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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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Unfortunately, diagnoses of this sort seem to be guesswork, as well as an evolution process. More than 3 years following his internist's first suggestion that my hudband "might be in early dementia" and two hospitalizations with very serious episodes of something called "Wernicke's Encephalopathy," we finally zeroed in on the proper diagnosis of his condition as dementia resulting from alcohol abuse - Korsakoff's Psychosis. Neither the neurologist we initially consulted nor the neuropsychologist who subsequently evaluated him caught it. Misdiagnosed? Perhaps, but in his case there were other factors, such as a progression of brain damage from a subdural hematoma he had suffered 10 years prior to emergence of dementia suspicisions. Wish it could be simple, but it isn't -- it's a process that isn't always accurate until you luck out and something points you in the right direction; and we must also bear in mind that a current diagnosis does not preclude development of a different form of dementia with aging. And as to behavioral changes, those have been very difficult indeed. In my husband's case, his most undesirable personality traits are accentuated, and his forceful manner has made it even harder for me to reconcile things. Lately, though, having notice that he "mirrors" my moods, I've set about adjusting my own attitude to be more positive, which has helped me rediscover the big-hearted man I'm married to and put my occasional divorce yearnings to rest. I've also found another thread on this web site dealing with validation of the dementia-sufferer's altered reality, which I've found to be quite revealing an extremely helpful.
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I often wonder in the case of EOAD if divorce occurs due to the lack of dx. The disease causes changes in behavior that is hard to understand with a Dx. Unfortunately it takes some many years to be properly dx with EOAD as many are misdiagnosed due to age. Would a timely dx change the dynamics of the marriage? I think so, tthe spouse may choose to walk the journey together. There are support groups to help them through. There are some resources, although not enough for respite. Also early dx could give the couple more time to plan/ manage finances. The entire family could pull together rather than end in divorce.
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Yes, caring for husband is difficult especially when the husband is difficult !! My husband is going downhill, but doesn't want to do anything about it..so I jut have to sit back and watch. But he is older than your husband so I can understand how hard it must be to watch a younger person going through this. But just a note....my aunt had the same thing cirrhosis of the liver (non alcoholic) she was about 66 at the time and she was not in good shape and also smoked!! But she was able to get a liver transplant at the Mayo Clinic in Jacksonville. Seems like if a smoker was able to get a transplant, your husband should be able to! Of course she had to quit smoking before she had the transplant, but she started back afterwards. Not sure how they deal with that. But wish you the best.
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Hi, Lillie. I think caring for a husband is extremely hard. We are older than you -- will celebrate our 59th anniversary this summer. My husband (once a college professor) suffers from LBD, a bad disease that is slowly stealing his strength and his mind. You are right when you say his disease takes over your life. When your spouse is sick, you have no place to fall. Good luck to you always.
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I really don't know how to start.My husband is 52 and has cirhosis of the liver.He had his gallbladder removed in 2014 and they found the liver disease.he doesn't drink and he has type 2 diabetics.He weight around 300 lbs,but he is tall and he has lost about 100 lbs in a year. We have went to see if he can be able to have a transplant for his liver,but he has got to be in good shape to have one.This man used to work 7 days a week and then some.We have been married for 33 yrs and have 2 children.He is totally depends on me for everything and I do it.Just a lot of time I have no one to talk to and no support group where I live.Being a caregiver takes a lot out of them.No one really knows until you have a love one that is sick.He tries to help,but it is so hard cause with this liver disease it does a lot to their body.He gets so weak and he can't even hardly walk to the mailbox and when I let him he is so out of breath.He has a very hard time writing his name because he shakes so bad.I can see the sadness in his eyes every day cause he is not the man he used to be and it breaks my heart.His eyes are turning yellow and he has no muscle mass at all.Some of his toenails are coming off also.I do the best I can ,but I feel like I can't do enough for him.I have always been the one to make everyone better,but this disease is taking over my life.I know there is a lot of worser people out there with other sickness,but I feel alone a lot.Me and him talk about him dying and that is something that he is ok with.But I can't fix this.Does anyone else feel like me or am I just be selfish.I don't want to see him suffer and I am each day seeing and watching him fade away.he has been a good father and a good husband and we have got one grandchild,he is 4.He tries to spend time with him but he can't play with him much cause he feels so bad all the time.I just need prayers.Thanks for letting me vent,I needed this so much.God bless everyone that reads this and being a caregiver is all about love and spending the most precious time you have got left with your love ones.Don't take nothing for granted cause we are not promise tomorrow.
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I, too , am the soul caregiver of my husband. A couple of years ago I attended a caregiver seminar put on by a state agency and a local hospital. I thought, great, some support and guidance. Well the all day seminar ended up being about caregivers of the elderly usually with Alzheimers. My husband was only in his mid 50's and although he was dealing with a little short term memory issues (old anuerysm site sprung a leak) , most of what he had to deal with was paralysis from a fall that fractured a vertebrae in his neck resulting in complete left side paralysis. He is a fairly young man by today's standards and there was little to no information about things available to a middle aged man, bright, former newspaper cartoonist, sailor, etc. There was respite care for me, like some one to sit with him so I could go out, but I was'nt about to drop him off at an adult care facility, with no one his age, so he would just sit there and stare out the windows. He needed stimulaton, activities, hobbie clubs, etc. Other than this "babysitting" respite there is nothing to speak of for people that aren't elderly or experiencing dementia. We've worked hard to set up his model railroad system in our home and that is a lifesaver. But there needs to be more creative, stimulating, intelligent activity sources out there for younger middle aged disabled and their caregivers, in this case, its me , his wife. We are doing research on doing some travelling but this world, despite it's amazing advances in all sorts of technology, is still being brainless and non inclusive for disabled people. It's time to clamp down hard on our country and overseas also on accomadating the disabled. All they want is to feel normal. Do you know how much stress is relieved when they can feel normal. I am quite the "hard a**" when it come to any, and I mean any, excuse not to make changes in every building, street, etc. to accomodate the disabled. I'm not cutting anyone any agency any business, any slack. We can grow body parts, get robots to deliver mail, send rockets to Mars, then by golly, those that are the engineers and the brainiacs in technology need to get their butts into gear and make corrections where they are needed. I won't buy any excuses. I'm not mad I just want the world to fairer and make the disabled feel normal!
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Like many here, I am a caretaker for my husband who is 86. I am 67. We have been married 20 years. My husband was always difficult at times, but in 2008 I began to notice that he had memory loss and occasionally was confused. It became increasingly worse, as did his behavior. He is often paranoid, belligerent and secretive. He has given away large amounts of money to his children, jeopardizing his and out ability to pay for nursing home care should it become necessary. He doesn't have AZ, but a combination of vascular dementia and dementia resulting from years of untreated COPD (Now severe). I sympathize with others in this boat. It is hard.
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Wow! Such heart warming responses... I really appreciate your encouragement, ladies.

