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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 did not read through all the posts and understand the wish that there be a seperate forum for those caring for a spouse. Being a spouse I would hope that other spouses continue to post here rather than seperately. We can all learn so much from each other. Yes there is the loss of a mate, some much loved and some abusive, but the diseases take the same course and the decisions are similar. Because someone is caring for an elderly relative does not mean they have not suffered similar losses by being divorced etc. A spouse may cease to be a sexual partner for a number of reasons and most people experience the same personal reactions to that. Some grieve, some rejoice, others feel pain for the spouse. My point is that whoever you are caring for brings similar problems in some area and we can all learn from and suport each other so I would hate to see the spouses split off in the same way I did not want to see the private caregivers leave either. Everyone has something to contribute, even down to the best way to treat diaper rash. Nothing is taboo, we are all human
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Yes, when a spouse gets dementia the marriage takes on a very different character. We do lose our equal partner, our lover, our helpmate. We may or may not still have a companion, but the nature of that relationship changes dramatically. We are dealing with what one therapist calls "ambiguous loss." For many years I was a married woman but I did not have a husband. How ambiguous is that?! Our spouse is both there and not there. We face a long series of losses, but there is no public acknowledgement until the final loss, death.

I highly recommend the book "Loving Someone Who Has Dementia" by the therapist who has deep insight into the concept of ambiguous loss, Pauline Boss.
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May morning2 I know what you are saying. My husband is 78 and I am 69. He needs help with many things now and I am afraid to leave him alone too. No telling what he will do. He does not get lost yet and he certainly knows who I am. I think my time to put him in a home will be when he no longer knows who I am. I did promise him that! I said, "By the time I put you in a home, you won't know who I am or what you are doing so don't' worry about it now!" And he has never said another thing. He has had it for 8 years that I have realized he was acting differently. But you are older and so is your husband so you might want to get him into a home before there is nothing left of you!. I just lost his brother who also had dementia and was with us for two years after his wife died. I feel fairly liberated now that he has gone on! Much less time spent at the nursing home makes it easier for me! I too feel I have lost my best friend, my lover, my strong man to lean on, my everything. I feel lonely and alone and he is right there. I would love to have just one more meaningful conversation with him!
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Papillon, I feel the same as you. I have to make all the plans and take care of all the chores myself as I am sure you are doing too. It is just what we have to do. But yes I have been wishing to talk to someone who understands too. Bill doesn't talk much at all anymore so there are no discussions. He is still strong but he doesn't know how to do anything, like mow the grass, use a screwdriver or hammer, fix anything the way he used to do. He fixed computers for IBM and he was the best fixit man around. He doesn't remember the names of any tools, can't write anymore and I don't think he is reading much at all anymore. Someone told me to label the drawers of his bureau so he could find things. It didn't help because I don't think he can read. It is lonely even though he is there all the time and he won't let me out of his sight anymore. I go in another room to watch TV. He watches movies , same ones, every day over and over. He comes in the room a half a dozen times to watch me!

