Dear Joan, I feel our LO's who are still cognizant enough to know they have the disease must struggle mightily to hide it in social situations. You have been the love of Sids life for years. Now you are his mother and guide. With you, he can be himself warts and all. That is a testament to the love and trust he has in you. It's not the role any of us spouses ever wanted but try to see it as a great compliment to your importance in his life. Eight months ago my husband said "Hold on to me baby because you're the only one I have to hold on to." How I wish he had or could express thoughts like that now. As to what the outside world thinks...the hell with them. xox cs
Oh how your blog today hit home for me, Joan! We are in Michigan (since Sunday). My DH's father died last Friday and the funeral is today. We have already had 2 days at the funeral home and my DH has entertained the whole family, making them laugh, teasing them, teasing me. I'm quite sure they think I am a big fat liar and there is not a thing in the world wrong with their brother. As soon as we get back to our hotel room at night, it is back to Alz and quickly. Looking confused, can't hold the plot of the TV show we are watching, etc. etc. etc. So yes, I know exactly what you mean and I, too, am frustrated. Plus it is supposed to snow here today and I want to go back to Tennessee!
Joan, I know exactly how you feel about Sid forgetting your first date. A few days ago, it was my birthday and Rocky didn’t even acknowledge it … even when he saw all my cards and my children singing Happy Birthday. He used to say my birthday was the most important day of his life. And in a few days, it will be our Wedding Anniversary. I was going to make dinner reservations, but what for? He won’t even know what day it is.
So every day, a little more of him disappears, and a little more of my heart breaks. It’s such a sad miserable disease. Thank you for starting this website so we can all come together to bond and vent. Bless you. Have a good day.
I know exactly what you are saying too, Joan---it happens to me quite often--George is very good at hiding his AD especially from his family who have had the most difficult time of accepting the truth from me. I'm not sure if it's done on purpose, though. I think that they, as AD sufferers, are the most comfortable and relaxed with us, their caregivers, that they know they can be themselves. We are their security blankets...it must be so frightening for them! I know it scares the hell out of me!
I think they get past the phase of being frightened, Bella. My husband is, much of the time, quite placid. Which is why when he became frantic the other day it scared me so much, it was so uncharacteristic of him. I agree that they relax around us. They become much less inhibited in general, eventually.
Been there, done that. He asked me to marry him when we were already married over 50 years. Only I saw it, (of course, I said 'yes'). To others, he was perfectly normal, maybe a little quiet, but doing just fine. You are OK Joan, doing very well, others don't see what they don't see. But we know. It was a good, insightful blog.
Well Joan, You could call me the Drama Queen today. My husband is furious with me because I have spent some money on some new curtains. When they came UPS the other day, he demanded to know what I had spent money on now. When I told him (we are in the midst of a small remodel), he just exploded and two hours of yelling, swearing, and aggressive behavior happened. Yesterday he barely spoke to me, and this morning before I left for work, he calmly chastised me. He is sick of me, he would rather live in a nursing home than live with me, he loves me but he can't tolerate my excessive spending. Please note, I have had to take over the checkbook, pay all the bills and manage all household spending, including the remodel. Yes, we spent a bit over what we thought we would spend on the remodel, but everything is running smoothly and the things that I did purchase were all on sale with no shipping as to help with the costs. Because I did not consult with him about each and every purchase, he is angry. No matter how much I try to explain or what I say, his anger is my fault. He is pleasant to those around him except for me. There's a part of us caregivers that looks inside and asks, "Am I really that bad?, Have I been so uncaring? How could I have done a better job?" until we make ourselves sick. Today I take him to his GP to have his anti-depressants increased (per his neurologist). He told me this morning that he fully expects the doctor to suggest counseling and there is no need for counseling because he is just angry with me about my spending habits. A month ago, it was a cable plug that I wanted situated that made him angry. Thanks for letting the Drama Queen vent......
Loretta, that is horrible, to be rebuked by someone who has lost his judgement and ability to handle money. I admire your patience. If it's any comfort, this stage will pass. Dh used to be upset when I spent money, now he does not notice as long as I don't leave bills and cash register slips lying around.
Joan, in some ways it's better when our LO's can still keep up a semblance of normal behavior in public. From some members here, we have heard how they have had to limit social events and going out into public, when their spouses get too uninhibited. I do understand your frustration, but perhaps his ability to act normally is something to cherish for as long as it lasts.
