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      CommentAuthormary75*
    • CommentTimeOct 22nd 2019
     
    Charlotte, where are you? Are you all right? Miss your postings!
    • CommentAuthorCharlotte
    • CommentTimeOct 22nd 2019
     
    I am still here, just kind of down - not sure why. I haven't been sleeping good. Finally did a couple nights then last night I couldn't again - back and knee were hurting. Didn't help the winds were blowing 20+ all night. I got the first of 3 shots in my knee Friday and it felt great all weekend. It was sodium hydralorate instead of steriod. Then last night it along with my back were hurting. Seems every time I do laundry my back ends up hurting that night. Not sure why since I only stay there the 1/2 the washer is washing, then I come back to wait until the dryers are done.

    Last week he refused the flu shot so they asked me to be there when the guy came in case he resisted - which he didn't. I guess he was in a bad mood before I got there. I got him to come in to drink his root beer I brought him and his snicker. When I left about an hour later I had him outside with the broom sweeping! He was happy. Occasionally he would stop, walk up to the door and joke with the 'guy at the door'! the door has a glass so he sees his reflection!
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      CommentAuthormary75*
    • CommentTimeOct 22nd 2019 edited
     
    Pain will do that. Is your laundry load too heavy? Could you divide it into two smaller loads? Have you tried Votlaran (Diclofinac) oinment? It's over the counter. If you do, be sure to keep your hands away from your eyes afterwards.
    I had a poor night last night, too, because of pain. Went out tto the dentist his morning amazed at how many rude drivers there were on the road. Then I got exasperated with a man at the Community Centre because he wouldn't agree with me in a discussion we were having about religion. As I left the parking lot, another man honked at me, and I shook my fist at him.
    Decided It was me who was all out-of-kilter and that I'd better get home pronto. Which I did, and here I will remain until tomorrow. Hope to have a better sleep tonight. You, too.
    • CommentAuthorCharlotte
    • CommentTimeOct 22nd 2019
     
    I use lidocaine patches but last night I didn't want to bother since they have to be taped. I don't know why they shoe they stick but in reality they don't! I think it is just sitting in the chair there which is just a chair you sit in at tables. My back gets use to one type of chair and when I sit in something different it revolts!! I do Votlaran left from when Art was given it for when he had water on the knee but it can be absorbed which I don't like so stick with Ibuprofen and/or the patches.

    I think the last guy that was trying to get info from me when playing Words with Friends is the same guy as before - just a different picture. That guy no sooner 'resigned' when another one showed up. I just have not answered this guy. If he is not happy just playing the game, he can resign too. I am not ready to 'flirt' or be trolled online - don't know if I ever will.

    Today got up to 73 with the wind still blowing and I have the door open letting fresh air in. I ran the MH for a while - finally got under 3/4 of a tank!! Our weather is suppose to turn colder in a few days. I think part of it too is a friend is up from Yuma. The first month we spent a lot of time together, but the last week she has been spending a lot of time with her daughter before they head south again next month. I think I was enjoying not being alone but now have to adjust to it again. I just need to adjust and decide where to go from here in this new 'single but not single' life.
    • CommentAuthormyrtle*
    • CommentTimeOct 24th 2019
     
    Mary75* and Charlotte, I hope by now you have both been able to sleep. Mary, sometimes I get like that - really grouchy. Charlotte, Your successful redirection of Art by giving him the broom shows how sometimes it's the spouse, and not professionals, who know best how to deal with dementia patients.
    • CommentAuthorJan K
    • CommentTimeOct 25th 2019
     
    Charlotte, have you tried ThermaCare heat wraps? I'm a big fan of using them for back pain, or for other odds and ends of pain. Usually I use heating pads, but when I have to be up and around, one of the heat wraps helps a lot. Also, DH has a wrist that was once broken in five places, and sometimes when the weather is changing, he will wrap one around that wrist.
    • CommentAuthorCharlotte
    • CommentTimeOct 25th 2019
     
    I use lidocaine patches - I just wish they stuck better so like many use tape to keep them on. I also have the licdocaine roll-on to use usually on my lower back - easier than trying to put a patch on.

    I had a couple nights of better sleep but now back to restless. I find leaving the TV on the 'easy listening' station helps.

    He has gained 3 pounds since going on the risperdal which is a side effect of it.
    • CommentAuthorCharlotte
    • CommentTimeOct 26th 2019
     
    I am crawling somewhere else, just not sure where and it is going slowly!

    I have to face it - I am finding the 2nd year of placement I am more lonely than the first. Kind of enjoyed the first year but not anymore. And/OR even though I am ready for this to be over I think this mood swing might be related to signing the hospice paperwork. Even though he is doing better I think it still effected my subconscious which is causing tears to come at anytime
  1.  
    Yes, it is a miserable situation, Charlotte. The good old "not a widow, not a wife" Alzheimer thing. The constant uncertainty--when will they die? I wish they would die. No, I don't. But I want to be free from all this. But to be free means they will have died. But I want them to die, it will be so much easier and I can get my life back. But no...wait...I don't want them to die...but I know they are going to...but how long will it be? And so on and so on. And it is so isolating--it just seems like nobody else in the universe is going through this or can possibly understand--being alone and lonely all the time in the Alzheimers situation is so bad for you. So many of us have been through it--and there's no question it affects your physical and mental health and is very bad for you. All I can say is: It doesn't last forever, even though it seems like it does. Sending you the knotted rope to hold onto:

    x---x---x---x---x---x---x---x---x---x---x---x---x---x---x---x---x---x---
    • CommentAuthorCharlotte
    • CommentTimeOct 27th 2019
     
    Well said Elizabeth. The limbo is hard especially when you want to do 'the long crawl elsewhere'.
    • CommentAuthorWolf
    • CommentTimeOct 27th 2019
     
    It does feel like that in some ways. The longest walk you never imagined. The journey through the shadow of death I called it and that was how it felt for the longest time. The long crawl elsewhere is definitely a big part of how all that was, and still is in some ways.

    As Elizabeth said, it's a miserable situation - and it really is that in every sense. It's not you being strange in the normal world; it's the normal world being strange in yours. What are we supposed to do in an impossible situation except survive it?
    • CommentAuthorWolf
    • CommentTimeJan 27th 2020
     
    In a psychological sense moving in your life past dementia is the same as moving physically from one house to another. You were there and now you're here. I've talked so much about all this in the previous years and, in the end, it becomes nothing in the sense of a non-topic. It's part of all the things that once were like parents, and a career job, and raising long adult children. They're parts of you that aren't relevant anymore. Marriage has become like that too.

    I''ve been diagnosed . That dropped out of the clear, blue sky in the form of a high school crush that became a professor of psychology and then opened her own practise. We've written steadily for seven months now and she thinks I had 'acute clinical depression'. That's probably fairly common among caregivers. It's been some five years returning to normal and there are still bits of that going on today.

    I asked her why I don't remember much about how I was during that period and she said it was actually a transformative state. Apparently remembering everything that happened but not how you felt in the same detail - is common. It sounds like we're us in our lives but not us in our state. I wonder if there are any books out there on what it's like to be in post depression.