I retired from teaching 3 years ago to take care of him full time. My world keeps getting smaller the same as his does. I take him to Mass on Sunday because he loves it. I can relax and let him do the thing he has always down. Then he goes with me to the Methodist church service because I can't leave him alone. It is always the most relaxing day for me. I guess because I get out of the house and so does he. How about you?
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These comments helped me more than any of the others I have read. I too am caring for my husband, who has fairly advanced dementia, can do nothing for himself, and needs constant supervision. He is 89, I am 77. I love him and miss him--he has always been my best friend. But he is not the husband and partner I had, and after 5 years now of progressing decline, I am burning out. I am wondering when it is the right time to move him to a care facility, but feel guilty even thinking about it.
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Thank you Lindaw71 for your input. Your situation sounds much like mine and we are very close in age. It helps to hear my situation is not unique. I too, have experienced the challenges of not knowing what to expect. Some days are better than others, some moments better than others for both of us. I would love to have a support group that would minister to our situations.
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Oh my goodness, for your sake I hope he does not forget either
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Now this is scary!! My husband had a tumor in his jaw several years ago that required a maxillectomy. He wears an appliance that I'd have no idea how to insert. Or how to clean the hole that opens into his sinus. I sure hope he never forgets how to do that.
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guess I will be sticking around for brushing time from now on. My BIL age 91 quit all dental care & no one realized it, in the past 6 months he had to have all uppers pulled then the bottoms, he won't wear dentures either. My husband was still doing so well with personal hygiene I really did not worry too much, guess I will have to watch all that now.
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two pups mom, if I don't stay with Bill and watch him brush, he will not do it. I have to walk him through each step. Sounds like we are in about the same place. He also goes four times a year for a cleaning! It must be awful for the dental hygienist! And I know it is going to cost a lot extra. My best friend was lucky. Her mom doesn't have any teeth at all. She won't wear the false teeth so she's good to go. Her mom fell three years ago and was supposed to last only 6 months. She is still fine and now my friend is filing for medicaid. She said it is a nightmare of paperwork. Save all your bank receipts and all receipts for at least 5 years, was her best advice!
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I kinda think I personally would like to stay with this spouses thread, due to suggestions to join another thread that began in January & basically lasted a month, we lost contact with quite a few new comers who were following this, it can be very confusing jumping back & forth, then you cannot find where you started, we all have enough problems daily to have to muddle through a forum that should be easy for us to navigate. Thanks for trying & why don't you ask the few on the other spouses thread to come over here with us. Thanks
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oh Wam it is lonely even when you live with another! we go out to eat with friends every couple of weeks, I always order. just had 2 nd visit to dentist Thursday in 3 months ( cleaning more often as he is not doing a great job anymore) well both those cleanings ended up over $400 as 2 teeth had open pockets which were infected so they had to shoot antibiotic in there ( twice now- same teeth) - he uses a electric toothbrush - this morning I decided to go into the BR just to check on the brushing, he did not know what that electric brush was for nor how to work it anymore ( then I felt really bad for pushing him on this every day) so took him out a new regular toothbrush, and he was good to go. Financially & for his own sake I hope this gets him back on track .
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Same here........no long trips, now vacations, no nothing! We do still go out to eat with friends. I have to order for him and help him cut up his food. But he is doing OK other than that. My only treat......eating out once a month because that is all I can afford! So many restrictions. Oh we go to church together too. I am grateful for that! At least that is comforting and inspiring to me. Hardest part of that getting him to wear clean clothes, and brushing his teeth.
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Add me to your list, we were extremely active & all of that had to stop, my idea of fun is not driving my husband everyday just so he can get out of the house, no more long trips, no vacations, it's like our social life collapsed! It gets a little harder each passing day, but we as spouses have to hang in there together
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Hi, girls. I feel your pain and frustration. My husband is a Stage 2 Parkinsons. He also tries to do things that he can no longer do and then he falls. I worry that someday he'll actually break something. He sits around looking sad all the time. We've had to hire yard work and household help. I want to move to a smaller place that will be easier to care for while he is still able but can't get him to agree. I know that with PD he will eventually need more care and I want to be able to do that.
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Kashi60 I feel your pain, as your husband and mine seem to have very similar delusions. And I go through periods when I don't deal with things so well, then find a way to cope, then lapse again. It's a constant challenge, and being an active person like you I feel that one of my more important goals is to keep myself up, physically active, interact with friends/family, which ultimately helps me deal with him. A day at a time, an hour at a time, sometimes a minute at a time. Sad and irritating indeed, but unfortunately uncontrollable. The Serenity Prayer helps!
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Kashi60 sound like your doing a good job. Keep doing what your doing and try not to let him bring you down. I'm in a similar situation and I know its hard. His mind will not let him accept the fact he is sick. My husband thinks he is not sick and still do everything but he cannot. So sad and irritating to me.
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I am also taking care of my older husband (although he won't admit to that!). My situation is not very much fun as he is not accepting of his physical limitations.. He thinks he can still do everything, but he can't and doesn't. So it's left up to me to get things done around the house and yard. We have a large house on 12 acres so it's a lot to take care of. He gets very upset if I arrange for outside help, i.e. someone to mow the yard, do repairs around the house, etc. He states that he can do all those things but of course they never get done. We have not been getting along at all because of his attitude and I've even thought about leaving but I know that he cannot take care of the house which is a big investment and I hate to see it go down. So it's a real dilemma as to what to do. Not sure I want to live like this. I'm retired and am very active. He cannot do much at all ..even walking across the room tires him out. He's never really has taken care of himself and has had bypass surgery. Not sure of his mental state but it seems to be deteriorating too since his attitude seems irrational to me. He also seems to resent that I am very active. I keep telling him that we are both getting older and cannot do some of the things we used to ..and that it's ok. But he doesn't seem to listen. Any suggestions on how to handle this?. I
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Hi Everyone...There was a thread that was started in January of this year. It was a poster who wanted to start a thread for those who are caregiving for their spouse, and not an elderly parent. I really think if all of you go to this thread and support it with your comments, encouragements, ventings, etc.... This thread could become a major Home Thread for those of you spousal caregivers.

