Tonight, I went upstairs for a while and my DH came up, saying he wanted "to see if anybody was still here". He usually says he wonders where I am, but the way he said it tonight reminded me of a little boy. It made me think that perceiving that he is alone might be scary or lonely for him. It has surprised me how willingly he accepts help from me, sometimes even asking for it, as if it's normal for me to do simple things for him. I'm thankful that he has adapted to being assisted with many activities--I thought it would be more of a struggle/battle of wills.
in the beginning after diagnosis i dont think they have the fear or uncertainties yet.anger and denial yes. but as the stages progress i can only imagine after seeing the last alz documentary and what goes on in the mind at times-how dreadful -disoriented and confused things must be for them. the need to cling, or shadow us -for comfort- not to let us out of their sights. how disturbing must that be? we become their human security blanket and any excuse to be around us leads to some of these bizarre statements and actions -. the pouting we are seeing in some spouses *as mine did) for being left alone while we have errands to run is i think another example of the neediness they come to develop for the caregiver. my DH usually will go to sleep much faster even now in early stage 7, if i hold his hand. within minutes hes sound asleep- the need to feel security must be overwhelming at times. indeed adjusting to needs that seem harder each day must be quite scary. having you there to guide him thru these changes and his acceptance of your help, is just one step farther into the disease and shows how much we will need to adjust to the losses at every turn. divvi
divvi, Are you writing anything for Joan's book? If not you should, you are able to put things in a clear, concise and NICE way. I'm sure you could write something wonderful for everyone going through this maze!
Divvi, I agree with "all of the above," and tho' we're not so far down the road as many others, I appreciate the "heads up" and hope I'll be kind and understanding. I'm not always now because he can do so much, I sometimes get upset expecting him to do more than he can. I try to imagine what it would be like, and it's scary.
yes, I think they get scared, well I know for a fact, Bob would always say to me, I`m scared, I would ask him of what and he would say everything, he at times still says that to me, I would just try to assure him there is nothing to afraid of but you can`t reason with a broken button, just change the subject to something he likes and he calms down. Gail
I am sure that my husband experienced the fear and anxiety even before he was diagnosed. When I look back at the two years before his problems became apparent I can see how his self confidence and general happiness was missing. Not totally, but there were times. I didn't put it all together until a long time had passed. After realizing how impaired he truly was I found that if I assured him that he was loved and that I would always be there to care for him was all that he needed to hear. You could almost see the relief in his eyes and see the tension leave his shoulders. I, too, can't imagine what it must be like to watch your memories, your abilities, even your very essence start slipping away from you.
Charlie can't speak to tell me if he is afraid or not, but I see fear and uncertainty in his eyes all the time. I do the best I can to reassure him, but I have no way of knowing if he understand what I say to him.
I am quite convinced that my dh is frightened and anxious most of the time on a very deep level, but at the same time determined not to show it. He wants to be strong and in charge. This is what often causes his anger: it's triggered when he thinks I'm trying to do too much for him, trying to control his life, tell him what to do or what he can't do, manipulate him. He feels threatened and insecure. When he suggests going out for a meal (even if we've JUST HAD a meal) and I try to dissuade him, he gets angry. The point for him is that if I refuse to do what he wants to do, he becomes aware (on a deep level) that he's no longer in control.
When I am being good (and I try) I am bent upon offering all the reinforcement and admiration that I can. It's hard to "admire" the stack of twigs that he has been clipping up into little pieces while I've been pulling huge stinging nettles from the ditch bank and all he can say is that my pants are really filthy. But I do it (when I'm being good). And it helps; if he's feeling good about himself and his "accomplishments" we are both happier.
What a good attitude to take Jeanette. It is better if we work with them as much as we can and keep things on an even keel as much as possible. Makes life easier for all of us. DH will sometimes go to the garden with me and look but will only pick some tomatoes and squash. No beans and no weeds. He used to do it all himself because he couldn't stand anyone else being in HIS garden. Attention span very short, unless it is something that irritates us then they can remember forever - like driving issue, gun issue.
Many many times over the years I'd see terror in my DH's eyes. I tried to find out what it was, but he never shared, I wouldn't know for many years. He panicked so completely when I once left him for my own doc's appt that I knew I'd never be able to leave him alone again. Yes, they are frightened, scared, terrified, who wouldn't be? Just wish I'd realized all of that at the time.
