What's more to say :) Anything I ask of him starts an argument - if I do it myself - it starts an argument. While I can leave him alone for a couple of hours, he get upset if I want to go someplace without him. Always feels he needs to go, have never been able to figure out if he really worries about me or if he worries about what might happen to him if he was alone and something happened.
He's always been the type that assumed housework, cleaning, cooking, etc happened at night when we were asleep. He never wanted me to do anything when he was home. When we both worked, it was easier to hire a housekeeper but that's out of the question now, one due to the high cost and two he refuses to have anyone in the house for any reason. Wants me to sit and watch TV with him from the time he wakes up till he goes to bed. The only time I have to myself is the 2 or three hours I have before he wakes up. I can take my coffee out on the deck and enjoy the morning. Sometimes I read a little, but most of the time I try and do things I can do that won't wake him up. Dishes unloaded, wash started - those type of things. Heaven forbid if I wake him with the vacuum. Little things that were an irritant years ago have become major problems -- but not the type of thing anyone else would notice. I made all the excuses for him I'm going to, he won't go anyplace when invited - but wants me to make an excuse for him. He won't go to church, but always wants to go -- till Sunday morning arrives.
There are a few things we MUST be done by winter, not really hard and we already have the supplies. I think I can do most of them, other than replacing a window. It's just accepting it will be a running argument.
As luck would have it he left a few minutes ago and just now came in and wanted me to stop whatever I was doing and come help him, he's started to do something he should have done a year ago -- clear out some stuff he's just stacked on top of other stuff without putting anything away, but is complaining about feeling dizzy all the time. I've made a Dr. appt for next Monday -- and he'll tell her he feels fine.....as usual. I have to send her an e-mail earlier to tell her why we're coming in. This stuff does need to be done, but he keeps putting it off - never wants me to touch anything - and it never fails....when I get involved in something he decides he'll do this -- because I've been nagging for a year and now, when he starts, I have something else to do. Like I said, feeling sorry for myself. I've told him what isn't done by winter, I'm hiring done, even if it's calling one of those "Got Junk?" places.
Have a hair appt on Thursday and may just take an hour or so to go to the hardware store, LOL. That's the only place to go where we live without driving 20 miles into town.
Well, that lasted about 15 minutes, now he's back in saying he needs to rest and watch TV for awhile. I had just turned it off since he was in the barn. Of course, if I make any noise that interrupts his TV watching -- I can count on having an argument since I have to vacuum, with all these animals in the house I usually do twice a day -- and I had started steaming the hard floors - which doesn't make noise but bothers him :) As I said, nothing important, just feeling sorry for myself and missing a life I thought we'd have. I know I'd miss him terribly if something happened to him -- but would so enjoy a day or so to myself. I don't want to give up our property or horses, that is the only peace I get -- but sure would love to have a small condo or apt -- that allowed only one pet, LOL.
(((hugs))) oakridge. Go right ahead and vent. Your feelings are ones that most all of us have had or will some day. One of the worst times is when they don't want you out of their site. One thing about living in a MH I can't go out of his site except in the toilet area or outside. Sure enough if I go outside he shows up. But thankfully he does not whine and complain like you husband does, so my heart goes out with extra hugs.
Some where over the last few weeks I made the decision I will not be the forever caretaker......I can't..
Perhaps I'm selfish....or not self sacrificing enough or as I've said before perhaps when I was formed a gene was missed....one thing I can do is accept what is....and I can't go on for years living my life in the shadow of his...
I also have a lengthy list to get done before snow flies...hoping it's a late winter this year but know it is what it is...it use to come in September and by Halloween we had our permanent snow....but last 2 years permanent hasn't came till around thanksgivings...
We switch in being near each other and not....sometimes days go by and he sits in one of the shops all day....today he is "sorting" stuff....in reality he is picking stuff up and moving it.....other days we have to be glued at the hip...I'm not sure which is better or worse....
Our son blew up at him last weekend...he is 35 years old and I have not seen him raise his voice for close to 20 years.. Jim had changed tires on one of the 4x4s and put on two different sizes.....son had just driven it a week ago and mentioned he felt something like perhaps a rear brake dragging...Jim "adjusted" the brakes...apparently he adjusted them so there are no rear brakes now.....and that's when he changed tires.....and took the wipers off....not just the blades, the arms too...and the rear view mirror.......he didn't want someone to take them....
Anyway son said he drove it only about 200 feet but it could have torn it up... he was upset because he was afraid I would drive it and be hurt....I promised him I only drive my 2 cars and Jim never touches them.....
Jim handled it like a child, asking him if he was still mad at him and saying he was sorry for what he did to the car...... sometimes I wish he'd react to me that way...
When in the midst of a phase it is really difficult to see any hope or end to it. That phase where hb still could start mechanical projects was very frightening. And arguments ensued no matter which way I went. Sometimes had to stop him for his safety. That's.where I had difficulty with people saying they are like toddlers. Well a toddler you can just pick up and remove from harms way. A toddlers punch is not life threatening.
There was a fairly long period where he wouldn't let me fix things. Wasted some money, lost some landscaping. Gradually I tackled more problems, starting pretty small. It helped when the sprinkler timer broke completely and I found a local outfit to replace the circuit board. Once it sounded like a computer programming issue he didn't fight me on it any more. Same with pool equipment. He did some damage and things were way out of whack. The new equipment was computerized. Therefore in my baileywick.
As I gained confidence he was more willing to step aside. Even in the hardware store. He would tell the salesman to ask me what I needed. I was amazed when that happened. Salesmen these days are also more willing to help women.
Fixing sprinklers was a nighmare for a couple of years. He was the expert so had difficulty letting me do it. I sometimes was able to remain patient while he undid everything I did. I gradually put together organized work tool kits and work flow so I didn't have to turn my back only to find the hole I just dug filled back in. It really takes some creative thinking to get the repair done and make him feel like he helped. I was not always that patient though. There were some rip roaring arguments. Now he just stays inside watching tv. Sometimes he comes out to look at me... which is also annoying... but not as annoying as trying to "help". If I look at him he usually turns around and goes back inside.
I just realized he is no longer shadowing me. He is no longer starting such projects. He doesnt close the windows I just opened. He just waits for food to magically appear. When I turn on the tv, he says, "oh look, here it comes!" Magic.
This morning I suggested a.shower and he took off his clothes and took a shower! Say.what??
I had written an update to this, that surprisingly, it turned out to be a good day after such a lousy start.
Also wrote to Sedgly re an article I read online this afternoon. Then when I tried to find it again, I lost my post. But in essence, most of it was what we hear all the time, be kind, patient, look for the rainbow etc but it did have a final paragraph regarding intimacy. Not a right or wrong just that this is something we do face and every person must make the decision for themselves whether to find a sexual partner or not. I then went on to another article from that page about deciding how and/or if you will become a caretaker. I often do that, read an article then click on another one from that page, so hard to follow.
