The role of caregiver for your spouse is not what it sounds like. It is more how much are you willing to give up of yourself to help the person who looks like your mate but is no longer your mate. Their body is being occupied by half a person you knew to no one you ever knew. They might not even know you. You might be their Dad or Mom or a stranger to them. Yet because you loved the person who used to be in that body you do your best to make their life as normal as possible. You give up many hopes and dreams to meet the needs at hand. How much are you willing to give up to meet the needs? Eveyone has different limit and a different situation and level of support. Care Giver does not seem to be a fitting title.
I so much agree. I sometimes don't think I am my dh's caregiver, I am simply the person that loves him and am on this journey with him. Sometimes I wish I could leave but I know that when I am not stressed to the max, I would never leave him. This horrible disease is tearing both of us apart in different ways. It SUCKS,SUCKS,SUCKS!!!!!!!! Some moments I don't think I can give any thing else, then he does something so sweet and I see the man that I married, I forget the mean thoughts that seem to occupy my mind so much of the time. No matter what happens I will love him and do love him, but I sure do have a heck of a time with the progression of this disease.
Caregiver is definitely not the right word........ we give so much more....
No, my husband is in many ways not the same man he used to be. He no longer converses, makes decisions or does anything useful around the house. (I have him do some chores but this is pure therapy -- it would be much easier to do them myself.)
BUT in other ways he still is the same man, first and foremost physically. His presence means so much, at the table, beside me in front of the TV, in the swing on the lawn looking out over the pond with a glass of wine, and in bed. In good moods he likes to sit close or cuddle and after our evening bath he likes me to blow his hair dry and shave him -- physical contact that is comforting and pleasant for both of us. I cannot imagine -- although I have been trying lately -- being without him.
I wish I could express myself like the three of you do. But, there isn't really any need for me to since all I have to do is read your posts.
JeanetteB: The things you are enjoying most are the same things that I have tried to describe as the things that I miss the most. Not having them causes loneliness. Thanks.
And Mammie and Moorsb: Isn't it amazing how similar our experiences are and how much we think alike about this terrible disease. Thanks to both of you.
Dean: You are so right. They express themselves wonderfullly, for me, especially JeanetteB, because I wish I could do those things with my husband. He has become more of a loner since this terrible disease. Before, we spent our time together; now, he's more of a loner, which I don't understand because of his other gregarious self. It's really quite a shock to me, and very lonely. Of course, there are times when he chooses to spend time talking to me (not the kind of conversation I would like, it's mostly about the animals and birds he so enjoys), but, so what? I can see how much he enjoys that part of his life and I'm glad to take part in it. But, I so would love the closeness Jeanette describes. It would make getting through this so much easier.
Jeanette: I have a question for you? Does your husband ever get really angry and lash out at you? I don't mean hitting or pushing you, I mean verbal abuse? Does he have any empathy for you? Right now, I'm having some health difficulties but my DH just doesn't get it. Only things that directly affect him seem to matter. This was not always the case, although being a child of the 1950's, the husband always came first!
Bev, I only meant to emphasize those moments of PHYSICAL closeness, but that's all it is. There is no understanding. My husband has almost NO empathy for me (or anybody). Tonight we were watching a TV program that is very simple, but always has me in tears (and I don't ordinarily cry). It's called "Hello, Goodbye" and it's just this nice little man who walks around Schiphol Airport and talks to people who are seeing someone off or to people waiting for their loved ones to arrive. Somehow he gets them to express their love for each other or how much they've missed each other and to me it is so moving. Tonight there was a 70-year old man waiting for his wife to return after an absence of 3 weeks -- he had missed her so terribly -- and he talked about losing their only daughter 33 years ago, showing the picture of the 10-year old that he always carried. The man was in tears and so was I. Dh just looked at the TV and at me without understanding what anybody was crying about.
And, oh, yes I know what you mean about no sympathy for your health difficulties. I have had a very uncomfortable rash on my arms the last few days from something I got into in the garden and DH does not get it, at all, He's just impatient for his own needs to be taken care of. He used to get very angry and lash out but Risperidone (I think) has taken care of that. He's mellowed out, pretty much. He still gets upset with me in the late afternoon or early evening when he wants me to take him "home," but he's not nasty about it. He's very upset that his bike is chained up but he never realizes that I did this to him, or holds it against me. (I sneak out of the house to do it so that he does not actually see me.) When we get ready to go cycling he is always surprised that I have a key that will free his bike. He thinks I can work magic.
