Today's blog is about company coming for the week - company we have not seen in a year. Company who asked what changes they will see in Sid. I told them that since he appears perfectly normal to everyone else, I'll look like a lying drama queen. I invite you to read the blog, and post your comments here. I KNOW this happens to you - I'll bet you are as frustrated as I am.
Joan, I for one will join you in the "lying drama queen club". In our case it's mostly family who never seem to see anything wrong. On the phone they will ask how is he doing? Do they really want to hear that he is now putting his shirt on inside out and has trouble figuring out how to get into his underwear, that we have a long discussion about raccoons living under our shed, with him saying two minutes later that it's impossible for them to live there. Part of the reason for their denial is that he is the perfect smiling host when they come for a visit. They don't seem to notice that I have to hold my tongue as he repeats the same stories over and over. It's a good thing in a way that your friends are not staying at your place. If your husband is anything like mine, he cannot tolerate having his routine disrupted. On the other hand, if your friends did stay they would quickly get the picture of what you go through on a daily basis. I wish you an enjoyable time with your friends.
Our friends visited Memorial Day weekend (and stayed with us) and after having seen him 6 months before, their comment was that he couldn't talk in sentences any more, but other than that, no change! I wanted to scream!!! But I didn't. :) I was proud of me! They couldn't realize that my husband puts on an act every time others come into his space. He concentrates very hard on making normal movements (including walking without shuffling his feet) and eye contact (which I know is a big strain now - his concentration has deteriorated) and his ability to sit still (he's like a toddler wanting to get up and go somewhere else in the house). They are coming for Labor Day Weekend, and I know that he'll be on his best behavior for that too! <grin>
The problem is that AFTER the visit, he goes into a confused state that will last several days before reverting to how he was before the visit.
At least Sid can converse and if he starts back seat driving, you can smile!!!! Try to just enjoy their visit and don't worry about what they think of the state of Sid's condition. It really doesn't matter. What matters is that they are there for you and have fun.
I know exactly what you are talking about. My husband's behavior is totally different away from home. We have started having all family gatherings at my son's house instead of ours, he does much better with the little grandchildren. Or when we are out in public & he meets someone he knew in the past, it's almost like a different person speaking. That is what is so frustrating, it's almost like they are normal. It reminds me of when my kids where little, they were always well behaved in public or someone else's house. Always, waited until they came home to act up.
You have every right to be frustrated! Before Lynn was diagnosed I too had this same problem, just not to the degree you are. Since I didn’t seek help for Lynn is the early stages, as I just assumed it was normal aging problems, and perhaps in truth I was in denial- I never had quite the same dilemma you are faced with. Lynn didn’t seem perfectly normal to anyone. By the time we sought a diagnoses he was well into the beginning of stage 5.
People could tell something was wrong, but what I was often faced with, ALL the time in truth was “oh he doesn’t seem too bad to me” “so he forgets thing, it can’t be that bad!” What I could never get these people to understand is his problems went much deeper than just forgetting what someone said. His whole personality changed, though I loved him still… the marriage can’t help but break down. If it was as simple as just repeating myself a few times a day, would I have ended up in the hospital with TIA strokes?
Hardly! But sadly that is what it took to open the eyes of some people. No one, I don’t care how hard they try, can truly understand the hell of Alzheimer’s unless they have dealt with it first hand. And as you all know, and the reason for Joan starting this site, is no one but another spouse who has been there can fully understand how Alzheimer’s intensely impacts and eventually robs one of the person they married.
Even today, where it is obvious to even a stranger that Lynn has some type of dementia- even today! I am still told, “Oh he seems to be doing just fine” I stopped a long time ago trying to defend my position. Their opinions just don’t matter anymore. I agree with Patrick, never doubt yourself. You are the one who is there taking care of him, you know the truth. I don’t waste my time anymore trying to educate people who just will never truly understand.
It is a hard road you face. I often say the earlier stages where the hardest as our loved ones could still function to some degree, but more so, because they knew what was happening to them. In those moments, the hell I could see reflected in Lynn’s eyes, still haunts me to this day. What I love so about this board, is that I am no longer alone. My pain is not after all unique. Here- there is always someone who has been where you are, or where this journey is taking you. We can let those who have come before us, hold our hand and guide us.