I don't know your situation, long term marriage or not, or how your marriage has been, nor what you've gone through so far. I wouldn't say you're selfish or non-caring -- this isn't a game we're playing. I do feel self-sacrificing to a degree, my life as I knew it is over and that's not going to change. We are older, been together a long time, outlived close friends and not much family left, so unless I put him in a home - which isn't an option unless he becomes violent - there is really no alternative.
You say you've made the decision, have you thought through the process? Have someone else do it? Move him to a home? Divorce? Although I'd never thought of it till someone, Paul? mentioned it last week, I guess it happens more than we realize. Sometimes financial but often because it's just more than a person can handle. If I had been younger, knowing I may be looking at decades of care, I don't know how I'd have handled it. I don't think anyone does till you are faced with that situation. I will say there have been a couple of times when I've had serious medical problems and he was a caregiver over a year for me -- not the same situation but most days I was in so much pain I was a real pain in the rear. Then after emergency surgery it was another year recovery when he had to do just about everything. So at times I feel guilty when I get so fed up with caring for him. We had a good marriage, ups and downs, but a good marriage. However, when I look at him now I see nothing of the man I married. None of the plans we had will ever happen, not even a drive to the river anymore. I feel trapped more often than not. But I loved this man, or the man he was, and it's hard to see this person as that man. We had a wonderful sex life and I miss it, I miss so much and it's easy to let that take over. Honestly, at times it does, then we have a day like today - where we were actually working together and I feel like I can hang in for the long run.
I don't want to intrude, or just be nosey, but am curious what drove you to that decision, and how you're going to go about it - if you care to share. I've read younger women state they simply didn't want to be a caregiver for the rest of their lives -- or some that have only been married a short time when AD set in and just wasn't what they bargained for. It's very easy for those not living this day to day existence to give advice. We might say it for a lot of things but this is really one of those that "you can't judge till you've walked a mile in our shoes". Blessings for whatever your decision is and the strength to stand up for what's right for you.
For me placing him as soon as possible - hopefully by winter - is my plan. I can't take this any longer - don't want to do this any longer.
I am realizing how alone I am. Some of my siblings did the ancestry DNA and got some surprises - more than any of us thought we would. Short of it: My aunt was correct that my mom was 'wild'! my oldest brother and sister had different fathers and it was not the man our mom was married to. My oldest sister's first son was not the child of her husband (she was pregnant when they got married so I assume he knew). My parents had five - three of us did the DNA testing and I am the only bio child of dad. Did not surprise me about my younger sister cause dad always said she was not his from the moment mom said she was pregnant because he got a vasectomy after mom got pregnant with me. My brother a year older and my brother 10 years younger have not taken one. I am assuming my younger brother is not my dad's either since my mom was seeing a guy every Thursday night and my brother's first name is the same as his. My older sister (6 years older) has not replied when I texted her about it assuming she knew. I hurt for her because her and dad were close. If anyone came back not a bio child I wanted it to be me because that would explain why he hated me so. So I am disappointed for me and my older sister.
This is when I realize I am alone - no one to talk to about this, no husband to talk with. I can't go see my younger sister because of hb. Yes, loneliness and depressing.
My morning time is about up, woke dh with the vacuum, actually thought I saw him get up so jumped right in. I guess he just got up to use the bathroom then went back to bed :) He's not a happy camper right now, hope the day improves.
In reading over these posts and our feelings about long term, I feel maybe this is what separates the men from the women. We have to learn to do the things they've always done, plus keep on doing the things we've always done. Those daily things that just magically happen. I did have to laugh at bvh and her husband getting excited over the tv coming on. if you ever figure out what you said that inspired him to go shower, hope you share it. Nothing I do or say will make my husband shower anymore. Says he washes, doesn't like our shower and other excuses. Gets angry if I wash his clothes, says they'll only get dirty again. The only time he cleans up is when we go to the doctor. Have an appt for him Monday morning so maybe I'll get lucky. I guess as much as anything this is a big problem for me, he's dirty and smells like old sweat. Won't get a haircut and won't shave till I get really mad. He was always so clean and well dressed back in the day I just can't get used to it. He's too strong for me to force him, and nagging brings on an argument that carries over to other things. You might not notice it if you just walked in, but live with him and it's a major problem. One of those little things that carry over into everything else. No idea of why, but I know this is a common thing with AD but I don't remember this being a problem with the men who post. Maybe I've just forgotten - or maybe it's not something they like to talk about.
Hope it's a good day for everyone, will be hot again and no rain so will have to get out and water good in a few minutes. Our winter was coldest on record and I swore if I ever got warm again I wouldn't complain about the heat :)
"He was always so clean and well dressed back in the day I just can't get used to it." It being not care about how they look or smell.
I think majority of us here have experienced or are experiencing that, including the men towards their wife. It amazes me the number of men that learn to do makeup and hair styling so their wife will look nice like she would do it.
Like yours, my husband always dressed nice and was clean - even when we went camping. The kids and I would get dirty and smell like campfire -isn't that what camping is all about? - but he tried to keep clean. Since grade school he wore a white shirt and tie to school. In all his jobs he wore a shirt and tie. Last year I finally got rid of most all his dress shirts and ties - don't think he noticed. He now wears polo shirts and jeans which I could never get him to wear before.
Since I've been doing most of the outside maintenance for years ( hubby fell and needed a hip replacement in 2008) I never thought much about the chores. I just kept adding them to the list. My only issue was he couldn't be on his own, so I would have to stop what I was doing and come in to make sure he was okay. When he went into a NH in 2015, I felt I bwas in heaven. Still had the chores to do, but I could do them on my time, including mowing the lawn which generally took me three hours.
Oakridge, it must be the day for it...I wrote a lengthy reply but it vanished.....
So, I will write it in bits.......
You asked about our story..... we met in the 70s, lived together and had a daughter ..(which was almost unheard of then) married in 1980 and had 4 more children....we were a couple..always made sure we had babysitters and us time......people always mentioned that every place we went we held hands....we talked about everything....we were best friends.....hard to condense 40 years to just a few sentences....I loved him....and if he were still here I'd love him still...
As to age.....I'm younger than some....and older than some....I think I'd feel the same no matter my age....Today I'm in my 50s.........tomorrow is my birthday...I will be 60......30, 40, 50 those didn't bother me but 60 leaves me thinking how the hell did this happen.....
Oakridge, personal hygiene has been a gradual process with my hb. For a long time he wouldn't bathe. It was disgusting. Here in CA it is so dry mostly that we don't have the odors very much. I had to use shampoo to clean his pillow cases and shirt collars. Actually that was a.trick my friend taught me for his uniform white shirt collars. In the summer he went in the pool and thought that was enough.
I guess I started getting him to take a.shower when we went shopping. I said we were going "out amongst 'em" and had to make sure he didn't stink. Sometimes he would laugh at me and I would just use a broken record technique saying I needed to wash his clothes. Didn't always work, but sometimes.
Then I had to cut his toenails. He was ripping them off with his hands. I couldn't believe it. Some torturers do that for crying out loud. I talked him into letting me do that when he had a bloody mess one day. Then I discovered problems between his toes. It took awhile to get that under control and I talked him into a shower more often and cut his toenails when I did mine.
