Caregiving for a husband/spouse seems to be a missing topic. Lets get our two words in.

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My situation will probably be very different from most, since I am considered a newlywed, however I don't see many topics on this subject and would like to start something that includes those of us that are taking care of our spouse.

My husband, I was well aware of some his problems prior to our marriage 3-30-12, with issues due to his work environment working with the railroad after many accidents, not his fault, as you can understand by reading papers of train accidents when others are killed by their stupidity of trying to beat the train, or accidents where a vehicle stalls on the tracks. He remembers every death, and even knowing that he was not at fault, the number 57 remains in his head. The last accident was a major one when training a new engineer the person changing the track trip switch, went the wrong way ending in a head on collision, and three people died including his trainee. After that time, him being the only one that lived, this occurred over 11 yrs ago, he was removed from duty and hospitalized with many injuries, including mental. At this time besides nightmares he has been diagnosed with Bipolar,PTSD, Sleep disorder, and depression. During his hospital stay (11 years ago) he was given a chaotic treatment of electrodes attached to his head and zapped he calls it 10 times to try to help. This was some time ago, however we believe now it is causing, along with the drinking he did, dementia.

These things I have been informed can come on fast or slow, and in the last couple of months the dementia has increased to the point that I have to repeat myself every day on appointments, for instants, that are going to happen in the next few weeks. It seems his short term memory is what is really affected the most.

To add to the difficulty of this onset coming on so fast, he has now been diagnosed with Degenerative Disk Disorder and has a bulging disk, (now on pain medicine as well) so even though I am unable to do much myself due to my own issues, he now can do nothing around the house to assist me. (Two weeks after we were married I became ill with pneumonia 17th time) and was taken off my job for disability and on oxygen 24/7), This has made things very difficult since I was in a wheelchair for many years and in the last few years, prior to meeting my husband, had built myself up to be on my feet, maybe not perfect to walk around, however was on my feet just the same.

He was just given a medicine (Donepezil) that is a possibility of slowing down the dementia, which we are hoping works, but wish he would have gotten wind of this long ago…those of you having spouses with dementia, I was informed that this will not reverse anything however could give us longer together before things get worse. I now have to take care of all his medicine since he is unable to remember what he has taken and what it is for.

I am starting this string, one because getting my story out there I believe will help me and hope to help others that come in to this site with Husband/Wife assistance, not just parents/aunt/uncle and so on. And I would like to hear others maybe of things they have tried…or just to be able to connect with other spouses here so we can friend one another so we can use this as a, so to speak, bitching session, or to put a bit more nice, sharing session, to get things off our chest.

This is all very new to me, I am not sure if this is a way to start things, but am doing my best and hoping that this will open up a new area for those of us in similar situations...

Thank you for taking the time to read my story, hoping I did not babble to much, and I do hope we can get a good gathering of a group for the loving wives/husbands taking care of our spouses and getting stress relief with a little chatter.

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You would thing that all the medicine would help him sleep but noooo....he roams around in his wheelchair or walker all night. If he could walk he would be out the door and gone. Our son stays up with him and listens out so I can sleep. At least when Im working I know he is safe in bed asleep.. But I worry about the phone ringing or someone knocking at the door. He cannot handle those things. Thanks for listening to my rant.
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He takes one 300 mg at night, 150mg in the morning and another 300 mg of seroquel in the afternoon. His doctor stated he cannot filter out the negative thoughts anymore and the medicine will help him cope, and it does. I could not take care of him without it. He thinks our yard man is mowing several times a week and of course in his mind I am having a affair with him too....so I have to guard the door so he will not make a fool out of himself. He looks at papers all day long (the same ones) He tries to explain to me what it means in his mind. In reality it just junk mail or his medical insurance information. He is just 60 yrs old. He cannot walk but that does not stop him from trying and he falls everyday. He has seizures too......lots of medicine for that too. He is a mess but we are trying to keep him home at long as we can and its getting hard. His days are numbered living here and I hate to say it.
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upallnight - what a bad situation you are in! My husband is probably at a different stage, and isn't THAT bad to me. But recently I've tried something new that might help.

My husband was telling me about how horrible his life had been. He does have evidence enough - broken home, his own divorce and more. I got a paper and started writing down two columns. He can remember the bad parts, but he forgets the good stuff. I listed everything I knew about, and the list of good stuff was much longer. He was surprised to be reminded of a silly game he used to play with our daughter, and of a very successful club he started. Just listing all his different friends changed his mood.

My therapist taught me that his angry outbursts give him a feeling of having power, and they make him feel better. That makes them a little easier to tolerate and ignore. I still don't like it, but I don't fight it so much.

Your situation does sound worse, but I hope my words can help a little.
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Hugs to you, upallnight. A bad day for a spouse is a bad day for the caregiver! Did you mean he is on 75 mg of seroquel?
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My husband has dementia and today is a bad day for him (and me). He has continued to berate and belittle me all day. He is now on 750 mg of seroquel a day which makes him bearable. He is horrible to me! I am trying to keep him home but its getting harder. Our son and I care for him. (its the only way I can continue my job and pay the bills) I have to remind myself that he once adored, loved and cared for me. Its sad and I'm resentful.
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I am a retired soldier been diagnosed with dementia my wife is my caregiver. I also have bad joints all over; I hav PTSD due to the war. We thank d good Lord the VA has been taking care of me & my wife through their caregiver program.
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A friend of mine did that -- divorced her husband because she couldn't take care of him at home and couldn't pay for a nursing home. After the divorce, Medicare took over.
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I don't think I would have a problem divorcing my husband if his behavior gets worse. Just hate to leave him in our house which he can't take care of. He has long term health care insurance, so I'm planning on him using that! :)
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From my experience I'd say that changes in behavior, added to the other stresses of caregiving can make divorce a viable option...or seem like it. This may be especially true if the marriage was not a happy one prior to the illness. My husband belonged to the "town saint - house devil" league. I should have divorced him early in the marriage, but now that he is 87 with dementia and a terminal illness, I would fell guilty leaving him now. But, it is hard to deal with being the "Chief Everything Officer" and also the emotional punching bag.
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Whether the disease starts at a younger age or at the usual later ages, I can easily believe that a diagnosis puts a whole different spin on behavior and probably reduces the chances of divorce.

I was getting pretty discouraged at my husband's lack of attention. I'd say things like "Well if you'd listened to me when I was telling you about Monday you would know what to expect!" Then symptoms became more obvious, he had a complete meltdown, and the diagnosis was Lewy Body Dementia. Oh my! That put an entirely different slant on his behaviors. This invokes the "in sickness and in health" clause. I certainly made the journey with him.

Researchers are very seriously looking for bio-markers -- signs in the body that could be used for diagnosis very early. I recently heard a researcher say in a lecture that if dementia shows up at age 80 it has been developing in the body since age 50. (Depending on the type of dementia.) Wouldn't it be valuable to catch it in a routine examination at age 75 instead of at age 83 after multiple mis-diagnoses and family trauma?
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