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    • CommentAuthorLindylou
    • CommentTimeJul 31st 2017
     
    I’ve always known myself well enough to know that certain factors have played a big part in my being able to choose to care of my partner at home. She is, for example, really small. And even smaller now. I can actually lift her to slide her back toward the top of the bed. Her size has made it possible for me to physically care for her. She is and remains easy going, and while she has gotten frustrated at times when not understanding what is happening, rarely if ever was there an intent to hurt or threaten me. My health and age have worked with me in continuing with this choice. And my life experience in both my family and my job have made it possible for me to anticipate and prepare for what we would be up against. And truth to say, if any one of these factors had been different I could not do or have done what I am doing. I have felt all along that I have good coping and self preservation instincts.

    But for a few weeks recently I found myself feeling numb. I was going through the routines of the daily care my partner needed. I was saying the gentle reassuring words that were needed. I was holding my partner’s hand. I was feeding her, washing her, dressing her, transferring her. All while feeling nothing. If I felt anything at all it was a certain grimness. In fact I was just about to start a page asking “IS FEELING NUMB A SURVIVAL INSTINCT?”. Maybe it is. But then I said NOOOOOOOOO. I didn’t choose dementia - no one does. But I did choose the way I am providing care and I will damn well feel it and own it. All of it. The grossness, the smells, the repetitiveness, the frustrations, the anger when it occurs, and the occasional, very occasional, glimpses of recognition and love. When I’m up to my elbows in poo, I will laugh at the absurdity of it. I will say to my partner look what we got ourselves into. And then wash myself off. When I cook food for my partner, food that she has liked to eat in the past, food created in the consistency that she can swallow, food that I know she will taste and then refuse, I will laugh and say to myself, you know, Lindylou, with a little ground red pepper it might not be too bad a supper for you after your love has had a mouthful. I am going to find the joy in the moment, somehow or other. I am going to laugh at it all until I need to cry. And then, damn it, I am going to cry. And rage at the heavens if I need to.

    Maybe I can do this, the caring and the feeling of all the pain (and joy at times) that goes with the caring, because I know that it will not be long before she leaves me. I will shed this burden when she is gone. It is a burden. We all say we “do not want to be a burden on other people”. I understand that expression real well now. I will miss her and remember her, but I will be very very relieved at the same time when all this ends.

    I’ve always felt that if I was a good actor, I could feign love and that would/could be enough to fool the other, perhaps, but also to fool myself into actually feeling love. But really, in spite of my very best loving acting, all that was there for this period of time was the grey grimness. And I couldn’t stand it, coping mechanism though it might have been. It meant that DEMENTIA was winning. It would/will eventually win and has been winning by taking my beloved in small incremental steps away from the world she loves/loved and the people (and especially me) who love her. But I couldn’t/can’t let DEMENTIA take me from me. At least not until I may eventually have to face it the same way my beloved faces it now.
    • CommentAuthorCarolVT
    • CommentTimeJul 31st 2017
     
    Lindylou, you've said this very well. I wish you continued strength; love you do have. I wish I knew what to say. Thank you for being here.
    • CommentAuthorRona
    • CommentTimeJul 31st 2017
     
    i think I I understand what you are saying and your feelings. You want to keep loving your partner and you do love her but she is not there anymore. What is there is the shell of the person you love and that is present is the caregiving and the greyness. It becomes harder to see through that to the person she was the one you love.

