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    • CommentAuthorhelene
    • CommentTimeNov 13th 2017 edited
    I just remembered that I was on this site a very long time ago and it might have been under a different username. I have been in a fog and don't remember. I thought it might be good to connect again and read how others are coping as widows or widowers after AD.
    My husband was finally released from the ravages of Alzheimer's, after more than 6 years in a long term care facility and not speaking nor knowing me for the past 3 years. It has been a long and difficult journey of 15 years since diagnosis.
    Of course I miss him terribly. He was my "big baby" and I visited every day, most days more than once. I miss him, the routine, the other residents and staff who cared for my husband for such a long time. I feel lost and am struggling to figure out what to do with my life which no longer includes caregiving. I have the time now to do the things I have not been able to do for many years but most of the time it is hard to get motivated.
    I plan to catch up on the news of some of the people whose names I still remember on this site. Your wisdom and support will be welcome, I know.
    Hi Helene--welcome back. I wouldn't' worry about not being motivated--I think that is part of the recovery process. The "blahs." I think while you are in that apathetic, lethargic state, you are healing.
    It has been a little over a year since AD claimed my husband, but I, too, lack motivation to do anything.

    I view my life as having an enormous black, bottomless hole in the middle of it that looms over everything I do. If I might laugh too heartily, I find myself teetering on the edge of it. If I get distracted with something interesting, I am suddenly startled that I almost walked right into it. It is scary and cold and has consumed most everything that held meaning in my life. It transformed my love into a zombie and pieces of my life (still) fly into that black hole at warp speed.

    Yes, helene, our lives as caregivers held some structure and importance that they don't now. I don't have to make small talk with the staff and residents. I don't have to get ready to go over for supper or change my plans at a moment's notice because the facility called about a problem. That lifestyle, though, just sucked out the lifeblood and now that it is over everything left seems superficial and trivial and I spend what energy I have trying to not fall into the black hole.

    It seems like the safest place is in my bed. And yet I know this is nonsense. I force myself to get up and attempt to do something, but most everything I can think of doing just seems like a meaningless waste of time. I wish I had a solution to give you because I need one too.
    A lot of the solution is just to go with the is something that is just going to take time, and maybe a lot of time. I think recovery is a two-pronged process--we are learning to live without our loved ones, while at the same time trying to re-invent ourselves in this new life that we are living. And it can't be hurried or forced. The time will come eventually when you look back with a smile first thing instead of sadness.

    Of course there is a "big, black hole", marche. How could there not be? But it will gradually go away as your life becomes filled with other things--things that are authentically important and meaningful for you. And as you go forward onto the foggy, misty path, all that gray mist gradually evaporates, and you will see a clear, joyous path that you are taking.
    • CommentAuthormyrtle*
    • CommentTimeNov 14th 2017 edited
    Hi helene, I can sympathize. My husband died in March and, like you, I considered him to be my child. How I miss his sweet presence! It’s a real jolt to go from spending time every day at the dementia unit to not going there at all. I wish he were still here, even in his sad state. When I drive by the facility he was in, I picture going in there and finding him still alive, smiling and talking nonsense. I have to admit, though, that by the end, I was running on fumes and my health was going downhill fast. I don't think I could have taken much more. If he were still alive, I might well be dead now. I went into this dark world as a youngish 59 and Alzheimer’s turned me into an old woman. I don’t live in the black hole that marche describes but I do have trouble getting up and going out. In retrospect, I can hardly believe that my husband and I went through this nightmarish experience, which killed him and left me badly wounded.

