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

Deci55: Yes, a diagnosis can take years. I tried for years to convince our primary care doctor that my husband was sick. Finally, he gave up and sent us to a neurologist for evaluation. For now, she called what he has as "parkinism." We still don't know what causes his symptoms and that might take more years and more tests. You could make an appointment for yourself and go in alone to talk about the problems you see with your husband. You need to know what to expect in the future.

Good luck

Deci55 your situation sounds eerily like mine has been for a number of years now, and I feel your pain. My husband had brain surgery 10 years ago -- a craniotomy to evacuate a serious subdural hematoma -- and ever since has been plagued with short-term memory loss which has worsened over time. In recent years he had been exhibiting "sundowning" and other dementia behaviors, and had actually been evaluated by a neuropsychologist; in addition, his internist had started him on Aricept as a precautionary measure. Further, he has been having periodic episodes of what I've termed "brain fog" for almost 4 years now. Recently, though, during an acute "brain fog" event which rendered him semi-comotose, we made the discovery that his alcohol abuse was the cause of most of this. Now that alcohol is out of the picture, the dementia behaviors have ceased, and he has become a far nicer, more agreeable person. While the short-term memory loss is here to stay, not having that "evil twin" to deal with has been such a pleasant surprise. Of course, if your husband isn't a drinker, none of this will apply to your situation -- but if he is, perhaps you might consider looking into Wernicke's Encephalopathy, Korsakoff's Psychosis, and Wernicke-Korsakoff Syndrome. Diagnoses often take years to clarify, and just knowing exactly what you're dealing with is half the battle. I wish you the best!

Deci55,
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!

Truson, I've heard of chemo brain, but don't know much about it. To get more answers, ask a question or start a discussion with a title using chemotherapy and cognitive changes.

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 believe my husband has a mental problem (he has not been diagnosed with dementia.} I have asked his doctors but they seem to think he is fine. As his wife I can tell you he is not. We have been married 35 years together 38 he has been very sick for the last 5-10 years with brain surgery and 2 heart surgeries. He has a giant aneurism in his brain. His short term memory is bad but not all the time. He has had what I call "spells" where he is confused and does not understand where he is or why. He no longer can go anywhere by himself (he crashed the car this summer) He does not handle his meds. He needs to be reminded to shower and does not want to wash his hair, when he does shave he misses spots. He sleeps 12-14 hours at night and most of the day unless I take him out in the afternoon. He is not angry which I glad about. but we are not husband and wife we are dear friend and I miss him everyday. We lived in the mountains, and I just sold our home of 31 years .He slept while I closed up our home. I bought a home that is( being build down south )near our daughter. I realized I need help with what is down the road. We are staying with my sister for a few months and it has giving my a much needed brake from the 24 hour caregiving. I owned my own business and worked from home but I put that on hold for the time being. I realize its hard but I try to stay in the moment. Our daughter is getting married this April and I really what him to be OK on that day (that is my pray

Does anyone have anything to contribute about the effects of longterm chemotherapy on cognition, especially judgment and decision making? After caring for my terminally ill wife for seven years, she had a complete personality change. Nine months before her death, she decided to divorce me, change our trust and rewrite her will, alienating me from our two grown sons. I want to connect with anyone who has had or knows of anyone who was similarly affected by extensive chemotherapy.

@ jinx
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!

The way he talks to the experts is familiar. Smart people don't like not understanding things, so he dominates the conversation to avoid showing his memory issues. I have to bite my tongue when he starts "explaining" things to me, and speculating about causes. He's wrong! But I usually bite down and nod my head.

Flora, I hear you. Husband wanted to go hear a local music gig, and I didn't really want to go. I should have gone, because it was local, and I would have enjoyed it once I got there. But we both stayed home. He'll be dead someday, and I should have made sure he went. (But I didn't want to!)

My husband can still go for long walks and use his cell phone, and my daughter takes him on expeditions, so I'm pretty lucky. I can even send him to a store, as long as it's only one store, and the list is short, and he has his phone with him. We live in a little city square, with lots of restaurants, pharmacies, bars, doctors, bookstores and a hardware store. We're a few blocks from a bike trail that goes for miles. There was a nursing home at the end of the street, where my 7 year old daughter planned to place us, but it was converted to condos.