    You are still there lindylou you are strong and you will survive this. It will have changed you but you will survive and at the end of the day you will know that you have done the best you could and life will go on. Hang in there.
    •  
      CommentAuthormary75*
    • CommentTimeJul 31st 2017 edited
     
    I remember going through these same emotions. Eventually I decided he had always been there, just hidden under the disease. I don't know if that happened to me before he died, or afterwards. Now what I have is a clear sense of who he was all along, and it is comforting.
  1.  
    I do think that at times you need the numbness as a means of psychic survival. If a caregiver is overwhelmed by the emotions all the time, it would just be too...well...overwhelming. And let's be honest here. It's going to be overwhelming no matter how you deal with it. Just because you are in a phase of "grey grimness" doesn't mean you love the person any the less. You're just trying to survive...because you have to...to take care of your loved one.
    • CommentAuthorbhv
    • CommentTimeAug 1st 2017
     
    Must be nice to have that love. I was on the phone the other day trying to sort out a financial matter. The young person's response to me saying my DH has Alzheimer's was, "That's what we do to take care of the ones we love.". That brought me up.short. NO idea how to respond to that. All that keeps running through my head is Tina Turner singing "What's love got to do with it?"

    I have long thought of taking acting classes. I am not good at pretending or lying, but am getting better and better at it. Now I am trying to become a zombie with a believeable smile because it keeps him more relaxed. When evil thoughts jump into my head I am trying to remember to ask myself if that thought is helpful. If not I tell myself to banish that. Not always able to do it, but according to cognitive behavior therapy, practice makes perfect. The problem with being a zombie is that although the experience of pain is muted, the experience of joy is also muted.
    Very difficult to think of living this way for 10-20 more years. But my hospice friend says it won't be that long. I don't believe her on this idea though.
    • CommentAuthorWolf
    • CommentTimeAug 1st 2017
     
    We're human beings made of flesh and blood where all who have ever lived have limits. This disease is an education in being pushed beyond our limits of experience both again and again, and without let up. The stress is continuous because we do find our way back to functional positions, but neither the built up stress nor the cause have been resolved.

    It should be clear that even as we continue to feel more pushed down (because we are), our coping skills are expanding greatly though unfortunately under a strong duress. My reason for saying this and my caution is that it's on the extreme edges where the tragedy of all this presents potential dangers beyond coping. In my opinion it's as dangerous to demand absolute method as it is to disengage from any method at all. The reason is that extreme duress has far less power against that which is somewhat pliable - even temporarily - than it does against the completely unyielding - even temporarily.

    As to being a zombie, I found exactly that experience. The shutting down of the range was a defense mechanism that worked because being hit by more bad news works better when you're kind of stunned to the viseral extent of what keeps happening. That did cost me in muting certain feelings. Not anxiety or depression or fear. No, that would be too practical. But I've found that, for example, noticing AND FEELING the positive things in balance with the negative things is still a work in progress.

    Speaking of practical, there is a wealth of information at the cottage on a lake or the christmas lodge for that matter. I know it's very hard to access this, but when we can put things aside for just a little and, even in our imagination, play for a bit - it shows us that that is there within us. We haven't lost those things - we're under siege. I agree with Elizabeth that numbness is a means of psychic survival. But a safe place to play for a few minutes, especially with others who know, is surely a balm for the soul. I don't want to overdo that, but it is real. Not the lake. The feeling.
    • CommentAuthorMim
    • CommentTimeAug 1st 2017
     
    Lindylou, you just simply blow me away! There isn't anything else I can even think of to say.....
    • CommentAuthorbhv
    • CommentTimeAug 1st 2017
     
    Hmmm, Wolf, I think I will take that "pliable" idea along with my "Is it helpful" idea - "even temporarily"

    I've found that NOTICING the positive things is a bit difficult lately. If I don't notice it that surely precludes the feeling part.

    I've been playing at the cottage and my little side trip for the last two days. Thank you for coming along today. It has kept me from exploding.

    I don't mean to hijack Lindylou's conversation. I know you are much further along than I am, but what you wrote really resonated with me. I like to hear about how you and your partner cuddle and still love each other. Makes me happy for you, and sad that that is declining so fast now. (((HUGS)))
    • CommentAuthorLindylou
    • CommentTimeAug 2nd 2017
     
    This may seem a bit of a ramble, but bear with me.