    Alzheimer's seems to like creating gaps. It created a number of them in my world and it turns out it created one of them right inside me. I've asked some of the people who knew me during that time and 'very withdrawn' and 'unresponsive' were repeated replies. Apparently I'm a chatterbox full of life again. All I can do is shrug because I can't tell. I kept notes, but they were my anguish and fears and reminders to keep going, which is not that helpful.

    My friend said recently that she's sure I don't have depression now and that I'm full of stories and curiosity. Good to hear but it's all a big shrug. None of any of that has anything to do with what I'm facing now which is advancing age as much as it is getting on with things in my life. I know what I want to do. I want to live on my own for as long as I can. Lonliness left some time ago replaced by peace being alone. My friend is right too because I chase down things every day now which I'm curious about. There's a new feeling emerging inside. I think of it as willingness to look for answers. My psychiatrist friend is going to call that an aspect of transitioning out of acute depression. I didn't know depression could be cute.

    I had no doctors, no pills or drugs, no moving, no new people or relationships, no vacations, and no guidance. I have no skills in any of this and did nothing to help myself except wait it out and keep wanting it. I didn't even know what any of it was and self diagnosed serious depression as mental illness. That's zero for one in self diagnosis.

    I did two things consistently and resolutely. I never accepted that that was the normal me and I never gave up wanting to find my way to better places. Everything in that was complete guess work and I'm not surprised I was wrong. I don't care because none of it has much to do with my life. It's history. It doesn't matter that I didn't know what I was doing. I don't know what I'm doing now either. I do know one thing. If it can happen for me, it can happen for anyone.

    I've written a thing that may or may not have something useful in it . I hope it does. All the very best and my sincere hopes for all of us.
    • CommentAuthorWolf
    • CommentTimeJan 27th 2020
     
    -2

    Many years ago on this board someone said something that has become the mainspring of what I'm doing. She said the word 'authorization' and she meant it exactly the way it's become useful; that being learning how to authorize myself.

    What that has meant is that as I came out of Alzheimer's malaise, I was still as lost as anyone would be in our circumstances in rebuilding a new life out of the ashes of the one I had. And just because I wasn't depressed or recovering anymore, that didn't mean I'd lost my mind and thought of starting over in old age alone as something good or desirable. It's not, and that's why it feels as unwanted as it does.

    That's the main reason it's so useful to develop our own authority to be and feel and think whatever it is we believe. Another way to say that might be to develop and improve our sense of our rights. For example, I have the right to feel hard done by the fact that this illness took away almost everything I valued, cared about, and found meaning in. It left me with anxiety, depression, and isolation to name some, and giving myself the authority to react to those facts included not worrying that I felt them for what they were.

    When you try to reinvent your life in old age alone, you come up against yourself sooner or later; that is - the limits and nature of ourselves. Authorizing myself to be me without any further explanation doesn't solve anything directly, but it's a very freeing thing to come to believe in. That's the nature of actual authority. You take it and own it. You have to discover your belief in it before you're going to do that.

    That kind of thinking may be clearest in future relationships. I'm very lonely and I really want the sharing kind of thing I used to have. That's a good reason to go out and look. But once I'd opened that box in a serious way, I also understood that anyone else permanently in my space was going to get on my nerves which was far more of a negative than company was a positive. That allowed me to stop worrying about it. I've left it that if I meet someone I really like, I'll think about it again. In the meantime, being lonely morphed into being alone which isn't the same thing.

    I want more contact and I want more friends, but that takes time and authorizing myself to have that time led me to understanding what I really want is to live on my own as long as I can. Well, I'm already doing that so there's one success.

    Take my sister. She thinks watching TV is a waste of life. Her choices of what isn't a waste of life are, frankly, just as mundane as watching TV is. Her husband likes watching TV and is home 24/7 now. Talking to me may have helped make her aware that their lives were far more harmonious once she authorized herself to not watch, while authorizing her husband to do what he liked as well. That kind of thinking applies directly to me. Entertainment is only entertainment when it entertains me. I'm entitled to be entertained. Therefore, my job is to find things that can do that. When I find those, my next task is to allow myself to be entertained. Another way to say that is authorizing myself to actually enjoy what I like.

    There's a trick to it though. That might be illustrated by smokers. I'm a smoker. What smokers do is puff away realizing they probably shouldn't or really need to quit one day - and then they walk away from smoking believing they're trying to do something about it. They're not. Wanting doesn't do anything frankly, and so I authorized myself to resolve smoking. I still smoke but I don't worry about it anymore. As I've explained, the topic is authorization of ourselves - not what someone else thinks best or what what we think we should be doing.

    This extends into thousands of things. Why is that thing there? Where do I want it? The regular utensils for cooking were in a drawer. Well not anymore. I put them into a vase I have no use for and now they're right there next to the stove. I didn't even know I had an opinion about that until I authorized myself to try something else after fishing for the thing I wanted buried in the drawer. It's right here now and I like that better.

    I switched sides in the queen sized bed and I leave the light on all night every night. I don't have dangerous adventures in the dark anymore, and when I wake up at 5am and don't go back to sleep, I just reach over and start reading. I get plenty of sleep so when it comes isn't really an issue. It doesn't matter what choices other people make. It does matter that I can see I'm improving my life with each choice I authorize myself to have, and that as I make enough of them my life keeps feeling more like I'm living it again.

    These may be thoughts worth considering. Not as a judgement of what we're doing; but, as a tool we might be able to use to help ourselves be.
  2.  
    This all sounds very familiar, Wolf. I don't know if I had a true clinical depression dealing with Alzheimers and the aftermath, but I think just the reality of how you have to live as an Alzheimers caregiver is almost a portrait of depression. It's difficult to be anything else than depressed, but it's the Alzheimers that's doing it. Once the Alzheimers caregiving is gone, then the depression goes away, too...in the process of re-building. I'm not sure I'm saying it right, but others who have been through it will probably understand.

    And then while re-building, there are all those new questions. Who am I, really? What is authentic in my life, and what isn't? Where do I want to live, what do I want to eat, what do I want to wear? (As you start to realize you don't always want to wear so much gray and black.) How much time do I want to spend alone, how much time do I want to give to outside interests and people, how much time do I want to spend on housework and errands, compared to how much time do I want to spend on creative pursuits? And which creative pursuits? Writing, music...trying to draw? I prefer the company of my dog to that of most people...is that okay? I just want to figure out who I authentically am and live an authentic life based only on what I really want to do...I spent so many years having to take care of others and follow (at least in part) others' agendas, that now I only want to do my own "thing." While I still can, before I start to age out and my own health starts to go. I like guys well enough, but I think I'm past the stage of wanting to be in a relationship. I enjoy my friends, but often just feel like doing things alone, so I can do exactly what I want, with no compromises.

