My "aha" moment came a couple of years ago when we were visiting my DW's two sisters (both of whom suffer from AD also) at their assisted living facility back in MS. The two of them were out on the porch singing when we first arrived, but then later the activities director stuck her head out the door and called everyone in for a "cake walk for Alzheimer's". She'd used masking tape to mark off a large circle with numbered squares on the carpet in a lobby area, and urged my DW to join the other walkers, including the sisters and maybe twenty other residents, in the cake walk. The object was to get sedentary residents on their feet for about an hour. My DW joined in enthusiastically, but a sobering thing for me was to see her in the company of other of her "peers" without me to guide and help her. She was probably the poorest performer of those participating in the walk (where I had assumed she'd be the star, what with our usually walking a couple of miles every day). A volunteer finally took her arm and helped keep her moving around the circle as the music played, and got her to stop on a square when the music stopped, but her gait was unsteady with little mincing steps, and it was hard for the volunteer to keep her walking around the circle and in the right direction -- while the sisters and most of the others were striding out smartly. The activities director saw to it that everyone won lots of prizes, and my DW seemed thrilled to win several -- saying later how much she'd enjoyed the game. The whole experience was sort of a wake up call for me. I began to question then whether or not I might be making a mistake in trying to help her maintain a semblance of our "regular lifestyle" and placing challenges in her path, where maybe she'd be happier doing the mindless things that her sisters do.
mine came about a yr ago when DH started carrying on vivid conversations with statues around the house. one in particular is about his size and i sawhim hugging it and laughing. it was devastating to see the reality of what the disease has done to such a vibrant intelligent man. i am happy he has no clue how ill he is, its such a relief he is beyond comprehension. then the irony is my aide that was here friday told me DH read the tabloid to her and she was shocked he could read..i think he bounces all over the place in abilities. divvi
My DH first noticed memory problems 10 years ago. His neurologist told him he was fine. I did notice he started having problems and forgetting appointments, paying bills twice or not at all. When he messed up the income tax return I knew. He had been using computer programs to keep track of everything, but you have to put in the information or the programs do not work. I took over finances and everything else about 5 years ago.
My wife was a stay at home wife and I was on the road most of the week working in sales. My wife took care of all the bills. I made it and she would spend it, was our arrangement. One weekend about 2 years ago I noticed we were getting all these past due bill notices in the mail. She then confessed she did not know how to log into the bank bill pay system anymore.
I've known about my husband's condition for some time....but since he's been away from me for a year or more in Florida, I can say that yesturday and today have actually been my AHA moments. I've known but been in denial in some way, still affected by his alternate personalities, the accusations, the verbal abuse. Yesturday, I had to disconnect all the phones....called me every 5 minutes first one personality, then the other. The nursing home won't take his phone away....infringement on his patient rights. This morning....phones plugged back in. Figured he'd be okay by now. No. Insisted he'd been discharged. Accussed me of visiting him yesturday (haven't been there in 3 weeks) with some man and leaving with him, hand in hand. Wanted to know if I knew where he put his rental car (he hasn't driven in two years). Yes, he's going, going, allmost gone. I have so much resentment for his familyl taking him away from me to Florida and keeping me in a place I knew nothing about. I feel like they've robbed me of one year when I could have still had a conversation with him and played scrabble, watched the news, shared things, even though things weren't perfect. Little did I know a year ago when he went into the psych ward (from his threats to me) EXACTLY what I was dealing with, even though we had had the diagnosis. It sounds like he's in stage 6 if not late stage 5. I don't know. I've found out that tomorrow the staff and doctors at the nursing home will be meeting to discuss the issue of his coming home....even if that is a nursing home nearby. AND MEDS TO MAKE HIM MANAGEABLE!!!
My husband has had memory problems for about 6 years now, however, my" aha moment" really came recently, when he started having conversations with his friends in the mirror. I must admit it was like a slap in the face...I really don't know why this is so bothersome. And like divvi mentioned I thank god he doesn't realize what this means,he was such a confident, intelligent & proud man, he would be devastated to think his life is ending like this.
My moment came when he tried to kill a rattlesnake with a pair of pliers. After I grabbed the back of his pants and spun him around, I grabbed a hoe and killed the snake on our patio. That taught me that the reason button is truly gone. This happened about 4 years ago.
I had been noticing changes for about 5 years, but last November, while having problems with continued depression and anxiety our daughter decided to go to his PC with him. While there the dr mentioned a conversation that he'd had with me. Jim got all upset that I'd talked to the doc without his knowledge. Courtney called to suggest that I not make calls to the doctor without DH's knowledge. I told her I had made the call with DH sitting right next to me! When I got home I went to him and acknowledged that I understood he was upset about the phone call. He said, "What phone call?" Ahhh.
