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I am caring for my husband who is still relatively young... he is 44 years old (I'm almost 46). He is in early stages of dementia and muscular dystrophy, due to Metachromatic Leukodystrophy (a brain disorder in which the white brain matter simply vanishes). YES, I feel like a parent, more than a wife. It's a hard situation and I totally get your problem. So sorry to hear that there are others out there but at the same time, it's nice to know that I'm not alone.
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My husband has never been nasty to me. Not during our 35 years together and not now!. I have hope that he never will be nasty. That is exactly the future I fear.
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Hello Hopestill, love that Hope Still, I snap back too, it is do very hard not to. Mostly thinking for a couple of seconds as WAM said I cannot find fault in him, it is the disease I hate. Yesterday a very hateful man took his place for about 40 minutes. I walked away the he will apologize all day, how can he remember he did something, or said something nasty & know it is the right thing to appologize, that is hope still for me. Hugs
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to Hopestill, I find myself doing that every now and then. I have to continually remind myself that I can't hold him responsible for things he says and does. He doesn't have the capacity to be mean or deliberate about anything he does. I know he tries his best and that is all I can ask! He is deaf and I am usually talking under my breath. Fortunately he never hears the comments I sometimes blurt out! I do love him so much and I just cant find fault with him. I know he would never do these things if he were of sound mind.
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I am a husband, age 80 who finds himself trying, at last, to be a good husband to my wife of 55 years. I should know better! I acted as father to my mother for six years some 20 years ago.....but it is remains difficult! So often, I fail to react appropriately. God help me (us) to keep my (our) sense of humor, that I might yet treat my dearly beloved as I would wish to be treated..... calmly, patiently, and seriously. So often, Lord, you know,.... I "bite back," with some tired and callous restatement of the obvious.... realizing, to late, that 'my obvious' is in no way any longer obvious to her. (Maybe it never was, and that too is my fault)
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I agree with wamnane, there's nothing wrong with wanting companionship from a friend of the opposite sex. I feel the same way, I would like a man's opinion / advice on certain topics and just the companionship that I can't get from my husband. That doesn't make me a cheat.
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I would like to suggest to those of you caregiving for a spouse,,,start your own thread under discussions so all of you can support each other on that thread...just a thought!!
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meant come on......darn computers have a mind of their own
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we sure had a really good string of posts here that made me feel closer & warmer to all that joined in, then comes Terrim, I think you may be the one with the problem, that was a terrible "slap in the face" to post to the spouse.

WAM had to laugh out loud about the soap on the toothbrush, my husband stopped brushing abruptly - I asked him what the problem was he said he wanted his old toothpaste back, so I bought a different brand, it wasn't the toothpaste, he showed me the one he didn't like and it was V O 5 for his hair.

