I am in need of a pep talk. I am sorry to come to complete strangers, however, I have no one else to turn to right now. I think I am living with Dr Jekyll & Mr Hyde, for past few days my husband goes from trying to make not funny jokes to a bad mood. Since today was a nice day I thought I would take him to play golf, golf clubs were in the car & I thought we were ready. He had his flip flops on, I made the mistake of asking him if he was wearing those or his tennis shoes, he only wears flip flops around the house. I thought this was a simple question, however, he thought I was making a big deal out of it. Said he was tired of everyone telling him what to do. Well, the only person who has any dealings with him is me, so I guess I am everyone. Then he wouldn't get in the car, told me to go alone. Like I ever go anywhere by myself. I akk him again if he wanted to play golf, NO! NO! NO! was his answer. I actually went for a walk alone, however, he didn't even know I was gone. Asking & praying for strength & patience. I hope God hears my prayers. My friends and I used to talk that there were 2 kind of marriages, 1 where the couple was in love & the other where they just loved each other. I was always one everyone thought was in love, sadly, I have become one that just loves my husband. Thanks for reading. Kadee
This I do understand. (btw, I think there are other types of marriages where not much love of any sort can be found.) But yeah...I used to think (of our marriage) that if anyone could hang in there thru thick and thin and keep the relationship strong, we could. Because that's how good it was. AD is one of those factors you cannot possibly anticipate, and its effects completely change the parameters of what you thought you could manage in your marriage.
The only thing you can do (and it only helps a little) is do your best to not really care what kind of mood he's in. You just operate on your own plane, keeping your own counsel, being your own best company with absolutely no expectation whatsoever that your spouse will bring anything positive to the table.
It does take a good bit of emotional distancing...and I sometimes wonder if this emotional distancing that I do can be a good thing. Sometimes it just seems wrong, but--unfortunately--it is the only way to manage, I believe.
Aww, Kadee, its like this in the beginning stages o this retched disease. many will tell you and you can read today how many of the newly dx'd spouses here are dealing with exactly these same type of issues. the jekyl/hyde is one of the first to surface it seems. you need to take a deep breath, and back off and give him his space and retain your own as well for sanitys sake. i remember all too well walking around on tiptoes now to displease. anything can set them off and you being the closest will become the target. some wellknow side effects of some of these miracle drugs actually do cause the unwanted aggitation and anxiety many of our LO have. talk to his dr on a reg basis and let him know how you see his day/day behaviours. sometimes tweaking the meds helps alot. my DH was on zyprexa and it zoned him out but was necessary for a some months during the aggression and sundowning stages. give yourself a pat on the back for being there beside him in his needs and know that there are many here who will applaud your efforts. sending you hugs, it never hurts even from strangers, none of us here are strangers in my book, we have a connection no one else has. divvi
this is what I have been going through for a very long time. Possibly 5 to 8 years. Although the last 6 months to 1 year have been much worse or I should say happens much more often. I posted a question yesterday about how to handle it when he "loses it" over financial questions and issues. this is the one area where he has the most difficult and he is to the point where he wants a "yes" or a "no" answer to every question related to money and finance. Other than this area, he is pretty "normal" and is working again this construction season. He has no problem with measurements and doing carpenter work with a friend. We deal with the mood changes and the anger associated with it. Practically anything will start an episode, such as the flip flops did for you, and anything I say will make it worse. I keep hearing that I am the problem and if I remembered things, speak so he can understand me, keep conversations simple, didn't offer explinations when they aren't needed, etc. that he wouldn't have any problems. It makes me feel really bad then there is an argument because I do still love him and want to help him. However, how do you help them and make things better if they "fly off the handle" at practically nothing. It seems like everytime I gets my hopes up about doing something, like your golf date, a problem happens and I'm by myself.
I wonder if part of his problem was knowing that he couldn't play golf as well as he once could? That's been very sad for us...to move to a great retirement community just as my DH couldn't really play golf anymore. We went from playing 18 holes to playing 9 holes to playing on the executive courses, and finally to playing one last time on his birthday which was not good. He just couldn't even stand and hold the club as I tried to show him. It's so not fair!