    As Wolf said, these may be thoughts worth considering, here at the five years point A.L. (After Larry.)
    • CommentAuthormyrtle*
    • CommentTimeJan 28th 2020
     
    Elizabeth, You've summed it up well. The part about depression is apt. Even if we aren't depressed, the way we are forced to live during Alzheimer's is the way a depressed person lives, so the difference becomes blurred. What surprises me is that I've not been able to return to my "old" self, i.e., the person I was 30 years ago, before I met my husband. I thought that since I lived as a single adult until middle age, and had years of experience living on my own, I might do better than those who had always been part of a twosome. But it's been 3 years since he died and I still miss him as keenly as ever. I can't even say (as so many do) that I'm "glad he is finally at peace." In fact, I wish he were still here, even with Alzheimer's, so I could hold his hand and see his sweet smile.
    • CommentAuthorCharlotte
    • CommentTimeJan 28th 2020
     
    You are right on about 'authorizing' ourselves to do things.

    I try to sleep in the middle of the bed - if I get there before the dog cuddles up next to me! I am often awake until 2am or later. Some of my favorite old programs are on during the middle of the night. I like Cannon, Mannix, etc. which MeTV has on then. I don't mind sleeping during the morning hours even until noon. For me the days are more lonely than after 9pm. Maybe because he was usually in bed by 10 so I am use to be alone after that. I still go to be around 11 because in bed I am warm and don't have to run the furnace. I also often have the TV going all night. At times it could be on a channel or have music playing - both turned down so I barely hear it but still there.

    Many other changes I have not given myself permission to do.

    Wolf - as to your smoking: my mom always said I have to die from something, I might as well enjoy it.
    • CommentAuthorDRA
    • CommentTimeJan 28th 2020
     
    It has been 19 months since Dave died and I still can't put into words exactly how I feel. Like myrtle* I sometimes wish he was still here even with Alzheimer's so I could just touch him. This is even though I know he wouldn't want to live that way and willed himself to die before it got that bad. He always said he would starve himself before he became someone just sitting in a nursing home and that is practically what he did. I haven't "authorized" myself to do anything. I work full-time and tell myself I can do anything I want, but without him, there is nothing I want to do. I can't even make a decision to pick out a restaurant when I go with friends. I just tell them, "you pick". Food doesn't really mean anything to me, if I didn't work, I would lay on the couch and watch Hallmark movies all day and I know that sounds pathetic. I go and watch my grandson's play their sports and for a little while, forget this life I'm living. But it really stinks and I'm not doing a good job of appreciating all of my many blessings. I just can't put it into words like so many of you. Know that I have very seldom commented but read this board quite often. The words written here do touch me. Thanks for sharing your most inner thoughts.
    • CommentAuthorWolf
    • CommentTimeJan 28th 2020
     
    DRA,

    First of all that doesn't sound pathetic to watch movies. You're hurting and you need moments to get away into. Everything you said sounds familiar two years later. I'm sorry about that, but that's how it was for me too - two years later I was still well inside the grips of what I went through which includes losing my other half. Allow yourself ways to cope and allow yourself time to heal. It took five years for me to be able to know it's all back there somewhere (just like all my memories). For me it's worth it even though it dominated more years of my life.


    Human beings are terrible at respecting the idea of mental/emotional conditions. Look at what you said (which all sounds 'normal') and understand that this is not the normal you. You're not forever going to be in the grips of having been traumatized by life. Caregiving is extreme mental abuse perpetrated for years on the victim. That does different things to different people but it does beat most everybody up. I'm grateful that I don't feel those things anymore. Even pronounced anxiety and apparently acute clinical depression have left the building.

    Charlotte,

    That's the thing. Our answer, and not what anyone else thinks.
    • CommentAuthorCharlotte
    • CommentTimeJan 28th 2020
     
    DRA - even though my husband is still alive Feb 6th will mark a year since he was placed for good. Today I am going through some of that mental abuse Wolf talks about. He was removed from hospice today because he is not loosing weight anymore. Back in Sept and Oct he had episodes where his heart slowed down so much we could not wake him which along with the weight loss is why he went on hospice. In my heart I was preparing for this to end, looked forward to it. In my logical mind I knew this could come and go on for months or years which I don't want. March 9th marks 12 years since his diagnosis.

    A big problem when you are two is: how do you live as one? I was one of those that went from home at 18 to marriage - I never was on my own. This is all new to me except I am not a lone, not single but not married - a living widow. The director of the facility says to go out and have a life we will take care of him. Easier said than down. I have not given myself permission to go find that life. It is just me, myself and I - have no idea what I want. I hate to think of what it will be like when he is gone. Will I give myself permission to move on or will I still be stuck in this limbo - I don't know. From what others here have shared for me probably the limbo.
    • CommentAuthorDRA
    • CommentTimeJan 29th 2020
     
    Thanks, Wolf for your words, I always look for your comments and can relate to many of them. We are terrible in accepting that we can be weak and that we need to take care of ourselves. I have always had a strong faith, but this rocked me far greater than I could have imagined.

    Charlotte, in some ways I equate Art to Dave. I sometimes think, this could have been us. I feel for both of you and wish that there would be something I could say that would be of help. As we all know, this is a terrible way for all of us to lose our other half. It was always Sandy & Dave from the time we were 16 years old. We were 3 weeks shy of 48 years married and a total of 54 years together. It just wasn't supposed to be that way.
    • CommentAuthorWolf
    • CommentTimeJan 29th 2020
     
    Charlotte,

    Unless you're completely shallow, you're not going to get away from spending time being nailed to a tree and suffering for some time afterwards. That's because shifting from endurance without pity to some kind of full closure is beyond what most modern soldiers ever endure both in extreme experiences and in time served.

    I think most caregivers grossly underestimate how much the role costs. If someone is kidnapped and held hostage for years we understand clearly the trauma the long, gruelling experience must have inflicted. Dementia is just as effective in holding hostages and producing trauma for long, gruelling years. Our empathy for the first example is through the roof; our empathy for the second example is non-existent.

    That's because love, and duty, and volunteering obscure the facts. That's because the same medical groups that provide help for the spouse don't give a shite about you. There is no respect for what is inflicted on spouses by long term, fatal illnesses anywhere - including in the spouses.

    It's like this because the whole experience is insane. The spouse is there but they're not there. The spouse you are living for blames you or attacks you. The spouse has so little prospect we wish for them to pass peacefully - while at the same time having to deny our own pain being in this nightmare so we can keep going. The director of the facility says to go out and have a life we will take care of him - not realizing that's insane. Nobody wants to think clearly about this because it's too painful unless you're skewered inside it.

    I'll tell you something about virtually every spouse that has gone away mentally or physically. Unless they hate you, they don't want you to pine for them too long because it hurts them to watch you do that. We don't need permission to live our lives when we're actually wrestling with trying to recover - or still in the role. What we need is permission to recover from hardships that prevent us from feeling like ourselves, and therefore block us from living like ourselves. We need permission to feel the pain of the damage to our lives and the loss of our loved ones. We need to believe there isn't anyone who matters that doesn't want us to have that - including our spouse at the center of all this.

    Until we believe those things, we survive afterwards. And until we've each had enough time spent recovering, we don't really open to that journey except as the walking wounded. I haven't solved my life. Who does that anyway? The chains are gone - and that doesn't just make everything easier - it makes things possible.
    • CommentAuthorWolf
    • CommentTimeJan 29th 2020
     
    Hi DRA,

    Read what I just wrote to Charlotte because it applies to all of us including me. I want to say "give yourself a break", but it's more "give yourself permission (or authorization) to understand how hard going through this is".