You can still hop around and comment on the different threads. But when you just want to comment for the sake of updating your AC family, then you can go to your home thread and update everyone. Who knows, it might become like the GROSS thread, the DYSFUNCTION thread and the Caregiver How are YOU thread.

Wouldn't it be neat to have 4 major categories to go: Grossness of caregiving, Dysfunctional Family, General Caregivers and Spousal Caregiver.

I think it would be great if this thread for spouses grows and grows with each comments/vents/tips from each of you.

https://www.agingcare.com/discussions/caregiving-for-husband-spouse-155578.htm
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wamnane - my husbands love is our two dogs, I think I would have more problems with him if we didn't have them. He does the same sometimes, always cleans up their poop but sometimes brings the bag in & wants to flush it! Weird subject huh? the anger he shows is not being able to drive anymore, and I finally got the nerve up to get rid if his car that just sat for 3 years, he goes crazy over this still every couple of weeks, I just keep praying he will for get about that subject for good.

and Thomas boy have you got your hands full, but what a great guy for taking her back and looking after her. Is there any family members that can help?
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Yes, it's funny how they can do some things but not others.

Crossing my fingers, not everyone gets mean! If he feels safe, for example....
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To Jinx, I don't think he has progressed far enough to be mean yet. Right now is a pleasant time between us because he can still do a lot for himself. I get mad and talk to myself, but He doesn't see it. I will go in another room and vent. He is deaf so he doesn't hear everything. Tonight I had to show him how to cut his food with a knife. And I had to put the ketchup on his burger. But other than that he did well today. I am retired so I don't have that stress anymore of going to work and worrying about him. But I do have the stress of wondering how I am going to pay all the bills, and trying to cut back on things when the cost of everything is going up. I am not so good at finances. Day in and day out. I try to do things I enjoy between times getting his meals and doing the wash. He will continually throw one item in the washer and turn it on without soap! I have to stop the machine and throw more wash in with his one item. He does this almost every day if I am not watching him! He loves the pets and likes to care for them. But he will collect the poop in a baggie and bring it into the house! I will find it lying by the door, in the baggie, thank God. But you can still smell it. That's my life. It hasn't gotten horrible yet! But I know it's coming!
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Thomasro1 - why doesn't she qualify for Medicaid? You sure have your hands full!

The next time she is hospitalized, do NOT take her home. Explain that she needs more care than you can provide. That is your best chance to get her into a setting where she can be well taken care of.

Is she in condition to sign a POA agreement, or medical proxy? My husband and I just signed "privacy" agreements so that our doctors can share info with the other spouse.
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Bookluvr suggested that us spouses start using this thread -

https://www.agingcare.com/discussions/caregiving-for-husband-spouse-155578.htm

I posted a comment there.
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Wamname - Where did you find that nice alien you are married to?

