"The one we need to talk things over with can't talk things over"- flo39.
At least I waited until the second day of the year to have my first meltdown!
Yesterday I felt so overwhelmed that I lashed out at people who have been nothing but kind and considerate to me.
I was very angry, but not with any of you. I was angry with H, and I guess I don't have to explain any of that to anyone who posts here. I was angry with my parents, who are now focused on two things I find upsetting beyond. One is that H is "not as sick as he pretends to be", and this is based mostly on his age. OK, sure, he is pretending to have dementia. To what end, to lose a career 20 years in the making? They also want me to be focused on marrying again, which I don't ever intend to do.
I wrote in the thread "ALF- what if spouse refuses?" about my beliefs, right now, I guess that could change, about my hesitations pursuing guardianship and I thought maybe someone took offense to that.
But most of all I blamed myself for sharing here that I am needy. I realize I have said it in posts more than once. I feel guilty about being needy and I don't know where that comes from; the guilt part.
"Cling to one another"- Shirley. Although everything I have said on this forum is true, I have not said everything. Trusting and clinging are scary to me. Sometimes I just withdraw and sometimes I do what I did last night.
But, you and your posts have made me feel more than welcome here. You have validated my pain.
I will never claim to be the most stable person in the world, but I certainly need to get over myself and remember this: "there always has to be a last comment"- Emily.
Oh my I know I can feel needy. Some days I wish I could just hand all this over to someone else to take care of everything. Right now it is 2:38 AM and I am getting ready to go out into the cold, dark world to do my paper route. I hate having to work in the mornings and am so tired of it. But what do you do? And meltdowns, we all have them.
If it helps my DH was dx at 58. Not sure how young your DH is. But age does not seem to matter, it can hit at any age :(
O Abby I am so glad you came back. I just saw your posts been so busy with Holidaze, children, dh, grandchildren....meltdowns are good, so human. Now if we were robots we could adjust without emotion. Since I am an orphan my parents cannot put pressure on me that would be too hard. My dh's aunt and uncle, kinda parental surrogates to us both have only been kind and understanding. About your parents do they want you to be a polygamist? I mean i know that is en vogue right now but maybe another burden for you. I agree no more marriage for me...that does not mean never another relationship. ...but why go there now. The reason I am awake and writing in here is because dh has taken to grunting and barking in middle of night. I think he doesn't drink enough water. I can hear him plainly through wall. I am rambling, another reason I don't post often.
Abby, I know your pain, spent all day crying in my hotel room when I should have been out looking for work. Tried calling county attorney against my better judgement. He never returned my phone call. He hasn't been very supportive I thought it was because he was so young. I saw when I googled his name to get his phone number that he was recently diagnosed with stomach cancer. The article about him said that his wife has been very supportive making all the medical decisions for him. Was kind of a twisted irony because i have gone to him in tears and begged for help for my husband. They have two young children so it is very sad. You know this disease has taught me in order to keep my own sanity I must let go of any anger or blame. Most days I am confused by all the strange things that have happened so I just try and let go of expecting others to understand. Sometimes in life just getting out of bed every day and trying to do the right thing makes you a hero. I will be praying for you today. Hang in there Abby :)
We all feel like crap sometimes. It is a tough tough gig. Sorry about your parents. That is silly of them (the marrying thing,) but I guess they haven't quite grown up out of their dreams for you. The implication that someone would "fake" dementia...nuts. I hope they don't have to deal with it. They'll be eating some crow.
Abby, I'm so glad you've decided to stay with us. Most of us here have some difficulty with those people we care most about after our spouses. For some reason many family members just don't get it when our spouse has dementia. My sister kept telling me nothing was wrong with DH when he was in the early stages (FTD) and that he was just lazy and using me. Then when it was clear that he had dementia, she forced me to go to an attorney and explore divorcing DH in order to preserve "my savings". I know she was trying to protect me, but it was the last thing I wanted to do at the time. His brothers have nothing to do with DH and even announce to anyone who doesn't know about DH's dementia, that "He's got alzheimers so just ignore him".
Yes, it is hurtful that you can't turn to those people you care most about for comfort and understanding during your times of need, but we will always be here for you when you need.
Abby so, so good to hear your back and plan to stay with us ! I check in today especially looking for you. Thank you for giving me a smile for the day by being here. The road sucks, it's not fair but we have no exit ramp until the end of the highway. My hubby EOAD too, 55 dx, late 40's symptoms appeared ......hinesight 100%. Hope you have a better today.
Welcome back abby! I was so happy to see your post. It’s true. We all can feel your pain. We have different issues but it all boils down to the same disease. We are all needy & that is when we come here to vent. I’m glad you’re back! ((HUGS))
Abby, you said, "I feel guilty about being needy and I don't know where that comes from; the guilt part."
