Whoop didi do!!! I don't even feel like I am married! All I feel is depressed!!! I hate my life with a passion, I don't do anything I don't go anywhere, and do you think I am going to get a gift! NO!!! What I really want to do is drink a lot and go to sleep for about..a long time. No I have nothing to drink in the house or I would drink it and no I am not going to do anything stupid(at least I don't think so) 17 years down the toilet, he doesn't even know it. How do I get off this stinkin roller coaster? I am sorry but this really stinks. Once again my H is asleep with no cares in the world, just as oblivious as always and I am living in hell!
(((Hugs))) Deb. Go ahead and vent, rant,whatever you need to do. You are not experiencing anything different than many of us have except for me it is 42 years. Length - short or long - doesn't make a difference in the hurt we feel and wonder what is next?
Hi deb My DH still remembers that I have a birthday and we have an anniversary and Christmas and I wondered what I could do to make those times easier for me when he no longer remembers. I decided that, if I can afford it, I will make arrangements with a flower shop to send me a small arrangement each year for those dates with a card written by them from him. I will try that to see if it makes it any easier. 42 years for us. My birthday is next week and I bought two bird feeders and DH said " happy birthday, that's it for this year" I know he didn't realize how mean and uncaring that sounded, but it still hurt, so I may as well order flowers for me as well.
Deb, I am sorry. 29 years for me in a month. My DH hasn't remembered in at least 5 years. I just quit celebrating it. I don't feel married anyway. Yesterday he was going to divorce me, do I guess he does remember we are married. Haha. I am fortunate to have 2 great daughters and family that make my bday special. Happy anniversary from me with hugs.
Hugs to you Deb, and I am so sorry. My only consolation is the emotions, at least for me, have gotten if not better at least not worse over the past few years. The 25th was the worst, because that was the first one he had no clue. Not just that he didn't know what day, but that he didn't know what an anniversary was. We had our 30th this summer, but I was busy taking care of my mother who was moving into an assisted living facility. (The "blessing" of dealing with young-onset dementia is that is prepares you for dealing with aging parents.) But now my anniversaries, while not "happy", and I still get sad when my friends post photos of their wedding day on facebook and cannot bring myself to do that yet, are times for reflection of the good years we had and that I am fulfilling my marriage vows. So hang in there and know there are many people on this website who actually do understand how you feel.
I agree with Charlotte. Go ahead and let it out. We have no objectivity about what this does to us and our lives. Even now I'm suprised when some of the people around me say how sorry they are that the nightmare I'm in seems to go on forever.
There are a lot of aspects to how this disease mangles both our lives. One of the most hurtful may be seeing our spouse lose the ability to care about us. Some seem to hang on to that a long time and some seem to wrestle with their condition by lashing out or withdrawing.
What I know is that living through the reality of their decline is a truly awful experience; but, feeling her decreasing interest in how I am cut deeply even though my mind understood what was happening.
| believe it's one of the very hardest things about being an alzheimer's spouse and I observe that very little is 'discussed' about that on these discussion boards. Either a spouse finally speaks out about it, or the positive remaining personality is 'discussed'.
I don't believe how it is portrayed on these boards for a second. I believe when you excavate through all the layers of this disease at the very bottom at the lowest layer you will find the hurt of the soul of the caregiver and it will be littered with the moments you now express. The searing moments we each felt what we are losing.
Aw, deb I really do feel for you. My DH and I have been married more than 37 years. Wolf is right, the decreasing interest of our LO's in their spouse cuts to the bone and although we may understand why it is happening (do 2 year old children care about anyone but themselves?) it doesn't make it any easier. And Society is so built around happy traditions like CELEBRATING birthdays and anniversaries that when we can't do any celebrating because we have nothing to really celebrate we feel even worse. Hugs to you
I understand deb. I had my anniversary in the beginning of the month. I just realized that is what has put me in a swirl of downward emotions. I have felt such sadness, despair and hopelessness since then.
Wolf, you are right on target. I agree, underneath all the other things we discuss that affect us lies the hardest aspect... The realization that "he's lost that loving feeling".