    You all, and I do mean all of you who have responded to this thread, have given me so much to think about. What would I do without this website? What you have said has made me think deeper about what I do both need and want during this time. You need to know that my partner is now "actively dying". After hearing this phrase from the doctor I looked it up and found that what it means is that the different organs of her body are now shutting down slowly. This is something I realized over the weekend was beginning to happen, and talking with the doctor yesterday confirmed it.

    Now during a period of my life I read all the novels by Charles Williams I could get my hands on. He wrote in the 1930s about the same time as C.S. Lewis, Tolkien, and Dorothy Sayers. In one of the novels, I think it was" Greater Trumps”, a grandmother calmly puts on her raincoat and goes outside in a hurricane like storm in search of her brother who has not returned home. Calmly she searches for him, not finding him, as winds blow, branches and trees crash down, and torrents of rain buffet her. She hears in the midst of all this a small cry and discovers an abandoned kitten. She picks it up and puts it under her raincoat where it promptly digs all of its claws into her flesh hanging on for dear life.The grandmother turns just as calmly and returns back home.

    I do not want the core of me to be destroyed by the overwhelmingness of this storm (thank you Elizabeth). Nor do I want the core of me to be buried in numbness under a mattress in the basement waiting for it to all end. . Does it have to be either/or? The storm is all around us now. I will be opening the door this weekend to family who will be adding their fears and guilt to the mix as if I am not already producing enough inner chaos myself. Now I have always felt the freedom to leave behind these emotions and go to a safe quiet place especially since Wolf opened up the virtual Christmas Lodge last December. And now I go to the virtual lake front cottage daily for short periods, to swim and to sit quietly with friends. I also go out to lunch in this real world with dear friends who know I need them. (But truth to be told, the virtual reality is in itself reality within me.)

    I'm thinking of pliability, Wolf. What if I just welcome anger to come in and sit quietly for a while with my friends rage and compassion grief, gentleness,grimness, pain and love. And tell them all I understand: We all of me, every part are hurting. Can my core of me survive in calmness? I am trusting so. I have to.
    • CommentAuthorWolf
    • CommentTimeAug 2nd 2017
     
    I've been waiting for you. Those first two paragraphs were my fourth version of what I would answer to you. What I heard in your post was strain. Not the strain of what you are doing which must surely be there; but the strain of your core idiom.

    You seem to design a self conception which then drives the powerful engines you possess to stay on message. What's unusual is the extent of consciousness where the act itself isn't unusual at all, it's the awareness of it and the extent of functional usability you access.

    I understand the idea of something once conceived then requiring to be executed but that ignores the dysfunction of being rigid in execution. It isn't in the execution of the thing that the meaning itself resides. It's in the conception.

    You give almost no attribute to the reality of humanity within heartbreakingly, horrific times. You give almost zero tolerance to the extreme pressure which any balance in outlook would accommodate as necessarily there, and so necessarily adjusted for. It's time to be more pliable temporarily. Learn this now because it may be one of your only chances in life to experience this.

    I've read every word you've written and I have confidence you will not suffer your fears about your core if you can accommodate some pliability in range of reaction for a while now. My concern is that you can shatter if all is demanded to be executed in rigid method.

    You have an amazing range in the conceptual right across through the spiritual. I'm very sorry to hear how brutally fast all this keeps happening and I'm very sorry for your poor heart. Pliability now and for some while. Think about it.
  2.  
    I would just stay as close to her as you can, and just go with the flow. Maybe that is the definition of "pliability." Is she still going to day care? ( I'm not sure how that could work if she is actively dying.) Your core is going to survive no matter what, lindylou. It may need to be more flexible than you ever thought it could be--like the way the Viking ships flexed as they went through the waves--or the way bridges are built with the ability to flex to survive strong winds.