    My problem is that I don’t want to reinvent myself at all. I want to be the same person I always was. But I feel obligated to live as a sensible old person. For example, when I’ve brought up ideas about a possible project for the garden or a change to the house, people say, “Well you won’t get your money back from that,” as though the living of one’s life and trying out of ideas are no longer worthy activities. But I know they’re right in thinking that if I maximize my limited assets, I could move into a retirement apartment (which I have no interest in doing at this point). In the meantime, since I’m still loath to go out of the house, I’ve started to clean it out and get rid of a lot of junk, which needs to be done anyway. To tell you the truth, the basement has so much junk in it that I might not live long enough to finish cleaning it. Anyhow, I’m hoping the way forward will occur to me by the time the place is organized.
    • CommentAuthormyrtle*
    • CommentTime7 days ago
    The leaves have dropped from the trees here, about 3 weeks later than usual. In mid-October, the foliage color was the same as it was on Oct 1 last year. I know this because my husband's daughter & granddaughter visited him then and I have pictures of them in our back yard. During their visit, he was so happy. I don't think he knew them but he did know that he was the star of the show. Now he is dead.

    I know (at least theoretically) that I can carry on because others have done it. But I find that when I'm faced with even slight annoyances or roadblocks, I have little resilience and I wonder what the point is. Maybe this is why marche has to force herself to get out of bed.
    • CommentAuthorWolf
    • CommentTime7 days ago
    That sounds very much like what I felt like after a year, Marche. I just kept on going because there wasn't anywhere to land. It never really felt like a process even though the real truth about one year later was that I hadn't had enough time yet.

    Settling down happens. You can hear it in Elizabeth and you can hear it in me. I think that only when we settle down inside more, can we see how we really were in a period of psychological, emotional, mental, and spiritual effect.

    I'm getting clearer on what I would advise. Informed patience, trying to discover more genuine self support, commitment to nursing the patient through overwhelming times, effort as available to start to claim (eg: roles our spouse did), reclaim (our bed, our bedroom, entertainment, lots of etc), integrate (our experiences and situation), land (settle down inside), and move into life (remains fairly invisible until you're in the process of landing I found).

    I think Elizabeth and Myrtle each touched on important aspects. One is to try to improve our skills in going with the flow. The other is to discover more of yourself which Myrtle is talking about. I, personally, could discover squat in the first two plus years because I lived what Marche is talking about.

    In fact, I've just re-read it and I can put on her current suit and it would fit like a made to measure, tailored glove. That's me to a T because when I looked out of these eyes I saw things exactly the way Marche wrote.

    If you'll remember, last year I went on about how things were getting better. I could actually tell and even feel that I was improving from that well earned state. This year I don't talk about that because I still am 'improving' and the recovery from caregiving isn't complete; but they are in the background and getting smaller compared to feeling like I'm discovering my own life (fingers down my throat).

    Look up in any decent dictionary the word 'last' and you will see it described as where I would choose what happened to me among pretty much all of the choices. Last. However; however, I am here, and I choose to claim it.

    I left one out of my list. Learn to love what you hated. I'm learning how to like the last choice I would have made in life, and that, my friends, is the key. It's my route and my circumstance and the pain left along the road which I would have chosen last. Until I came out of the serious effects of grieving alone - never mind anxiety, depression, stress, Stockholm syndrome, PTSD, years of mental torture and isolation, recovering from pounding into yourself that you don't matter (only they do), guilt, and, what no one has talked about that I've seen, the effects of a salad bar of all of these building up and festering for years because there wasn't time to deal with any of it until grief arrived. NOW you have time. BTW here's a bag of bits left over that used to be you. Good luck!

    Informed patience. Key number one. You've been through a ton. If you don't believe it go and inform yourself because it's true. Grief is universally recognized as profound trauma gone through in sometimes strange ways. It alone can take you out for some time. We're so backed up we might not even notice vanilla grieving.

    I mentioned to Mary75 a while ago that we might notice that taking care of her father and her husband Sid, creating and running this website, and advocating for Alzheimer's at the same time didn't seem to be nearly as hard on Joan as afterwards is. In my opinion what we've gone through requires more respect than is generally acknowledged.