He stopped shaving and was complaining about the whiskers and about the razor beng a piece of crap throwing things around. I waited til he stopped ranting and then said let me help you. We got a cordless one and that worked for awhile. Then for awhile I was using the beard trimmer on that every few days to get it somewhat close. He was able to put shaving cream on and use the razor like he used to with some tips from me. It took awhile for me to learn when to change the blades. Now I am using the cordless to shave him in the morning. It works better to do that every day. But some days I don't feel like it or he is not cooperative and I skip it. Then use the beard trimmer again.
It helps to use a technique my hospice nurse friend taught me. Always start with complete confidence in yourself and go in with the mindset of I am your favorite person and, of course you are going to do ..... fill in the blank. If it doesn't work, leave and come back say in 15 min and try again.
-2 When we have appointments I try to get him clean the day or night prior. Sometimes I can wash his hair after dinner, but he is generally more confused in the evening.
When I figured out he was not able to wash his hair in the shower I started talking him through the shower process. As in using soap! And shampoo. Of course he didnt like that. I just kept trying and handing him things and keeping my voice calm and talking about helping him. He eventually got used to me being there. I found a tray online for washing his hair at the kitchen sink where I had a sprayer. He likes that. Lots of individual attention. He has a hump in his back that makes it difficult to lean back though. Now I am going to make a.vinyl cape thing to wrap around his neck better and funnel the water to the sink. I have some heavy, stiff vinyl from a pool table cover I made.
I recently got a hand held attachment for the shower, but it didn't help with hair washing.
For a long time I just didn't care much. I made him shower when I couldn't atand the smell. Then when we started day care they called me when he was behaving badly one day and they said he also has body odor issues. They said he was wearing the same shirt as the previous day. That made me crack up. Normally he wore the same shirt for a month or so. I didn't even think about trying to get him to change his shirt every day!. They also said perhaps he forgot to put on deodorant. ROFLOL. He forgot how to use that years ago!
When I first started helping him shave I kept talking about how it was much more difficult bid that he is older. His skin is different and he cant really get the right angle to pull it taut. I would keep chattering about what I was doing. Especially just under his nose. I'd say I bet this feels really weird and chuckle a bit. That kept him relaxed.
I also figured out that just laying out clothes and telling him to change didn't work. I don't remember the sequence for that. Now I break it down into very small steps. Please take off your shoes. Take off the pants or jeans. Sometimes I have to touch the pants and say take these off please. I still can't believe he just accepted the depends as underwear. He doesnt really like them, but he puts them on. Same thing in reverse. I hand him one thing at a time. Sometimes he tried to put socks on over the shoes. So now I hand one sock at a time and make sure they go on different feet.
It s amazing how many steps there are in what you once thought of as "change your clothes"
-3 What I just wrote sound fairly easy. Far from it. Asking him to take a shower was frequently a life threatening activity. Literally. And the bathroom is a very dangerous place for a 6' tall 200 lb person to have a temper tantrum.
For years I resisted medication thinking somehow I could find a way of relating that would not lead to violence. He never was willing to take meds and I knew something about the meds they would use and their side effects. It didn't seem fair. Also, he would frequently refuse to take meds and throw them at me instead. With aricept that didn't matter. No big deal if he missed a dose. No big deal if he never took it. No skin off my nose.
But this March and April for some reason he kept trying to attack me. He was even searching for me when I worked outside and yelling at me and threatening me when I hadn't even said anything to him for hours. The day care place and his doctor were going to call adult pritective services for me. I imagine then they would have forced me to place him. I had just made an appointment with the VA geriatric clinic. When I described the violence to the psychologist she got me a referral to a geriatric psychiatrist right away.
Since May he has been on Depakote (generic). I feel safe. Sometimes he gets angry but he throws clothes around. Doesn't come after me. Day care says he is participating more and is more redirectable. I still am very vigilant about not getting cornered and not turning my back, but things are much better.
Several times now, he agreed to take a shower with only one suggestion. Perhaps cause it is warm now.
So my suggestion is to find a geriatric psychiatrist and ask for medication earlier than you think you should.
-4 Of course most of this depends on what stage he is at. Also, my hb has Alzheimers type. I am told that they can become used to new things as they are repeated. If they have FTD, (I think it is) they cannot become used to things. I can't imagine how to deal with that. More medication I bet.
bonnie, my husband wears the same shirt and pants all week. He only changes the pants on shower day if I grab them before he gets up to put in the dirty clothes. He is starting to change shirts or wearing the one he wore for days to bed - or just grab a clean one, fold the dirty one up to put back with the clean clothes. But, he has not used deodorant for years no does he smell unless he has underwear on with some poop on them because either he didn't wipe good or a little poop came out with a fart.
I love reading the process you have used on your husband to get things accomplished.
Sedgly - if you are going to write long, do it in another program like Word, Notepad or even an email (just don't put an 'to' address on it), then copy and paste here.
Oakridge, I don't think you're being nosey... we all have such different needs and lives... what's right for one is wrong for someone else...and hearing others thoughts sometimes gives me pause to think......Have I thought it through?? Of course I have... have I considered divorce? I did. I talked to the SW and asked what would happen to him if I left...I couldn't just leave him uncared for....
I took care of his Mom who had vascular dementia... when the time came I put her in the best assisted living place here...and when the time came I moved her to a medical facility .....I wasn't there every day...she was an hour away... and some months I made that drive every day and some times twice a day...I did every doctor appointment.. I took care of everything...but I never bathed her....and never changed a diaper....... when the time came I held her as she took her last breath...
Jim Isn't ready for assisted yet....but when he is I will let the professionals care for him...and I will feel no guilt........
I don't think I was "driven" to make the decision.... I think it kind of just came subconsciously......
Yes, I want a sexual partner....but so much more than that... I think one of the things I miss the most is someone to laugh with.....to share with.....to share ALL of life with......Someone to hold me....Someone to hold....Someone to cry with.... Someone to understand..........a partner.........
Jim doesn't miss or need those things...he is fighting the world and everyone in it...including me....he thinks the world is out to get him......I don't believe he loves me on any level.....
Someone asked me if we had ever talked about what we would want for the other if one of us died.....
I was very ill a few years ago...wasn't sure I would make it.....( I'm 100% now :-)) .... btw he was not a good caretaker at all.... in retrospect his brain was probably already fractured and we just didn't know it.....anyway , I asked him if I died if he would remarry....with no hesitation he said yes.....but when he died he thought he would spend eternity with me as he thought we were soul mates........ it hurt when he said that.....I don't think I would have expected him to go on alone....but the thought of him with someone else was soul crushing.......
I never asked what he would wish for me if he should unexpectedly pass.......of course whatever he would say now wouldn't be him saying it...
This ----- We had a good marriage. However, when I look at him now I see nothing of the man I married. None of the plans we had will ever happen. I feel trapped more often than not. But I loved this man, or the man he was, and it's hard to see this person as that man. We had a wonderful sex life and I miss it, I miss so much and it's easy to let that take over.