    It sounds like you might be needing the knotted rope. Here it is:

    x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x Just grab hold of your end--The rest of us are at the other end holding onto it. We've got you.
    •  
      CommentAuthormary75*
    • CommentTimeAug 2nd 2017
     
    Elizabeth, I like your rope.
    • CommentAuthorcassie*
    • CommentTimeAug 2nd 2017
     
    Lindylou, my thoughts are with you. Don't doubt your strength, you will make it to the bitter end.
    We are all witness to the love between you and your partner and we won't ever forget.
    • CommentAuthorbhv
    • CommentTimeAug 2nd 2017
     
    Lindylou I have tears in my eyes reading what you just said and feeling the overwhelmng love of this group when Wolf said he.was waiting for you. Is that special, or what? I wish you courage for this weekend with the family. I will be at the cottage all weekend whenever you stop by. Hang onto that lifeline. It has been used many many times here over the years but doesn't seem any the worse for wear.
    Well said elizabeth - like a bridge in strong winds. And like cassie said, we will never forget.
    • CommentAuthorBev*
    • CommentTimeAug 3rd 2017 edited
     
    Lindylou, you seem to be an amazing person. You have given so much, just hang on a little tighter to that rope Elizabeth gave you for a little bit longer. The hard road you traveled is almost finished. Stay close to her. She needs you now more than ever. Spend all the time you can next to her side.

    I spent two weeks in the same room in the nursing home with my husband. I was there with him 24 hours a day. I was there when he took his last breath and I will be forever grateful for that chance. It brings me comfort to know I was able to finish that long, hard road next to him. I thought it would never end, but it did. I breathed a sigh of relief when he took that last breath. Relief for him, and for me. I miss him terribly, even the person he was at the end. No one should have to go through what we've been through. Ten years our of my life, and his. But I take comfort in knowing I was the right person for him all along and he for me. Almost 60 years of life together is a marvelous thing. Perhaps that was the plan from the beginning: for me to be here to take care of him.
    • CommentAuthorLindylou
    • CommentTimeAug 3rd 2017
     
    I keep reading what you write about pliability and am not sure I get it, Wolf. But maybe this is it:

    My partner when she was very restless less than a week ago kept saying "I have to......I have to.....I have to....." but of course she could not say what, nor did she really know what. Finally when she said it again I just filled in the end of her sentence for her...... "go with the flow." She tried repeating back my words to me and I said it again. "We have to go with the flow." She said, I think that's right". And she lay back down and relaxed.

    So I envision this - we are on the tiniest of tiny rafts, we are swept by the current, sometimes into a little backwater eddy where we can have just a glimmer of lucidity, sometimes into some whitewater where we have to hang on for dear life dodging rocks and debris, and sometimes there will be a gentleness to the current and we will just glide on down toward the great ocean where and when I will have to let go and she will go on by herself to wherever and whatever. Without me.

    As you can probably tell visualization works for me and this visualization and the other in my earlier post are helping me out. But if you are meaning something else about pliability, Wolf, you are going to have to explain further. :)

    Bev, bhv, Cassie, Mary 75, Elizabeth, Mim, Rona, CarolVT, Wolf, Myrtle, all you others - you all are the rope that is holding me safe. Thank you.
    • CommentAuthorbhv
    • CommentTimeAug 3rd 2017
     
    That raft picture is perfect.
    That's pretty neat that your partner thought go with the flow was exactly right.
    • CommentAuthorWolf
    • CommentTimeAug 3rd 2017
     
    Right or wrong, I read that you're hard on yourself when you fall short in your demands of yourself. That's what I'm advising you to stop now.
    • CommentAuthorLindylou
    • CommentTimeAug 3rd 2017
     
    You know, Wolf. There is going to be a memory of this time, of all the time actually that my partner and I have shared. I want to be able to look back on it and feel that we did well together given what was thrown at us.

    So when I got angry when she wouldn't/couldn't take her meds. that I could forgive myself for. But I needed desperately to find a new way, either physically or in my head, of dealing with the problem at hand. Because continuing to yell - and I did yell - at someone who only stroked my head in response was not a sustainable, reasonable, or acceptable response to the issue at hand. But, oh well, I am human. It is continuing this behavior over and over again, that I would not be able to forgive myself for. Is that being rigid or or is it being practical? I did find two ways of dealing with this issue actually: I now use a plastic medicine syringe to give her her meds, and I have decided that when/if she can no longer swallow, we will face together the inevitable seizures with the same grace we have faced previous ones. One solution is physical, the other is in my head. But I had to work to get there.