    Coming out of those very real effects is a serious life experience of it's own and the current flounder in silence society doesn't help.
    • CommentAuthorWolf
    • CommentTime7 days ago

    My nephew was here yesterday to talk all day. In there somewhere I told him my research showed you don't go to Amsterdam, you go to Switzerland to end it voluntarily. In Amsterdam they still ask you questions, but in Switzerland zey know nozzzing! (Sorry, I had to, they don't have any questions). My nephew looked concerned and asked if I was still having suicide thoughts (I did that once when things got really bad). I laughed and said I didn't need to go to Switzerland; I could draw a picture of Mohammed with my name and address on it and send it out there. Death would come to my door like an Amazon delivery and it wouldn't even be suicide - it would be freedom fighting! He laughed.

    He comes on his one day off without job, wife, or kids. Or he has for five years. This year he didn't write or call to say he was coming. I went to bed on November 11 and 12 with those familiar feelings that I'm invisible and whatever I do things leave. "He didn't even call. Why would he do that? What happened here now?" And so on. Then I woke up yesterday morning sure that he loved me and knowing him taking those five days was probably more time spent in actual effort caring about me - than I myself had done in that time.

    Then I got my coffee and opened my mail and there was his email from later the night before that OMG he just assumed and of course he was coming was that alright? Well, no, I've already been through the entire dramatic experience and have already buried the body. Of course, come ahead. I told him that story. I told it to him fully and honestly and I told him why. Because he's right behind me.

    I got him into the organization he's currently a senior director in. I did that when I was 46. He's now 45. Blink twice I told him over twenty years ago and you'll be here. Well guess what Cinderella? Click those ruby slippers because this ain't Kansas anymore. "Accelerating decripitude bites" I told him. Blink twice and it's be him turning on the spit over the nephew not even phoning! Oh. Nevermind.
    • CommentAuthorWolf
    • CommentTime7 days ago
    Hi Myrtle, we about three weeks late too.
    • CommentAuthorAliM
    • CommentTime7 days ago
    Myrtle, DH died one year ago today, 11-15- 2016. I am neither happy nor sad. I spent the first few months with the paperwork an the next few months cleaning out the clutter. I am about three-fourths finished and in no hurry to completely finish. I try to tell myself that I walked in the trenches and deserve to live on top of the mountain after the ALZ disaster. So far, I am with you in trying to figure out "what's the point?" We will figure it out or let time slip away until it's our time to go. For me, time is slipping away and I have no motivation to proceed onward. I can't go back far enough to remember the good times in my life with DH. I am still so bitter with the thoughts of the care the so called medical professionals render to ALZ patients. I spent way to much time visiting the NH during the 5 1/2 years DH was there. Hopefully we will soon find a purpose to motivate us upward and onward. I just hope no one suggests visiting a NH! Big (((hug))) sent to you!
    • CommentAuthorNicky
    • CommentTime7 days ago
    Alim, I'm curious to know why you feel you spent too much time visiting the NH while your husband was there?
    • CommentAuthorAliM
    • CommentTime7 days ago
    Nicky, I allowed his life to be mine. After 6 to 8 years of caregiving at home I now believe the 5 1/2 years of LTC visits took the bigger toll on me. He did not talk at all so I walked the halls with him. Although we were married for 50 years he did not give any indication that he knew who I was. As long as he was walking he was happy. The lack of training for staff in dealing with ALZ patients will haunt me forever. I now realize that the time spent there was trying to ease my guilt trip for placing him in LTC and not because he was happier when I visited. Live and learn. We all know what the end is for any ALZ patient. At age 70 I am trying to get back to the crazy and fun old lady I used to be. I just wish I had started a long time ago. Take care.
    • CommentAuthorCO2*
    • CommentTime6 days ago
    AliM, having been on the grief journey a little longer than you, trust me u will eventually get back to yourself but it will take time. At one year I was still pretty numb as far as feelings go. Just try to allow yourself to be and do not,push yourself to try to accomplish too much. That first year I attending 2 bereavement groups--one with hospice and another through my church. It helped immensely because I,was with people who,understood and it was a place that was safe to open up and have people listen. It is 2-1/2 years and I still have days that are not so good. Today was one of those days. But I know that tomorrow will be better. I do understand your guilt as I had a tremendous amount also. That first year I basically ate, slept, exercised, and did a lot of knitting. Did not want to socialize too much even with family. Keeping to a daily routine kept me sane. Walks helped too. God bless.
    • CommentAuthormyrtle*
    • CommentTime5 days ago
    My husband's life became mine, too, it I don't see how you can avoid that. Alzheimer's is like a tornado. It is all-consuming; it takes over everything in its path. Luckily, my husband's LTC facility was excellent and the staff were well-trained. After he was in there for a while, I had to admit that he was better off there than he was at home. He liked the activities and the staff and made friends with some of the other residents. I probably spent too much time visiting him but it was for my benefit, not his. I would give anything if I could just visit him there one more time.