I think it has to be that way because we have to survive. We can't afford to allow ourselves to feel our emotions fully too often and especially for ourselves because we have to continue.
Maybe it helps when we remember this is the last thing they wanted to have happen too and this is the disease hurting you both. My wife feels the same way about me as when she was last in charge of herself. She just can't access it.
Hey Deb I hear you. My anniversary was last Monday, 33 years, and of course nothing but it is now our "normal". I did have drinks in my room by myself and I did go to sleep and the next day got up and got on with it.
I think that along with them losing that 'loving feeling' so do we. And thank goodness we do or we would be a raw bleeding creature that could no longer function. We have a job to do and we do it. Yes I want this roller coaster to stop so I can get off too.
You are right Deb. It all stinks and anybody who tries to sugar coat it, is not living in the real world of an Alzheimer's spouse. It seems hopeless and is very depressing. I just had my 62nd birthday on Wednesday and my DW didn't have a clue. I sure as heck don't blame her. I know that it is the disease. It seems, we cry out and nobody hears. Why doesn't everyone understand? Why doesn't someone help me. You have every right to yell, kick, scream, cry, complain! It does seem that this is a never ending roller coaster. I know that my DW would love to get off this stinking roller coaster too!! My love for her is a different love now. It is a caring love, a love of understanding and compassion. Maybe some day, we will find the other kind of love again but in the mean time I guess this is what we will deal with. I think we will know, when it is time to get off the roller coaster ride, one foot at a time.
We have never really celebrated our anniversary since about 1984. In 1985 he was diagnosed with 'detached personality disorder' but I now believe it was a sign of what has come. Anniversaries and birthdays long ago just became another day.
My daughters and granddaughters keep special days alive for me and DH joins in the celebration but doesn't know what we're celebrating. I feel especially sad today and it's not because of any special days, just because of what we're all going through. Someone suggested doing something outside. I do believe that helps but it's hard to do when we have all these duties inside and can't leave them alone even to go for a walk. Oh my, and dark winter days are coming.
Wolf, I have always been one to say what I think and what I am feeling. Most people don't like that about me because I step on toes and really all I am doing is saying out loud what people are already thinking. For instance...I use to say to people that I thought were my friends, "The only way I can get out of this situation is when he dies." Now, what is wrong with saying that, NOthing...if you are someone who tells it like it is ,but I am finding out that people don't tell it like it is and they feel that I am a terrible person for wanting him dead. Well, I say that any caregiver that does this full time is going to eventually want the person they are caring for dead they just maybe won't say it out loud. Whether we like it or not that is the way we are going to get off this roller coaster and on with our life. Plain and simple.
Is there a possibility of being TOO HONEST, most people will say yes but that doesn't make any sense. That's like saying it is possible to be TOO PREGNANT! Unfortunately I have learned the hard way that in order to survive civilization I have to "curtail" my honesty so as not to injure any ones psychi and disrupt the balance of nature.(sarcasm LOL!) I have a girlfriend that says she likes taking care of her husband, who has been in a wheelchair since 5 years of age. REALLY!
People say there is no sense in making matters worse by thinking about it, OK! that is like saying if I have the flu and tell myself that I don't while I am using the last tissue in the box I just opened 20 minutes ago, that I will not have the flu because I am thinking positive. Now dwelling on negative things is different, your not lying to yourself your just letting yourself your not going to dwell on the truth. Now I am going to get off my soapbox. Thank you for listening to my lecture! haha
Charlotte, did the detached personality disorder come with the dementia diagnosis or was it separate because I have a feeling that my H has had that all his life. He has never been attached to anything or anyone. I don't even know how he was able to fool me long enough into marrying him with so out of touch he is with everything.
he was diagnosed with it in 1985 as the reason he was able to have the affair with the minor. He knew somewhere it was wrong but never tried to stop nor was he ever sorry for it - saw nothing wrong. He went on after counseling and appeared normal but he has never been lovable. He never bonded with the kids when we adopted them in 1978 nor has he ever bonded with grandkids. We were more like friends living and existed together.