    The same goes with the numbness and grimness I was feeling. I had to fight to get out of it, my soul did not want the memory of shutting down, no matter that I was shutting down to protect myself. Better, I told myself to walk in the storm of emotion as long as I and others were not being hurt by it. We've come this far, after all. So spiritually welcoming these feelings and acknowledging them and the hurt that we (me and these feelings) are experiencing, is my attempt to stay present and in the moment. With side trips, of course to the Lodge or the Lake, to regroup and refresh. And God bless my friends.
    • CommentAuthorMim
    • CommentTimeAug 3rd 2017
     
    Lindylou, you are an absolute inspiration to me. I used to be able to think things through the way you are (& Wolf & everyone else here), but I no longer seem to be able to access that part of my brain. Not sure it's even there anymore! I used to be able to write, express my thoughts on paper, full of emotion & feeling. But now I don't seem to feel much emotion....I'm rather flat. My own health issues, those of my husband & now one of my sons is ill, seems it's a spinal abscess that must be taken care of SOON! He's single, & I'm the only person in his life (how sad for him). His dad can obviously be of no support, our other son lives about 10,000 miles away on the other side of the world, & it's me that must support him through this (he's had spinal problems before, that's another story). I think I'm just running on fumes, no feelings, no nothin'!
    You put into words things that I wish I could....thank you for that. You are an example of unconditional love.
    • CommentAuthorLindylou
    • CommentTimeAug 4th 2017
     
    Awww, Mim. It seems we both have to hold tight to that life line that Elizabeth threw to us - I visualize it as the arms of all the caring people who participate in this website, reaching out and hugging us, letting us lean on them when we need propping up, even when they need some propping up themselves. I have thought of you and kept you in my prayers after I learned that even while being the caregiver to your husband you were facing serious medical issues yourself. Now your son, depending wholly on you for his emotional support as well. Is their any way he can get counseling or other help through the medical system or through support groups? So its not just you expected to prop him up? Thoughts and prayers will continue to go your way every day.

    P.S My love is not unconditional I'm afraid. It is merely the best that I have to offer each day. As is yours.
    • CommentAuthorLindylou
    • CommentTimeAug 4th 2017 edited
     
    Here is the poem from a 13th century Muslim poet Rumi from which I got the vision of greeting my feelings and accepting them as part of me. This may be the pliancy that Wolf has been talking about with me:

    The Guest House
    This being human is a guest house.
    Every morning a new arrival.

    A joy, a depression, a meanness,
    some momentary awareness comes
    As an unexpected visitor.

    Welcome and entertain them all!
    Even if they're a crowd of sorrows,
    who violently sweep your house
    empty of its furniture,
    still treat each guest honorably.
    He may be clearing you out
    for some new delight.

    The dark thought, the shame, the malice,
    meet them at the door laughing,
    and invite them in.

    Be grateful for whoever comes,
    because each has been sent
    as a guide from beyond.

    A teaching story translated by Coleman Barks© by owner. provided at no charge for educational purposes
    • CommentAuthorbhv
    • CommentTimeAug 4th 2017
     
    Holy Mackerel, Lindylou, that is terrific. I am going to print that out and frame it and keep it on my desk right near my buffalo.
    My friend, the hospice nurse, is Lakota Sioux. A friend of hers grew up to be a dentist but then retired and became a Shaman for the tribe. He carves the most beautiful fetishes out of stone. Cindy told him about me and our relationship and he carved a buffalo for me. It has a teeny tiny medicine bag tied around it with some gem stones and a feather that carry various meanings. This is the best gift I ever received. When I look at it and especially when I touch it I feel in contact with Cindy and also with the artist who carved this buffalo especially for me and Cindy together.
    Your poem goes with the buffalo. Definitely. I will send it to Cindy too.
    • CommentAuthorbhv
    • CommentTimeAug 4th 2017
     