Kadee, we aren't complete strangers ... we just don't know each other's names. But aside from that, we have a close relationship, and we're here any time you need us.
I suspect FLgirl was right, much of his reaction was due to knowing he is losing his abilities. That is very sad and scary for him, I can more than understand lashing out. Of course, it's so terribly hard on you, because you're trying to deal with your fears and sadness, and then the one you love uses you as a target for his frustration.
divvi is right, sometimes the AD meds can cause agitation and irritability. Think about having a little chat with your husband's neurologist about changes that you've seen in his behavior. The neurologist may be able to "tweak" the meds to improve your husband's attitude. It would be better for your husband, as well as you, if there's something that can be done to help him.
I wonder if Lewis Carrol had a relative with Alzheimer's when he wrote Alice in Wonderland. Poor Alice was the only rational one in a topsy, turvy, world. The only suggestion I can give is to try your best to enter your DH or DW world and guess at the reason for the behavior because there is one that the loved one is reacting to. they may not understand the reason for their behavior either and probably it has nothing to do with the incident. they will forget and not remember the incident long before you do; that is the curse of still having a functioning memory and cognitive thinking. I have had to turn from my DH as my lover and now he is my beloved person who inhabits my sweethearts body. It is much more painful to live with your husband if you are still operating with the same emotional attachment as that of a lover. I can say this stage will eventually end and you will not be so stressed, only the grief and sadness will remain.
Thank you dear friends for replying to my post. Some days I just want to run away. I just didn't evision my life at 58 years old being like this. About the time I think I am handling dementia, dementia starts handling me. I did ask him if he wanted to go for a walk, he did. He is now in the garage...where he spends most of the day messing with golf clubs. Then this evening after eating he will fall asleep around 8:00 in the recliner ( he will not go to bed alone) till I wake him to go to bed. Thank you again so very much. Kadee
kadee, It's safe to say that none of us visioned our lives like they are. Maybe we all had different dreams but most of us have had to let go of our dreams as they were. And emily I totally agree that most of us are learning new parameters... whether we want to or not. Almost everyday the thought crosses my mind that I want to wake up and make this all not be real. But of course that doesn't happen. I read every post every day but sometimes the total collective sadness of posts gets to me. At the same time that I come here for support, hearing about the experiences of others also brings me great sadness and anxiety for the future. Some days, I am very saddened after reading. I am torn with the need to learn from all of you going through this with me and almost frightened by what I will learn. Does that make sense?
It absolutely makes sense. I, too, look forward to logging on and reading all the posts. I am always amazed at how close to home many of them come. When I read about early stage caregivers, I am so sorry for what they will go through. When I read about those caring for spouses in stages farther along that we are, I am so frightened and sure that I can never deal with all that. And I am always so sad that we have all had to lose our dreams and our loved ones to this terrible disease. But I feel like I am reading messsages from an extended family and it has saved me from complete despair more than once. The advice, support, and resources that have been provided by this unique group has been truly wonderful!
My DH has been on Aricept since last October. He knows he has AZ but until a couple of days ago I thought he understood the things I had told him about what can happen. He decided that not everyone will go through all that "stuff" and because he hasn't shown any major changes I think he is deluding himself that it won't happen to him. I have decided not to tell him any thing else. Ignorance is bliss!!!!
Kadee-You are so right, this disease changes your relationship from in love to loving each other. I love my husband, I remember who I married; however that man is gone. I will continue to love the person who has taken over his body though. The mood swings and the tempers are so common. It is also so hard to not feed into them in the beginning. And you are not talking to strangers, unfortunately we are all way too familiar with what we are each going through.
Jean, you're right. Ignorance is bliss. I know my husband doesn't realize what's ahead. When I read what most of you are going thru, I realize my problems now are nothing.