Some days when I am about to give up, I call our son who lives 15 minutes away and is here whenever things break down, and he talks to his Dad, expressing love and assurance that Dad is truly home and that he knows how to get in touch with him. He promises his Dad that he will alert anyone looking for him that he is indeed in the home which they both 'built' (with some help). Dad thinks he has another home before he came to 'this place' and hopes to get back there some day...
so sad for him.

Another problem is that so far we have not found an anti-depressive which he can tolerate. I load him up with herbal supplements since almost all synthetics cause severe diarrhea, but have not found one that cheers him up.

Last night he slept through without even getting up, let alone pacing the house off and on. His first comment to me was that he had been awake for hours - it was 8:30 and he had not moved for over three hours - I kept peeking since it was so amazing, etc.. Perhaps it was the call to his son that made him relax enough to get a good night's sleep, eh?

Thanks again for your support. It really helps.. L
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Lois: I wish I could do all those things that you can do and I'm only 76 -- nearly young enough to be your daughter. My husband is 78 and has parkinson's and osteo in his back and hands. His tremors and falling have been improved with medication. He is still able to drive but a recent bumper incident in a parking lot tells me that it will have to end before much longer.

I have a condition called spondylosis and have had one surgery and may need another soon. My biggest worry is that I won't be able to care for him as his disease progresses.

