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.
Hilarious in a disturbing way. I know what you mean. But my husband would make up reasons why!
Yet another reason to be glad I'm retired. God bless us every one.
I fall down from time to time, usually from not looking where I'm going, and I am certainly shakier afterwards.
Did you notice that there is a section here for PD? Again you probably know that. I know very little about the disease, myself. Good luck.
Jenx4740's regarding your concerns about financial survival for the spouse, we're in the same boat. We're living on his on Social Security Disability, with VA health benefits for him, which works for now. But I know when we hit the care facility stage, our assets will be an issue. We'll probably have too much to qualify for assistance, but not have enough to pay for a care facility, as least not for long. The big middle class "Catch 22." So the big question will be how do I come out with enough to survive. Since I had to retire early to take care of him, I'll probably be out of the workforce too long to go back to my old profession, and will probably live into my 90s, if family history is any indication.
We have lived frugally all our lives, so have a little put away. It would have been enough to continue to live frugally and work part-time, if this hadn't happened. Unfortunately, the last few years of medical expenses (prior to getting on VA) have caused some deferred maintenance to our house. A friend recently suggested that I make sure to use some of our savings to get our house in top condition and a new car, so I am left in the best position possible, and there would be less savings to count against us. In our state, I will be allowed to keep the house, a car, some savings and some of his income. Anyway, I need to go to an elder law attorney to figure how to do this legally.
It's all very nerve racking, since my crystal ball is on the fritz.
How can you get him to agree to hire help? What happens if you "ask" him to mow the yard? I know you don't really want him to do it. What if you said, I'm hiring someone next week if you don't get it done by the weekend. Then when he wisely doesn't try to do it himself, say, I have to hire someone because you're too busy. Then he can say that he was GOING to do it, but you were just too impatient. Face saving.
Have you tried begging? My father never responded well to logic, but he understood and respected "want." Tell him it may be silly of you, but you WANT to hire so and so because ----- He needs the work, or he will do it right now, or it makes you so sad that it's not done, ------ and will he please please just let you do it? Because you WANT to do it.
What works with him? You should try not to make him admit that he can't do these things, or admit that he's being irratonal. For example, "You've mowed the yard 500 times. You should just take it easy." Would an "irrational female" temper tantrum work? He could feel superior to you by remaining calm. Bribe him with sex or a special food. Agree to skip one of your activities to stay home with him to watch a special movie.
He may be a real tough nut to crack, but try every different flavor of honey, because it usually works better than vinegar or logic.
Thanks.. Portday
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 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?
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.
I drop by once in a while on this thread HOPING it will become one of the 4 major threads on AC.
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.
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.
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!
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.
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.