I could have written myself.........
I know it's a one way road we are traveling.....guess I've just made up my mind I'm not going to sacrifice myself for someone who isn't here....
Charlotte,thanks for the info on copy and pasting....ill have to remember that.....funny what we are all finding out about who is really related and who's not... my brother s wife discovered she was not her father's daughter when she was in her 40s... went on to find her biological father and had a great relationship with him...
The clothes thing....ugh.... it was in the 90s here again today....you will find Jim wearing winter long johns and at least 3 pairs of socks....
And clean clothes....ha...he thinks that means to put a clean shirt on over the dirty one...many, many days he wears two shirts........wherever we go he carries his winter coat....and walking stick...because you never know.....
bhv - you mentioned your husband has a hump in his back. Is that since he's had AD? Just wondering if AD brought that on. When my husband started to decline quickly last year, he started to walk hunched over & now it's so much worse. He has a big hump along his back - in fact he's almost bent in half. When he walks with me, our heads are the same height - he was 5'11" & I'm 5' - so you can imagine how slumped over he is. Before AD, my husband always walked tall & straight.
Thank all of you for sharing here. Different things work for different people and I've found, as most of you have, what works today might not work tomorrow.
I appreciate your sharing your feelings - I won't go over them again, but agree with just about every word said.
I think this type of conversation helps me the most, feeling sorry for myself is just one more feeling to deal with. I wish it wasn't so, I wish we didn't have to deal with this, but then I wish I was 20 years younger and 20lbs lighter :) It's important to know about the legal obstacles, lawyers, ALF etc -- but the personal input is what helps me feel I'm doing the best I can and hope it's enough. The day to day, never ending process of caregiving is overwhelming. I'm older than you, will be 76 in a few months -- so there really isn't much I could do if I was free today. BUT -- even though we got older we were still going strong and had so many plans, never really felt old. I think he actually felt the change before I did, would say we were too old to do this or that. I've aged quite a bit in the last couple of years. This place we bought and the medical problem with my spine have been a hard cross to bear.
I decided to go tomorrow morning to have my nails done, then a little shopping and have an appt in the afternoon to have my hair done & brows waxed, all those little things that I used to do automatically. Funny how he sees me neglecting these things, and complains about it, where he doesn't recognize it in him. I just decided i'd be happier having these things done again, and if I'm happier, maybe he will be too.
He isn't at the point of needing to be placed, although an ALF might be good for him, but I couldn't handle it. They say he is in-between stages, guess that's normal? Some part of him is still mild, others more advanced, someplace around stage 5 if those really mean anything. He still says he has just a little memory loss....and does all sorts of things to avoid coming face to face with what he can't do anymore. He doesn't know tools anymore, has forgotten how to do little things around the house -- but he can't admit it -- maybe he doesn't even realize it. I know it was at least 10 years ago that I became aware of his problems with thought process, something as simple as turning off the highway to go to town was often impossible for him to follow through without help. Even our kids who were visiting that summer commented on it. Hard to put it into words but most of you have also had that same experience.
Last fall we saw the neurophysiologist, referred by his doctor -- he went one time, and when the doctor mentioned AD he refused to go back again - and I never mention it to him. What difference does it make? Different label won't change things. He is taking some medication - although I don't know how you ever tell if it's working or not. Some days we can handle pretty well, then the next day, it's an every 5 minute downhill process. I try to keep the arguments down as much as I can. Well, think I'm rambling, :) Happy, Happy Birthday Sedgly! You still have lots of years to live and I think you have every right to do what is best for you. Stop by in the morning for coffee and I'll put a candle on some cookies I made yesterday :)
You can tell if the AD drugs are working by: stopping it and within a few days to a week you will see a drop in cognitive function. If you see the change start the drug back up. For a time we had a geriatric doctor that would come and answer question or share his experience with dementia patients. That is how he dealt with people who wanted to know if the drug was helping. If there is no change, then it was not. When I took my husband off galantamine after 6 years there was no change.
Happy birthday Sedgely. My hb just turned 75 the other day. I made his favorite angel food cake and this year added blueberry pie filling and whipped topping. Thought it would be sickenly sweet, but it is fabulous. I told him how grateful I was to his mother for giving me the angel food pan and teaching me to do the glaze. (I am not a baker) He got all excited and said "She was here?"
I think you are right on in your thinking about relationships. Several people here have found partners while their person was in memory care. They found partners who were totally supportive of their commitment to care for their person. Definitely it can work very well. Especially if you are one who misses a.sexual relationship I think.
Several years ago a woman in our neighborhood ladies group lost her husband in a plane crash. She started dating not too long after. She is 80. At one of our pot luck lunches we talked about whether we would search out another partner. It was pretty much evenly split. Half would want a partner and half (like me) said "been there done that!"
Charlotte, I forgot he used to put dirty clothes back in closet. It has been a very long time since he had any idea how to find clothes and doesn't change them on his own. He sleeps in his clothes. sometimes refuses to take off his shoes. One time had two socks on one foot and none on the other. He needs a.belt to keep the jeans up. No butt. Slumps in his chair I think because the belt is tight around his not so big gut. Won't change to elastic waist sweats or shorts any more.
I just finished putting elastic laces in the last pair of shoes. He hated the first try but after a.few.days he would choose the elastic ones rather than the ones to tie. He had on the new ones with regular laces the other day and couldn't figure out how to get them off. So I put elastic laces in those too.
The hump in his.back has always been there as far as I know. When standing it is not noticeable. I really noticed it when he had the prostate surgery. Lying flat, his head did not come close to resting on the pillow.
I wrote so much detail because I am still ever so grateful to elizabeth for "getting extremely graphic" to help me figure out how to help him in the bathroom with the depends.
I discontinued Aricept thinking it was causing diarrhea. No change with or without it cognitively. Not related to diarrhea so started it back up to finish the supply. Psychiatrist said to continue it. But I don't know if I want to bother refilling it. Will talk to her again in August.
Recently when I touch "Add your comments" I get a.red message saying there was a problem. I touched "add your comments" again and it worked. So don't give up too quickly. Sometimes I think I was able to select the text and copy it from that problem page and then try again. Not sure if I remember that correctly.
that read usually means you have timed out. I get it often especially if I write a long post or get distracted so take to long. Another option I might do if I worry about loosing something, before I hit 'add comments' I will highlight my whole text, right click to copy, then try to post. That way if I should loose it, I still have it by just doing right click paste or you can use ctrl C or V
Ladies, I had my first day out and it was so worth it. Didn't get started as soon as I'd hoped, but was able to have my nails done - a real pleasure for me. Found some new bras, which was a blessing. I lost weight early this year and my old ones don't fit but am hard to fit and never had the time to try things on. Took awhile and two salesgirls but we finally found two that fit and were comfortable, the last two in my size in the store I think. For some reason most of the new bras are pushup, not something I was interested in.