    It takes or took real strength to battle through these nightmare experiences and doing that undeniably shows good character. There are real effects to us because these are powerful things. Don't give up on faith because life became horribly hard to bear. The evidence is that you have strength and character. Those are good cards to have.

    I have no faith in any earth based formalities. I'm what you might call an atheist - which isn't accurate. I believe in the abilities and confidence of the universe. Science is largely faith. That's because no person has the ability to be informed on all subjects. Some are experts in a small handful of fields. Therefore all empiricists accept most things on faith.

    Allowing ourselves to feel bad while we try to discover what will make us feel better is just another example of why I keep saying this planet is nuts. Go with it.
    • CommentAuthormyrtle*
    • CommentTimeJan 29th 2020 edited
     
    Charlotte, They have a lot of nerve telling you to go have a life and the will take care of Art. If you didn't constantly check on him, he would not even be clean. Maybe if they did their jobs, you could at least relax a little. Anyhow, in my experience, even if your spouse is well cared for in LTC, you need to check on them.

    Elizabeth, It seems like one of your best decisions was to move back to NYS after Larry died.

    DRA, I hope things will get better as time goes on. Like so many people on this site who were with their spouses from their teens, you have a lot to get used to.
    • CommentAuthorCharlotte
    • CommentTimeJan 29th 2020
     
    Ya - proof they will not take care of him. I received a call about 1:15 today. They wanted me to come give him a shower. He had pooped and needed one but would not let them do it - was swinging at them. He refused to undress until the girls left the bathroom.

    One thing myrtle I learned early on from this site was we still have to advocate for them and that can be just as stressful as having them at home. I think I don't try to move forward any because seems every time I think to start I still have to go backwards.
    • CommentAuthorWolf
    • CommentTimeFeb 5th 2020
     
    For my money, Alzheimer's or any progessively debilitating dementia is an excruciatingly long process of increasing hardship and pain that finally kills the patient and decimates the spouse.

    I can get a sense of the kind of damage it does when I look at my cats. This is our third set of female cats, and they weren't neglected, but we adopted them in 2006, the year Dianne first showed signs that something was quite wrong. They grew up during those years where Alzheimer's came to dominate everything and I have no memory of how I fed them every day, never mind gave them attention or affection.

    It's only in the last two years or so where I've been able to give them that, and they have changed remarkably in that time. The abused cat who is turning 16 this year has for some time enjoyed talking back in her squeaky voice. The younger one turning 14 this year now so looks forward to going to bed with me that she complains when I'm up too late, rolls all over the bed getting patted, sticks her face into my magazine, and sleeps snuggled up against me.

    I've lived alone for eight years now, three with Dianne in a nursing home, and all these changes have only come about in the last two years - because life (me) began to offer that to them.

    My own life has been the reverse. All affection or attention was steadily taken away, all friends and family seemed to abandon us, and life kept getting so horrible I lost all sense of anything but trying to survive it.

    I've watched video clips of lab chimps and other animals being rescued and given normal places to live, and I cry because they are my brothers and sisters - where at least I get to watch some being helped to a better life. I don't feel bad about the cats, but I can sympathize with them because I realize they also paid part of the price.

    There's no blame in dementia. It just happens. But often the sufferer loses touch with who they are or where they are or how to use a fork, and all of the horrors that happened, all of the suffering that entailed, all of the effects of those years, end up in just one place. Us.

    My psychiatrist friend explained that the kind of thing I went through (we go through) is very serious. She explained her job is to try to help people find ways to cope better and preferably find frameworks within themselves they can work with and build from. She explained that's how it was for her when her mother committed suicide jumping in front of a subway train when we were in high school because of her abusive father (not sexual). She was in analysis for four years while being a professor of psychology before she could find her own framework she could build from.

    She explained that one of the keys is to be able to sit in it (the issues) and try to process it - rather than flinch away or deny the hurt that is the dysfunction. That's almost funny that most people who get beaten up so badly by life they hardly know who they are, must then try to heal themselves without any instructions or help.
    • CommentAuthorWolf
    • CommentTimeFeb 5th 2020
     
    -2

    That's what my cats showed me. That all of life's creatures respond to nurturing and help. "Who helps me?" I used to ask them. I understand the answer to that now. And it makes me sad because I know how convoluted and random my own road largely through such a thing has been.

    I'm a very sensitive person. I have tons of examples over fifty years that I sense more of what's going on than a normal person. People have told me all my life that I'm very smart but I'm not. I was given an analytical mind that just never rests. That's what they're seeing and I'm just as surprised as anyone else. There is no strong person inside here. There is only me who understands weird things such as that this is actually one of the coldest periods in earth's history and climate change always happening is simply entering the lexicon at this time. Sea levels have been rising for 17,000 years or so since the last ice age and only now are we noticing. The CO2 we're dumping into the air is accelerating that, which has caused us to notice, but the real threat is methane trapped in the permafrost and that's not on the table yet. That's what it's like in here. Tons of stuff nobody really wants to know, including me.

    I never listened to my feelings. My feelings were a ball of pain. I wrote here years ago that I threw the keys to my mind and said "here, you drive" and I curled up in a fetal ball in the back seat. Anyone reading that probably thought I was joking. Well, I wasn't.

    I learned so many things from this horrific, fifteen year car crash, I couldn't count them. I've written a number of them here over the years. I'm more able to use some of them now. So when my sister stopped talking to me because I had the nerve to say I didn't hear from her kids either, I opened a different door and called a friend who lost her husband almost seven years ago where the four of us spent most of our lives as close friends.

    She wasn't home but called me back an hour later and we talked for several hours catching up. She's retiring next month and just wrote me this morning to ask if coming out on a weekend in March would work for me. Yes it would because I'm willing and she did say in that phone call that it was good to see that I was finally re-engaging in life. Too true.

    If you can get tired of this like Charlotte, or re-engage like Paul seems to, or give love to your dog like Elizabeth, or can still enjoy playing golf, or keep your faith - these are all signs that you're still in there. And then one day, what seems like a hundred years later you don't just remember "God helps those who help themselves", you help yourself. Some do all the way through. I wasn't that strong.

    I still have some depression. I guess I don't have 'acute clinical depression' anymore. I feel sick in the pit of my stomach. Nothing has been solved. There is no joy in mudville. But I'm coming at it now in ways I can see I wasn't, and my money is on me that with similar willingness, I can improve my own life in a similar way that willingness improved the life of my cats. What a thing this all is. And whatever else you do, don't listen to me because I have no idea what I'm doing. For example, it was right that I gave myself time (years) to recover. That doesn't work for everyone. What works is someone putting aside their concerns and concentrating only on helping your life get better - but that rarely happens, unless you're my cats.
    • CommentAuthorCharlotte
    • CommentTimeFeb 5th 2020
     
    Interesting you brought up the permafrost. I was watching a show the other night that went to Siberia to talk to a guy who has devoted his life to living in isolation studying the permafrost. As it thaws the decay critters that were frozen is releasing more CO2 the the rest of world. He has found by cutting down all the trees that have taken over has allowed the ground to stay frozen so the decaying is not happen.

