How do you all do it? It sounds like many of you are so loving to your LO’s. I have been having such a hard time feeling compassion towards my DH. I have been treating him rather cold as of late. He hasn’t been angry or aggressive so I can’t blame that. He has been clingy & actually loving, but I’m having a hard time returning those feelings. I remember a while ago we (here) were discussing detaching ourselves from our LO’s (emotional divorce?) & I think that is what is happening with me. I hate the fact that when he comes next to me & tells me that he loves me I say I love him too, but I say it without any emotion. My heart is telling me that I need to treat him better, but it doesn’t seem to be computing in my brain. I have to admit that I have always had the problem of knowing the right thing to do, but not always doing it. (I guess being of stubborn German heritage has something to do with it). I feel like I have ice water in my veins instead of warm blood. Thanks for letting me vent.
You're not alone in that. It's impossible not to have those feelings. We're losing everything while they transform into strangers before our eyes. I have those same moments. We need to understand it comes with the disease and try to let those moments go.
I also believe it's almost always harder for the female to care for the DH although I have great sympathy for people like Phranque and Selwynfarmer where that is not true.
My heritage is german too. Wolf is short for Wolfgang. And even though I'm very hard on myself about most things (I can list almost everything I did wrong in my life) - I forgive myself my weaknesses and mistakes in caring for my wife - because even I can understand this is as hard as it gets and there probably isn't a person anywhere who did it perfectly.
Me too Elaine, I completely know what you mean. I feel like a cold fish too, not at all infrequently.
This is, of course, our way of trying to protect ourselves from re-experiencing the loss of our relationship. For those of our ilk (and I recognize the stubborn German heritage, but also just THAT sort of nature,) it takes a lot for us to open ourselves up emotionally, and our intimate affection with our spouses probably took time, and a lot of risky emotional vulnerability, to establish.
There are some who are more nurturing types. Who are better able to convert their marital feelings into a general kindness that emanates from their nurturing hearts. I'm not saying I have NO nurturing qualities—I love my kids and pets, and did not deprive them of affection. BUT, I am not that "everyone's grandma" type. This is the type that is everyone's grandma even when they're 13 years old, so that is not meant to be an ageist statement. It's just a character some people have. You know what I'm talking about. If you have that quality, it may be easier for you to behave more warmly toward an AD spouse, even if the relationship is different.
I don't have it. For me, when I turn on affection, it also opens the raw, wounded part of me that I am very careful to protect. Can't help it. They're connected like my middle and ring fingers. Bend one, the other tries to go with it. (I stink at the Vulcan "V" salute for this reason)
So, I am very walled off, to protect that vulnerable area. I do find that, with an AD person, you can fake affection. You can fake a smile. This is really the only thing that saves me from being too cold. You kind of have to learn to give affectionate pats, a kiss, a smile, without really opening the part of you that will hurt. For the most part this play-acting will work, and your AD LO will think you're a very nice person.
It is likely that, earlier in the game, they are more aware of the withdrawn intimacy than they are later. But that's at least half because they aren't capable of properly interpreting or receiving whatever affection you may be transmitting, so they feel a loss. But later, a general pleasant attitude and therapeutic "professional" displays of affection will work when your heart's not in it.
I remember a time when I didn't feel as loving. I think I was trying to protect myself from feeling too much. I tried the "emotional divorce" thing for a while, at times I felt anger, frustration, etc. It is a very scary thing to deal with this disease. Last year, when I did a trial placement/respite for a month I realized how much I did love him. I felt so terrible when he was gone and nothing seemed that important to me, afterall, than to be there for DH and enjoy what we still have. I took him home and he is still with me, Stage 6. We kiss, hug, I love him more than ever. Even though the intellect isn't there, the emotional part of him still is. I truly believe that there is more to a person than his knowledge and intellect, so, I try to feel the "being" inside of him, his soul, which is eternal. So, in a way, I can love him for what he is now. This is not to say that I don't get tired, frustrated, sad. I enjoy the time I can get away and get my mind off, and I've been puttimg a list together of the things I would like to do after this is over. Feelings come and go. Even if one pretends, or just goes through the actions, I think that is o.k. I'm sure people who had children (I never had any) don't always feel loving. I think we just need to accept and forgive ourselves for what we can't change. We can't force ourselves to feel. yet we can still go through the motions of kindness (and go to another room when we need to express our anger and frustration). I too, am German. I have learned to give up doing things perfectly and any decision I make can be change; and that everything changes all the time, I have no control and have to go with the flow.
I think that your continual presence and support says more to them than any lack of feeling on your part. They know you care because you're there, and all the smiling, warm and loving faces that appear only infrequently, or not on a regular basis, don't imprint on the A-Z brain as yours does.