That need and guilt caused me great anguish for a long time. (I still find myself erring in the other direction even now and strive to be independent, that is, not needy, but it was a hard-won victory for me.) What helped most was a nurse friend of mine who said, "What you feel is normal. How could you feel otherwise?" She gave me back a sense that I was a loving, caring worthwhile person. Society and we, too, have high expectations to be successful, not complain, stiff upper lip. And then we find ourselves in a position where we're exhausted, worried, grief-stricken and avoided by folk who want to get on with their own lives so "don't bother me, bring me down, whatever." It's all going out, nothing's coming in.
abby I wanted to comment a couple of days ago, but I just got back from a trip and was too tired.
I am so glad you are staying, this group is true abby, true to the core and really caring. I can come here and whine and complain and not get reprimanded, though good advice is offered. Hugs are given. Books are shared and other things. Please accept a big hug from me.
Coco
(side note) Elaine H, check my profile for address, I will delete when I hear from you. Mary75* hope you are feeling better! MotherT finally got the book, watch your mail in the next week. Mahalo, thank you.
Thanks, Coco, I am feeling better. After 2 weeks, yesterday for the first time I didn't feel cold, achy and tired. A good thing, too, as UBC 2nd semester starts today. I'm glad you overcame the beginnings of your cold. Those are mighty herbs and vitamins you took. When you've caught up on everything, let us know how your husband is - it was courageous of you to take him on the trip.
sweetsu - you are not the first one we have or had on here who had to live separately from their AD spouse. They loved their spouse but the spouse was very mean/nasty to them. You can look back through post and read of them. They may even come along and help encourage you if you stay or if you decide to leave for good. Just know you are not alone in your particular situation.
Oh, I just posted on a previous thread and meant to post here.
I wanted, and want, to say how much I appreciate each of you.
When I am here I feel a sense of peace, a sense of home. Those who have said that caregiving causes a kind of solitude are so correct. I feel all kinds of things. Friends(?), Family (?) who cannot or will not support H. I don't know what the future will bring but am glad I found this space.
I am so tired and have doc appointments for myself tomorrow.
abby, this is the best place to go to online for people like us who are paddling our boats in that Alzheimer's Lake of Confusion. Even though all of our situations are unique, our situations are more similar than different. On this site, we all 'get it' as our parents, children, friends and others will never understand ... no matter how much we may try to educate them. (And I, for one, have stopped trying!) Glad you're back because in many ways this site helps to keep us sane! However, as wonderful as this site is and as amazing as Joans blogs are for expressing what we are all thinking of and dealing with at various times, there is still no substitute for getting yourself into a good support group if you can. I'm very lucky on several counts. My support group, only for spouse caregivers, meets weekly. Most support groups meet monthly, and too many support groups lump all caregivers together. I'm also lucky that my group has knit together very closely and we feel free to email and call each other between meetings whenever we feel the need. If you haven't already done so, check with both the Alzheimer's Association and the Alzheimer's Foundation (totally different national groups) to see if they have any local support groups available in your area. Sometimes, hospitals and nursing homes also provide on-site support groups and allow anyone to join. In my case, I kept looking until I could find a support group for people with early to moderate stage Alzheimer's that was meeting at the same time as a spouse support group, so when my wife and I go each week to the Long Island Alzheimer's Foundation (LIAF), my wife goes into her support group in one room at the same time I go into my support group in another room. The Alzheimer's Association on Long Island didn't provide what I was looking for. I discovered the existence of LIAF by Googling because I had never heard of the Alzheimer's Foundation before! Anyway, we joined 2+1/2 years ago and my group has been invaluable. Check out such possibilities if not already meeting in such a group! And again ... glad you decided to give us another shot!!
Abby, Not sure how old your DH is, but mine was 53 when he was diagnosed and now he is almost 59. At the beginning I thought he was "faking it" and wasn't as bad off as he was acting. Now almost 6 years later I realize he wasn't faking it. I am only 46 and my parents are so angry about all I am having to go thru. They help me a lot, but it is very tense when they are around my DH. They definitely want me to date/marry again as well - which is not something I can really focus on right now. Too many other things to worry about! Your parents probably just want you to be happy. I so know how stressful, depressing, just plain horrible this disease is for the caregivers. I don't have any great advice to give you other than everyone in the same situation is there for you and can sympathize!
Abby, as Shannon and others have said, we are all in same situation. Newbies to end stage (my DH) and others whom are graced with "*" after their names. God Bless us all.
Hello, Shannon and nellie and thank you for your kindness.