I posted my about my experience yesterday taking my DW to the Dr. Without going into the whole dreadful thing again, I will only tell you that I wanted to do it by myself. Only the two of us together for a little while. I planned on stopping for a cup of coffee and a piece of pie and just enjoying sitting in a booth in a little cafe. It didn't mean a thing to her and ended up being a disaster. As I said before, I won't take her out by myself again.
Yep, I'm just a person on the other end of the life-line. John has no real awareness. i'm lost in all of this. I'm no "caregiver" any longer as I have given that up to a nursing home. Gone are the days. I'm a married widow. That's all. Waiting.
I think that what I miss the most is the empathy that my DH had for everyone. Now I could tell him the most horrendous thing that happened to family or friend and he stares blankly at me and dismisses it as if I told him that it was raining outside. Took friends to dinner tonight for their anniversary and he didn't say more than 5 words....and people wonder why I always seem to be talking!
Ditto to all the above. I think this is the part that is the hardest, and there are days I feel MY empathy waning. It has been years since he gave a sh+t about anythng but himself. His world has dwindled to a few comments, almost always starting with "what about me?" This is NOT the man I married, if he KNEW the self-centeredness this disease had created, he would have been repulsed by himself. Most days I know it is the disease, but there are days I find it harder and harder to care. So sad. We were the best of friends for so many years, but now I see a shell of what I married.
I think the hardest thing to adjust to with their self-centered world is when you relate some news to them and they immediately bring it back to themselves. You'd think I'd learn, but I guess I just have the need to talk and share.
I hear you PrisR. I swear I am going to change my name after this is over, cuz if I hear my name called one more time I think I am going to freak. I swear I hear him calling me all the time, like a haunting. And again..when I relate any news, the refrain I hear is" what about me?" Boy, I am kind of crabby tonite on these posts. Sorry. I'll be more upbeat some other time.
Agreed. I sure do miss him having any type of empathy. If I'm not feeling well he doesn't care unless it affects him getting what he wants. All day I hear my name "Deb", "Deb", "Deb" usuallly in connection to something he want to have or do. Sometimes all I want to do scream (but I don't). I usually just say "what hon" as nicely as I can. Maybe a scarcastically sometimes but he doesn't understand the tone of things anymore.
One of the aides at my husband's day care asked me the other day, what would happen if I became unconcious or hurt where I couldn't help myself. Would he care? I honestly don't think it would phase him. I do try to carry my cellphone on me so if I do fall (I am clumsey ☺) I will have the phone with me. The aide was flabbergasted by the fact someone could lose that feeling. Bruce is the only FTD patient he has ever had, so some of his behaviors are a bit strange for him to understand. The center itself has handled others with FTD before.
You never know. We were shocked when my MIL had her heart attack and my FIL somehow figured out how to go to the neighbors to let them know something was wrong. By the time help arrived he was back inside himself.
I enjoyed your remark, Jeanette! I know my husband isn't as far along as most of yours. I do think if I should fall he would care and he would know enough to alert someone, but I really don't know if he would call 911. I also notice I cannot joke around with him. I forget that he doesn't get it but I still try to say things that used to make him laugh. Afterwards he looks shocked because he thinks I mean what I say and he's almost ready to start an argument. I'm still learning how NOT to react. I have to assure him I didn't mean it, it was just a joke.
I also notice when he talks to someone, even strangers, he gets very, very close to them, literally inches away from their face. I sometimes gently pull on his shirt or coat to help him move back. So far, he doesn't get angry at me when I do it.
gosh this thread is bringing back alot of these same things that i went thru so many yrs ago. and not pleasant ones at that. the loss of empathy for any concerns other than themselves. the blank stare if you cry or say you feel sick.
the loss of understanding a joke for crying out loud. its all so very sad. jeanette, your comment about going 'home' and the fact that hes asking in dutch.. that struck me that in all foreign languages they want to go HOME!! egads. it transcends the globe! the universal want of 'going home' must be happening around the world in every language-
Yes, divvi, and so sad that the humor is all gone. Almost all. Once in a while Dh and I can laugh about something together, usually something utterly silly. Sometimes I don't even know what we're laughing about, but if there's a chance to laugh I'll take it.
My DH always hated cartoons but I find him laughing at them now. He will smile at silly things but if I tell him someone died he just passes it off like I asked him to pass the salt. Went to the funeral home today and I had to get him to stop humming and whistling while we were in line. HE didn't understand why I told him to stop. It makes me wonder that if something happened to me or one of our children if he would react at all!