Stores were very crowded, traffic was terrible and it was hot but I hung in there. Stopped and picked up a few things at Walmart then had to push to make it to my hair appt on time. Was out of breath by the time I walked in :) Nice young lady, did an OK job for first time and was less than expected. Just about 5 miles from me so easy to get to in the future. She did a conditioner with a hot towel, I almost went to sleep :) Went to a walk in nail place on the way to town - nice, clean and didn't have to talk to anyone, just sit in the massage chair and relax. Was cheaper than I expected and would gladly pay the man who did the pedicure every week for a foot massage like that.
Didn't get as much done as I'd hoped, but turned my phone off when I was in the stores and that alone was nice. Dh didn't call once which was unusual, and I didn't call home. He told me he thought he'd shower, shave and put clean clothes on while I was gone -- well, he shaved :) Better than nothing. Think he slept the rest of the time, I know he gets lonely when I'm gone but I have to learn to just do it sometimes. It's impossible to do anything when he's with me, so we end up at Walmart and SAMs then he wants to come home.
Not something I'd do every week, but made such a difference in how I feel tonight. Felt wonderful to have my hair and nails done and see all the new stores that have come in since I was shopping. I still have a gift certificate from Mother's Day which I didn't spend yet, so that will be my next day out. I actually felt like a woman again, rather than a caregiver. I think people looked at me differently...maybe because I felt so good about being out alone.
Not sure how others handle it, would be nice to have a day at home alone, but that won't happen. The neighbor on the hill came down tonight and brought some fresh veggies from her garden. Appreciated it since I've not had the time to take care of mine and with the heat and no rain, there isn't much left but tomatoes and peppers.
Sedgly, I hope you were able to enjoy your 60th birthday. I didn't mind 60 - nor even 70 but 75 hit hard. How could I possibly be that old??? When we were active, age didn't matter, but the last few years have made a difference. Like you, I would love to have someone to share with, talk to about the day. I tried to talk to dh about something I'd heard on the radio coming home, but he wasn't interested. Oh - I've mentioned how I'm going crazy with the constant TV noise -- couldn't seem to find a solution that worked for both of us and didn't want to spend $300, so ordered some new ear plugs. Similar to the old rubber ones but supposed to be different. Not expensive, and had great reviews. Since our house is basically one room, there is no place but the bathroom that I can get away from the noise. Not sure how I'll feel tomorrow, but tonight it sure feels good :)
Oh, Charlotte, we see the doctor on Monday to review the past 3 months on Aricept. I think I might be afraid to stop it and see him get worse :) It seems each time he does, it goes downhill faster.
Good for you Oakridge - glad to hear you had such a good day. My husband also didn't like to be left alone & then eventually couldn't be left alone, so I had someone from the Alzheimer Society come in for 3 hours in the afternoon. It started with 1 afternoon a week, then I increased it to 2 afternoons. That free time alone was great. We all need that break. Now, he's in long term care, so I have my free time, but I'm very lonely. But, caring for him at home was much more difficult than adjusting to life alone. Either way, is not easy.
Perhaps, you can send him to day activities, to give you a break. Mine went once & never wanted to go back, but some of the others here have been successful doing that.
Thank you Nicky, he isn't comfortable with anyone but me, and hates to have anyone else in the house -- has always been that way. I'm afraid I'd have to hogtie him to get him to attend a day activity, never could even get him to go over to the senior citizen center and play pinochle (sp) which he loved. I think as he became more aware of the fact he was slipping, I could always cover for him - but alone, his problem would be obvious.
And you know, he always has been a strange guy, LOL. Hated to go to a party, yet was the last to leave. Always wanted to go someplace, made plans, then would cancel out at the last minute. Drove me crazy when we were younger. Only explanation I could ever think of was he had a very dysfunctional childhood, alcoholic Father, bitter Mother who didn't show affection and he and his sister were never allowed to have friends over nor could they take part in school activities, she was never allowed to date - and ended up never marrying. Basically they never really learned to socialize with others like most kids do.
I've been reading more about AD, how they think it begins and how it travels through different parts of the brain - which results in the ever changing behavior. Helps me understand better. Oddly enough, both my Mother and older sister had AD, began fairly early and they both lived 11 years after diagnosis. I always worried about it, but so far have no indications, and I'm older now than they were when they died. My youngest sister died suddenly at 63, with a massive stroke. I feel the loss of my Mother and sisters like I do my husband. There is no one left who shares memories - a lonely feeling.
I think together (the group) we are learning to deal with whatever comes, and there are some things it would be impossible to discuss with a neighbor or even a doctor.
Oakridge, you're right about not being able to discuss everything with a neighbor. Until you live it, it's difficult to imagine we could feel such negative emotions towards the person we love. Difficult for someone else to understand. However, I do have 2 neighbors I've grown close to & I shared with them the things I was going through with my husband. So, they knew all the difficult "stuff" that happened & they were sympathetic & understanding - I also knew they did not want to be in my shoes. So, I was able to share a bit more of my negative feelings with them, but not all of them. Now, that my husband is in long term care & I'm not a caregiver, I no longer have those negative feelings towards him. I'm dealing with a new set of feelings as I adjust to my life alone.
My husband also did not like having a stranger in the house, but I needed to go out. So I would tell him I had a dr app't & I needed to go. He understood that. Then I'd remind him how he hated being alone & that someone spending time with him was better than being alone. He still didn't like it, but reluctantly accepted it. It took me a while before I had someone come in, because I was waiting for him to be OK with it. My daughter told me many times that her dad would never be OK with someone coming in & I just had to do it, whether he liked it or not. She pointed out it was not about him but about me. Hopefully, you'll find some solution.
"I feel maybe this is what separates the men from the women. We have to learn to do the things they've always done, plus keep on doing the things we've always done."
Why is this any different for men than women. I've had to learn the things my wife did and still do what I have been doing. As did my FIL when my MIL became terminally ill. It was a bigger change for him since he had never cooked. He has also taken up preparing the reserves and jellies.
Oakridge as Nicky has said you’ll find a solution, you need to for your sake. NOw my wife would not have anybody coming in said she would go out the other door if somebody came in here. Taking her to daycare well 2 hours a week just enough time to do nothing but being alone was great. Would be a fight to get her there then when she got home all hell would break loose so it really wasen’t worth it spent more time being upset trying to get her there and then dealing with her anger when she got back.
Heath authority would send somebody in but they could not quarantine the same person so that would not work. I found a lady in our neighbourhood she was an RN and would come in to be with her to give me a break. So we arranged to meet accidentally when out for a walk, we had met he before, she then suggested hey why don’t we do something together sometime. That was the oppportunity. She then would spend a couple of hours a week with her. As time went on it turned into her staying overnight about once a month giving me two days I would go to our cabin and just recharge. After a few months however this become too much she was getting burned out doing this and still working. Said it would take her a day to recover from having to spend full time with my wife. Shortly after I realized for my own wellbeing I had to place her. She has been in care now for 2 years. So Oakridge sometimes we have to do what we can even deception to get a break to save ourselves.