Shannon, H's problems started when he was in his early-mid 40's and then continued with a dx of MCI in 2006 and FTD in 2009. He is now coded as "general cerebral atrophy". My parents, well, I could write a book. It seems they are mostly concerned with the negative impact on them because their son in law has a disability. By that, I mean that it does not go over too well with their friends at bridge or on the golf course. "We exist to impress" has suffered.
acvann, I am probably quite a bit away from participating in person in a support group. I appreciate your comments and thank you for being one of those who have welcomed me back so warmly and graciously.
mary75, my pcp said just about the same thing your friend who is a nurse said. He said there is no way in the world I could not be reactively depressed. Your words, and his, rang so true. I was glad to read you are feeling better.
sweetsu, letting to of the anger and the blame is a central part of my struggle. You are sweet! I can accept being sad, and depressed, and sometimes defeated but I do not want to become bitter in general although I certainly have bitter moments.
Coco- you are an inspiration to me. You and I joined here within a couple of days of each other. You jumped in to post and I remained reserved. Once I started posting, and despite my meltdown, I found that my welcome here was genuine. I saw that happpen with you (not the meltdown part), and you helped give me the guts to participate.
gredelsma, I have felt and thought a lot of things since posting here. As a kind of behavior mod thing, I try to react to H with smiles and laughs, which are 99% of the time forced. But my laugh was spontaneous when I read your comment, "....about your parents, do they want you to be a polygamist?"
Amazing how much we all have in common. . and all that makes us each so unique as well. .Can totally empathize with willful or "faking" of symptoms..DW was literally accused of creating this situation for some unknown purpose by some well regarded neurologists. .Could not accept that with no hereditary factors and age (probably 48 when obvious symptoms were occuring) that she could actually have dementia or EOAD. .Had finished her doctorate degree when she was 46 and again was told that there was no way she could attend to that rigorous academic AND hold down a university full time position. .Little did they know the angst she (and we) were going through just trying to make it through each day. It has been almost 5 years to the day where she was in a position of resigning her university position. Felt so incompetent that she had to step down. Now, she can't read, write, dress herself, attend to showering or bathing. .Has no idea what the month or day is. Refers to me as her "buddy". . sometimes wonders aloud if I am married. Has begun to see me in a third person sense..I have written long letters to those medical people who pondered "faking". . Will hand deliver at some point in time. Am also dealing with my mom and mother in law who are also battling this disease. .but at an older age. So so different when in early 50's.. Like you, Abby, I will be writing a book some day. It probably will not resemble "The Notebook". . A bit more agitation, anger, and frustration will be more prevalent. .
abby, I also thought I was years away from needing a support group and only joined a support group only to appease my wife. I had just finished reading the book, "Still Alice" by Lisa Genova ... still the best book about Alzheimer's I've ever read ... and the struggles the main character, Alice, had finding a support group for herself while she was in early stages of AD. So I went about trying to find a support group for my wife. I brought the newspaper with me the day of her first session, fully intending to sit in the lobby and read while she was in her group. But my wife kept insisting that I also try a support group for spouse caregivers. I kept saying I didn't need to join such a group now but would do so 'later' if I felt the need. She was very insistent, so I finally agreed to do it but "only for today.' Well, I got hooked immediately and since that 1st day I've gotten much more out of my support group than my wife has gotten out of hers!
No, there is no "Notebook" in my present or future either...As I look back on it, there was so much questioning of my H's dx. "He's too young! Look at the career he has! Look at his IQ! No one in the family has anything like it!" And much later, regarding the rages, "but he's so nice." Almost six years here also, from initial dx of MCI and H is still a couple of years from 55.
I still shake my head at some of it: he was overworked? (honestly, I don't think he thought so, and he did like his work). So, he just decided I'll fake dementia because look at all the benefits from that! Sundown, I just got the third person thing recently. He called me by my name and referred to me as "her".
What words are there? Best wishes to your and your wife. These are the hardest days.
acvann, I'm not ruling out a support group, just not yet. H thinks there is nothing wrong with him- so it would have to be an individual endeavor!
Elaine and Terry- thank you for your kind words from upthread.....
Abby, I am so glad you are posting, and thank you for saying your kind things!
I tend to be pretty "open" and friendly, it may get me in trouble some times.
It is so so hard isn't it?- I am in a weird space with my dh, teetering between taking care of him all by myself, or looking for help. He is changing so much.
I too cannot understand why he seems almost normal sometimes. However when people tell me he seems ok, I tell them just try to carry on a conversation besides how are you?
Abby and Coco, I just want you both to know what an inspiration you are to me. I am pretty new here also but you share your trials so well. It doesn't seem to matter how long we are all here does it? The shock of the situation just seems to keep going..