My AHA moment? There's only one? The neuro-psych Dr. asks me to tell him about DH's 'Stroke History"? What Stroke History? Aren't we talking about Learning Disabilities and Schizo--Affective Disordr plus extended exposure to mmedications causing a faulty signalk to cause electrolyte dumping?
"I brought Chantey in." (He said>) "I hope not. Chantey's dead." (I responded). Didn't realize he was mixing up old dog (died in 1999) with current one (born in 2001).
Skills I though gone pop up and ones here this morning are gone tonight.
I'm sure I'll be having lots of AHA moments, before we're done.
Yesterday there was an AHA moment. A woman who goes to our church recently had her husband admitted to an Alzheimer's facility. She knows about my husband's diagnosis of MCI. She asked yesterday how he was doing and if I had noticed a decline. I said yes and asked if she had noticed anything, because most people say he seems fine to them. Her reply was that she had, that she didn't want to say it but that she "could see it in his face now."
Even though I didn't know it, I think I was trying to deny that he really is getting worse until I heard that.
we were at a mex coast beach resort with my BIL/SIL and we had one of those tables where the japanese cook does the food over the flames and serves. there was a couple there on the end my SIL talked to thru dinner. the lady had worked with AD patients before. she toldmy SIL as soon as we sat down, she knew DH had AD. it was the look in the eyes. how sad. this was over 5yrs ago and it was evident then. we do tend to deny the illness most of the time strangers 'know' anyway. divvi
The "aha" moment that really broke through my denial; My disabled husband getting up from bed, dressing, using walker to the living room, 5 minutes of sitting, back to bedroom, undressing, lay down for 5 minutes, getting up, getting dressed, back to living room for 5 minutes. Rinse and repeat for 14HOURS STRAIGHT. He couldn't communicate..his skin was gray and he looked like he was a ZOMBIE. Very scary and weird. It was off to the neuro after that.
In January, we went to a local fair, and there was a carney trying to convince me I could throw a ball through a hoop and win a big prize. I declined several times, then he noticed my wife, and offered her to try for free. She threw the ball and missed. The carney then gave her a big prize..she was lik a two year old.......all that joy (even if she missed by a mile) Later, I met the carney again, and thanked him for what he did...he replied that he noticed she had alz, since he also had it and recognized it.. I was shocked but he told me that it was her eyes that gave away her secret.....
Frank, you will soon find that you will be able to spot AD just by looking at someone. I see it in the grocery store quite frequently....an elderly man brings his lovely bride in on the same day that I usually am there. She is very far along in the journey and she holds onto the cart and shuffles along. Her eyes are vacant and her face is almost void of all expression. I see the kindness and tenderness in his eyes and on his face as he gently pushes the cart and talks softly to her. It is a beautiful thing.....
Tell me more about that vacant look.....My son is 34, and I think that I am noticing the same look at times.......and I am so scared that he is the 4th generation....
phranque, My husbands sister (who has alzheimer's) ask me if my AD husband had AD too,since we've never talked about it I ask her why she wondered,her reply was I can see it in his eyes.I was very surprised and I still think that's strange that they pick up on that.I've never seen the look in his eyes myself.I have however noticed it with others with dementia of some sort.Can anyone tell me at what stage this happens? Thanks
the eyes grow listless and lose their vibrant color. they can become watery looking and dark circles appear too. the vacant staring or hollow look is evident -the whole eye socket seems to shrink back in the face. i have been measuring my DH head for some time to get a gauge on how fast his brain is shrinking i know the brain is incased in boney structure but i see dramatic results in measurements over the yrs.. it is quite alot smaller than a couple yrs ago.. divvi
Never thought about measuring the head! Makes sense though. My DH doesn't have the vacant staring or hollow yet - yet, but think I will measure the head now - before that happens. Thanks divvi.
what started me measuring his head was that during our last ski trip his hats would blow off his head and or spin on his head! same hats he wore yrs like his cowboy hat. alarmed me to no end his head was that much smaller...so i started measuring ---very obvious. i think that was in charmonix france..sigh mont blanc..2004? divvi
Divvi, in Chamonix, near the center of town, there is a little cafe with outdoor tables, a little stream rushing down a rocky path within feet of where people sit. You can sit there and watch paragliders jump off of the mountain cliffs and sail into the valleys. Were we really there?........ It seems like a dream...but I know we were there, ...he was our 'official guide' - having living in Geneva for years before we married... It seemed as if that kind of life would go on forever and ever. But, things happen. and I remind myself, ...it could have been ME.