    You talk of your cats, my dog is driving me crazy with her neediness. Ever since she had her dental work done last fall she suffers now from separation anxiety. She would rather go stay in the car than at home but sometimes it is too cold to take her. When I get home she is shaking and crying. At least she doesn't bark non-stop like the neighbors old dog! She was an emotional support dog but the lady is busy with 2 year old twins so the dog doesn't get to go everywhere with her now.

    Back to your experience you are true. I went through counseling in the 90s to deal with I thought my husband's affair in the 80s but we concentrated on childhood abuse. After a year the money ran out so I had to quit. Then I took lay counselor training at a Christian counseling center then did counseling for 2 years. I think I made the most progress in healing while helping others. Maybe I need to go back to that.
    • CommentAuthorWolf
    • CommentTimeFeb 5th 2020
     
    That might be something worth thinking about Charlotte, and that's something you could do for years to come. That's also something to consider when you look at what and where you might want to go in the future. Somewhere where there's some opportunity to get back involved in counseling. It's something to consider.
    • CommentAuthorJan K
    • CommentTimeFeb 8th 2020
     
    I'm not in the stage yet when I might think about recovery. Instead, in less than two months I will begin my eighteenth year of caregiving. Lately I've thought that I might be sad, or depressed, or completely burned out (all of which are most likely true), but what I've finally come to realize is that I'm actually slowly losing my mind. I don't say that lightly. You can't be a caregiver for this long, especially with very little outside help, without it doing something serious to who you are as a person. You can't be nearly housebound with someone who is demented and who can only rarely manage to form a complete sentence, without it damaging you.

    Yesterday, while talking to my sister, I said that the only way I've managed to live with our situation for so long is by shutting down every single normal human impulse. It shocked me to hear those words coming out of my mouth, but I realized they were true. People always tell you that you need to take care of yourself, but it's nearly impossible to do that when the person you are caring for needs something constantly, and you are also responsible for every single thing that happens in both your lives.

    Our apartment living situation has become very draining, with constant noise and lack of maintenance. After looking for somewhere new for a long time, yesterday I went and applied for a different apartment. It's brand new, which means it wouldn't require extensive cleaning, and there are no noisy neighbors overhead. Last night when I tried to discuss moving with DH, he talked constantly for 20-30 minutes, and out of all that time, there were maybe three sentences that had any meaning. The rest of it was unconnected words, or just random sounds. I had been wondering how the two of us could live somewhere so small, but after that, I thought that perhaps it would make a lovely little apartment for just me. I think that it's time I tried to start putting myself back together. This seems like the logical time for a transition. But I still feel guilty... I wish there was some magical pill for caregiver guilt.
    • CommentAuthorJan K
    • CommentTimeFeb 8th 2020
     
    Continued--
    This year DH and I will be married for 50 years, but over a third of our entire marriage has been since diagnosis. And there were some years before diagnosis which don't bear looking at too closely, because of the pain this disease was already causing. I've spent nearly a quarter of my entire life being the wife of someone with dementia. I barely remember what we were both like before all this started.

    I don't really know if Humpty Dumpty can be put back together after this length of time. So much scar tissue has formed that I don't think all the pieces will fit back together again.
    •  
      CommentAuthormary75*
    • CommentTimeFeb 8th 2020
     
    No, you'll be all right. Even lovelier with the cracks all healed. I believe in you.
  3.  
    Jan, get ready for him to be much more confused in the new place, at least for a while. And I can't remember what kinds of help and respite for you have been discussed over the years--but you need some help. It is not realistic for you to keep doing what you are doing in light of how it is affecting you emotionally and mentally. And probably physically, too. I know that so many programs and services are a cruel joke--well-meaning people who don't really have a clue, and don't really like to get down into the down and dirty. But if you could find the right person or the right program, just so you could get away a little and try to hold onto a shred of yourself, it would at least be something. I suppose we have discussed placing him, but I can't remember the threads or the conversations. It does sound like it is high time...if it is something that would be do-able. Most of us have been where you are now. There are few things more damaging--it really is a nightmare--and you must not let it destroy you.
    • CommentAuthorCharlotte
    • CommentTimeFeb 8th 2020
     
    I agree Jan about the mind. I have a hard time, more than before, remembering peoples names. All the tricks I used in the past don't work anymore. Even though I don't have him at home, the only conversation is when I visit and talk to the aides.

    Like Elizabeth, I don't remember if placement is possible for you, but might be worth looking into help even so you can get away for a few hours. I do like the idea of moving to a place quieter, might even meet some people who you can have conversations with.
    • CommentAuthorWolf
    • CommentTimeFeb 9th 2020
     
    Jan K,

    I also became convinced I was losing my mind. That was true at the time when all the good thoughts and feelings almost totally vanished, and the rabble that moved in made the four horsemen look like supermarket rides. Shutting down 'normal human impulses' (like laughing or dancing for instance), is sound because you're absorbed with surviving this.

    You sound sane, normal, and familiar to me. You failed to mention that even eighteen years of this oppression haven't managed to take you down or stop you from continuing to try to figure that survival out. Notice your consideration that the apartment in time might suit you.

    I can easily understand that you feel guilty about giving up your life to take care of him. I think caregiver guilt is very common and I had it too. The fact is though, that these types of feelings come with what is happening, and just as they take years to develop, they also take years to get rid of.

    I wish there was a magic bullet. I don't know of one. Stay strong, as you can.
    • CommentAuthorWolf
    • CommentTimeMay 17th 2020
     
    Something new is creeping in. Some of that may be the creepiness of having no sports anywhere and not being able to go and do anything normal without endangering life and limb. I don't believe that though.

    It feels more like very unpleasant side effects of broad daylight. The little bubble I lived in isn't working anymore. For instance I spent a long time feeling like friends and family abandonded us, yet now when doors are opening I live in the distrust and frankly the fear of being hurt again. On top of that, I don't want what is being offered - which is what is called close friends just as long as you stay within the accepted narrow boundries. It's not their fault that I've changed like this; but, there's no way for me to believe in that the way I once did and while I crave the socialization - it's not capable of feeding my needs.

    I'm in a perfect little trap I can't blame anyone for. I don't open up to things or want things. I do them because I should which isn't an effort anymore - but it's not creating a world I'm moving in to either. The cats are getting more love from me than any pets I've had. I know they're on their last legs though and are going to rip me up soon. I'm surrounded by truths that add up to me being damaged by things that happened in my life.

    I've always had the 'excuse' of recovering and healing. That was true too. I've understood for many months now that I have recovered and that I've stopped changing noticeably because this is the real me. I don't have problems coping with how I am or my day anymore. What's creepy is that I can see that there's zero part of me that's considered moving into something rather than just through it.

    I can see how much I've healed. I have a good memory and good notes that have no problem showing me not only how weird I got, but how far I've come away from that. What is only really dawning on me now, is that my own plan for my own future and fulfillment is an absolute vacumn of nothingness. I don't have 'want' inside. I've never even missed wanting or looked there at all.