I read your blog months ago and see that you have plugged back in. At the time your December 27 blog was the most recent and I was seriously impressed by how well you write and took me through the ideas and your thoughts about them. I remember the phrase 'all models are essentially wrong but some are useful' which you quoted as part of your article. That stayed with me.
Elaine, you do not have ice water in your veins. (((HUGS))) I am sure if you were in an emotional situation, not involving your DH, you would respond appropriately, with tears or compassion or empathy, or whatever was called for. The emotional detachment from your husband is a protective instinct. It’s not your fault; you should not feel guilty, or inadequate.
My experience may be similar to yours. I was married to, raised children with, and spent 28 years with my soul mate. Some people use the term “soul mate” to describe a Hollywood movie, starry-eyed, “you’re the only one for me” love. That’s not what I mean. I loved my husband. He loved me. Over the years of our marriage that love grew and in many ways we became one. Our souls became entwined.
What he said mattered to me. What I said mattered to him.
How he felt mattered to me. How I felt mattered to him.
When I had good news, he was the one I wanted to share it with. When he had good news, I was the one he wanted to share it with.
Whatever happened in our lives, big or small, good or bad, we shared it with one another.
Enter this disease.
I excitedly share some good news with him. He does not notice that I have spoken. Sometimes he seems unaware that I am present. This can happen in a tiny car, 6 inches from each other, with no radio or phones to distract. I am there. He is there. But there is no connection from him to me. What I say no longer matters to him. How I feel no longer matters to him. My news – good or bad, small or large – seldom matters to him. It’s as if our souls have separated. Our souls had been entwined for all these years, joined even if we were a continent apart. And poof! That’s gone.
And no matter how many times I tell myself it is not his fault - he cannot help what he is doing, he cannot know how hurtful it is, it is the plaques and tangles in his brain – no matter - it still hurts. And so then I have to tell myself – do not let him hurt you – do not let this matter to you – do not allow yourself to be swallowed alive by sadness – detach. And the separation begins in the other direction. What he says does not matter the way it used to. How he feels does not matter the way it used to. When I have news to share, he is no longer the person I run to.
I feel sad about this, but I do not feel inadequate or guilty. It is not my fault. It is not his fault. It just is what it is. What has happened to our relationship is the fault of this disease – plain and simple.
With the mountainous pile of negativity associated with this disease, I don’t think we should throw feelings of inadequacy or guilt on top of that pile.
And remember – what doesn’t kill you will only make you stronger!
I don't feel so much like a cold fish as I do just empty. DH is sweet and always has been. However, he was never a hand holder..like you see couples walking down the street arm in arm or anything like that..more standoffish is his style. That doesn't mean he doesn't care. The bloom was off the rose a long time ago with him when his health problems, starting with diabetes some years ago..so I just got used to living like a nun in the house with a feller who is sweet and thoughtful and kind. Sad huh.. Now when I see others, young or old walking hand in hand, arm in arm, I just think how lucky they are. I don't know that I would go looking for that again anyway after all of this..if there is even an after ( which is another topic in itself) because I am not so sure I would want to take the risk of losing it all over again due to disease.. Yep, the cat that thinks she is my mother is so full of affection and kitty kisses and purrs that sad to say that is enough as it is uncomplicated pure devotion.
Emily, I get what you say about protecting yourself and being walled off. I think some of the ways we start to protect ourselves has more to do with our own personal history of interactions early in life with parents and family than with our own partner. I was put in an orphanage right after birth..so there was no bonding , we weren't even held, and I don't even know if I really know how to bond with anyone. I see it around me with others and somehow I just don't feel it or "get it". It isn't that I don't care about others. I just don't get emotionally invested with them in the way mothers do with kids..I think I get more emotionally invested with my cats ( that are all strays) because we have something in common..they are all strays and I am a stray of a sort and someone took us in out of the kindness of the heart...so we respond in kind to one another..we have an instinctive bonding in that way.
One interesting thing about orphans....we have, by and large, an inability to trust...Why? The answer is simple...the first ever in life bond of trust, that with the infant and mother was destroyed...some how we have to figure out a way to self protect..
