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.
Thank you!
After venting here, I actually managed to do something reasonable about the trip I didn't want to go on. Instead of explaining why, I just said "Is there an alternative to me going on all these trips to Seattle with you?"
So he got online and told me the VA would reimburse his taxi from the ferry to the lodging and back, etc.
That left the dinner hour, so I emailed our semi-daughter who lives about an hour from the hospital. She said she'd be glad to drive down and take him to dinner.
So hopefully that will be win/win/win. He gets a holiday and a break from me, they get a visit, I get a break. Of course I have to drive him to the ferry one day and pick him up next day (which will take 3 hours of each day), but it's in the middle of the days no rush. I guess he and I will eat out together both days, which is our favorite thing to do.
So that was better than confronting him about taking these trips just for fun. Let him HAVE his fun. He can be a young carefree unmarried sailor exploring foreign ports on public transportation again!
This kind of thing is not what he has memory problems with. Sounds like your husband's memory problems are much worse!
I'm so sorry about how your wife changed. It sounds awful. How old was your wife? Can you mend things with your sons in the future? It will be hard if you feel betrayed, but family is valuable - except when it's toxic!
I'm so sorry about all your husband's problems! I wonder why they call these the golden years! Probably just because we're not dead yet.
Of course your husband has mental problems! What kinds of doctors does he have? It sounds like you are closer to age 60 than to age 80, so he's on the young side for dementia. My husband's symptoms started showing up around age 62, but weren't bad enough for a diagnosis for 5 to 6 years.
It's hard to tell the doctor about all his symptoms when he's sitting right there in the room. Can you write up a description of all the things you notice, and mail it to the doctor or doctors? It's easy for a primary care doctor to brush you off. Has he been seen by a neurologist? Has he given up driving?
People argue about the value of getting a diagnosis. For me, it was a big relief to have the "authorities" confirm what I was seeing. Good luck!
Good luck
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.
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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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. =)
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 : )
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.
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.
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',
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.
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
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?