Even though my DH's brother died of AD and we saw him every few weeks, I never realized what it was like at home. In public, his comments often didn't make sense, he called everyone "lady" to cover up that he didn't know names, and he walked more slowly...but until you live it, you just don't know all the things it impacts in daily life. My sister-in-law kept it to herself; I wish I had known to be more of a help. She died 9 months before DH's brother did...surely the stress of all the care helped. I tell people when they ask and try to give them concrete examples of what he can't do so they do have some understanding.
isn't it amazing how they have the awareness to do the covering up, like not calling people by name, etc. We've had a parade of women through here the last couple of weeks because I asked to have the visiting nurse services while I could get them through medicare after his hospitalization. Nurse twice a week (seldom the same one), physical therapist, social worker, occupational therapist.. and I've rather pressed him, with each one, to the point where they can see that something is wrong! { They've actually been very good with him, and supportive for me. If the therapist tells him he should use the walker by standing up straight and walking into it, he'll do it, and if I do, he won't. }
Maybe you can do a little of that, Joan, letting him get himself into hot water and not be able to extract himself easily, so that your friends can see it's not just your imagination. Maybe ask him to be the "navigator" when your friend's husband drives, for instance. Or would that just infuriate him and embarrass him? (mine forgets being upset so easily that little does embarrass him)
At the beginning stages of DH AD we were working seperate shifts and rarely had more than an hour a day together. And if I was at work when he was home he had a few beers before I got home, so it was hard for me to see anything at the start. But where I learned the most was from neighbors and the hidden job evaluations he thought he had hid from me. His co-workers even started calling him nicknames in regards to his forgetfulness. I wish I could have know about his outbursts at work, and his being unable to complete his work assignments sooner. Not that we could change anything, but I could have made changes sooner. Everyonew saw the beginning but me. And no one talked until too late.
Joan, I've been trying and trying to write an answer, and I guess that the problem I'm having is that I don't understand exactly what it is that set you off.
If these are your friends, they know what you're like, they believe what you say, and they'll continue to support you. Are you afraid you'll find out that they're not such good friends as you'd thought? Do you think they'll sneer about you behind your back if they don't see Sid's bad behavior for themselves, think less of you for some reason? Would it be the end of the friendship if Sid manages to compensate?
If they ask you what changes they'll see, tell them honestly what changes YOU see, but that Sid -- like most, if not all, other AD patients -- is good at compensating for short periods of time. Tell them that the longer he has to be on his best behavior, the worse the collapse when they're gone. Your friend already knows all of this, anyway, if she reads your blogs and you frequently talk by phone.
I think maybe your friend was just a little bit nervous about what might happen, and she wants to be prepared, so she is ready to react the way you need her to react, the way Sid needs her to react. She's not used to being around an AD patient, she may be afraid she'll do something "wrong", cause a problem for you, upset your husband.
Do you actually need others to witness what Sid does when he's having a really bad spell, for YOU to be comfortable that your interpretation of events is real? Are you afraid if Sid manages to behave for short spells during the visit, that will be proof of some sort that there's something wrong with you?
I think, tempting as it might be to try to provoke Sid into behaving the way he does when he's alone with you, it would be unfair to him, and could have disastrous consequences.
We talk about treating our AD spouses with dignity and respect. I believe that includes protecting them from embarrassing themselves in front of others. And if they are not ready for others to know they've been diagnosed, let alone how severe their symptoms may be, then I believe those feelings should be honored. Immediate family need to know, at least in most cases, and the people you count on for help, but other people -- no.
In fact, I think you should ask your friend to help you help Sid compensate. If there are specific triggers that might set him off, tell her what those are so she can avoid them. Arrange for a private signal you can give her if you think Sid is getting too tired.
My husband used to be CEO of my company. When he was first diagnosed, he was not about to let me tell anyone else. I could understand that, and I helped him hide his symptoms as long as possible. We did not make any announcement about a change in management -- I had been handling more and more of his responsibilities anyway, nobody really questioned whether I was taking on his job -- I just did the paperwork that was needed, for corporate minutes and filings with the state, things like that. He could control how much other people saw him -- he could retreat into his office when he was feeling shaky, and of course no one would intrude. I screened his calls and email, wrote answering emails for him or just told people I would handle the specific issue at hand.