He was not diagnosed until 2008. But I wonder where they say it can start 20 years before symptoms are evident if it was early. His sister is a blonde and we always called her a ditzy blonde. In 2006 when we were back in NH to see her, a year after her diagnosis, she was telling us she believes it was not ditzy blonde but early stages of AD. I have wanted to ask his neuro if it is possible but hard when he is sitting right there. Maybe I need to put it in the list of changes I give her - good idea!
I too talk about him dying or wanting him to rapidly go through the disease now that he is loosing more ground (slowly but still loosing), or that I will wake up in the morning and he will have died during the night. People don't like it but too bad. I was talking with a new neighbor the other day and she was mentioning Art repeating a couple times while they chatted - he chats with her when he takes garbage out - and I said 'you are lucky it was only twice'!. Conversation went on and she thought Alzheimer's was only memory problems so I set her straight.
They are many misperceptions of AD and people who criticize the spousal caretaker are ignorant. They have no idea all the burdens that we carry day after day with no end in sight. It's not just a memory disease (which most believe), but it encompasses so much more. We are working under unbearable stress night and day...sleep deprived...self-sacrificing our lives for the life of isolation and criticism. We are the ones, who I believe, are the true sufferers of the Alzheimers Disease. We are the forgotten caregiver
Amber, Deb, and Charlotte, I really don't give a flying flip what people think. I know that I am doing the very best I can with what I have to deal with. If they (the critics) don't like my decisions let them pack our husband's gym bag and have him for a week. Guaranteed they will have a whole new respect for us. Do we have any takers? Heck no!
The only good thing about this disease....yes, I believe there's one good thing --- It reveals the true character of people. We learn, early in the disease, who are real friends and family. So long "fair weather friends"!! Hello...loyal friends and family!
This is a powerful thread (is that what it's called?). I see & hear myself in all of you. I knew when I celebrated (?) my 70th birthday, that this was the way it was going to be. I think I've dealt with those things pretty well ever since, although there is still an element of hurt. We had our 47th anniversary in July, of course there was no recognition. I went out to him on the porch, kissed his cheek & wished him happy 47th anniversary . "Oh,is it? 47 years - wow". My main thought is that three more years will bring our 50th, if we're both still here - it hurts already to think that it will be just another day. I think I'm projecting too much into the future!!!
Mim, what choice do we have!!!! The present is too bleak! I see nothing wrong with thinking into the future, the future is all WE have! Yes, we have to live in the present, we are not stupid, we know that. I don't think anyone else will EVER understand what we are going through. The girlfriend whose H is in denial about my H...he is 73 years old and has had 3 heart attacks and 2 strokes and his father had Alzheimer's. He is a walking billboard sign for Alzheimer's if I have ever seen one, but neither of them believe in dr. or medicine. Boy do they have a rude awakening in store! Note to self...I will have to make sure I don't say I told you so to his wife. She is my biggest critic fan! No one should judge anyone unless they have been in their shoes but it never fails the ones that want to criticize the most are the ones who know the least! (Funny but not funny)
I see nothing wrong with honesty even if it is brutal. It they were going through the same thing we are they may be in their rooms hoping he never comes out! Yes, I also sigh big time when I hear him go out into the bathroom. Any one that doesn't understand that depth of despair has no empathy or heart. I think this is the one biggest reason why I love this support group because even with all the differing people and personalities we are ALL in the same position and we ALL respect one anothers right to feel how we feel when we feel it.