My husband is a good guy, but can be snappy and mean for a number of reasons. I know he will be mean to me. I don't like it, but I'm used to it, and he balances it out by being sweet and lovable when he isn't stressed. I am afraid that I will be mean to him. I want to think of myself as a wonderful person who would never be less than compassionate. HA! I'm a little mean to him most every day, despite my best efforts.

The more I can accept that he is exactly who he is, the less I need or want to be mean to him. It's hard work.
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I can relate.....boy can I relate! I'm 66 partially disabled and have an open wound that requires continuous treatment, My wife 54 yrs old, and I were separated at the time of my stroke but she moved back in with me to help. Well, then SHE had a stroke (more severe than mine) and to make a very long story short our roles have been reversed. I'm her full time 24/7 caregiver now. She needs me for everything; she's incontinent, can't dress herself, can't prepare her food, can't us the bathroom unaided, and on and on and on ad infinitum; and it's literally killing me, She has COPD and can't smoke and puts me through hell because I won't give her any cigarettes. She was a Crack user before her stroke; and recently she tried to start up again (with the help of a "friend", to whom she gives her entire SS check) but I caught her and threw away her stuff. She has stopped paying her half of our expenses. She's become a demon and verbally abuses me at every turn. And I find it difficult(almost impossible) to care for her now; I've grown to intensely NOT LIKE this person but can't get out of this arrangement. Nursing homes don't want her because of her low income; severe bi polar disorder; and she's a fall risk, As the previous posts state, I'm involved in self destructive chain smoking (stress). I don't know where this whole situation is going; there seems to be no answer. I know I can't live like this anymore and I really don't know what to do. Any suggestions would be welcome. BTW she doesn't qualify for Medicaid or any other programs. I really can't just up and leave; though I'd like to; but I don't want to be held guilty of "neglect". If left alone she will deteriorate and probably die. Thanks for the space to vent; and yes; we need more "spousal" type forums if possible.
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Welcome Kim, please keep us in your heart when you need someone to talk to, we will be here.

everyone that is a spouse that has posted, if you go back through the list, click on each screen name, there is a blue word. Follow. click on that, then anytime one of us posts on this thread we will all get an email so we can try to help or just give support. Otherwise you will get lost in a maze of postings, that happened to me when I joined, I wanted to hear how the posters were doing, but I did not know how, but helpers on this site guided me, like if You just wanted to see how the original poster Papillon was doing just click. give a hug and they will get your message directly.
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P.S. I updated my profile... so anyone who decides to make a "Taking Care of the Spouse?" board, can add me to it by looking at my profile. :-)
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Oh I get his rages too... he should still be working but knows that he isn't, so he gets aggravated and irritated easily. His legs don't work, and so he rages and rampages about that... his words are usually slurred, or stuttering, or nonexistent altogether - because he can't remember words (even basic, simple words like, "cup"). A good friend who cared for her mother with dementia said to me that I must NOT ever rage back at him or fight with him. First, he won't remember it, and second, there will be things said which cannot be taken back and third... I WILL remember them all. I remember my marriage vows - the better and the worse, the sickness and the health... this is worse and sickness... but I remember why I married this man. I just miss him so much, because he isn't with me any more. Now, there's just this stranger that barks at me and waits for his meals after I work 10-hour days at work, then come home to clean and cook and wash and take care of our animals and gardens. I'm exhausted but I still remember why I love him and that is why I won't give up as his caregiver. I may need a sounding board from time to time - male or female doesn't matter to me - but I'm still gonna stick it out with him, for however long it is. My faith is strong, and I am still praying for the miracle - even if it never comes, I will still serve my God, and I will still be married to the man I vowed to love - until death do us part.
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it is very scary, the Jekyll & Hyde - I do not see it very much anymore maybe one or two times a week, when it was very bad Dr put my husband on Zoloft 50 mg to calm him, I was afraid of him, because all of our life together prior to ALZ he was just the most gentle man I had every met. about 3 months ago he had a UTI, I had no idea, but called my emergency nurse number as he was going crazy & I didn't know what was happening. The Urine test done the next morning found the UTI then antibiotics cured it, thank goodness. Never want to go through that again.
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