common fellow spouses, give us something of your own to smile or laugh about, sure got to keep our heads above water!
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terrim, you sound a little harsh. Yes he wants to meet a woman because we have lost the person we treasured. I have thoughts like this and I push them aside because I still love my husband and always will. Just to think this way feel like cheating. But sometimes a man's opinion is what we seek and vice versa. I wouldn't want another man at this point because of all that I have been through. I would never want to have to do it again! Just remembering the good times with my husband is going to have to be enough for me at this point in time.
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Why does it have to be a woman? Can't you make some male friends or couples where you can discuss things? You might find interest groups for things you like in your own area and arrange for someone to watch your wife during meetings. What it sounds like you really want is to find a girlfriend. Your wife may be sick but your marriage vows were for better and for WORSE and in SICKNESS as well as health. Frankly, I would think I deserve better than a man who emotionally cheats on his wife. If he does it to her, he'd do it to me. I know this is hard but you can find people online to talk with and local groups as well.
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I am 68 and husband is 77. I had to quit two years ago because he was forgetting to eat the lunch I made for him to eat. He is now about 7 years into this Alzheimer's. He is still able to bathe himself and dress. But I have to do the teeth with him. He follows my lead. He kept trying to put hand soap on the toothbrush. No wonder he hadn't cleaned them for a while. I didn't realize until the dentist told me. I don't think the tooth brush was too pleasant with hand soap on the brush! He is like that with everything. I have to show him exactly what to do for most everything.
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So good to hear from others caring for their husband/wife. My husband is 76, I am 63 and he has dementia. What I find difficult is because of his short term memory loss, one minute he loves something, then the next he goes on and on about how it is awful. He is sarcastic, but then later likes a different person. I work full-time and he is okay on his own during the day, but I worry about him all day long.
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I agree that a forum for spouses caregiving for spouse would be beneficial. Most times when people think or talk about caregiving for someone with dementia or ALZ it seems it is for an elderly parent. I would welcome our own space.
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I'm basically an atheist - I WISH there were a god, even pretend there is - but I still think as if there will be a heaven where we will be restored. My father will still be full of piss and vinegar, but without the rages. My mother will be just the person she was - perfect, in my eyes, but able to see and walk again. Sigh.
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I wanted to add that one week in church the pastor spoke of being restored after death and that really gave me something to hang onto. I definitely have a strong faith and I truly believe that when we are reunited in heaven after death we will both be restored to our "best self" whenever that was, and that we will be able to communicate with each other again. And that is really something to hold onto!
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I came across an Internet lecture by Olivia Ames Hoblitzelle and bought her book on how she coped with her husband's mental decline. The book is Ten Thousand Joys & Ten Thousand Sorrows. Helpful! Also found the book The 36-Hour Day by Mace & Rabins, a guidebook worth having.
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My husband also has dementia 82 and very slowly going downhill. He never was good at fixing but even little things he forgets now. Can usually name the 4 grown children but forgets who they are or their names when he sees them. Still remembers me but has asked if I am his sister. I never know if he's kidding or for real. I just takeover like all is my responsibility so don't even ask him so he can't get frustrated. Doesn't remember grandchildren names or neighbors. He tells the same stories over and over. Had the doc sign that he was an unsafe driver so I drive even from WA to AZ in winter. He sleeps 10 till 12 or 3. Gives me lots of time to do things but can't leave him. After reading about many caregivers I feel blessed but am checking into help. He plays cards and puts puzzles together. I am investigating what if tomorrow so won't be so overwhelmed. What ever I do always thinking towards selling and moving to condo or retirement home. Depends on his state where we will go or he will go alone etc. I know I don't want to stay in our house but nearer people. I am planning for us to go south for winter because its like a little community & most know our situation so accept him and lots to do at clubhouse for me or us. I feel like my social life is back in winter. So much for rambling. I always read this as its like being with understanding people.
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I have a drivers license, but I quit driving due to an eye problem. I could get to the grocery store on the back roads if I really had to, but not into St George to the doctors.
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amott6 don't give up on us, we can still offer help and just a place to come to and talk, as long as your husband still has interests, can converse & drive, he is holding his own, don't worry what the future may bring, but do educate yourself so if & when the progression takes a different course you will have some insight to handle those situations. is it too late for you to learn how to drive? I think that is what your main concern is now, both being home bound with no way to go anywhere. Ask one of your children to help you with this. most of all, keep yourself busy as you know once he retires for good he will be on the computer much more. good luck, keep in touch
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I'm too new yet to be of any help to you. After all, Al went to work today. I suspect that he'll deteriorate faster when he retires (for the fourth and last time) next month. My problem is that I'm trapped at home because I don't drive and have a slight disability of my own to contend with. I don't know how much longer he'll be able to drive then we'll have a whole new bunch of problems. The shaking has returned in one arm now, but he hasn't fallen in six weeks.

After reading the posts, I guess I'm lucky right now because I can still talk to him (when he hasn't shut himself in his "office" to play games on his computer)
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I walk on those eggshells daily, also, I can also go out for short trips, but I feel guilty when I do, husband is not yet a wanderer, or getting into things he shouldn't I would really like to plan a cruise for Early next year, last one Feb 2011 was good for both of us, though we never left the ship & that was ok. he has progressed in this disease, but he is still trying to be normal at times, and I cherish those moments. like you the last vacation was mine, he would rather stay in the cabin, which we did, but would go with me anywhere I wanted to go. Bless you also, kind of looks like we have started our own thread, wish those spouses that have already posted give us a daily update if possible, and those from the original group would jump in here with suggestions.
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First of all, I absolutely LOVE the idea of a forum dedicated to those of us caring for spouses. Indeed, many of our issues are completely separate and distinct from those of children caring for aged parents.

And after reading all 26 comments posted as of this writing, I find that I particularly identify with Lindaw71, although my husband's "early dementia" is related to a brain injury and to his alcohol-related brain atrophy rather than Alzheimer's. "Walking on eggshells" is an expression I often use, for the very reasons Lindaw71 has described. What's really frustrating is that my guy (76, I am 68) is still sufficiently cognizant to handle certain things related to the uninjured side of his brain, but it's becoming increasingly obvious that his judgment is out of whack, as is his concept of his physical/mental capabilities. For instance, he wants to travel the world, but travel exhausts him to the point where once we get where we're going, he takes to bed and essentially I'm on vacation alone. I've had to become sneaky, underhanded, and controlling in ways I never dreamed of -- mainly undoing impulsive online subscription orders, refusing financial assistance to friends taking advantage of him, etc., always bearing in mind that things will only get worse as time goes by. And his fairly robust physical health promises that this will be a long haul.