i sat at that restaurant i do think! but we were there for skiing. white beautiful snocaps..blue skies, and lots of good vino...ohyea,.".those were the days my friend, i thought they'd never end"..lalalallalala...divvi
just discovered an aha moment to share. At Christmas, we had a family get together at my brother's house, with all my family, and several friends, probably about 22 people. I kept hearing how well my wife was doing, and that she was normal. (Yep heard that before). My aha moment came when it was time to eat, (buffet style), and everyone was asking my wife if she wanted ham, potatoes, chips, salad, rolls, pickles, salmon, steak, salad dressing, etc etc. She developed a blank look on her face, and since I was in the other room, I was unaware of this. Several people came to get me and told me something was wrong with my wife........ I gathered up a plate, filled in with ham, veggies, salad, ettc and just handed it to her...She immediately starting eating and was "normal" again....I learnt that too many questions, too many decisions, and too much input confuses her to the point of shutdown. There was too much activity, too many ongoing conversations, too many decisions, and it overwhelmed her. So..my advice to caregivers is to limit the stimulus, make the decisions, and not allow too many distractions. When I made her plate, I had enough variety that she was able to pick what she wanted off the plate, and not have to fill the plate herself. She ate most of it, and left what she did not like...... Keep it simple, stupid.........KISS..
A couple of months ago the wait staff in the dining room of our retirement home started taking my wife to her seat as soon as we arrived for a buffet. One of them would go over the menu with her and then join me in line. Usually, I would decide what she should get, but last week she really made good choices. We also are involved in a Chinese buffet at Rotary Tuesday evenings. There, I leave her at the table and fill 2 plates. She seems to like most of what I get, and doesn't seem to get upset at being left alone at the table. When we are at a restaurant I have been ordering for her for the past several months.
I can definitely see it in DH's eyes. His eyes aren't sunken in yet but they definitely look different. However, rather than Aha moments, I think I have more Oh Crap moments and know DH is getting worse. Like today when I asked DH if he was paying his supplemental insurance premium by check or was it auto deducted from his account. He did not remember and had no idea when it was paid last. Immediately I thought "Oh Crap". But it is ok, it is being auto deducted.
LIzbeth, LONG before you see that look in his eyes, you'd better get complete control/awareness of all the finances. We can't stress that enough!!! And "lose" the checks, the credit cards, move money into protected (from him) accounts, eetc.
A little over 4 years ago I noticed that my wife was having difficulty finding words to express what she wanted to say, but knew she was under stress at work so didn’t think much of it. One day our daughter asked her to pick up a takeout on her way home from work at a restaurant near our home that we frequented often. She said, “You’ll have to help me, I can’t remember where that is.” That same evening we were at a symphony concert and she was chewing hard candy loud enough for those around us to hear, something she would have never done, she would have been mortified if I'd done the same. Her physician referred us to a neurologist and after many tests we got the Alzheimer’s diagnosis. It’s been gradually but steadily downhill since.
Briegull, Thanks for the advice. We are divorced. I just call him DH. He has very little money to manage so it is ok. He just recently gave me DPOA. I keep a close eye on what he is doing. Actually, since EOAD is in his family and he was tested for the PSN gene, I was on the look out for symptoms years ago. We have been at this (AD) for a good 10 years. DH moved from MCI to early AD per his testing scores last year but has been DX'd for 5 years.
Oh my goodness, the ah ha moment. I had suspected that my husband had AD, both his parents had it. The day it hit me was when he threw the checkbook at me and said "I can't do this anymore, you do it". My husband knew numbers inside out and his degree was in aeronautical/astronautical engineering. It turned out the checkbook had not been balanced in 6 months and he had over $3,000 of double paid bills (thank goodness for us). I made an appointment to take him to the doctor and went with him. The rest is history. He had a MRI done and we went to the neurologist. He had 'significant' frontal and temporal atrophy. He wasn't diagnosed with FTD because of his history. The diagnosis was on 7/2/08 and he has steadily gone down hill since then. I believe he is in stage 5 now with glimpses into stage 6.