He does yell at me sometimes, and then forgets that HE was mean to ME. I stopped speaking to him for a few hours, but then realized that he had no idea what I was doing. I could restart the fight, or I could do the right thing and let the whole thing go. I chose the right thing this time.

Thanks for starting this thread. Maybe I'm hitting a factor that is different from 'aging parent' situations. Usually an aging parent is either still in their own home and the child has a life elsewhere, or the parent has left his home and so has already accepted a new, subordinate relationship.

My husband and I are still in our home and 'normal' still means doing everything together. (With him, as Man, being the Big Brother dragging the Little Sister, me, around.)

"Holding the log
while he sawed it. Holding
the string while he measured, boards,
distances between things...
Or sat in the back
of the car, or sat still in boats,
sat, sat, while at the prow, stern, wheel
he drove, steered, paddled." [Atwood]

So now when he feels good, it's back to that. Except I can't say No and stay home. I can't say "Go by yourself and have fun." Because his bad times come on suddenly, at which point I'm needed to take over. I usually enjoy the outings too, nice restaurants -- but several times in a week is too much!

On some nearby things I can say "I don't want to, find a buddy or stay home or go by yourself if you're up to it."

Dammit, today I feel like he's using medical appointments as an excuse to take a trip where I HAVE to go along, because it's all day or overnight. Me: "Look, your neck isn't hurting any more, the local physical therapist fixed it, so could we call up and find out what is Monday's big VA hospital appointment is even about? Is it worth the trip over the water and overnight lodging?"

Him: "There are some things I'd like to talk to them about."

Rant ahead:

After spending years trying to get seen by a real endocrinologist, he spends half an hour of her time asking her a general question about different kinds of insulin -- that he could have got from the Mayo Clinic's website. With a lawyer, he spends the time asking about something that has nothing to do with our own reason for being there. Almost every time we have a conference with a professional, he derails it with some unrelated discussion. (The professional thinks that means we've got our important questions answered so she can relax a while. So I have to rudely interrupt to get back to the subject.)

Obviously he needs some closer, really social outlets. But we're rural, and trying to arrange some professional type buddies for him would seem pushy. I'm pushing on too many things already.

Thank you, tooyoung for the answer. My husband is 77 and the neurologist finally came up with parkinsonism after dozens of tests. However, they couldn't find what is causing the symptoms. The medication helps with the tremors and he hasn't fallen in months, but his shuffling and mumbling has gotten worse. I guess it doesn't really matter. We'll just have to take a 'wait and see' attitude about it. In the meantime, we're trying to get rid of some rental property which causes him a lot of stress, and he's finally retired.

I'm glad to hear about some problems other than ALZ/Dementia. My husband (we're both 70) has memory loss, mood swings, etc, but the doctors say that his known diseases could cause all this (diabetes, PTSD, heart failure, etc) and that he doesn't show markers of Dementia. So I have got hope that he may get much better, as the doctors find better treatments for these treatable things.

Still I'm coming round to the idea that even in a best case, he's not going to come back to a vigorous 59 year old self! And maybe never ... emotionally resiliant?

It feels weird!

Jinx4740, something else occurred to me w/regard to diff btwn ALZ & alc/other dementia. Neuropsych mentioned that brain function on side injured in subdural hematoma was affected far more than uninjured side, which functioned on a higher level. Perhaps in ALZ both sides of brain are noticeably impaired, even in early stages??

Underwent alc withdrawal in hosp last wk, resolved to stay sober now, fighting the demons thus far successfully. But this does not undo dmg already done & his physician concurs with hosp diagnosis that existing dementia is probably to a great extent alc related. As to diff between ALZ & alc-related dementia, all I can offer is that when he was evaluated 3 yrs ago by a neuropsych, she found no evidence of ALZ from her testing & speculated that his dementia was due to progression of brain damage sustained in subdural hematoma 10 years ago. At that time, though, the Werneke-Korsakoff had not been diagnosed. His physicians and I are confident at this point that there is no ALZ present & that the brain damage together with alcoholic dementia resulting from Werneke-Korssakoff are his culprits.