Thank you for posting. You are an inspiration to me.
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So glad you posted here Lois, I am 69 and full time caregiver for my husband of 83, your husband sounds like mine, he does not know that I am his wife either. He knows my name all the time, but thinks the Navy sent me to take care of him, all I know is he is lost if I am not in his line of sight. I watch tv & he watches me, we have two sweet cockers which are so helpful to our situation. Please don't take it to heart, him not knowing who you are, he's doing the best he can to piece things together, if I try to correct that thought I get an abrupt, you are not my wife, so although it hurts, it's best not to mention it anymore. We live each day the same way over & over, we caretakers are quite a unique group.
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Lois - I can hardly believe you are 90 and the sole caregiver for your 90 year-old husband! What a miracle that you are still able to do so. Clearly, from your post, you are very loving, clear in your thinking and very articulate. I'm caring for my husband full-time too (later stage Alzheimer's) and working full-time (mostly at home now), and there are days I don't think I can do it anymore - and I'm only 64! In terms of your husband not knowing who you are - I think you probably already know this is a normal part of the progression of dementia. It will only frustrate you - and him - to keep correcting him. Just be a character in whatever world he's living in because he can't live in yours anymore. Please take care of yourself though, because if you become ill or injured, you will not be able to care for him. Let your children help/relieve you regularly - or let friends from Church or a paid caregiver come in periodically. I am strengthened by your ability to do what you're doing at your age. God bless you and your husband!
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I am 90 years old with a 90 year old husband. We have been married just over 70 years and have had a usual life with ups and downs and with four great children. My husband has vascular dementia. He can barely walk from spinal difficulties. We have his BP under control and he seems to have beaten CHF or it is under control without specific medication. My discussions with our FP indicate that nothing can be done to improve any of his problems. Of course he is severely depressed. I am his 'only' caregiver at this time and have a large property to care for, still mowing and removing snow from a 400 ft driveway, and enjoy doing that.

I understand his depression and am trying to avoid that myself and indeed Freecell has been a Godsend here - I have played thousands of times (can't get above 75% any more - used to be hovering around 92% - must be old age). But I digress..

My big problem is that he does not think that I am his wife - that the Army has sent me here to cook his supper every night, etc., etc. I find him crying over a long ago photo of us together with the comment that he wishes she would come back and is aghast when I say that is me in my outfit at his sister's wedding, etc.. Over and over on a daily basis we do this.

He often does not believe any of the kids' declarations that I am indeed his wife and their mother. and often tells me that he is ready to go home now that supper is over.. It is just horrible for him. The only thing that works is some humor and many hugs and declarations of my devotion to care for him until the Lord calls him. My biggest problem is the effort to keep an upbeat peace of mind and still laugh off the frequent changes of underwear due to his lack of control. I am thankful for Immmodium and panti-liners - our mainstay...

It is so sad that he knows that he is losing it and feels useless. He is not interested in going to church though the pastor has been here several times.Nor will he watch TV or read. He does have very bad vision, but due to his previous vessel problems the Dr does not want to attempt surgery for cataracts. We are thankful for our special pet, Marley, a lovable, playful black Lab and our children who are here when needed - at wit's end, sometimes. We built our retirement home in a beautiful spot with good neighbors who rush to help if called - tho I am unusually independent to a fault, sometimes..

There, I did it and will submit. Any helpful advice is gratefully received. Thanks for reading this.. L

Note: I submitted this to the question regarding patient's wish to die and was advised to place my message here. I have read all 135 answers and have felt better for it. I have also been writing my memoirs after spending years doing the family genealogy. I put my mother's line in story form for easier reading. Writing is good when there is time for it... Our Memoirs group has dwindled, but we still get together several times a year and read each other our 'stories',
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My books are available on Amazon.com. Two are on Kindle and can be read free. I can read kindle books on my new Win 8 laptop. If you're interested, my first name is Anita. I did a series -- a family saga that begins with Elizabeth in @ 1850.

