone will find some help from my past horriffic experiences. Joan I hope you do not mind my sharing this note with the others.
6/12/08 I am trying to catch up on some of your writings of the past few days. As I told you before, I am a little further on the AZ path - but I see so much of me in the words you write. When I read these words:
“As time goes on, you will become more and more of a caregiver, and less and less a spouse.”
Oh, how I wish someone would have said those words to me. I never realized I would someday lose my spouse, yet remain married to a stranger.
I knew the day would come when he would no longer know who I was - I never expected that it would come so soon or so quickly. The last four weeks I had him home, I dealt with more than I ever thought possible for one human being to deal with at one time.
He went from a kind, sweet, loving, caring person that was my whole life, my rock - everything anyone could ever want in a spouse, partner, husband, whatever term you could choose to use - to a 2" x 4" swinging person that I didn't know. I had no idea what was happening. This all happened within a two week period - followed by him becoming a stranger, a stranger that I did not know. Frequently they will strike out at the person closest to them - their spouse/caregiver.
Screaming, swearing, yelling - words I had never heard him use. He would never swear - even if he hit his thumb with his hammer. He was a master carpenter - the last week he was home he couldn't tell a hammer from a screwdriver.
Today if I can get one or two words from him, or a slight smile - my day is a good one. There are days I ask myself - "How much longer can I go on this way?" "Why him? He never did anything except help people." He would build a new kitchen or bathroom for someone - if they couldn't afford to pay him - he would just say "That's OK - please help someone else". Why does this have to happen? It is so unfair.
Thanks for letting me vent - We've been on this path for about 10 years - and yes, some days I pray that God will take him, quietly, peacefully, no fight, no stress, no agony - just let him fall asleep and 'go home'.
Thank you again for all you are doing to help people on this arduous journey. I only I wish I were able to write like you do - you have a way of capturing just what is happening - it is so real.
Be well
Ruth
I tell myself...
"I did not make him sick and I can't make him well..
all I can do is just love him and help him in his journey and keep him safe and secure."
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This a tough one to answer. My dh has been in a care home since Dec. I do feel a connection as a wife, but the caregiver status is the strongest now. When I visit him, he does not know me, but I get a big smile and he is happy to see me. The other day he asked me who I was (a first). When I told him I was Darlene, his wife he looked puzzled, but I got the big smile. When I see him, I see my husband of 31 years, but I know that connection for him is broken. For me, the smile is enough, because I know that is what he has to give now.
I feel trapped into taking care of someone I don't even know anymore. Last night he was calling my sister's name..later he said he was sorry that he couldn't remember my name. I didn't even realize that he thought he was calling me. I don't want to be a caregiver...it's never been my strength. And to see someone just continue to decline and understand less and less...some nights I just cry and wonder how I wound up like this. There is nothing of the man I married except a familiar bit of humor once in a while...certainly not enough to make me glad that I have to take care of all his needs. And when I read about what is coming...I just want to escape. How do some of you continue with this year after year...new losses of ability all the time?
You asked how I continue year after year....I do so because I vowed to do so at our marriage ceremony. I also know that my DH would do the same for me if it were me who had this disease or something else debilitating. However, I do not think my commitment is in any way the correct response for others. I believe we all have to decide our own path and everyone's situation is different. I do have terrible moments of despair and have just wanted my sweetheart's ordeal to be over so he could be with God. But then I know he must live out his destiny and my job is to make him as comfortable as possible , supply his needs, and be his advocate as he can't take care of himself anymore. We have been together for 57 yrs. and I won't abandon him now.
Is this the retirement I expected? Absolutely not.
Do I hope he has an easier end than some I've heard about? Oh yes.
Do I hope it will happen quicker than I think it might, both for his sake, and for mine? Yes
I do not think it is possible for any of us to say anything in here that someone, and possibly everyone, would understand. That is how this place was set up, and it tends to attract people who feel the same way as the founder does.
I will only ditto exactly what you have said. I too, feel trapped, lonely, hurt, hopeful (I'm sorry, but that's how I feel) that the end will come quickly and easily for him. I never expected our golden years to be like this. I try to remember that God only puts on us as much as we can handle. I only wish He didn't have such faith in me.
I've been taking care of my husband since before he was diagnosed 3 years ago. Since then I have given up a my husband a piece at a time, a way of life and many of the dreams I had for the future. He is taking the rapid combative path with the disease and going so quickly.
The selfish part of me says "I am 50 years old and am ready to get on with my life." The rest of me looks at him the way he is and knows this is not what he would want. In spite of that, I have learned to treasure each "I love you" from him and his looking at me and calling me either by my name or one of the endearments he has used with me over the years. For his sake, I hope he doesn't last too long and go to the bitter end.
I also like Mother Theresa's words but add to it. God also gave me free will and that means that I can choose how I will handle this. I did choose to put him in a facility and one of the side blessings of that is that I can sometimes be "wife" and not caregiver. Doing that has allowed me to relax a bit and still find joy in the occassional moment of lucidity and even enjoy some time with him. Those times are coming to an end as he progresses and I am so glad that I have had some of those moments.