SWOMBO -
Does your husband still drink? Have they told you anything about the differences between ALZ and alcohol related dementia? My husband was diagnosed with ALZ, but he spent decades as a pretty heavy drinker. He's still independent enough to go to the bar. When he has one or two, that's OK, but as you know, once they start, they don't necessarily stop.

My husband and I are 76 and 68, respectively. Second marriage for both of us -- 27 years. Very intelligent, articulate, loving man and we were almost blissfully happy until his altered mental status started becoming more evident about 3-4 years ago. I say "more" evident because after suffering a spontaneous subdural hematoma and undergoing an emergency craniotomy 10 years ago, he emerged with a somewhat annoying short-term memory loss, although he otherwise seemed mentally intact. I should also add that he is an alcohol abuser. So 3-4 years ago when the s/t mem deficits became more profound & I started noticing other (very puzzling at the time) dementia behaviors, his internist suggested that he might indeed be in early dementia. Evaluation by a neuropsychologist suggested that this was not Alz, but more probably was the result of a progression of the brain damage sustained in the subdural. Within the past week, though, following hospitalization for what has now been diagnosed as Werneke's encephalopathy & most probably Werneke-Korsakoff Syndrome, the plot thickens & I speculate that his dementia may also relate to his chronic alcohol abuse. It's been an interesting, though frustrating journey thus far, and where we go from here is anybody's guess. It's good, however, to be able to compare stories with all of you -- helps to put things in perspective!

This is in response to Amott6's post 24 hours ago, asking if "parkinsonism" follows the same path as Parkinsons. (Boy this string goes all over the place with stories and questions!)

My husband was first diagnosed with "parkinsonism," after his tremors first showed up, which was 7 years after his memory problems and 5+ doctors, who couldn't diagnose anything. The Parkinson's specialist, who diagnosed the "parkinsonism", knew the difference and immediately sent him to a neuropsychologist, who fined tuned the diagnosis to Lewy Body Dementia. That was 5 years ago.

What I've learned in these past 5 years is that there is no "same path." One man I met, who had Parkinson's, only had hand tremors for years and died at the age of 70 something of a stroke. Another man, who was diagnosed with Parkinson's at the age 35, had a productive life with increasing symptoms and died bedridden in his 70s. Another man in his 50s, was diagnosed with Parkinson's and died within 2 years. I'm sure it is frustrating for the doctors not to be able to tell us that first this will happen and then that, but they can't, because it is different for everyone. It is unspeakable frustrating for us, because we cannot plan for the future. I'm trying to plan for the worst, hope for the best, and live for today. Easier said than done!!!

I have also learned that Alzheimers, Lewy Body Dementia, and Parkinsons are on a spectrum, which means that they share symptoms. There are some Alzheimers patients, who have some Lewy Body, and Lewy Body Dementia have some Parkinsons, and Parkinsons have some Lewy Body. Parkinsons patients usually get the Lewy Body Dementia toward the later stages of their disease. Lewy Body have the memory problems first and get the Parkinsons type symptoms later. Some Alzheimers patients maybe misdiagnosed, because Lewy Body is the 2nd most common dementia and most people have never heard of it, including doctors.

It is important to get the correct diagnosis, because there are meds that work for Lewy Body that don't work for Alzheimers. For us it was Exelon, which I think is similar to Aricept that someone mentioned above. I swear it has slowed down the progression for my husband and is the reason he is still somewhat functional around the house. Though I recently found out that the meds for the Parkinsons-like symptoms (body movements) don't really work well for Lewy Body patients, which had been our experience. Then there are meds that are REALLY bad for Lewy Body, and cause unrecoverable damage.

I hope I haven't been too confusing, but easy to see why the doctors aren't more specific. Most important thing I've learned is that there are lots of drugs out there, so if one doesn't work you try another, since everyone is different even if they have the same diagnosis. Also, if one doctor isn't helpful, try another one and try to get a neurologist or a specialist in movement disorder or Parkinsons, because GPs are no help.

For more info on differences between Alzheimers, Parkinsons, and Lewy Body go to LBD.org.