Al is up already which is unusual. Trying to talk to me without his teeth in. He mumbles and hangs his head so that his voice goes to the floor. Hard to understand him sometimes. My friend said she noticed him shuffling when he walked on Tuesday. His mind is fairly alert yet, but he has trouble with short term memory.
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Well,the few times I went to the group therapy, no one was complaining. More like we were purging our angst, fears, frustrations, etc.... I did bring down the group when it was my turn. I told the truth. How I was suicidal, and my 7 siblings didn't help me caregive 2 bedridden parents - all by myself. I still had a full time job, paid oldest sis to babysit (note - babysit - she doesn't do pampers) while I worked Mon-Fridays. Then hired another caregiver (non-family, since my family didn't want to help) for Saturdays. When I was done, I could feel the air was so heavy. I felt bad being such a downer to the group. But it felt great purging it to total strangers. That was 2 years ago. I rarely go now. I find it very stressful how we all have to introduce ourselves and tell a little about ourselves.

Amot, my oldest sis is like you. She can write stories. I've been encouraging her to write it into ebooks. I told her about the site.. smashwords. Have you tried this site also for your books? I would go there, download freebies. Then if I like the author, I order her books. Usually the first book is free, then the next series is like $1.99, then higher as each series come out.
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Bookluvr: There are lots of groups in the neighboring town, which I can't get to without a car. Most of them are children grumbling about taking care of a parent. All those groups do is make me pray that I die before my daughter feels that way about me.

I love your name because I write books. I started writing mostly because I needed something quiet to do while Al is sleeping. I have 7 now. (He sleeps a lot : )
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Amott, there should be a caregiver's support group in your area. I live in a very small island. You can drive 40mph, and drive around the island in 1 hour. That's how small it is. Yet, for such a small island, we Do have a caregiver's support group. We meet once a month, and we have a light breakfast and a real lunch (not finger food or hot dogs). But I don't attend as often as I should because it conflicts with my work schedule - Saturday mornings. But, the few times I went, I can see where I could get close to some there. If you can find one in your area, who knows? You might find a good friend who understands what you're going thru.

By the way, when you say tea, do you mean like the English way of tea? With cream? Yum! I went to London years ago. That was the very first time I ever knew that you can put cream in your tea. I tried it, and loved it! When I went to Cairns, Australia, they were serving one tea per passenger on this tour. I poured some cream in it, and.....Ohhh my goodness!! That was sooo delicious. I wanted seconds and thirds. Unfortunately... it was only 1 per person. If you're serving that kind of tea, I'd like to invite myself to your lunch. =)
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You know what I wish? I wish we all lived close enough to each other that we could go to lunch once a month for tea and sympathy. No one understands what we are going through like someone else going through it.

I
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I don't know if this is the appropriate place to write this but it does have to do with caregiving for a spouse so I thought I would go ahead and write it here.

I'm writing this because I thought that my husbands experience over the last seven to ten years might help someone else having difficulty getting answers to their questions. We were married for 41 years when he succumbed to Multi System Atrophy (MSA). He was 62 years old as was I. In his 30's he was diagnosed with seronegative rheumatoid arthritis and began many years of trying different drug regimens to control the degeneration and the pain he suffered. When biologics were introduced as a treatment, he tried several different ones but didn't respond well to any of them so finally ended up on prednisone in increasing doses over the years. As most people know steroids cause devastating effects on the body leading to many conditions, most of which he developed besides RA.

In 2006, his back and leg pain became so severe his doctor recommended back surgery. He had continued to work up until now. In spite of constant pain and taking large doses of narcotics, anti inflammatories and steroids he remained as optimistic and jovial as he had ever been. I'm telling you all of this as a lead up to the changes that started occurring soon after the surgery.

Our daughter, grandchildren and I noticed soon after the surgery that he was having difficulty with his short term memory. He developed a "benign" tremor in one of his hands. He became impotent and he began having nighttime incontinence of urine. My husband and I both had 30+ years of medical experience in critical care and both knew that surgery could have caused some of these symptoms, so we began making the rounds of the specialists trying to get some answers as to what might have happened if anything. Every doctor told us that it could be a combination of the drugs he was taking (26 different ones at the time), or possibly a mini stroke but not likely. Over the next 4 years he did fairly well except that we could not get his blood pressure stabilized. One day it would be 260/150 and the next 90/45. We tried all different combinations of drugs with no success. Then in 2010 his aorta dissected. He survived and had surgery. But then his gait started changing, his balance became very poor and he fell frequently. His breathing changed--at night he would have long periods of no breathing and was diagnosed with sleep apnea. But he didn't have the usual kind of obstructive sleep apnea where the tongue falls back or the soft tissue from a large neck makes it hard to breathe. His was called central sleep apnea which meant his brain didn't tell him to breathe at all, so he went on a special kind of respirator type machine for home use. During the day his breathing when he was awake was very loud and heavy, similar to a loud sigh. He started having problems swallowing, his speech became a little slower and his handwriting became almost illegible.