The thing I miss the most...my DH no longer tells me he loves me, even when I say 'I love you.' I have noticed though that I've started using 'baby' as my term of endearment...how interesting is our subconscious?!?!
Yes, as I was writing the blog, I was thinking that I should not complain. I should be glad that he is able to appear normal, because soon he will not, and I will be complaining about that. But, as everyone here says, it is sooooooo frustrating. He doesn't know his address and phone number, but he appears normal to those around him who are not familiar with him and AD.
My DW cannot carry on a normal conversation. People around her know something is wrong and most of them know what it is. She is incontinent, cannot take her pills unless they are ground up in applesauce, needs help with dressing and undressing. BUT, she still frequently tells me that I am "wonderfull" and that she loves me. With this disease you take what good you can. When I told my doctor in the early stage of the disease that she was becoming more affectionate, his reply was "be thankful for small favors".
Joan, your blog sounded just like something I would write. They seem to know enough to keep quiet around people. People he used to know will speak and ask him how he is. He'll give a great big smile, say" hi" and that he's fine. Actually, he doesn't have a clue who they are any more. We are their security blankets. I have to admit after reading a lot of other posts, we don't have it so bad..............................yet.
Joan, I think the answer to your question lies in your blog. You said no demands were made on Sid, he only did the simplest of activities, he was quiet during conversations (probably to hide that he couldn't follow the content). I'm sure this routine is a far cry from what is expected of him at home--so of course, he was able to succeed in hiding his decline. I agree with Jeanette, I'm glad my husband is able to "fake it" around others--I think it is extending our social life a bit. If he was out of it in social situations, there would be fewer people who want to spend time with him.
Conversely, we are 4 1/2 yrs post dx and finally, a close relative is starting to "get it" because she has seen me cut up his food lately. So perhaps there are some benefits to people being able to witness obvious losses.
Same at our house............Not much fun. But I try to think of our blessings.
I don't take my husband out except with family. He tells stories about people that are not the truth - they are VERY inappropriate, money, personal business, etc. my latest GYN history. Others are very embarrassed by it as it seems to make sense to them. I am usually the brunt of those stories, so it is easier to keep him home. He has started a few "incidents" in the family telling one what another supposedly said about them. All of his statements are inflamatory. He loves to gossip now. He used to be as silent as the tomb.
I don't go out of our area - the last time I tried to go on vacation, he tried to jump out of the car. So all of our travels are within walking distance of our house.Sometimes the children - who live several hundred miles away will come and take us a theme park which he loves.
I don't dare try a plane, bus or train, as he gets very argumentative with anyone who doesn't "do their job" and becomes loud and aggressive. I don't think he would hit anyone, but he is a big man with a loud voice and he is scary to people when he gets like that. I think keeping out life very simple is the best for him.
Because my DH's in-home helper was in the hospital most of the week, my helper has been covering for him. Several times DH has been up and around in the house while she's here, chatting with her, etc. But suddenly there'd be a moment when he wanted info from me, or for me to do something, and he was rude, demanding,bossy with me, and in a blink back to nice with her. When a call I was waiting for and had to take came in just as we were going to get my shower going, and I was hurrying the call as much as I could, He came right up to me and loudly demanded I end the call, because I was holding up my helper. She repeatedly told him, it was okay, and wasn't a problem. I should be so lucky to have him do that when someone holds me up. My helper and I talked about it. She said it's been an eye opener for her, because even though she's worked with a couple of dementia cases before, she had never seen the difference between interacting with the spouse and interacting with others demonstrated so obviously. She had heard about it, but not seen it. She was somewhat amazed.
She said I should get an award for dealing with all his stuff.<lol>
Dagma, You have a lot to deal with, so glad that your children are supportive. I'm worried about travelling too (we have a Christmas trip coming up with transatlantic flights), but so far it has been just doable. There was a bad moment at the airport in October when he stopped moving, just refused to continue walking towards the gate. I sat down with him for a few minutes, fortunately we had plenty of time, and kept talking in a low and (I hope) calm voice. People around us had no idea what to make of it. Eventually he got up and came along. If he were to really refuse, I don't know what I'd do.
Interestingly, his deficits are more apparent to strangers than family, because strangers such as receptionists at doctor's offices and anyone in any office who asks him questions, are immediately aware that something is "off". He usually looks to me to answer the question, and it's pretty obvious something is not quite right when he doesn't know his address and phone number. No family member is going to ask him his address and phone number.