    It's like the patient saving themselves, and once they did, looked around and realized they didn't have a single clue why they saved themselves. What's it for when you can't imagine anything good that feeds the soul?

    I think deep down inside where no pyramid builder ever imagined sealing something so well, there is a reservoir of pain where I never opened to my feelings about Dianne. I couldn't face that AND endure - so I endured. It doesn't matter what the reasons are. I'm here and I either find ways to change this or wither on the vine until I run out of time.

    When I started out here after my wife passed away, I had no hope, no vision, and no ability to look at my life or my future back then. I only had the determination to walk out of the valley of death and be free of it. To all intents and purposes I did that. Now that I've moved in, only now, am I coming to realize I need things I completely neglected if I'm to have any kind of life beyond existence. What a thing all this is.

    I haven't seen that. I haven't believed it. And the sum total of what I've tried to do there is absolutely zero. As I'm writing this I can hear the truth of it. I have to stop thinking in terms of protecting myself and enduring and fighting the good fight. I need to put the burdens I no longer need to carry down and free myself to start learning how to enjoy some things, how to invest in having interests I open to, how to want things in my life. I need to teach myself to start looking for better stuff.

    Right now that seems like learning how to speak Mandarin. It's completely foreign and way over 'there'. On the other hand I've never tried to be this personally honest with my own feelings and that's a good thing because anything I can do now is up from zero.

    I've talked to more people lately than I can shake a stick at. Every single one of them has said how good I sound - including the person on this board I had a good talk with last week. I need to take that in. I need to take a lot of things in that all add up to me having good feelings about things again and not shutting myself out from doing that. I'm pretty sure that's true of everyone in the sense that life is better when more of our better feelings can come out in it.

    Here is the story of Wolf, who went out there where few have gone before (according to my psychiatrist friend) - and forgot why. Wish me luck. In fact, wish all of us luck.
    • CommentAuthorCharlotte
    • CommentTimeMay 17th 2020
     
    Wolf, you post hit close to home.

    I had Art home for a few days last May including for our anniversary before placing him where he is now. I was thinking this morning I am starting my second year alone. I never feared going on trip either in a car or the MH because he was with me in the MH and if a car I could always call him if the car broke down (when we had two vehicles). I think the fear of traveling started when he could no longer drive - I had no one to come rescue me. Now I would love to go visit a friend or my sister but it would be alone, no one to come rescue me - otherwise I would only have me and be at the mercy of the towing service or unknown mechanic.

    Not sure where this part of the journey will take me. Will I have the courage to travel - will fear take over the will?

    I know I need to reach out and make a life, new friends, but so far I seem to find only those that need someone to listen to their complaints and whining. I befriended her about 4 years ago - she is the one with the botched knee replacement. The last couple weeks she has been calling about every 3 days. The only friend she has in Yuma where they live has bowel cancer and probably won't make it. The night before my anniversary she called, talked for over an hour about it with me saying very little. Her other phone calls are complaining about her husband, how much she hates him, how he does everything to irritate her, and a jerk. She has been saying for the 4 years how she wants to divorce him but she never will. She depends on him for too much. She reminds me of a couple on Dr. Phil whose divorce was final in March but because of Covid 19 she can't move out and refuses to sleep in the spare bedroom instead still sleeping in the same bed with husband. They fight like cats and dogs just like my friend and her husband. They have their whole marriage - something I don't understand.

    The social isolation put on hold on getting involved in church or senior groups. Finally had gotten the courage then was stomped on. Now when this is better and things open up more, I will have to start all over. I have always been one who if I knew I could not be successful, I didn't try.

    As you progress into a new life Wolf and others, it helps me to convince myself I can.
    • CommentAuthorWolf
    • CommentTimeMay 18th 2020 edited
     
    It's a big blind spot to throw away what you're going to need because you can't think like that. That's what Alzheimerspouse did with it's stupid stars. It was the continuation of the brutal and consistent message all help centers send - which is that only the sick spouse matters - and the second they pass away, shut up about anything that isn't widow related.

    Instead, among thousands of needs, there is one stupid story of one person floundering around afterwards on a thread where Elizabeth occasionally joined in - and that's it because it wasn't authorized or envisioned that people don't spontaneously heal from the dementia they never had. Healing from that is part of everyone's Alzheimers experience.

    That's what I mean by kiddie pool and bubble thinking. I'll get along fine at the group cottage things as long as I don't mention old age or any of the things that group think doesn't want to know about. Stay inside the bubble. That's not a bad thing. It just doesn't work when you ARE outside the bubble.

    I'll tell you why you're going to make it. You don't transfer narratives. If you own it then you face it. That's going to see you through. That doesn't mean you don't have pain or the feelings that being tortured for years and then abandoned brings. It's not family and friends that do that - it's dementia caregiving that does that (usually).

    Family and friends even when you're flush with them are never going to save you or provide you the life you no longer have. We can get involved with things and we can get involved with people; but, we're definitely going to be spending the time with ourselves. The only road I know is to try and not become bitter or despondent while learning to gradually move in to the life we have.

    In my world, I may be facing the last vestiges of the old ways. That is to stop saying I'm over it and start believing it. And that in a nutshell is to stop being defensive and instead spend energy trying to invest in and grow better things about having a life at all. Not so easy, but then life has never seemed easy.
    • CommentAuthorCharlotte
    • CommentTimeMay 18th 2020
     
    what is your mistake?
    • CommentAuthoraaa
    • CommentTimeMay 18th 2020
     
    I must have missed this thread awhile back. I know my mind isn't what it was - not sure if it's just because there is so much to do or if I'm reaching that point where I'm beginning to have problems. I told you I had talked to my Dr about needing some mental health counseling, she sent immediate referral, but the first opening they have is in August. I didn't take it. Figured I'd probably not need it by then for one reason or another. This covid-19 has sure messed up life. Store have no stock, can't get out and around, more and more places closing for good.

    If one more person says I just have too much on my plate I might lose it altogether. Do they think I don't know that? But no one offers to come help with the work. So as Charlotte says, it just leaves me to do what I can. I have been wondering if I'll be able to do much driving after a few more years of this. I reminded dh last night about the trips we used to take. I thought maybe a short day trip to a park we've been to, beautiful place -- he asked if I knew where it was and I said yes. And I do, but after thinking about it, it's only two hours south of us but a roundabout way to get there. I would have to use the nav in the car now. Makes me nervous to think about it.

    Jan, I really empathize with you, we'll have lived here 5yrs come October and dh has never gotten used to it and never did any of the things that we'd planned. Now I either have to do them or try and find someone. It was a big mistake but too late too smart.You're talking about some of the things re apartment living, that I worry about. Which is why I tell people we'll stay here till they carry us out in a pine box. I love the property, love the seclusion, hate the fact that we didn't get things done we'd planned to and now never will. Wish so much I had my house back, even if it was in town. Even my one living sister gave me a harsh talking to Sat - when I sure didn't need it - that we don't need all this property, the horses, I know dh isn't going to get rid of anything, etc, and so on. I told her I won't sell no matter what RE is going for now, because we have to live someplace and I don't want to buy another house. Nor do I want to rent an apt. dh would part with me before the cats and dogs and 3 of each are not welcome in rentals. Although she was widowed fairly young, and for 10 years, she remarried a guy her age with money. She seems to forget they are both years younger than we are -- so still can make plans. I feel with Jan, I don't think I will ever have a life again so not sure it's even worth it to think about. I don't think in terms further than 5 yrs and not sure about that. I know there are old women who live full lives and come and go, but i don't think I will be one of them.