In March of 2012, he fell walking out to the mailbox and broke his back. The doctor corrected it and he came home. 3 days later he fell again and broke 3 ribs with multiple other injuries. This time while in the hospital it became very apparent that his BP was related to lying down and standing up (postural hypotension). This is a hallmark of MSA apparently and several of his doctors gave us the diagnosis. Due to complications he was in the hospital for quite some time. When he came home in June he could still walk very slowly with a walker. By October he couldn't get out of bed any longer and slept 18-20 hours a day. He had decided when the doctors gave him the diagnosis that he did not want any extraordinary measures taken and did not want to go back to the hospital again. I promised him that I would keep him at home and I took care of him. In October when I couldn't take care of him by myself any longer, I got a home health aide to come in for a few hours several days a week to help with his care and give me time to run some necessary errands. He passed on December 31, 2012.

Multi system atrophy is a very rare neurodegenerative disease that is often misdiagnosed as Parkinson's disease. And in fact, there is a form called Parkinsonian type MSA. There is also cerebellar type MSA or you can have a combination of the two. It used to be called Shy-Drager Syndrome. Very few doctors know of the disease. In fact, only one of my husbands 14 different doctors actually knew of the disease and had to educate the other ones. Even when we went to one of the largest most, well known medical centers in the world, I had to explain to the doctor he saw there what it was. It usually affects men initially in their 60's but does affect women and has affected people rarely in their 30's-40's. The life expectancy is 7-10 years after diagnosis assuming you get a correct diagnosis at the onset of the symptoms which you usually don't . There is no treatment other than to treat the symptoms and there is no way to definitively diagnose the disease except postmortem, when an autopsy is done.

I'm sorry to be so blunt with the information, but I noticed that several individuals mentioned they were having difficulty getting a diagnosis because the doctors didn't seem to know what to tell them. I know from personal experience that even though the information was devastating to us emotionally, we appreciated knowing what to expect. My husband felt more reassured because he had always taken care of me every way he could and knowing what was coming he could get his wants and desires made known legally so there would be no ambiguity about how we would proceed. And it gave us time to say what we needed to say to each other and him time to say good bye to our daughter and grand daughters whom he adored.

I hope no one needs this information but if you do, just Google multisystem atrophy. Vanderbilt University has good info as well as the Mayo Clinic. There are also some informative personal blogs that give a more personal view of what to expect.
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Amott, I started reading this book months ago. I did learn a lot from the few chapters I read. Such an eye opener, isn't it? I learned from this book that for those of us who do long term caregiving, that every time our "loved" one loses a part of their old self, that we need to mourn this. We're doing a slow mourning all these years. Then when the person dies, we feel "funny" that we're not mourning like everyone else. sigh..... It just makes us look bad to others when we don't cry along with them. (Thinking of when mom died last year. My siblings cried. I didn't. I was just relieved that she finally passed away, and now I only have bedridden father to take care of. He's just starting his journey down senility lane.)
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I know I've posted here before but can't find it, so here goes. I'm 76, Al is 78. We've been married nearly 58 years now. (Yes, we married young.) I've been reading a book "Loving Someone Who Has Dementia" by Pauline Boss. What we are going through is called "ambiguous loss." It's when your spouse is here but not here.

The hardest thing is to watch him slipping further away. Ours has almost always been an ambiguous relationship, but we had seven wonderful years after he retired. That all fell apart two years ago. Now he is either in bed or playing games on his computer. I miss what we had during those 7 years and mourn for them. He can still manage to care for himself and can drive (if I keep reminding him where we are going.) I don't know what I will do when he can't do those things anymore.

This book is helping me cope with the stress and special grief of the loss that no one else acknowledges like they do when there is a death. I strongly recommend it to all of you.
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