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It's like I'm setting all the rules. I miss talking about movies, TV, plays, etc. she can't I irritate anything. I spend my life making plans for her. Frankly, I'd like to meet a woman in the same situation to relate to. Everyone I meet at support groups is caring for an elderly parent or a much older spouse. They have a whole different set up problems.

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I am caring for my husband who has Alz. and is 10 years older than me. I am also caretaker for his brother, my brother-in-law, who is in a nursing home. I have to show my husband how to do everything. And we make trips to the nursing home twice a week to see his brother. Bill can't carry on a conversation anymore as his vocabulary has shrunken quite a bit. And his brother Dave, can just about whisper to be heard. It is so difficult trying to communicate. When I talk to my husband he doesn't understand most of the time. HE used to fix computers for IBM. Now he doesn't even know what a screwdriver is called. I miss talking to my husband and feeling an emotional tie with him. I have retired to care for both men. I taught elementary school for 43 years. And I loved it.
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Papillon, first let me tell you that I can relate to your situation. I took care of my husband - who didn't even remember that I was his wife. You don't mention your wife's illness and how much supervision she needs. Without further information it is difficult to give you advice.
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Perhaps u have been switched to a spouse to a house&being a dad..doin things she wants. sorri to hear that. guess it changed for u in a man&woman relationship.
You probably already know ..so if u decided which role that U need to be in.
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Your spouses are gone. And it so happens that you've been landed with a new job, namely overseeing the care of a new person. So yes, you don't have the same spouse role that you had before, you're right.

That's a huge lot of loss and change for you to absorb. I'm so sorry it is that way.

Please don't forget that you get to look after yourselves, too. For example, I didn't say your new job was caring for a new person, it's overseeing the care of a new person. In other words, get as much help as you can, and use whatever time and energy that frees up to enrich your own life. Otherwise you can't keep up this new job, this new role you are playing. It has to be part of the totality of your life, and you have to look after the totality of your life.
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Your relationship has switched from spouse to primary caregiver. I would seek out a support group for caregivers. There are lots of spouses rendering care and most are seniors. The adult caregivers normally jump in when the one parent dies or is no longer physically able to render care for the most needy spouse. The active spouse (regardless of age) will likely share many of your same issues and frustrations.
I wish you well as you continue along the path of the primary caregiver, although you may feel alone in your age bracket many spouses are facing the same problem as health issues don't only occur in the marriages of seniors.

My father was widowed at 55 yrs after a faced paced yr of primary caregiving. He eventually dealt with this loss but it is difficult for men to readjust if they had a happy marriage and their spouse was their best friend.

Take care. You are not alone in your mission, try to find some time for yourself so you can avoid burn out.

Elizabeth
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My husband is only in stage two Parkinson's. He was finally diagnosed about a month ago. In a way, it was a relief to know what has been going on with him for a long time. At this point, he is still driving and working one day a month as a pharmacist from which he's retiring the end of Aug. He mumbles and gets upset when I ask him to repeat something and wants me to get my ears checked. He also has a lot of nausea when he won't eat for two days at a time. This happens at least every ten days. How can I make sure he is getting the proper nutrition? He forgets things and prefers to spend his time reading or on his computer. Should I insist he spend time with me instead? Does anyone know how much time I have before he gets worse?
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Well now you have met someone that is in your shoes, I am a wife (68) caring for a husband with Alzheimer's, I too am the director of everything now as he can not even change a light bulb. I love him dearly but sure miss the intellectual conversation, the fun things we have done & basically life itself. I too find more members on this forum that ate caring for Mom or Dad, but I have found some just like us, kind if think the Forum should separate the two groups sure would make it easier for us, don't get me wrong, I cherish all the ideas & help here!
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Excuse my iPhone typos not enough space to see what it has changed on me, like ate should be are, etc
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I too care for a spouse.. I just finally posted after lurking for awhile! A separate forum would be great for spouses.
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I, too, am a spouse caring for my husband with Alzheimer's type dementia (is how his doctor terms it). I am 61, he is 66. I have grieved the loss of a husband and now accept this new person who does not resemble my husband in any way. (Took a couple of years) I am at peace with this overall situation now, but still find the daily frustrations and hardships it creates hard to bear at times. I have to work full time and take care of the household as well as care for him, which, I know cannot go on for too much longer. One deep frustration and challenge is that some days (or even hours)he acts like he is in a more advanced stage of the disease than he might act the next. It is always a walk on eggshells to try to anticipate what he will remember and has the ability to do and what on that day he may not. He gets angry when I assume he cannot do something and he thinks he can. Other times I can end up with a small disaster because I incorrectly think he is still capable of doing or remembering something. I ,myself, still have irrational moments when I doubt he could really have this disease, only to hear or see him do something the next moment that literally shocks me back to reality. It would be great to have a separate forum for spouses caring for spouses. I also agree, that I get things from others too. Welcome to our world, I think we can all offer great support to each other.
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A "spouses caring for spouses" forum would really be helpful for many of us!
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I am in the same boat caring for my husband who is much older and going in and out of cognition on everything. Would like a special posting place for us.
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I have a suggestion, maybe l'd call it a challenge, for each person posting on this site to go to their personal profile and put as much information as possible, only that which one is comfortable revealing of course.