I cannot agree more that caregivers MUST take care of themselves. And since we have not yet reached the point where my husband cannot be left alone, my own regimen includes daily morning workouts at the gym, which benefits both my body and my brain. In addition, I lunch fairly frequently with friends and former co-workers, and stay involved with our children/grandchildren. Taking things one day at a time and trying to "roll with the punches" are constant challenges, but I'm seeing more and more that his moods reflect mine, and he's more upbeat when I'm in a positive frame of mind. Just another testimony to the adage, "attitude is everything." And our attitude is about the only thing we can control in this process.

Bless you all!
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Wow just look how many of us are for a new group - spouses - I read each entry & clicked follow to try to remember all of you. I do not know how we can go about singling out our group, as I stated before I truly appreciate the help from this group but there is something just a bit different between a husband & wife. Maybe someone can tell us how to go about this.
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My heart goes out to all of you. Several threads that are aimed at a particular group have been started here. They are still open to everyone, which can be helpful, but do concentrate on a particular aspect of caregiving. For example, I stay mainly on the Caregiver and Dysfunctional Families thread as that addresses my particular problems better than any other. Someone may want to start a caregiver of spouse thread, or just stay with this one as a "home" thread. It helps having contact with others who are in a similar situation. Grieving the loss of the person as he or she was (in my case as she, mother, was needed but never was) is a necessary step to healing and coping with the present situation. Venting and sharing ideas is also very helpful. Good luck and blessings to you all. ((((((hugs)))))
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Katie, how fortunate you are to have those photos. My husband was always the one behind the camera, so there are none of us together. Sometimes, he'd give it to me so I do have a few with him and the children. (he is only 18 months older than me). He is still pretty functional, but does strange things, like paying a bill twice. I haven't had the courage yet to suggest that he let me take care of the finances. I used to do it, but he took it over 20 years ago. I hate watching him go down hill.
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I am caring for my husband who is 17 years older than I am and I feel like his mother. I have not felt like a wife for years and resentment has set in over the past few years. He has Parkinson's Disease and has just had surgery on his foot. I still work and it's hard to balance work, caregiving and household chores, errands, paying bills etc. What is helping me is doing one little thing for myself each day even if it's just enjoying a walk with my dogs or cutting some flowers from my garden. Also, I've been looking through old photos of us the way we used to be and that helps remind me of the person I married and why.
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T'is a radical change, my wife is a victim of alzheimers and I now do all the household chores something I was never good at to begin with but manage to muddle thru, cooking was toughest with my zero experience.
However the truly trying part for me is how much I miss my wife, this person looks like her but her spontaneity and verve succumed to this horrid disease. We're both retired canucks so time is not an issue, t'is said retirement years are the golden years n' I always thought it refered to enjoying golden sunsets but
come to find out it really means y'better have enough gold salted away. Publc services here are like a lottery, the task is to survive til you number comes up, can't afford private....too bad.
But I digress, wish I could offer advice on how best to cope with the challenge, for me whenever I get a broad smile, a chuckle or the odd kiss on the cheek all my on the job training and frequent frustrations become trivial, I know it sounds corny but it's really true....for me at least, that lil reward is reward enough.
A forum to discuss caring for a spouse is a great idea.
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My husband was a physics professor and a math tutor. Three years ago he had a bout of colitis and became very depressed, was hospitalized for a month. Since that time he has begun to lose more and more of his abilities. He used to do math as a "fun" thing every morning, did crossword puzzles and played the piano and the recorder. Little by little his ability to do all these things has deteriorated. He cannot tolerate social occasions anymore, finds it difficult to follow the conversations and insists that we leave early. He only trusts himself to drive short distances to very familiar places so I have become the chauffeur. He never was much good at fixing things in the house, but at least he tried and would handle calling a serviceman if he couldn't do the job himself. Now I have had to learn how to unstuff the toilet, change ceiling lightbulbs, deal with the outside water faucets in winter, etc. I've been going through a "mourning" period, missing my old husband. The worst times are when he accuses me of not caring about him, or when he won't let me talk to him - just says, "Why are you telling me this? Don't you know I'm demented!" I guess I haven't gotten to the point where I am able to accept all these changes yet. I do try to do things for myself, I still lead hikes (which he can no longer do) and get a chance to leave the house and meet some people. My son is willing to spend time with his dad, and we have dinner together with his family once a week. I have been trying to think about getting a handyman to fix things in the house before it falls down around us, but am having trouble making all these decisions alone.
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Hi,

I know the feeling. I feel like my guys mother. He also cannot or do not initiate anything. His famous words are I don't know or I can't. I am sooo tired of this relationship. He is kind, but, missing so many other things that a man should have. Oh, he is also so boring, and slow. We can talk, it may shed some light on both situations. I should be fair and say that he is a nice person though.
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