I don't think there is any right way or wrong way to feel about our situation and this disease! For the last 2 years I have been fighting my "normal" feelings of wanting to detach myself from my DH because on any other situation I would have never considered that. In the last few weeks though I have been getting tired of pretending and decided that I can't do it anymore. I need to protect my feelings. I want to be married and live happily ever after. ladedadeda! That is NOT going to happen, so get over it, I say to myself! That would be fine if I was not always staring at the object of my hurt. I think that we just do the best that we can and at the end of the day if you are still sane( sort of, totally subjective) and your LO has been taken care of, YOU DID IT RIGHT! Just know that you are not the only one that feels this way, I know exactly how you feel because I am so there I could have written what you wrote.
i guess what i can add to this topic is while they are still are spouses, the lost love and intimacy that we lose brings us to this. we are living with more or less room mates in the roles of caregivers and not real time spouses with all the entitlements. while they are still in mid -mid late stages, they are still able to show some emotions -not all good- and or hostilities toward us.do things that cause stress and keep us always alert and on our toes. its all cause and effect. we as humans thrive on nurture and good feelings which we dont get much of with this disease. what i did find is that in later stages when they are unable to walk, talk, feed themselves, and totally disabled and dependent, like the rest of us you may will begin to bond somewhat again but at another level. not as spouse but in a tender way of caring for a helpless soul who totally depends on you for everything. your good feelings toward them may return during this last phase. divvi
My thinking is along the same line as Divvi's.... in the earlier and mid stages I too had to "build walls". However, I never felt emotionally detached, I always loved him. But what I was able to do was to separate "my Lynn" from "Alzheimer's Lynn", I had to in order to survive. If I didn't want to hate my husband, I had to put the blame where the blame belongs, on the disease. I guess when I really think about it, I too had two personalities.... The wife who was kind and loving when "my Lynn" was present, and the aloof, don't respond, walk away, caregiver when the Alzheimer's devil showed its ugly face. I did detach in those times, but not from "my Lynn". Not sure that makes sense to anyone but me? But that is what helped me and how I coped.
Once you reach the later stages, when they are not able to do the things that are causing you so much grief now, I found that the protective walls start to come down. After all, at this point, what do I need protection from? I have had years to come to term with all the monumental losses. Now every little thing he can still do brings immense pleasure. I don't love Lynn like I use to, not the deep intimate love, but I do love him just as much, if not more. Just in different ways.... though my heart still loves him deeply as the amazing husband he once was.
I think the love must again change when they reach the "comatose" stage. I hope not to find out.........
Also, have the same feeling as divvi. I do remember a time when I felt the same way as many of you. Feeling a distance for the man I have loved since I was 17 years old, almost hate at sometimes. I think I might have been blaming him in a way for being sick...and putting everything onto me. Seemed like he was living the "Life of Riley" so to speak & I was stressed to the bone. When I had to place him for behavior reasons, I realized it was the stress & how much I really loved him. Now, just as divvi mentioned, since he no longer talks, feeds himself, walks & is totally disabled & depends on me for everything. I have taken on a different love for him, the good feelings have returned.
Monika--I can really relate to your post about the loss of intellect but the emotion is still there. It is the same with my husband and like you, I still love him as much as ever. He is the same man, just terribly, terribly limited by this awful disease. I have no desire to build emotional walls, and I would hope that if the shoe was on the other foot, he would feel the same way.
Dear Family, Thank you all for helping me through this. It was comforting to read all your supportive posts. You know, I’ve read previous posts about regaining the love in the later stages, although it is a different kind of love & you know what, I can actually see that happening. I know that it’s just getting through this mid stage, but it’s just so unpredictable. Anyway, thank you all for being here for me & each other. I do feel better.
Throughout this disease, I have never hated my DH at any time. As I said earlier, there was the detachment from the "intimate" stuff due to his other conditions. I look at him now, and see the hands that could handle the stick and take his jet streaming through the skies, the arms that could do pull ups from a dead hang, the ab muscles are still there that enabled him to do the lever..he had been a gymnast in high school, a foot ball player and an all around athlete, at 50 could out run some 18 year olds on the Marine Corps PFT..3 miles in 18 min...and now his hands are thin, his arms are thin,and of late I see even more changes coming..he is starting to need a few words defined, doesn't remember that he just ate breakfast and has a second or third...same with lunch..sometimes snacks all afternoon and will still eat all his dinner other times he won't finish his meal, I can't get him to drink more water than that dang diet pop, he doesn't get it why he needs water in order to have proper hydration...can't get him to go for a walk even up the cul de sac.. and on it goes...and there is the sameness of every day, but answer the same questions a zillion times, and see the expression on his face as he is trying sometimes with success to recall an appointment or event, otherwise not so successful. It is seeing someone who has/had a brilliant mind struggle that is so damn sad and heart breaking....and then wondering how much to tell the kids who are so far away ( as in overseas) about his present situation.
Mimi - I think you said it good about our detaching often has a lot to do with our past. I was detached as a child except where my animals were concerned. Growing up on a farm I had many to love and they only died when my dad killed them (many were butchered for food but some he killed because I loved them). My mother made the comment more than once that I would not let her hug me - would not sit in her lap and be loved. With my two adopted kids (age 1 & 2 when adopted) I gave all I had, yet there is not the bond there should be. I often question if I even love them. I can't even hug them. My grandkids I am good with until they get around 10 - then it is hard to relate to. I raised my younger sister and brother until I got married. They were 9 & 11 - were very angry when I left them and wanted nothing to do with me for years. Probably the reason why I pull away when kids are around that age.