Oakridge - I forgot to mention that I had to fabricate a story for him to accept a worker coming in. He was going to the Memory Clinic on a regular basis, so I told him that someone was coming in because it was part of a program at the Clinic - that he had no choice & it certainly "wasn't my fault" if that's what the Clinic wanted. At least, he wasn't angry at me about that.
Paulc, you are right. It is the same whether the care giver is man or woman. I think there is a.dramatic cultural shift that has been going on for several generations. Men are more likely now to step up. Not that there weren't men in previous generations who definitely stepped up. But the percentages have changed. For the better.
When my grandmother broke her hip and refused to learn to walk again, my grandfather had no idea what to do. My parents modified our house and took them both in. My Mom did all the caregiving for my father's parents, although the visiting nurses did an awful lot.
When my Mother in law quit cooking, my father in law just started taking care of things. However, when they showed up at our house with dark circles under their eyes we asked what was wrong. Turns out FIL only liked meat and potatoes. So my husband taught him how to shop and plan meals and cook simple things. Their health turned around immediately. We helped him clean the house. But he was quite adept at handling the laundry, even when she was incontinent. We helped a lot. But now I see there was a lot more we could have done. He didn't know how to ask or tell us about it.
When I was a teenager it was always a crap shoot when I had to get my car fixed or any other repair because men would generally take advantage. Yes I said generally. That was my experience anyhow. Back then there was no such thing as sexual.harrassment and rape was a property crime. Now, when I go to the hardware store, even with my husband there, the guys are very willing to help me find the part I need and give me tips on doing the repair myself. I still am shocked every time. Because back in the late 70s when I was working on my car, covered in grease, and had to exchange a part, a friend in business suit took me to the store. Three guys in the store asked him what he needed. Even though there I stood covered in grease holding the wrong size gasket in my hand!
Oh, I know that well Bonnie. When I would take the car in to Les Schwab to have tire pressure checked, I would often have to wait an hour or more. My husband would take it in and they got right to it. I started making a scene complaining and drove away. Now I go in with authority and they get right to it. That is just one example, but there are many. I can walk around and around the hardware store and never be asked if I need help. When my husband is with me, it doesn't take long even though he tells them to ask me since he has no idea.
I think the hardest for guys would be if they had a wife that wore makeup, did their hair up, wore dress and nylons (none of which I do). Sorry Marsh if you read this, but I still smile when I think about when he asked us how to get pantyhose on his wife and we all said - don't, put nylon knee highs on her. Other men have talked about doing their wife's makeup. I have to give them blue ribbons because I would have no idea how to do makeup since I never wore any.
Oakridge, when my husband could no longer be left alone I told him someone was coming to help me clean. The first week she actually helped me clean windows. The second time I went out for a short errand and after that, no problem. She did do some light cleaning and most of his laundry. A few months later I added a second person another day in the week. Both usually stayed 3 hours on the day they were there. Occasionally they would stay an extra hour or two so I could actually go to lunch. That was heaven!
Thanks for the birthday wishes. It was a good day. I drove out through the countryside and then my son brought me some buffalo ravioli....it was cool and rainy all day... (I love rainy days)
Funny how the male/female roles have changed. My Dad never cooked a meal in his life. He never grilled and now that I think about it I don't think the man ever even made a sandwich...
But my son's/son in laws carry half or more of everything. They are all great cooks but also take care of the kids, do laundry and housework etc... the times they have changed... they would all be just as accomplished as any female counterpart at caregiving.
I run into the stigmas dealing with cars both ways.... just a few weeks ago I stopped to have oil changed as I just didn't have time for it... when I told the guy I wanted 0w-20 synthetic he attempted to argue with me.....he'd couldn't believe it..he'd never heard of that etc.etc....in the end it was...huh,,I guess you're right.....
On the other hand today I called AutoZone to order a part and got this female that works there... and didn't order anything till after I hung up and called back and talked to one of the guys because frankly she doesn't have a clue what she's talking about.... if she were a male that was that ignorant I'd have done the same thing...lol..
The place that gets me is the pharmacy...for some reason men are waited on instantly and females made to wait.... my son's pick up Jim's scripts that aren't mailed for this very reason...
Oakridge it made me happy to read of your day out. how fun to be pampered a bit.. I don't recall the last time I had a day alone...
I know I need to start forcing it and have someone come in ... I just haven't....was going to talk with a good friend about doing it as Jim has known him for years and would probably not even realize I was gone.....you are lucky you can still leave him home alone...
Yes, I'm becoming more aware that the ability to leave him alone for a few hours is a definite plus for me. I think he may eat something but regardless what he tells me he is going to do, he generally watches tv and falls asleep. We did go through some times a few years ago where he would set things on the stove then turn it on. A few small fires and lots of scares but he doesn't do that anymore. I always leave food for him, he loves leftovers so I'm lucky :) he really owes the do much of anything anymore but watch tv.
This is the first time I've ever turned my phone off when I'm not here....not really off, just do not disturb and if the same person calls twice, it will ring through. Although he was never too good with a cell phone he can still call me, usually when I call he can't open it so will have to call me back. Our granddaughter is a detective with the sheriffs dept. she set something up so if a 911 call comes if from our number she is automatically notified. I don't know if there are similar services out there but it makes me feel safer.
PaulC, I didn't mean to offend any of our men :) the ones I know have generally had some help from a daughter or other relative for some of the things. Don't know any who learned to do hair and makeup although that's not to say they couldn't. Off topic- when my best friend died several years ago, the women in the church kept her husband fed etc, and he hired someone to help around the house. But before a year had passed he called one day and asked what I thought if he got married again. He was 72 at the time. He said he hated to change the bed, could do a lot but just hated that task. I've always laughed that he got remarried so he wouldn't have to change the sheets. Of course, I'm sure that wasn't the only reason :) He just died last month and his wife is still living in the home, although he did set it all up in a trust for his kids before he got married..
Im really tired tonight, as nice as yesterday was I had double things to catch up on today. Still no rain and record heat so lots to do. Want to get a small fence put up around our front so we can turn the horses loose to graze. Had hoped to pick up supplies yesterday but ran out of time. Hoping we can do it ourselves so don't have to pay to have it done.
You know, as I read all of your stories, I realize we've passed through several stages this year. Still deal with hygiene, memory loss and the usual day to day problems but he is never violent. Earlier this year he would explode and since he is a big man and much stronger than I am, the doctor told me I might have to place him somewhere..but I've noticed recently when he gets mad about something, it's not too long till he's forgotten all about it. In fact, I'm usually the one still irritated, lol.
I suspect that when men are in a caregiving role they are more likely to get help because, well, all women know that men can't do anything. That never happened in my experience (either in my case nor when my mother died when I was 16), but I suspect the odds used to favor the men in that way. Though my father was a much better cook than my mother, she was much better with money than him.
In order to get my wife to accept a paid caregiver it involved the police, lawyers, a judge and a parole office. Having a caregiver was court ordered, though we didn't have to hire the first person (finally found the right person with the 7th person but that is another story). I do not recommend this path, it is very expensive and will cause hair to turn grey. But when your spouse is with it enough that you can't fool them, it works.