Come on, Captain, how about a few more details? I know she turned out not to be the right girl, but what attracted you? How did she fool you?

Ooohh, I like your stories! I have always loved to hear people's stories - growing up, schooling, work, etc... Thanks Jinx and Amott.

I drop by once in a while on this thread HOPING it will become one of the 4 major threads on AC.

heavy drinker and a head on train collision? man this story writes itsself..

Hi, Jinx. I met my husband when I was 3 days old. His brother & I were born in the same hospital. Our families became friends although we lived 20 miles apart. I was married at 18 and worked his way through college. He has a Phd in Pharmacology and taught at the Mass. College of Pharmacy in Boston. Like your husband, he's a very smart man. He decided to go to work at a big pharmacitical company and had to take early retirement when they downsized. He then re-activated his pharmacist license and retired for the fourth time yesterday.

I noticed something was wrong when he began falling, his hands would shake and he would sleep 12-16 hours a day. It took three years for me to convince the doctor that something was wrong with him. He sent him to a neurologist, and after a year of tests, she says it is Parkinsonism, which is really Parkinson's of unknown cause. There are four or five things that 'might' have caused his Parkinsonism, including head injuries, water on the brain, and even some drug reactions. The drug used for Parkinson's helps.

He is still driving and handling the finances, but does things like pay some bills twice and overdrew his account last month.

We have a pair of townhouses that we thought would bring us a little income in our old age, but find that the upkeep and stress have become too much for him. We tried to sell them for a year, but no luck. We just had to evict a family that we'd come to be friends with after I finally got Al to add up how far behind in the rent they were. I was shocked to see how dirty they left everything. The new renters needed to move in right away, so we didn't have a chance to do anything to clean it up. Al's hands have been shaking badly all day and he was having trouble concentrating tonight. I know its from the stress of the past two days.

When he retired as a full-time pharmacist, he informed me that since I did all the cooking, he was going to wash the dishes. Lately, he's been forgetting so I've just been doing them about half the time. Not a big deal but I worry about the forgetfulness.

I am now 75 and he is 77. I had major surgery last Nov that has enabled me to walk and perform most of my duties. We were part of a musical group that performed twice a week in nursing homes all over the county. The group fell apart when I needed the surgery. I take shots every 4 months because the same condition is now threatening my hands & arms. So that is another worry -- I don't want to have another surgery so soon, but I wonder if I will be able to care for him in the future.

I can't get anyone to tell me if his condition will go the way of Parkinson's Disease. We both get depressed about this situation.

BTW, Jinx, I'm a writer. I have four novels available on Amazon.com. I have just completed two more.

Let's tell spouse "back stories"!

I met my husband when I was 36, through an ad in the Boston Phoenix, our alternative paper. I had a nutty but loving family, and he was mostly estranged from his. No need to split holidays! We both wanted kids. He even suggested adopting when I said I might not be able to conceive.

As an engineer, he wasn't the best boyfriend. He always had something to finish on the computer. But he was glad to have me, and didn't run around or anything. After a few years of marriage counselling and buying a house together, we decided to get married and have a baby. I was 44 the New Year's Eve our darling was born.

He always had that absent-minded professor thing going on. He had a real narrow focus, and things would slip out of his mind easily. We called it ADHD. He also drank too much. It caused weight gain, grumpy hangovers, and days lost to sleeping it off. He would "forget" how many drinks he had had. He would NEVER remember to call me and tell me where he was. I suspect that one is tied to the Y chromosome.

Seven or eight years ago, I started noticing that he would forget things. I had experience visiting people with ALZ, and I noticed that it was things that had just happened. A computer programmer, he started to have trouble, just a little, operating remotes and the microwave. Paying the bills online started to make him crabby, because the program "is a piece of s***." He started to have trouble at work, which only got worse when his job moved 60 miles away. Driving over an hour each way tired and stressed him out. They sort of forced him to take early retirement, which was quite a blessing. He tried a few more jobs, but they didn't last. By now, my daughter and I were very aware of his memory problems. He would say, "You didn't tell me that!"

They only approved a neuro-psych eval in 2007 because he was still working. It didn't show much. He is a very intelligent man (no duh!) with problems with attention. But it gave a baseline to compare for the future.