When I am reading a post in considering answering it, if I don't recognize the poster's ID, I selected and go to their profile. I'm suggesting more thorough information on the profile because for example I have read that a caregiver is caring for "someone" and later discover that the someone is a spouse. I try to fashion my answers based on what I know including age, length of time with the disorder, was it the caregiver as assistance, etc.

It's just my opinion that more information in the profile rather than randomly scattered throughout the posts would make the answers more comprehensive and perhaps alter which members with which situations would respond.
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I care for my husband who is just 56. Whole new set of rules to go by now. I know how hard it is and what you are going through. I've been to hell and back. Please excuse my language but feel I'm entitled. He is still at home but getting worse by the week. Home health ect...... I feel like his mother and miss the person he used to be. The man I married adored me, now do not get a kind word at all. We have memeories, children and Grandchildren and that is what keeps me going. I just hope to God that he would have taken care of me. I wonder sometimes.. I still work part-time too. Our grown son lives with us to help out, thank God.
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I am 76 and oversee the care of my husband 81. Seven years ago we both worked in the alleys of the local cattle auction barn. At 69 and 75 we were both completely healthy. A large steer broke back and charged into my husband knocking him over backward and hitting his head on the cement alley floor, After 7 hrs of brain surgery, 6 weeks in intensive care, two months in a coma and several other setbacks he went from a healthy active man to functioning at about the level of a 1 year old child except that he can talk and has lots of life experiences but almost no short term memory and his older memories are scrambled. There is no meaningful conversation. When I try to catch him up on family events, grandchildren getting married, new great grandchildren, he is totally bewildered or tells me I am lying to him and shouldn't tell him such things. All you can do is to see that her needs are taken care of and try to carve out some sort of life for your self. I am fortunate that his care is being paid for by workman's comp insurance so I am not stressed financially, but the emotional toll is huge. He will not get better after all this time, he will not come home, he will not ever be able to take care of any of my needs. I have to find other ways to make my life worth living.
Do some things you like to do, find friends who will listen with understanding, try to find some meaning in your life. It will not be easy but it is doable.
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Wow. I am overwhelmed by the answers. My heart goes out to all of you. Actually, I decided that thinking of my husband as my 98 yr old father needing assistance helps. (he will be 72 in Sept) A lady was talking about not marrying someone a lot older and I told her I thought of that. My husband is only 8 mo. older then me. I talk to ladies in the Rec Ctrs that we have around here about books and movies, etc. There are lots of seniors in this area. They are calling it getting ready for the Silver Tsaumi (sp?) Even my dentist's wife, who is his ofc mgr., says she misses talking about politics to my husband. He does not even know who the President of the U.S. is anymore. I take him with me to the Rec Ctrs. People are usually kind about the situation. The person with dementia wants to be useful but they cannot even distinguish the recycling from the regular garbage. I even have the recycling in blue recycling bags. I am having a lot of home improvements done in case we have to sell. On the positive side we don't argue about choices, i.e., flooring, etc. I picked everything out myself. He finds the Home Improvement stores boring now. He really cannot advise me about anything so it is a good thing I found a Home Improvment Contractor I trust. I hope we can stay in our own home. The hard part is that no matter how bad it seems it is probably going to get worse as there is no cure yet.
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To Lindaw71 and twopupsmom, I agree that I would feel more comfortable with a site for husbands and spouses or wives and spouses. Our problems are different from those taking care of Mom and Dad. It is the closeness issue for me, or lack their of, and the inability to talk to the love of my life who is gone for now but present in body. I still love him so much but have tried to distance myself as a self defense, I think. I ask him to help whenever he can. I always have to show him first. He still has physical strength, but no memory or understanding of what I am trying to accomplish. It is so difficult not to have that backup I used to have. He was my strength, now I am his. We did not go on vacation this year because it would have been too difficult for me to have to not only drive 800 miles, but I would have had to help him do everything. He doesn't get lost yet and he knows me, thank God. I am dreading when he gets to that point. I have to steal his clothes during the night or he will wear them all week, even after bathing, he would put back on the same clothes. He walks outside with me when we walk the dogs. He likes to do that. The dogs are my best friends now. They give me the love and adoration that he doesn't give me. They are always faithful and sympathetic. I have three shelties, but one is also on her way out. I care for her too. Well I have talked enough and it was probably good for me. Yes we need a separate for husbands, or wives and spouses.