My hb was a better cook than I am. Since he was.a.pilot and gone a lot, when he was home he did the shopping and cooking. He was known to do laundry and when we shopped for a.vacuum cleaner it was an appliance we both used. We were complimentary with money matters. As an engineer I could get bogged down in details. He was more of a big picture guy. Worked very well as a.partnership. I miss that a lot. Also miss his cooking.
Paulc, forgive me if you've already told the story and I missed it. What was it that incurred so much legal intervention? I can't think of what could happen to result in that.
My husband wouldn't win any awards for cooking or housekeeping but he knows enough that he wouldn't starve :) Probably eat the same thing every day and forget what the vacuum was but it wouldn't bother him.
Even now, with all the problems, I'm glad he's here. Have always known he'd give his life to save mine, and would go down fighting. There has been so much increase in violence here, breaking into homes etc. We live in the country with no close neighbors & a dozen or more ways to gain entry to our home without much trouble. He was on the Police Department during the years he was going to school, and still locks the place up tight every night, wouldn't do much good, but I still feel safer knowing he's here. It's really a pretty safe area overall. Not sure what brought all that up, think it was bhv mentioning missing their partnership.
You know, he can't remember anything but every night, he checks the doors and windows before coming to bed. Must be ingrained in his subconscious someplace :)
Saw in the AARP mag today all the new tests, procedures etc to conquer AD. Doubt I'll live to see much improvement with treatment though. Years ago my horse threw me and I had a major brain injury. Took a year to recover, but I always said it was a fascinating process to go through the recovery....if you didn't have to live it :) The doctors don't know a lot about the brain, so could only help me along the way. My point is, things changed so much for me over that year...but I can still remember becoming aware of things as my memory returned....such that it was..but not remembering how to turn the computer on, nor how to operate my sewing machine. Could remember where everything was in the house we'd lived before, but nothing about the house we were living in then. Doctor told me what I didn't recover in a year, I never would. Made a change in our lives...similar to AD I think. Completely off topic, my youngest DIL is the worst cook ever, but for some reason I went through a couple of weeks where I craved her potato soup - which surprised everyone, including her.
Our son and I were sorting which of his books to keep, put in the attic or donate. She wanted to be involved which didn’t want. Even after we agreed she could participate she was agitated and physically attacked me. Our son call 911.
Lead office had been at house in past week due to another 911 call from our son (she was pacing back and forth cursing me, I wasn’t home). We were separated and officer was trying to get social worker on phone, we had 4 offices in the house. Wife marches into kitchen, where I was, because she HAD to have iced tea. Officer blocked her way, she slapped him. Cuffs went on.
So we have spousal abuse misdemeanor and felony assault on an officer. Lead officer wants to take her to hospital, she will not agree. Finally hear from social worker, I explain that this is neurological so she needs to be in neurological dept and not psych ward, big mistake since SW will not approve hospitalization. So off to pokey.
SIL comes from an hour away to pick up our son for 2 days. I go to the jail. We have a mandatory 3 day separation in our state on accusations of spousal abuse. Magistrate and office find loophole so she can come home with me, I make is clear that she cannot be on her own and no family or friends to stay with. Magistrate and officer risked their careers to let her come home.
So my lawyer represents my wife and we need a 2nd lawyer to represent me to avoid conflict of interest. Gears of law move slowly. $7,000 later we have our plea earl (around $2,000 was paying 2 lawyers to sit in court because prosecutor was running 7 hours behind).
Plea deal was having caregiver at home, meetin with parole officer (nice guy and helpful), and clearing of her record after 2 years.
PS. My wife enjoyed her hours in jail waiting for processing. Had a good time with women arrested for prostitution and public drunkenness. I expected her to be fuming when I picked her up, she was in an excellent mood.
Paulc .......... I've been following your sad story and it reminds me so much of my own. ................. So I thought I would share this with you.
THE DIVORCE STAGE
At this stage, She was continent, but I would have to encourage her and help her find the bathroom. Help her with her shower. Help her feed herself, etc. I had to dress her but she could still apply make-up and comb her hair. Sometimes she would not recognize me as her husband.
During this stage, Helen would often try to get away and hide from me. She would hide in seldom used rooms and try to lock the door so I couldn’t get in. She would also try to lock me out of the house. She would sometimes get out of the house and hide in the garage, or the pool dressing room or a storage building or anywhere she could find that was out of site from me. If she was gone for five minutes I would go looking for her. After locating her, I tried just waiting to see if she would come back on her own, but she never did. She would hide for hours. So I would take her little dog with me and together we would go coax her back into the house. She was always very fond of Ozzy and he was a big help. I learned to handle this fairly well, but the worst was yet to come.
She would spend some time in the bathroom, putting on makeup and combing her hair and walk by me with her purse in hand and tell me, “I’m going out to get a divorce. Don’t try to stop me.” I tried numerous ways to stop her to no avail. She would walk out onto the sidewalk and up the street. So the best that I could do, was wait until she was out of site, then take Ozzy with me and follow her in my little Honda, Keeping her in site but parking far enough away so that she would not notice me. She always walked slowly and would stop and talk to people who were in their yards or out walking, and sometimes stop and go through her purse.
She pulled this stunt about a dozen times and about half the times she would find her way home after a couple of hours and when she was almost home, I would go home ahead of her, and as she headed in from the sidewalk I would let Ozzy out so he could go greet her. At home again, she would forget all about the divorce and it was just as if she had been out for a little walk.
Now…..for the times that she did not find her way home……After a couple of hours she would appear to be lost and as she would get further away, she would stop and just stand on the sidewalk looking hopeless and confused……Then I would park my little Honda along side of her and get out and talk to her. She would seem to not know who I was and continue walking. But with Ozzy’s help, and a half hour of intense coaxing, we would get her into the little Honda.
I think some of the people in the neighborhood where she walked knew what was going on but once, I had to explain it to a friendly lady who came out of her house to see if she could be of help.
For Ozzy and me, it was just another stage in the sad dementia journey.
This is all so frightening. Society thinks it is just fine to leave us unprotected, with no training, with a spouse who is capable of serious emotional and physical abuse. They are more than willing to arrest us if we don't provide the level of care.they expect, even if the spouse is physically capable.of refusing that care because it is the disease after all.and not their fault. But when Paul's.wife slaps.the officer they charge her with a felony???
When I told my retired LAPD brother in law about my hb punching me several times the night I made the mistake of letting myself get cornered, he said if I had called the police they may have arrested both of us since we both had a couple beers. Wasn't that helpful?
Then, this spring, when the day care people and his doctor were going to contact adult protective services I got them to wait and see what happened if I got him seen by a neuro psychiatrist. Thank goodness the medication worked quickly. I know I should have searched out medication way earlier than that, but no one had explained that there were geriatric psychiatrists with a variety of meds to try.