Dave and I had this exact conversation last night. He expressed how frustrated he is because he sees the changes in himself (he's been very angry this week...totally out of character for pre AD Dave), and he told me last night that he's scared. He's never said that to me before. He's scared of his possible open heart surgery, but he's more afraind of the Alz. I just held him (I'm crying right now) and told him I loved him. It was all I could do. He kept asking me to not stop loving him....as if!
Diane, I remember havinag your tears--it's all you can do is hold them, love them and keep them safe. DH would absolutely glow when I told him I loved him. And I always did.
I seem to remember reading recently about some sort of technology that simulates what it feels like to have AD. I really wish we caregivers could have access to something like that--I think it would help so much if we could have a simulated experience--to let us know what they are going through.
I know my husband is very scared. I used to think it was anger because of his reaction but when I stoped and looked at it, it is fear. He doesn't see that there is anything wrong with him. He just thinks he has problems getting his toughts out sometimes. I'm convinced now that the majority of behaviors he demonstrates are fear based (e.g. following me closely, calling me for every decision, threatening to kill the bad guy when he can't find me, etc.)
Wow! How freaky is this? Sid and I just had the same conversation. He is noticing decline, and he is very upset about it. Not angry, raging, and screaming anymore. Just very sad and I believe also scared. For the first time since the diagnosis, he is once again saying how sad he is that I have to be put through this.
I don't want him to be declining, and I don't want him to hurt so much, but it is much easier to care for him and love him when he is in this state than the hateful, angry, screaming, raging mode.
Something in the water??? DH is doing the same thing recently. He talks about is decline and is upset about it too. Not angry either, just frustrated and sad and keeps telling me he doesn't know how I do what I have to do to keep things going; how he's so happy I love to drive since he can't! It's all so very sad and the worst part is that we can do nothing.
I do believe my husband is very scared at times. It's in his eyes. It is so difficult to see that look in the one who used to be my rock--never seemed to be afraid of anything--I can only imagine how it must feel for him. Not sure I would be able to handle it if I knew. He hasn't actually said that he is scared, but the other day, he looked so sad and scared, and asked me, "What would happen if I got sick?" He seemed to relax when I re-assured him that I would be here and would always take care of him, because I love him.
Reality set in for Art this last weekend. We were at my family reunion in Eastern Oregon. The passenger seat in the MH was not locking in place. (it was fine when we traveled over, so not sure what he did to it). This happened a few years ago and he fixed it with no trouble. He couldn't figure it out and had no idea. He realized just how much he couldn't remember when it comes to fixing things he could in the past -he was my Mr. Fix-it. He finally cried and had a pity party. I told him go ahead and let it out so he could get back to living the best he can. I told him he is still able to do a lot of things.
He knows his future - he watched his grandfather, uncles, and dad die of this disease. His younger sister he knows is also on this journey. I am sure there is a lot of fear - fear of loosing life; of being a burden to me; of me killing myself taking care of him like his mom did taking care of his dad.
I waited too long to order his galantamine so he went yesterday and today without it. Today he had an appointment at the sleep clinic (miracle is he got in tonight for the study). The lady asked his social security number, birthday, and jokingly asked for today's date and our anniversary and he remember them all with no problem. When the pills came this afternoon I really hesitated giving him them. Others have remarked on how their LO's thinking became clearer after going off them. I asked Art if his mind felt clearer - not foggy and he couldn't say. He never has been one to analysis his thoughts or feelings.
Divvi, What you said was perfect. Kathryn and I went to visit some freinds in their home recently. Kathryn got tired and went to lay down. After a little time went by I noticed that every so often she would come out and ask me if I was ok. Thinking back now I think she was checking to make sure I was still there. You have provided me with a better understanding.
Then and now, I have seen stark terror reflected in Lynn's eyes. I have seen him reduced to tears, trembling in fear. I have seen him stare off in the darkness for hours on end, knowing he was thinking of what he would become. Clinging to his pride, he fought my help tooth and nail every inch of the way.