One day, he said something totally off the wall in the lunch room, and the other staff there looked at him strangely. I had a private conversation with him, telling him that we needed to let our employees know the truth because he was no longer able to completely hide it. He knew I was right, but refused to be present at the meeting. I prepared and delivered a brief statement. At the end, I asked them to please keep treating my husband the way they always had, but to also please remember his short term memory was shot, so not to rely on his following through if he promised to do something. I told them he needed their friendship and understanding. Nobody said anything, they were all very quiet and filed out in silence.
After that, the staff treated him just as they had before. They sought his advice, they liked to chat with him when he wandered back into the lab or was in the lunchroom. If they noticed the problems he was having, they never said anything to me at the time. I guess I did wonder if they thought I might be a little bit nuts ... but my husband's comfort factor was my top priority, and he was very comfortable with them.
After I had to announce that the company was going under and I was laying everyone off, several of them came to me in private to ask how he was really doing, and told me they'd be happy to help if there was anything they could do.
Trust your friends, Joan, and don't worry about anyone else's opinion.
It hurts-but people still come up to me saying they never saw anything wrong with Bill. It is two years since he has been placed. Other neighbors who saw him often feel it is necessary to tell me now the rages and tantrums that went on. It seems dementia victims can show many faces. My son is still not able to accept that "turning it on and off" is part of the disease.
Well, but bluedaze, aren't those people who never saw anything wrong really telling you that they realize they weren't very perceptive? Perhaps, in a very obscure way, apologizing for not being there when you needed them?
And perhaps the others are trying to help validate you, make you feel better that you had to place him, let you know they understand?
If there's one thing I learned when my first husband was dying, people just do NOT know how to deal with suffering. They'll say exactly the wrong thing.
Your son, now, that's quite different, and you have my deepest sympathy there. For him, it's all too personal. It must be such a struggle for him.
I think someone asked if you needed others to see what is really going on to validate what you know Joan. I can't find it in the thread so they may not have actually said it that way, but what they said hit a button for me.
For me the answer to that question (asked or just what I thought was asked) would have been YES. On my first visit my therapist told me that the horrible, terrible, awful things I was planning to do during my husband's last days were OK. And although I knew those things were not horrible, terrible or awful, I needed someone else to tell me that out loud. My "homework" that week was to make sure my daughter knew what was planned. Turns out she doesn't think any of it is horrible, terrible or awful either. Just necessary.
It doesn't surprise me that Joan needs someone else to know what is really wrong with Sid. I think that if my daughter and her husband hadn't been able to see what was really going on because we have long overnight visits, I'd go nuts. I'm so lucky. I've got neighbors who "get it", doctors who either "get it" or didn't get in the way of a diagnosis, and family who are on the same page as me.
I've run the gamut of acceptance to complete denial from family and friends. I have seen how well and how poorly they have dealt with my husband's AD.
An ignorant person made the comment to me one time that if the friends really cared about my husband than they would understand. This hasn't been true either.
You are not a drama queen, you are lucky that he can still hold it together in public fairly well. The above advice on telling your friend how to handle him "in case" is good.
Preparing them on how to handle the situation if he should start raging at you is probably a very good idea.
It is also good that he will still have some space as they won't be staying with you.
No, it's nothing all that complicated. What set me off was that I'm just tired and worn out from my husband telling me I'm a liar because he can't ever remember what he or I or anyone else said; I'm tired and worn out from dealing with his temper, depression, irrationality, and accusations; and I'm tired and worn out from no one seeing any of it.
But I just came back from getting a full body massage, and I'm so mellow, my head is practically on the keyboard. It was given to me as a gift.
My husband has never tried, or been able to "act out differently when in public". He was the same with other people as he is with me. He told me 10 years ago he thought he had AD. It didn't seem to me he was any worse then most other people his age but he kept telling that to me. I tried to bolster him (or me) up by telling him, no he didn't, he was just like other people. There was no AD in his family and I thought it ran by families.