When he retired and started collection SS benefits, how happy and peaceful he became! It was a real relief for him to know that there was income, and that he wouldn't get fired.

Daughter and I started noticing more forgetfulness. He didn't know, and almost couldn't learn, what day it was. He would repeat things he had just said a minute ago. "You never told me that!" Confabulation - making up a memory to replace a lost one - started. He would get turned around in VERY familiar places. He was a cab driver for years! He had a wonderful sense of direction! That was proof to me that it was a real problem.

Whether to get a diagnosis was an issue with our marriage counsellor. Knowing he had a disease would only depress him, and there is no cure and little treatment. He gets good medical care, and had been checked for thyroid, b12, strokes, etc. He ALMOST passed the mini-mental status check. But I was feeling all alone, the only one "claiming" or insisting that he had ALZ. Finally he was tested. The neuro-psych eval this year - 2013 - showed definite progression. His neurologist diagnosed dementia of the Alzheimer's type, and put him on Aricept this April. I have seen a small but definite improvement. He can just manage to use the remote now to FF and REV. We don't use the ALZ word in his presence. He admits that he has memory problems.

I need to tell him things ONE at a time now, and my daughter needs to SLOW Down when she talks. He looks for jobs to do around the house to feel useful. I try to control my urge to say, I'm right and you're wrong. I ask him not to snap at me because it makes me feel bad. I thank him for everything he does, and from time to time I express that my appreciation is genuine. I almost never have to load or unload the dishwasher. I am grateful!

The next minute I am snapping at him over something. No saint here!

It's not too bad so far, and I try to plan, but not worry about, the future.

What's your story? What's your romance or disaster? When did you suspect?

Amott6, That's what we need, a crystal ball. But maybe if we could see the end of the road, we would all run screaming! I'm pretty sure there's no rosy scenario, other than waking up dead before things get too far. Little miss sunshine, that's me.

I assume that you are looking at the Q and A on Parkinsons on this site, because it's not something I am familiar with. I know that for my husband, they didn't say he has Alzheimers, probably because it is diagnosed at autopsy. They said dementia of the Alzheimer's type. Knowing nothing, I would feel confident that he is getting appropriate treatment if it was helping the tremors and balance. There seems to be little to do for the memory part.

Have you decided about that surgery yet? Again, knowing nothing, I might think that it's better to do it sooner, to avoid nerve damage to your hands. I think I might rather lose an eye than a hand! You will decide what's best for you.

I'm still trying to find out if "parkinsonism" follows the same path as Parkinson's Disease. I'm afraid that parkinsonism is just a cop out because they can't find out what actually causes his symptoms. The medication has helped with the tremors and balance problems, but his memory is getting worse. Maybe I need a crystal ball to tell me what the future holds for us.

I am glad I found this site. It is good to know what others are experienceing as we take care of our ill spouse. It is hard work. Seeing your spouse progresssion into illness., making the transition from the relationship you had before to what it is becoming now. But we hang in there. At the end of the day, want to say I did the right thing.
Thanks.. Portday

Seizures are a symptom of metachromatic leukodystrophy - unfortunately. :-(

What you describe could be a seizure --- which is treatable. Blessings on you and your husband.

Well my darling has begun fazing out... he actually started a few months ago, but now it's much worse. He just... blanks out. Can't speak, can't move his eyes, can't move his body. Then he comes back. *sigh*

It's such a balancing act, especially early when I'm not sure whether he's just being his usual lazy-a** self or really forgetting how. Often these days, he will ask me what to do or how to do it, and he can do something if I start him off or give it to him a step at a time.

jinx I like your take on " you should not make him admit that he can't do these things" my husband will not mow anymore, I do, he thinks we pay someone, I though for a long time he was just being contrary & wanted to pick & choose what he wanted to do, not true, it is exactly like you said, he simply does not know how to. He does not get his coffee anymore in the morning, I do, thought there he just wanted to me to get up & down, but again I found he did not remember what that strange black thing was that makes coffee, nor how to put it together that the sugar & cream go into it before he drinks it. My SIL just said on the phone this morning, that my husband does not do things anymore because I always did everything for him. They do not have a clue.