My husband has never been one to share his emotions or what is going on inside. We have been like roommates for years so this is nothing new. emily- like you I have emotionally pulled away although I find not totally. I don't like to be vulnerable. He has hurt me enough and I bet it will not end until his last breath. But then, it may continue after there when I find myself too old to work and left with nothing.
Throughout the difficult early and middle stages I often found it helpful to do some reading in the Alzheimer literature that I have, or getting new from the library. Reading the personal stories and the guides like "Learning to Speak Alzheimer" (or, often, here on this site) helped me to remember to be -- and feel -- kind and loving. Now that he has been placed and I no longer have the 24-hour care responsibility and drudgery, the tender feelings come back more easily when I see him. But mostly what I feel for him is sadness and pity.
Jeanette, I feel the same way as you do now. Without the 24/7 caregiving the tender feelings are back, but, like you, when I visit him at the ALF where he's been for 7 months now the sadness and pity are the main emotions I experience.
Emily said "They're connected like my middle and ring fingers. Bend one, the other tries to go with it." Just wondered if I was the only who actually sat there and tried to bend them to see if the other one followed lol
I can relate to what Charlotte said about detaching. Even though our Mother took good care of us as children, she never once said she loved us. She was raised by a very cold mother and I guess saying she loved us just wasn't in her. I find it hard to be loving to my husband since he doesn't know who I am and wants to go to his other house where his wife lives. He says he likes me and I'm his best friend. I guess that has to be enough. Even before the dementia, he wasn't there for me emotionally. I believe he was raised to think being a good provider was enough. I honestly felt I got more love from my cat and now she is gone.
29scorpio now you've got me worried. I can easily make the Vulcan V and bend my middle and ring finger independently. Of course sometimes I forget my phone#.
29scorpio, I just tried this on both hands and each finger works independently. Maybe it's the result of having learned to play the violin as a child!
katlady37, Can you get another cat? There are so many cats, especially more than 1 year old, who need good homes. When my two orange boys died two years ago, I said I would not get another cat because it might outlive me, it would tie me down, etc., but this March I got Lucy, and I'm glad I did. She has given me a lot of laughs and I have given her a safe and comfy home.
I would love to get another cat, Myrtle, but unless I got an older cat, the cat would most likely outlive me and/or my ability to take care of it. My vet bills with my two older cats were extremely high and for two years, I gave coco fluids 3 times a week because of lessening kidney function. I was happy I could provide the care they needed but I'm not sure I could do it again. I hope some day to be able to volunteer at a cat shelter. BTW, my son has a cat named Lucy who they call Lucifer because she is such a brat.
I see your point, katlady. If you get a really elderly cat, the vet bills will be high but if you get a younger one, it might outlive you. I am 67 and my new cat is 4. I figure that I'll last another 10 or 15 years she doesn't kill me before then. (Now that she knows how to get tissues out of the box, she has come to realize that paper towels can also be torn apart.) I hope you can get a suitable cat. Or if you end up volunteering at the shelter, maybe you could be a foster mother for a cat. I have to hand it to you for infusing Coco with fluids for two years. I did this with my cat for two months (actually, my husband's home health aide did it!) and decided that it was not helping and was stressing the cat, so I took him in to be euthanized. I lost both my cats within three months and four months later, I admitted my husband to LTC. I felt like I lost my whole family all at once. It took me almost a year after that to get Lucy but I'm glad I did because she makes me laugh.
I might consider fostering at some point, although my sister in FL fostered a cat and 15 years later still had kitty residing with her. In the meantime the neighbor's cat comes and sits on the deck with me so I get my cat fix - until it turns cold that is.
Myrtle I was stunned when you mentioned two orange boys . For many years I was blessed with two red cats who I always referred to as the red boys. One of them died first, then my husband died-and finally the 2nd red boy. In between I popped into Petco just to see some life. There was a small blue eyed silver long haired cat. She came right up to me to say hello. I was ready to leave the store when the volunteer asked if I wanted to hold the cat. Big mistake. The little girl by the name of Gracie snuggled into my neck and put her sweet paws around my neck. My girls say she came with the proper name and that she was a gift from above. She sleeps with me and is never far away.
bluedaze, Yes, there is something special about orange boys. Did you know that almost all orange cats are males? My orange girl Lucy is an exception. I am not surprised that you walked out of that store with Gracie. Never, never allow yourself to pick up a cat you are not prepared to adopt!