He was evidently saying or doing things that other people noticed as "different" because I don't think anyone ever said to me they didn't see anything wrong with him. During this time we owned a retail store and had employeed.
When he first went to a Neurologist a couple years later they did the long test and he did so so. But, they didn't diagnose any disease. A year later I took him to a Neuro at Cleveland Clinic who also had the long testing done and he said he didn't know, but he DIDN'T have AD.
I kept telling people he didn't have AD but 3 years later they said he has Parkenism with Dementia and a couple years later they said he also had AD. People have asked my for years how he was doing and you know...how do you answer... until the last couple years I said ok, but now he isn't ok and I tell them. I am still not sure he has AD...I know he has Dementia but nobody says he "looks fine to them". It is quite obvious to anyone who first sees him, he is not well. lmohr
Very nice Joan! That sounds absolutely wonderful! Wonder if we can have a masseur at the SO cabins :) Glad you were able to relax, every little bit helps.
Mary, thank you very much for the lovely compliment.
lmohr, Lynn has never been able to act differently either. He is who he is 24/7 no matter where we are. I think this takes place mostly in the beginning stages. Now, even a stranger can tell there is something really wrong.
My mother who is 88yr and a retired nurse of over 40yrs confessed that just until recently has she felt as 'ease' around my DH. even though she has dementia friends etc and hears about it from her groups she is active in, she says she hears stories how 'they' can fly off the handle and or become violent without any provocation. she was always quite startled when DH would stand by her or try to sit by her, now i know why. i explained that early in the disease he was sometimes prone to rages but meds mellowed him out and he was never dangerous-(i think:) andnow he was quite mellow and just wants to be included in the conversation and sit with us and not be excluded. it helped alot and now she speaks to him and doesnt avoid contact with him. it took 8yrs..how sad, i never knew her fears. some of your people may be feeling these same thoughts. it may ease the situation to get them to open up. divvi
For my own sanity's sake, it helps to have someone SEE that things aren't 'just fine' here. There are times when I think I'm too uptight, too vigilant, and too everything. DH in public is usually pretty much OK.. He remembers old (very old) friends..exact dates of events when he was a child (?not sure about the truth of it) BUT to outsiders and those who only see him for a brief few minutes etc.. They probably think he's just fine. Only someone here in the house would notice the difficulty with gathering up clothes and towel etc. for a shower.. Only someone here would notice that if he put up dishes from the dishwasher, dishes/pots/silverware would be in all sorts of places.. Only someone here would witness the unusual eating (mixing it all together--'easier to eat that way')..Or various little things that have NOTHING to do with remembering who I am. That was one question from a friend recently.."does he still know who you are?""".. In public, also, he might just hug the waitress..meaning no harm, just 'glad to see her'..But only if they can be here longer than 2 hours or through a mealtime or preparations for bedtime, can our children come to the realization that this isn't something we are imagining. Only if someone goes with him to an unfamiliar place do they notice that he gets completely confused.. I'm not sure if it is a blessing or a curse that my husband doesn't comment at all about being aware that he has difficulties. Im not sure he IS aware. Anyway, just my two cents..it helps me that someone else sees and understands.
I don't even try to explain to our adult children, they are in denial. When I try to talk too them they change the subject or come up with that phrase we all hear,"he seems ok too me. Later they will have too face up to the situation whether they want too or not. Until then it all rests with me. I know many of you have had the same reaction.
I am very fortunate that our children all accept the fact that dad is not what he was. Even the Grandies seem to understand that, and it's OK. He does very well in social situations, but I help him.... I cover for him, I explain without making him feel embarrassed, I really try to keep up his front. But about 2 yrs ago, we went to Myrtle Beach with good friends, and withing one day, they knew.... and they understood. It doesn't matter, really, and I kind of agree with Sunshyne, I know what's going on, and honestly, he does too. We sat down to watch the Forgetting on PBS, and when I saw how it opened I said to him that it might be too upsetting for him. In a moment of total comprehension he said "I need to know all I can about this disease" I couldn't believe it. And then it was gone like a flash. We have to live this life, no one else does. BTW concerning your other blog... My DH has been on Zoloft for years. Having this disease is very depressing for the victim, as well as for the caregiver. My feeling, he needs all the help he can get.