    I just copied the poem and put it in my Journal on my tablet. Called it Emotion Guest House fro Lindylou. I may make a new habit of reading it every morning. Thankyou.
    • CommentAuthorLindylou
    • CommentTime6 days ago
     
    At the very end of July I met with my partner's doctor and we discussed what was going on - she wasn't eating, drinking very little, urinating little, barely participating verbally, sleeping most of the time.. And it was then that the physician said we were entering the "actively dying" phase. I called her family on Saturday, and they dropped everything and came over that day. (None live more than an hour away.) That day was wonderful for my partner. She lay in her hospital bed and smiled, her family sitting on all sides of her and talking, the family music cd playing the songs they used to sing together.

    Then the day after she began eating more, drinking more, talking more, urinating more. When I went to the PACE program yesterday for the actively dying care plan meeting, they told me that while she was still dying, she was no longer in the actively dying stage. But they did go over with me the services and help I will receive when we reach that stage again.

    Decided that I will not tell her family about this latest development. I don't want them to feel like I am jerking them around. And she is not eating or drinking enough to sustain herself for any kind of long pull.

    I myself feel jerked around enough as it is. Is dying a bad thing if nearly all quality of life is gone? Is living longer a good thing if we can tell each other we love each other, and if we can smile when family is near? I've decided to just tell myself that living is a good thing, and dying is a good thing. And I will just leave it at that. I hope. Thanks for the lifeline, folks. I do need it.
    • CommentAuthorCarolVT
    • CommentTime5 days ago
     
    A visual hug if that helps, Lindylou. How are you so wise at the end? I hope I can be there.
    • CommentAuthormyrtle*
    • CommentTime5 days ago
     
    I'm glad that you were able to provide her with some joy so close to the end. This is so good for you both.

    I can certainly understand why you are worried about your partner's family feeling jerked around. In Feb, when I told my husband's children in AZ that he was dying, they wanted to wait until late March to come here because it was too cold but I urged them not to wait. They reluctantly came earlier than planned but by the time he got here, his breathing had changed. When they realized that, they suggested that I had not been honest about the severity of his condition. Hospice helped to clear that up.

    It is understandable that they felt they were being jerked around. I felt that way, too, although I thought it was death that was jerking me around. But that was not the case. Death has its own timetable and does not give a damn about us. We are just along for the ride and all we can do is our best for our spouse, which is what you are doing.
  3.  
    Sometimes there are some odd rallies, just when you think you are getting to the end of the line. But death is still going to happen--I think that if the family gets on trains and planes to visit when death is imminent...and then the patient doesn't die...at least they have had a chance to visit at what is a very fraught and meaningful time--at least they were there. If they have to go home, and end up missing the actual death, I think they have still shown a great deal of love and concern--and I think that the patient (in heaven now) knows that.
    •  
      CommentAuthorCharlotte
    • CommentTime5 days ago
     
    As Myrtle said, a rally is not uncommon. I know of many cases where they will seem to get better but it often is just a day or a few days then they go back downhill. How often have we heard people here say they knew who I was, talked to me, then went back into that black hole just before they died? Treasure the moments you get, never know if there will be another.
    • CommentAuthormyrtle*
    • CommentTime5 days ago
     
    My husband was under hospice care and eating very little when he started eating again (a couple of meals a day) for about 3 or 4 days. On a Saturday, he ate all his meals and the health aide and hospice nurse reported that he was in a great mood and very lively. Since he had several visitors that day, I did not go to see him. I was with him on Sunday and he seemed exhausted but perked up a little on Monday and Tuesday. On Wednesday at noon, the hospice nurse called to say his breathing had changed; she was clearly caught by surprise. He died on Thursday night, so the rally on Saturday was clearly his last hurrah. I wish I had been there on Saturday but only for my sake, so I could have remembered him that way. From what I heard, he had a great day with out me.