    Charlotte, all my old friends, who are still alive :) are slipping away. I'm sure I'm not the same person I was - got too many worries to be carefree. Dh doesn't want to go anyplace or have anyone come here so it's just the two of us. Wild animals out this morning - very, very early. The dog would not let me sleep so after letting him out 4 times, I just stayed up.l Did get some things done before dh woke up but there is something that happens once he's up that seems to drain everything out of me. His needs always come first. Right now he's insisting on buying a $4000 field mower. We had one 20 yrs ago and they are nice, but even if I wanted to spend that much money, he breaks every mower we have and/or it stops working because he doesn't remember they need oil and maintenance. We have two riding mowers and two reg mowers that don't work, and one that works fine when he remembers to put oil in it and actually goes outside to mow. He hurt his hand really bad last week, pulls the cord with brute strength which he doesn't have anymore. Cost us $80 last year to get it repaired. I'd like to sell the others for parts to get rid of them but just don't want the bother of people calling :) And when I mention things like needing to get rid of them, even the dumps, people who say I have too much to do never offer to come help get them loaded up or anything else.

    To close on a good note, my no-med policy night not be medically sound but I sure feel better. After fighting insomnia for 10 years I can just go to bed and fall asleep for 8 hours. My BP is still a little too high, but getting better and kidney function better. Go figure.
    • CommentAuthorWolf
    • CommentTimeMay 18th 2020
     
    I had one of those senior moments. I thought I'd posted to the wrong thread so I fixed that by moving it to the wrong thread. I've corrected that now. I think.
    • CommentAuthorCharlotte
    • CommentTimeMay 18th 2020
     
    Oakridge - have you thought about some supplement that is suppose to lower BP? Magnesium helps me some as does niacin. I keep looking at the 'super beets' commercial which is suppose to help BP and lower bad cholesterol. I am one that loves beets but I guess I would have to eat a lot of beets to equal what is in one glass of it.

    I understand the mental change when he gets up - went through that. I was talking to my friend last night - the one with the botched and painful knee replacement who is always fighting with her husband. She gets bothered by a rash which she has had since the knee replacement that had nickle in it. She usually sleeps days and is awake at night. When her husband is sleeping or is gone she is OK but as soon as he appears the rash gets worse and itches. She finally nailed it which I have felt a long time - it is her reaction to him.

    Life sucks!

    here is some encouragement: Very encouraging & scientific message about Senior Citizens:

    Brains of older people are slow because they know so much. People do not decline mentally with age, it just takes them longer to recall facts because they have more information in their brains, scientists believe. Much like a computer struggles as the hard drive gets full, so, too, do humans take longer to access information when their brains are full.

    Researchers say this slowing down process is not the same as cognitive decline. The human brain works slower in old age, said Dr. Michael Ramscar, but only because we have stored more information over time. The brains of older people do not get weak. On the contrary, they simply know more.

    Also, older people often go to another room to get something and when they get there, they stand there wondering what they came for. It is NOT a memory problem, it is nature's way of making older people do more exercise.

    SO THERE.
    Now when I reach for a word or a name, I won't excuse myself by saying "I'm having a senior moment". Now, I'll say, "My disk is full!"

    I have more friends I should send this to, but right now I can't remember their names.
    • CommentAuthorbhv*
    • CommentTimeMay 19th 2020
     
    Seems like every time I’m feeling devastatingly alone with no hope of help in sight, Wolf posts something containing some of the same words that are rolling around my head.
    Like looking at a future of nothing and/or emptiness. Lately I’ve been asking why this isn’t enough any more. When we retired here we did our own thing all day and met for a beer on the patio and marveled at our happiness to be able to live in our little bit of paradise. The yard reminds me still of a favorite campground from my childhood. We used to say people save up all year long to spend a week or two in a place like this. We get to live here. And we have real beds, not army cots and a canvas tent. All that is still true, but doesn’t feel enough. Feels empty.
    I have neighborhood girlfriends and some of the young ones check on me in this pandemic and that’s nice. But, like Charlotte, most of them talk and talk and talk while I listen. If I try to say something I get interrupted. And they don’t understand what’s rolling around in my brain anyway. So I find myself not wanting to communicate with anyone. I want them to leave me alone. But I miss sharing my day with my husband. So sometimes I share something on Facebook or send an email to a brother. Then I feel silly because those people don’t share little things like that with me. I think I’m wasting their time. So I clam up again until my friend Patty calls and says, you’ve gone quiet again. But then she talks for an hour or more never stopping for breath. I say bye, thanks for calling.
    I keep finding myself checking here. Just in case someone has a question I could answer. But I’m reluctant to talk about where I’m at cause I don’t want to tell the ones in the trenches that it’s not all rosy “afterwards”. For now I’m hanging in there because there’s so much work on the property to get back to pre Alzheimer’s state and perhaps ready to sell. Gotta stop now.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2020
     
    That's funny Charlotte!

    The thing about what I wrote is both that it's true and that I own it. I think I know why we feel that negative, close down, unobtainium way.

    Being treated (by life) the way we have for so long does things to people. It doesn't have to make a big noise about it. Much of what it does is very subtle. Like trust and willingness and belief - and overall resistances inside to coming towards things that have both risk and reward for us.

    I always feel like I shouldn't have posted this or that. That I shouldn't have sent the thing around I did (even when I get good feedback). It comes with having lost so much while being mistreated (again, by life). That feeling manifests itself as doubt about acceptance or disapproval by others or being cast out. Welcome to the club. That's not going to go away until we reach an equilibrium state inside. I wouldn't hold my breath. Instead start to live with it by accepting what it is, why it is, and that we need to overcome that as we can.

    "We have met the enemy and they are us." And, it's not our fault. It comes with the territory that we live(d) through. It's like the wind whistling through the old cabin. It's just there and like every other thing, it can be worked on. A good place to start is by teaching ourselves to accept that some damage came along with what we went through.

    That's best done by thinking about what other people here went through because we can be much more objective about that. Respect what they went through and realize that the same respect applies to what you went through - however much we're in our own way to do that. It's just a fact.

    I have moments. I have conversations and things happen that make me feel good. They don't last because I'm not really there yet where the remnents of the dread still exist in much of the land. THAT is where I am. I can still learn though and I can't think of anything much that's more useful to learn right now.

    Last night I made the best chicken and shrimp curry on rice I've ever made. It was outrageously delicious. Then I ate an entire bag of crackerjacks (caramel popcorn & peanuts), and a snickers chocolate bar. Then I felt bad that I did that. Try and guess what feeling dominated afterwards.

    This morning I woke from a dream where we were all young and I was some kind of business man and I needed to get to San Francisco from LA - so one of the ladies invited me into her flying swan thing because she was going there. I woke up then and felt so normal in my whacky dreams that I could have been any age and anywhere. Then I realized I was in my life that didn't have anything like normal me in it. Bummer.