That's an interesting point, Joan. I think it's the other way round with Siem. Family members and close friends know right away that what he's saying is not fact, whereas strangers tend to believe his stories. For instance he tells everyone that his mother and father both died on the same day. This happened to our DIL, but not to him. But strangers believe him. We attended a dinner for seniors last week and a man at our table was talking about his AD wife who has recently been placed. He was trying to refind a social life. When Siem went to the restroom -- almost at the end of the meal -- I explained that Siem is at mid-stage AD and the man (with all his experience) had not noticed. He just thought Siem was the strong and silent type. This was amazing to me, because everything Siem did say was nonsense. I had thought about slipping the man a card earlier, but the table was small, it would have been awkward.
Joan--you are right. The direct question that reqires a factual answer is a tipoff. However, in social situations, most people don't ask that kind of question, and even if they do, it can be finessed by the person with AD. It's pretty hard to fake your address and phone number!
Your comment on the jacket Joan reminded me of last Christmas when I bought my H a sweat suit. He really liked it. He washed it & pulled it out of the laundry basket & asked who it belonged to, maybe my son? Still, HIS family didn't notice anything was off, maybe because they only saw him twice a year? I think unless you are with the person day in, day out, the changes are difficult to notice.
Interesting, and in the "if you've seen one AD person...you've seen one AD person vein..."
It was startling to me how quickly friends who only saw Jeff infrequently picked up on it when we met them for a meal. This happened with two different long-time friends of his on 2 separate occasions. We met, sat down to eat at a restaurant, and--15 or 20 minutes in, Jeff got up to use the bathroom. On both occasions, as soon as Jeff was out of earshot, the friends asked me what was wrong with him. At that point, I didn't yet have an official diagnosis, but it was apparently quite evident how rapidly (over the course of about a year) he went from normal to somewhat impaired. Curiously, once he slipped down that initial slope, his descent has been so slow as to sometimes seem like a 5 year plateau.
On the flip side, it is one of my least favorite scenarios when someone who does not know us or our situation well--but knows Jeff as Mr. Hardware from his business (which we sold to his brother 2 years ago,)--finds out he's retired and congratulates him on his good luck at retiring early.
My DH does exactly the same thing. He, also is is a big man with a loud voice. People realize, after a while that he is not all there and usually just agree with him in the long run. When I try to tell him he's wrong about something he gets mad and says, in his loud voice, to not correct him and blah,blah blah.... I ALWAYS wish I had a hole to crawl into at this point and walk away with hurt feelings and looking like a jerk. After a few interactions people, they get it and I can relax, they get it. I don't really care too much about looking stupid, although it has played havoc with my ability to socialize. Whatever.... This, too, shall end. My point is that they would do almost anything to hide their confusion from others , but then in private let us know how confused they are. Well, then, I see how scared and intimidating this is to him and how much trust he much place in me to take care of him in this scary, scary time.
My husband has withdrawn somewhat from certain social situations but not from all. He can still converse with others and they probably think all is well. But I know differently . . . as he answers a questions or recounts some detail, I know the facts are garbled. Over time I have slowly figured out it isn't worth correcting his errors but every now and then, I slip up and quietly try to set things straight. This evening he was talking with someone on the phone . . . the other person was asking DH questions and he was replying (sometimes accurately/sometimes not) and I just listened. But then the other person must have asked what our son is taking at college and DH (who has a problem remembering exactly what son is studying) replied that son is taking a four year course. (He had that right :) ). Other person must have asked "In what?" . . . hubby's response was "he'll get a diploma at the end". "At that point I forgot about the wisdom of not correcting him and said "No, not a diploma . . . " and before I could say "He'll get a degree" DH started telling me to be quiet . . . he couldn't "listen to two people talking to him at the same time . . . never mind, I can't hear you etc etc". He was starting to get agitated so I quickly shut up. But my heart felt pained for my son who is now a young man but has gone through his later teen years knowing his dad cares for him but isn't fully there for him or aware of the detail of his educational pursuits or sports activity and achievements. Our son told me sometime ago that his dad doesn't always get it "cognitvely". Sometimes I ache for the losses in their father-son relationship. I think that is why I spoke up without thinking tonight and then felt such a sharp ache. I know DH desired to be a good dad yet he has had difficulty communicating beyond surface details with our family. It is frustrating because hubby is proud of our son yet can't remember certain basic facts about his life.