We lived in awful emotional conditions for a year and a half. It came on gradually - my previously polite husband became crude, rude, insulting, wanting me to leave - no physical threats. He said things to me I never thought would come out of his mouth. He was diagnosed as MCI at that time but I felt it was more. We had memory issues too, but the rages and moods that went on and on were so hard to deal with. I can't tell you how many times therapy was suggested for us because I had a problem. He only did this with me and looked good to everyone else. He went to work one morning as mad as he usually was, teeth clenched, hands forming fists, face looked like a storm - that was his usual demeanor during that time period. That same day he came home and it was like the sun was shining. He was so sweet, caring, couldn't do enough for me. I didn't know if it was going to last a minute, a day or what. Well, that was in October and he can't do enough for me. Keeps apologizing for his past behavior. So, maybe this is another stage, but thank goodness the other one is gone for now. I was about to lose my mind always wondering what did I say or do wrong, what could I do to stay out of his way so I wouldn't upset him. If not for these boards when these folks "normalized" it for me in the framework of this awful condition. I felt validated here where I didn't any where else during that time. It was just awful living everyday with such anger, rage, etc. I felt like I had to be like a little mouse and creep around so he wouldn't notice me and I might set him off. I feel this want last forever, but I sure am grateful to have him back - for a little while. Hang in there - it is tough and don't doubt yourself. You don't have energy for that. Good luck
Kadee, Bless your heart, I can so much relate, Anger over the smallest of things; shaving, bathing, clothes, shoes, I didn't say that, why does everyone bug me about that; all these things that annoy them. And I know it is hard to emotional distance ourselves but we have to ; this paranoia can be tough. And yet we keep trying to please but... Yes and God hears our prayers and keeps telling me HE is in control but its hard to let go. HUGS to you PAT
Again, Thank you to everyone who replied to my post. Hopefully, today will be a better day. I feel God led me to this site, where angels are waiting to comfort me. Kadee
To all of you above...it is so wonderful to be able to start the day knowing that others understand your feelings so perfectly. Friends and even family do not want to hear any of this, I have found, so I only tell family incidents i feel they should know. Yesterday my son was here for lunch (he lives 1 1/2 hours away), and was questioning me casually. When I gave him a couple of mild incidents, I could tell he was in total denial.."I just can't imagine dad ever doing something like that!!!" I thought, great, now the kids will think something is wrong with me as their dad is always telling me (it's my problem, not his!). I'm not too sure he was convinced when he left.
I know this is the "easy" stage, but reading about what's coming might better prepare me...some of it, I don't know that I can ever deal with.
Kathi , Many of us can relate to family members either not seeing or being in denial or just plain not experiencing real everyday life with our LO. Our daughter and grand daughters came for a week end visit. Their dad really held it together for the two days they were here. Amazing. Other than being tired ( which has been on-going for years) they just sat around and watched TV and movies. Oh sure, there was the usual repetitive questions and not following a plot but seriously he seemed almost like his old self. I swear to you that within one hour of their leaving the house my husbands confusion was at an all time high. He met me in the hall asking what was I doing there. Had I just come home? He didn't remember that the kids had been there and frankly didn't believe me that I had been there all day!! It is almost not worth trying to describe what this disease does to someone. You have to live with it daily and even then you find yourself second guessing or doubting things. And one thing about stages ... just like the disease has plateaus and steep declines so do our abilities to handle things. I think all of us "fear" the future and yet most of us are further along in the process than when we first started having fears. I handle so much more now than I ever dreamed of doing a year ago. And I expect that in another year I will be handling even more... I learn everyday from the voices here....
This is not the easy stage. In many ways this is the hardest part of the disease. Our LOs will look almost normal a lot of the time. Some outsiders won't believe what we are telling them. Sometimes our kids won't believe it.
I got lucky. My daughter saw my husband for almost a week last Thanksgiving. By day 4 he was beginning to fall apart. Almost all of her friends have a parent, grandparent or aunt or uncle with dementia. They have all been through the denial stage and they won't let each other do that anymore. They know better.
When I went public here in my 55+ community, I also did not get denial. Basically we had stopped doing the social things and my husband had been just odd enough. And, once again, it turns out I have neighbors who have been through this journey with parents.
I also didn't have the fight my way though the medical establishment over this. I've been through that for a medical problem of my own in California. Took me a year to get to the cancer surgeon. I got lucky. I survived.
But when you see that perfectly normal looking person who just came home from an hour (or two) of walking, it is hard to believe that you are dealing with a person who has dementia. But you are.