I think that many of the comments on this thread are really nothing more than affirmations of why no one really knows what our lives are like except other spouse caregivers dealing with Alzheimer's Disease (AD). How can others really know? When I am with other spouse caregivers, we frequently share thoughts that non-AD spouse friends might find cruel, repulsive, selfish, or whatever. But in a group of fellow AD spouse caregivers, we all nod our heads because we have all had similar thoughts. In my most recently published article, I mention that I now join up to a dozen current and former AD support group members for lunch. All of our spouses are now either in moderate or severe stages, or have already passed on. Just as we once did in our formal support group, we continue to support each other. As one member of this informal group recently said to me, “This new group just seems to scratch every itch I have!” Well, one of those "itches" is the desire to be able to speak openly about what we are thinking with the certain knowledge that everyone around that table understands ... and, most likely, has felt that same way at one time or another. I say things there that I would never ... and could never ... say with friends who have no concept of what my life is like now that Clare is nearing the end of stage 6. How could I expect them to "get it" as fellow AD spouses do? I simply can't. For me, it's been 46 years of marriage ... but no celebrations for at least 4 years. And when I turn 67 in December, it will be about the 5th year without Clare's recognition or awareness.
About talking with close friends I've really gone around the block. At first I expected a great deal of understanding from lifelong friends who were so close we all talked about our 37 years of closeness. But they couldn't face it and they didn't want me to talk about it. I ended that but then unknowingly closed out our other friends because frankly it hurt so much that I didn't want to risk more of that.
Some asked about her, one asked for details, her family was great, mine was crap, most people just didn't bring it up and got very uncomfortable when I talked about it. It wasn't paranoia on my part that these things were going on.
This year I've had suprising talks with four friends and have told everyone that I understand why it is so difficult to talk about - because it is. I don't see that myself as an AD spouse for the reasons acvann touched on. We're on the same planet but no longer in the same world we used to share together. My world is what changed.
It was refreshing to push back against initial denials or deflections with long thought out explanations of why the truth is the truth here. She is alive yet no one asks how she is now. Everyone visited all our cancer friends. No one visits my wife.
The difference has been night and day since I stopped expecting them to reach me and instead truly understand I reach them here - not because they are garbage; but, because that is how things truly are whether I have AD in Honolulu, Seattle, Butte, Atlanta, or Newark.
When eight of us got together for dinner and I arrived last it didn't take long to get a drink in my hand. I raised it into the air and said "Dianne's doing ok thanks for asking." And one of them said I was an orifice. But I smiled and made a toast to good friends here and absent (the friend I brought lost her husband to cancer five months ago now; she just turned 56).
I'm not being a smart ass. There's no one to forgive and nothing to be ashamed of and nothing to hide from. I decided to help them face it once I lost most of my frustration that it has happened and I did that because I don't want to lose the precious things I still have in life and I've never had perfect friends anyways. Heck even I'm not perfect.
Eventually things that happen to you either assimilate you or you assimilate them. I'm done with judging. I have a blueberry pie here I have to get out of the oven.
Not on your life. I still have parts of the roof of my mouth screaming to let it sit for two hours at least. It's a frozen pie you bake at home. I don't make pies. I eat pies. But I lost my pie maker.
Unless you've been a spouse /caretaker of an Alzheimer patient you will never get it. NEVER...books don't replace on-hands work in the trenches!
I truly got a pain in my ass when this "so and so" greeted me in the local grocery store asking me how hubby is doing. She then precedes to tell me (the 24/7 caretaker) what I should be doing. Excuse me, but you haven't seen me in 6 months and have never met my husband, but you have it figured out! Well, it must me nice to be so darn flippin' smart! If you are so darn caring and know what I should be doing why don't you and your Pastor husband come over for 1 hour and watch him while I run some errands! Please I don't need your advice. Now BUTT out Miss Smarty Pants. GRRR
lulliebird, all I can say is "slap fest" I am working with a married couple of my own and they are the SAME way! I hate Hate HAtE it. I know a good way to get rid of them though...ask them to come over and give you a hand with something or better yet ask them if they will take him for a few days if they think there is nothing to it. DOUBLE GRRRRRRR!!!!!
Or hubby belongs to his "Lions" club that help others. Do you think anyone of them have ever phone and ask hubby if they could pick him up to take him out for coffee or even call him. The most I get is if I meet one of them in the grocery store is "how is he doing" and they then walk away before I have finished answering them. another GRRRRRRRR!!!!