    I disagree strongly that we shouldn't tell others what it's like. I think people are reasonably good at learning things useful to themselves. I think the worst thing is feeling completely alone, and that it's better to put into our minds what others in similar boats are going through and what they think about it. That's not shared by many, but I strongly believe it.

    I'm off to make dinner and then fall asleep in front of the TV. Escape to the Country is on all night where one day I might want more and go for that. We can always dream.
    • CommentAuthorCharlotte
    • CommentTimeMay 19th 2020
     
    You can share all you want Bonnie, even send me emails.

    The isolation caused by this virus does not make it any easier to try and create a new life or just live the best we can. In many ways we are still imprisoned by Mr. Alz.
  4.  
    bhv* You certainly zeroed in on the situation that I also experience. I so miss having someone to converse with and it of course it goes way back to when the disease first began. The young people in my life (family) don't really want to hear what I am thinking or what existential angst I am experiencing. I also have to admit that I was probably that way with my own mother. I just had no idea what she was feeling or what to do about it because at that time I thought I had to fix everything. Now I know that listening is the best thing anyone can do.

    I have a few friends who are older than I am and are also widows. Whatever i throw out for consideration they have likely already thought about or experienced. But they are friends and not people I talk to everyday (the truth is that I value their friendship so much that I don't want to wear them out). I am a much better listener with them than I ever was with DH and I regret that.

    I too check in here but seldom post anymore. I will always read your posts and think about what you have said. This is a great place to not clam up - bored people can move right along, but those of us at the same stage will read with care and understanding what you write.
    • CommentAuthoraaa
    • CommentTimeMay 20th 2020
     
    I think I copied Wolf's senior moment. I wrote a post on a different thread but I think I was responding to what was on this thread. Maybe I'm not as sane as I thought. Charlotte, I take magnesium, can't take niacin and I too, have seen the super beets commercial but just not sure about anything that proclaims to be that good. Actually my BP continues to drop each week since I stopped taking all that medication, and I'm sleeping good. I had recently been thinking about how years ago I could just go to bed, sleep 8 hrs and wake up - now for years I either had to drug myself or not sleep. that is one blessing of stopping the medication, I sleep so normally now. I don't even care what my bp is as long as I can go to bed and sleep at night.

    Wolf, as usual, I do so enjoy reading your thoughts, but I especially like your comparison to caregivers being compared to being kidnapped.

    > If someone is kidnapped and held hostage for years we understand clearly the trauma the long, gruelling experience must have inflicted. Dementia is just as effective in holding hostages and producing trauma for long, gruelling years. Our empathy for the first example is through the roof; our empathy for the second example is non-existent.>

    I feel like a POW. I volunteered for the war but thought at some point it would be over. We've had so many good years together, it's a shame most of the memories have been wiped out with a decade+ of AZ. I've stopped scratching the days on the wall and hoping for rescue - right now I couldn't tell you how I will feel when it's over. There sure won't be any parade welcoming me back home.

    Thanks to all of you who have fought the battle and come through the other side. It's good to know you are still there and sending a few pearls of wisdom to those still fighting.
    • CommentAuthorCharlotte
    • CommentTimeMay 20th 2020
     
    oakridge - I totally understand how medication can be worse than the problem. Too often they are give medicines to counter the side effects of others. That is why I keep a tight reign on how many they the doctor tries to give Art. Thankfully where he is they don't want to do it. But sometimes you have to with dementia patients give them more than one would want so they have a better quality of life but more important life is safer for the caregiver.

    The last year plus since he has been placed I have gone through many grieving times. I can sometimes look at pictures and remember the fun we had doing that. What others have said here that afterwards as time goes on good memories can come back is true. We had a lot of 'bad' times which I dwelt on the last few years but I am trying to not go to those memories cause they hurt when I do and do me no good.
    • CommentAuthoraaa
    • CommentTimeMay 21st 2020
     
    I agree about the medications Charlotte. I've been trying to give DH less and less. He sees the dr on the 2nd of June and I had planned to discuss more changes. Now he is saying he won't go. I'm getting close to just taking matters into my own hands since he doesn't have any serious problems anymore. I doubt stopping satins etc would cause the cancer to come back. I wouldn't do it without talking to the dr but I don't see the need for so much medication for him. Even his diabetes tests at normal levels as long as I push his diet and exercise, I'm beginning to wonder if it's worth it. Why are we really giving him all this med? It's just one more thing for me to worry about. He's been taking aricept for several yrs now and I could never tell if it was doing any good, plus I've read that after a few yrs it loses any ability to help anyway.

    I guess it sounds like I don't care about what happens to him, but I'm much more concerned about what will happen if I go first. I keep thinking if we just forget anything that isn't necessary and let our lives take their course we'll be better off and may come close to crossing the bridge together.

    I did assure the doctor I wasn't suicidal, but didn't see the value in doing whatever to stay alive - just to say we're alive, he certainly won't get any better and my health is deteriorating. He is 83, I'm 5yrs younger. If he was still of sound mind it would be different, but az has changed both our lives.
    • CommentAuthorCharlotte
    • CommentTimeMay 21st 2020
     
    I took my husband off galantamine against doctors wishes. He had been on it for 6 years. When I took him off I saw no change so if it helped it was no longer. Best thing I did because AD causes in increase in stomach acid. He had GERDS years ago but had surgery for it in 1998. I refuse statins because they can cause memory loss. In 2008, before I knew much about them he took them. By day three he couldn't remember what he had done and with whom. I researched that night and threw them away. I also refuse it. Interesting thing is his last lipid test his cholesterol went down to 180, his triglycerides went way down, LDL went up and HDL went down. Didn't do anything special.

    My attitude is: he is dying anyway so why deprive of sweets and ice cream. And why should I give him medications that would just drag this out. Until the 'failure to thrive last winter and now loosing weight again, he has been healthy except for his brain! For me, I take thyroid which I have been on since 1985 and wellbutrin which I just started again. Otherwise, other than supplements I refuse others. I am only interested in living long enough until he dies since there is no one else to advocate for him. He is 72, I am 67. After he dies then I will decide if I want to continue working on keeping healthy to live longer. My mom, oldest sister and brother all died when the were 79 - all had dementia in various stages, so I may not have that many more.
    • CommentAuthorxox
    • CommentTimeMay 22nd 2020
     
    Statins is the first thing I stopped for my wife. I wasn't worried anymore about her having a heart attack 20 years in the future. Her doctors always consider reducing her meds when possible. Sometimes there are new meds and old ones will go up, but they will experiment with reduction and if that goes well elimination of a med.

    I also eliminated tests which seem pointless and cause aggravation. My wife had a thyroid node removed years ago. Continued seeing thyroid doctor every year to check for cancer. Negative every time. After the last blood test resulted in a fist fight with the person taking her blood and an order to stay away from any site owned by the company, I said no more thyroid doctor. The insistence on her getting tested every year when there was never a real problem seems ridiculous. While thyroid cancer is terrible looking at the odds of her having it and it affecting her before she dies of dementia related problems are remote.