I asked his doctor for help with the aggressive behavior. He said although my hb was threatening he didn't think he would actually do anything to hurt me. (He was remembering the pilot who.used to love me.) I made the mistake of saying 'What makes you think that? He certainly will follow through.' That's when he said he is a mandatory reporter, but would give a.prescription and if I didn't call within a certain amount of time, he'd call APS. Even though my father worked in Adult Protective Services and had studied Gerontology and I think I knew how he would have tried to help, I didn't have any confidence that today's CA APS would actually help us. Still don't know since the medication changed everything.
But, as things get worse, and hb remains 6' tall and physically still pretty strong, I am increasingly worried about liability issues. I see risk at every turn and don't know how to defend against those risks. And asking for outside help seems to be exposing me to even more liability risk. I guess I have done what I can. I have kept notes Paul has shared about finding care and various medications and dosages that may help as time goes by. Giid god, what would we do without each other?
The officer knew there was a mental health issue and wanted hospitalization but was overruled. And the law is very strict in certain areas, giving officers very few options about certain charges. For example, spousal abuse used to be ignored (and probably still is) and too often spouses would refuse to make the charge and the abuse would continue, so in Virginia we ended up with very specific procedures, which work properly the vast majority of the time. The felony assault charges were dropped as part of the plea bargain
The worst part was the handcuffs, especially when my wife had to go to the bathroom (there was a femal officer present). The lead officer said they don’t refuse the cuffs if the person calms down because every time they put on cuffs with someone who resists there is a chance of hurting them and they don’t want to take chances. I don’t know if any neighbor saw my wife take the perp walk to the police car, but that was the least of my worries. And I always wonder if they would have gone worse if we were people of color.
The weirdest thing was how my wife was in such a good mood after a few hours in the pokey.
But yes, the resources are not there for intervening in a health crisis.
I have written to the head of senior services about volunteering with caregivers but haven’t hear back yet. I will write again since she used to be a co-worker of mine 25+ years ago and would run into her occasionally when my son was in high school since she had two boys in high school at around the same time.
Thank you George & Paul for sharing your stories. You definitely went through much more than I have. My husband has many problems - and has gone through several stages but nothing like what you describe. Since he is 81, I wonder if he'll change that much more - he has an evaluation this morning. Other than an exploding temper, the signs of anger/violence seem to have gone away. Although, as others have said, he is still a big, strong man and a couple of years ago the doctor told me if he continued with that pattern, I'd definitely have to place him.
We discovered how bad my Mother was after my Dad died, he had covered very well for her. She was able to stay in her home, with help, for 6 years after my Dad died. As she went downhill things she did were only a danger to herself, not others. We tried a private home, but after a few months they said she was too bad to continue. She lived the rest of her life in a nursing home and while she often did things like taking off all her clothes, hiding them, and walking around - and oh, the dirty jokes. No idea where she got them and if you knew my prim and proper Mother, we would often laugh as well as cry. As far as I ever knew, there was never any violence directed to the family or the nurses. My sister stayed in her home - when she no longer recognized her husband she would panic at a strange man in the house....they hired someone to live in and of course, her daughter was always close to help. She went to day care 3 times a week and her daughter did the personal things she needed. Again, the dangers were always to her own being, not others. It helped that they were able to afford everything, and had plenty of help.
The neurophysiologist told me some of the progress, or lack of it, had to do with their intelligence. Highly intelligent people would score high on some tests, low and others - while others did just the opposite. I don't know if there is any correlation with how the tangles in their brain spreads. He thought some things were related to how their lives were prior to developing AD, professionals, good diet, good health, socialize etc. While I didn't agree with all he said, it was interesting to hear. The one thing I've experienced, and he did tell me, was as the disease spreads to different areas of the brain it would affect his behavior.
My boys have been, one still is, caregivers for 3 in-laws, one who lives with them and requires constant care - he runs off as soon as they are out of sight, and two who became violent, one male and one female, the female has 24/7 live in help and the other had to be placed. He too was a big man and was almost too much for my 6'2" son - no one else could control him. Even after he was placed they had trouble handling him.
Both of your situations with your wives, is sad but interesting....I wonder what, if anything, would be different if it were you with AD and your wives had to care for you, would they be able to? I read and study but then when I talk to ones like yourselves, you realize a lot of it is just conjecture - as the final determination is only with an autopsy. Something I find interesting with my husband is, as he declines, his overall health improves. He has had major health problems, and in 1993 was given a 50/50 chance to live 4 years. I won't say we didn't have problems, and since some of his problems originated in the brain...it could well be he was already exhibiting symptoms of AD -- just that no one recognized it as that. One neurologist, told us x-rays showed some damage to the Right Frontal Temple.....but his behaviors never seemed to fall into that category. Already too long, again, I appreciate everyone who shares their stories, I know sometimes it's difficult to discuss one you love so much.
One more question for the guys - how old was your wife when the problems began. Don't know how true it is but have read those who develop it earlier have a worse time than others who don't show any signs till they are over 65. Also, did either of you consider enrolling your wife in the clinical trials? Wonder if those are different, state to state? I discussed it with them but decided against it. My husband knows something is wrong, but fights any type of information being made "public".
oak ridge, we had started noticing the beginnings of memory issues (forgetting people's names, locking keys in the car trunk, etc.) by the time my wife was 73, and we finally asked our family doctor for a referral to a neurologist a couple of years later. The neurologist ordered a brain MRI, which revealed some atrophy of brain mass, but not abnormal for her age. He ordered other tests aimed at elimination of other possible issues, started her on Aricept, and suggested that she come back in six months -- but with no specific diagnosis at that time. A year later I pinned him down and he opined "probable Alzheimer's disease", started her on Namenda as soon as it was approved by the FDA, and continued seeing her every six months as the disease slowly progressed over the next six years. We experimented with coconut oil when there was some excitement here on the message board about that as a possible help, but nothing really worked to alter the course of the disease. We learned of a "Late Onset Alzheimer's Genetic Study" and enrolled her in that since two of her next younger sisters had also received AD diagnoses by this time. What this amounted to was a visit to Mayo Clinic, where a specialist evaluated her and took a blood sample for genetic testing, and the same procedure was then repeated for the two sisters. There was no expectation that anything would be learned that would do any of them any good, but maybe it could help with understanding the disease and help others later. While at Mayo my wife also signed papers consenting to a brain autopsy for the study. She was able to understand that she had memory issues due to a disease called AD, and wasn't hesitant to tell that to a stranger in explaining why she might not be able to remember things. As her disease progressed, there were never any behavior issues or emotional outbursts, with singing vocal harmony the one thing that continued to engage and delight her up until the final weeks of her life. She seemed to be able to harmonize about as well as ever, except for not remembering all of the words to favorite hymns or whatever. Our bachelor mental health counselor son generously moved back in with us to help take care of her here at home and allow me occasional respite time for her last year. We went through the whole thing of incontinence, as well as her finally needing help with bathing and toileting and dressing as things progressed, and even needing help with eating during her last three months under hospice care here at home. She died about seven years after diagnosis, ten years after we first started noticing things. I'll be glad to send you a longer version of this if you're interested -- my email address appears on my account.