Yet, I have also seen the reflection of his love for me dancing in those eyes. I have also seen this man stand strong when others surely would have crumbled. I have seen him relentlessly fight for what he believed in. I have seen him give unselfishly and love unconditionally. Alzheimer’s has stolen his mind, his memories, his very essence….. But they live on through me.
My dh was always a very private, independent man. Never wanted me to wait on him. Even up to 3 months ago, he fought my help even when he could not do it himself. Now I see the fear in his eyes and he easily accepts my help. This breaks my heart because he is defeated. He looks bewildered at times. Confused. Scared. I'm certain not seeing and having to totally relying on his limited hearing to identify who was approaching him is awful. I have finally gotten the nh to agree to no more physical changes-no new aides, no new room, no new roommate. I am trying to allow for as much stability as possible. I go, I feed, I leave. For the 2 hours I am there, I try to think of things to say. He used to be able to mummer "I love you" but this has all but disappeared. It is so hard to have one sided conversations.
Nikki, what you wrote in your second paragraph was beautiful! I too have seen what you have described--in my husband's eyes, and you are right--his very being will live on through you, as mine through me. What a wonderful way of understanding you have.
I have been trying to give my husband a little confidence by sending him to get an item in the store, or let him go off with a friend when we are antiquing. Yesterday he told me he gets anxious when he is alone or with anyone but me - afraid they won't really pay attention to him and he will get lost. And we are really at the very beginning compared to most of you. I was glad we could talk. I don't think he is afraid of the future [yet?], just not too sure of the present!
I have asked my DH if he is scared or bothered by what is going on with him and he says "No, I don't even remember how I am suppose to feel so it doesn't bother me." I am not sure what he means entirely but my guess is that he doesn't know what he is suppose to feel and whatever it is is whatever it is. Does that make sense to anybody?
My DH gets a very blank look on his face when we talk about things that have gone on or happened. He completely forgot that our kids were camping with us over Memorial weekend. He completely forgot that I slipped on water and fell on my (replaced) knee a couple of weeks ago. He gets scared when he looks for something that is "right before his eyes" and doesn't see it. Yet he still has the diagnosis of MCI. When does that diagnosis change? He seems confused much more often these days. I have enjoyed having the summer off to be with him (most of the time). I go back to work on the 14th of August as a Speech Para at our local grade school. I mentioned to him tonight that I wished he had more hobbies to keep him busy and he took that as an attack. Wasn't pretty for awhile but I did my bit and apologized for upsetting him. I am sure he won't even remember in the morning that we had a discussion let alone about what! Sheila
I think so too bluedaze. So far tho I can't seem to convince the doctors that he is further along than they think. His neurologist isn't the easiest man to talk to...I believe his origins lead him to believe that women aren't very significant. Would like to get him to another neuro but our insurance demands a referral from family doc and that hasn't happened yet. I've read alot on here that getting a diagnosis isn't easy.
He DIDN'T remember our "conversation" last night and was just fine with me this morning. That's hard too...I was still pissed and he wasn't. Thanks for listening to me. S
I've noticed several more things since I started this thread. Often now, when he hears something on TV, my husband will say "That is scary." Also, when I'm not directly in his sight (i.e. in the bathroom), he likes to wait for me nearby--for example, in the bedroom. He will sometimes say "Don't forget about me". It melts my heart.
my dh would always tell me he was afraid mostley about some guy who wanted to hurt him, I would tell him I took care of it and no one will hurt him , it seemed to calm him down and I would change the subject, when he was home he never left my side and would call for me in the night and say he was scared. Gail
Mine, when watching TV, will comment "He shouldn't do that" if someone hurts someone else. Yesterday someone said something about marijuana, I don't remember what, and he said, "They're talking about something they shouldn't talk about..." Inhibitions going down the tubes!
Art never use to watch news or really care what was going on. Now he watches Fox alot and gets very upset with what is going on. He fears this country will go down the tubes and our grandkids are left with a country deep in debt. He fears what all the changes if passed will mean to him and what future he has. I just know there are a lot of fears. The last few weeks I have tried to turn it on something else. Of course, each time he hears something it is always the first time!
I just turn on Home & Garden and nobody gets excited or worried. After he goes to bed I try to catch up with what is going on in the world and and I do find a lot of things to worry about.