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I haven't taken care of a spouse yet (although I have helped a friend do so, therefore I believe I have more awareness about that then many caretakers of just elderly patients. But I have taken care of two great aunts--one back in the 60's with "delirium" (what they called dementia back then--from metastatic cancer to the brain; the other paralyzed on half of her body from a stroke, unable to communicate and wildly frantic about it), helped significantly with that friend's husband who had ALS (Lou Gerig's Disease) in the early 80's; from 1984 through 1995, my dad with various stages of Alzheimers; from 1993 to 1999, my aunt with alcohol dementia; from 1995 through 2007, my mom with various joint and eye surgeries and increasing crankiness; from 2007 through January of this year, my mom with drug-induced dementia. During these times I also materially participated and information gathering, no not physical caretaking, of a close and dear family friend's mother with probable alcohol dementia, so the doctors called it Alzheimer's; my ex brother in law with FTD dementia, a close friend with her husband with Parkinson's; and an even closer friend whose significant other has some horrible muscular disease the doctors keep rediagnosing, this year they're calling it inclusion body myositis, but that could change, it has before.

I've seen it posted here before so I'm not miraculously coming up with something new, but I saw that the common thread in all of the cases above for the caregiver (which was many times myself) seems to be that we eventually come to the place of knowing and accepting that the real person we are taking care of has already left the building. I believe it is to the extent of which we can adjust our own thinking that that is the case, to that extent well we have our own mental health and even before the person passes be able to go on in some way with our lives.
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There are unavoidable similarities and caregiving regardless of the relationship. If the person being cared for live long enough, that is they don't die from something other than the long term disability their suffering with whatever it is, the relationship between caretakee and caretakor is going to become that of parent-child. It's unavoidable. And although it's not my situation, l understand the feeling of loss of a spouse, but some of us that are not married also experience great loss of what would have been our support system, a parent, another family member, even a friend, none of which is mentally present anymore but also the very active caregiving, which sometimes involves moving away from where you would normally live, changing or quitting employment which drastically cut down your social life n even friends who eventually give up on you because they don't think they would caretake the way you are doing it and don't understand why you may no longer have time for them. I guess I feel that that's the common thread and the very sad feeling when can obtain from reading many posts here: the sense of loss, there's just so much loss.
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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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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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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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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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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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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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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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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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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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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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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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