My aha moment came about a year ago. I knew something was wrong but did not realize how profound it had become until this incident. We went to a local sports bar for lunch. A place we were both familiar with. We ordered lunch then John said he needed to use the restroom. He was gone for forever and I finally stood up to find someone to check the mens room for me. Much to my amazement John was sitting in a booth on the lower level. He smiled when he saw me and said I wondered where you went. He came up and joined me followed closley by a waitress. She said well at least he's consistent, he ordered the same thing down there as he did up here. I was dumbfounded. Then the manager came to the table and said I see you found your jacket. John had told him he left his coat in a booth and it disappered while he was in the restroom. The only thing I could think to say was "John,if you had told him you lost your wife instead of your coat we could have figured this out 20 minutes ago." This incident rattled me to the core. Shortly after we saw the neuro and got the dx of FTD. cs
My aha moment came when my daughter got married. We had lived in Cleveland area for years and years but recently moved away. The wedding was in Cleveland and we went back and stayed at a hotel around the corner from the house we used to live in. All the out of town guests were staying there. On the day of the wedding, daughter and I went to get our hair done and dh was supposed to go to Target to get a basket for the programs at the church. The plan was to meet up back at daughter's house to get ready to go to the church together. To this day, I still don't have all the details of what happened, but dh got lost on the way to Target, don't know how he got his tux, but he had the groom's tux in the car. He never made it back to daughter's house but did show up at the church right about the same time we did. Previously, all the signs were attributed to stress at work or a growing distance between us in our marriage. But, daughter was -is- the light of his life. As soon as we got back to D.C. I called the doctors and we got started down this narrow road. Life hasn't been the same since.
This may sound strange, but the biggest “aha” moment for me was when the doctor finally said "dementia". I knew for years that something was wrong, and so did DH. One time that comes to mind was at my mother’s funeral, when DH insisted on telling one stupid joke after another. I finally told him to please be quiet or to leave, and that my mother’s funeral wasn’t a place to be telling jokes. He told me he was telling jokes “to keep my mind off it”. Completely bizarre behavior for DH. I guess he was trying to comfort me, but didn’t know how. After years of things like this, when a doctor finally said the word dementia, it was like all the pieces just fell into place. We finally had an explanation for all the things that had been happening for so many years. He was only 54 when he was finally diagnosed, but the symptoms had been there for at least a decade.
I think I have had several Aha moments, but the most recent was when I was having trouble figuring out why DH only ate about half his food. I suddenly realized he was cleaning only the right half of the plate and if I casually turned the plate around so the right side still had the food he would clean his whole plate. That was about 2 weeks ago.
I just realized that I unconsciously turn DH's plate while we are eating. He eats what is in front of him. If I have dessert out, he'll always eat that first. That used to bother me, but not anymore. As long as he eats most of his food, I don't care what order he eats it. Isn't it funny how many things we do with/for them without even thinking twice. I place his drinking glass down with the handle facing him... put the spoon into his yogurt so he won't try to eat it with a fork..lots of little things like that.
Just had one, Been ill, and last week, dh kept asking me where's Chris? I kept saying I'm Chris and he'd become annoyed that I was lying. but finally I said, who am I? His answer, You're mommy. Talk about an aha moment. That lasted several days and then went away and he 's his normal self, but, I know what's coming.
What a so sad but great topic. My AHA was a process that started when my then 49 year old DH was about to be fired from his 28 year career, but he quit first. He traveled but got a local job quickly and I noticed he could not keep up with the day to day agenda...I told him I was either really irritated or really worried. This went on for a year before he was fired on that job...the only reason he lasted that long was because the manager was not doing his job...when they fired the manager DH lasted three weeks, but again he quit when they told him he should quit or they would fire him, thus making us inelligible for unemployment benefits. That's when it started to come together that something was wrong. Three days after he left that job he took our dauther to school and came home, then I went to work but when I returned he had his tie on, at which point he said he went to work but realized he didn't need to be there. In the same conversation, he could not remember how to find his mother's flight itinerary on the computer (he was a computer wiz) and had a delusional episode talking about being nausious due to his airline flight that morning, of which there was none. That's when I really knew. He then went to a local operator in the same business as his 28 year career and I thought it would be good because that employer would know something wasn't right and would help me help him. That job lasted 2 days!!! I was shocked! I then brought him to an internist and to make a longer story short we saw a neuro last Thursday who said FTD but needed more tests. DH won't see any more doctors and thinks he is just fine but has not worked since Jan. 2009.
Marise your husband is in a terrible phase of the disease. He is aware enough to get very angry and be controlling-but starting to lose it. At the end my husband could still present himself well enough to get a job-but couldn't keep it. It was always some one else's fault. He is now in a dementia facility with no awareness of anything.
My first 'aha' was about 15 years ago. We had returned from a delightful vacation in Europe. He would tell friends about the trip. My memories were different. I said one day that I thought we had been on two different trips--even though we were together every minute.