    Not happy and not sad describes me, too (although I cried when I wrote that last sentence). I'm glad to know that numbness is one of the things we are likely to experience. Maybe it's a defense mechanism.
    • CommentAuthorAliM
    • CommentTime5 days ago
    CO2, Good to hear that you are plodding along in the "after" journey. With your encouragement I know there is hope. I am really happy for you. With the exception of my aching back, leftover from caregiving days, my health is fairly good so I will continue trying. I do go for long walks several days a week which helps a lot. Myrtle, I am all cried out. Don't believe I have any tears left. I have the opposite feeling on visiting the NH. I am thankful everyday that I do no have to go back there and see him that way. That sounds so cruel but it is the truth. We will eventually be okay if we keep hope and faith. Take care.
    Plodding along is a good description of how the life "after" feels...I've just passed the one year mark and i think i'm more confused now than i was 6 months's hard to find any christmas spirit this year, i tear up just watching a video on you tube for heaven's sake!!! This too will pass, but clearly it will take more time and there will be still be bumps in the road...its just hard, at 57 years old, to look ahead to the rest of your life and not have a clue how it will play out...On the upside of things, I appear to have stumbled into a hobby of sorts lol...when hubby was in the care home, i thought of making him a busy blanket but after some thought decided on a busy board with locks and all sorts of hardware as hubby was a guy who always worked with his hands and i thought it would be more interesting for him...Sadly he passed less than 2 weeks after i gave it to him...several months after he passed a woman wanted to contact me about these boards which I thought was kind of odd as I didn't have a clue who she was...I met with her and talk about the strangest of coincidences...she got my name from my aunt who she had worked with at a hospital in the city many years ago, but who she had reconnected with recently ... this woman is a recreational therapist at a veterans hospital here and which my grandfather was residing in...this was how she reconnected with my aunt...when I met with her she was asking about the connections of people in my grandfathers family so i start with my aunt and then go through her siblings and when I mention my mom, she says oh I know her, I got all my Avon from her...I'm thinking that's kind of strange that this lady knows my mom my aunt and my grandfather and I've never heard of her...then she completely blows my mind when she tells me that she did relief shifts at the care home where my husband was and she worked with him whenever she was there!!! I was stunned! Anyway she loves the boards so we are getting together to try to get them into the hands of those with dementia...It won't be any kind of booming business but an enjoyable creative hobby for me...I am really enjoying taking everyday items and flipping them into something totally different that will provide an activity or a sensory element...I guess it just goes to show you never know what is around the corner in our lives...I'm going to call it creative therapy!!!
    29scorpio, what a strange series of coincidences. It sounds like it would be a good project for you as long as it doesn't get overwhelming. I guess the boards wouldn't have to be all alike so you can use whatever comes to mind or what you find in your home. Even friends might contribute when they know what you are doing.
    • CommentAuthormyrtle*
    • CommentTime9 hours ago
    Yes, that is a very strange series of coincidences. I can't work up any holiday spirit, either. To be honest, though, for a long time I've found Christmas to be a big turnoff, with all the hype, constant sales pitches, and replaying of the same tinny music. I would decorate and buy gifts and everything, but I was always tired and stressed out about how I was going to pay for everything. My husband made it special, though, even after he got sick. I spent the last three Thanksgivings and Christmases at his LTC facility and that was fine with me. I wish I could go there this year.