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    • CommentAuthorMim
    • CommentTimeMar 1st 2017
     
    I will add that since the stone was removed, he seems to have bounced back a little. He really seemed to be taking a nosedive, now I figure he must not have felt good, probably had at least discomfort, if not pain but he was not able to express that. The doctor also is pretty sure that he's had a couple of small TIA's...he couldn't keep from leaning backward when he stood, they checked him out as they were supposed to do & after about a half an hour, he was okay again. However, his left hand has very little grip in it now, it is slightly in a claw shape & a little puffy. It's hard to realize that these things are happening to what used to be a very healthy, in shape kind of guy.
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      CommentAuthormary75*
    • CommentTimeMar 1st 2017
     
    I'm glad your CT Scan and blood work came back with such good news. But I am sorry that your husband is having medical problems. He's lucky to have you.
    • CommentAuthorMim
    • CommentTimeMar 2nd 2017 edited
     
    He always used to kid with me that I was lucky he loved me....he never told the reverse of that though. Wonder if he realizes that now? ';)
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      CommentAuthormary75*
    • CommentTimeMar 2nd 2017
     
    I think they do.
    • CommentAuthorAliM
    • CommentTimeMar 2nd 2017
     
    Jazzy and Kycaregiver, Thinking of you both and hope that you are hanging in there with your caregiving management. It was all pure torture for me. Take care. ((Hugs)).
    • CommentAuthorWolf
    • CommentTimeMar 3rd 2017
     
    Rona,

    By the time I put my wife into the home, she was oblivious to what was going on around her and hadn't spoken for over year. Yet after two years there, much of the staff was convinced that she was always glad when I was coming, or was very happy her sister was visiting, or other utterly impossible things. I understood the staff had to be like that in part, and had to believe in things in part to keep going - but she wouldn't have blinked if fireworks went off right beside her.

    No. It wouldn't matter that you were there in person. Don't say that though because as true as it is, it's terrifically unpopular to admit.
    • CommentAuthorRona
    • CommentTimeMar 3rd 2017
     
    Thanks wolf I understand I am caught, it is the feeling of guilt and helplessness, knowing it really doesn't matter. As hard as it is to see her in this state I must keep going I know I can still comfort her, even though she does not know my name she knows I am her husband and I know she feels safe and more Content when I am there. However I also know I cannot be there all the time. We do the best we can.
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      CommentAuthorCharlotte
    • CommentTimeMar 3rd 2017 edited
     
    julied - you are not alone in your feelings except I don't feel guilt. When someone looses their spouse I wish it had been mine. Feel this even more when it is someone that had a good marriage and are devastated, who would want their spouse no matter what condition they were in. When my sister died a month ago I wish it had been my husband not her.

    I envy those whose spouse has been placed. I know it will be a financial hardship, depending on how much Medicaid leaves me, but I am so tired. This month marks 10th anniversary since diagnosis. Seems an eternity!
    • CommentAuthorladylimbo
    • CommentTimeMar 3rd 2017
     
    Wolf (ever the voice of reason) and Charlotte; As I always say, it's another Sophie's choice, those of you who know, know what that refers to. My wonderful husband is in year 4 of the long march to the other side, of what I don't know. He is now "officially" in the hospice realm, which with Alzheimer's could mean five minutes, five months, another year plus.

    I don't so much feel guilty, as guilty is something you feel when you have done something wrong, I do feel the "survivor guilt" type emotion, bitter is more of my choice of words for how I feel. I also wish it were my husband that passed, each time I had gone to the facility and the front desk had a picture with a devotion to the last, lucky victim, that had escaped the thousand mile stare. At work, many of my coworkers have lost husbands, wives, etc. cancer, accidents, heart attacks, most very quickly. I always feel they are lucky, they might not think so but I do. Charlotte, I have gone through the financial devastation, have my husband on "the system" so to speak, still work full time and it's quite the single life, make due on exactly what I bring in and at almost 60 it's hard to go back to the years of budgeting, cutting coupons, shopping at the thrift stores, but I am used to it and it is my new normal. Had to downsize considerably but you make it work, live within your means, and piece humpty dumpty (your life) back together again as best as you can and go on with it, what's the alternative? A nice bottle of wine is fairly cheap, go to the movies in the morning when the cost is less, just find ways to make a life worth taking part in.

    As Wolf states, many of our thoughts and feelings are terrifically unpopular but that's only to those who have not been in the hell of dementia, as the spectator. The only opinion or advice I take is from the person who is laying next to me when I put my head on the pillow at night, and since that is me, in a twin bed, solo, single, that's whose opinion and advice I take and act upon, the others? Well, I can't write here in mixed company what I have told many, not just thought, but told ! Needless to say, I am not very popular... you find out who your friends and family are very quickly...
    • CommentAuthorRona
    • CommentTimeMar 4th 2017
     
    Ladylimbo very well said and I like the term "survivor guilt". That definitely is how I feel and am going to try and use that from now on. As said we have all in our way done our best and have nothing to feel guilty about but survivor guilt yes it certainly creeps in.
    • CommentAuthorSass
    • CommentTimeMar 5th 2017
     
    I've read these posts the past couple of days and I wanted to respond because so many struck a chord. However, I felt myself succumb to the depression that takes hold of me and drags me under despite my best efforts. My husband Doug has been in an ALF for 15 months now. It's getting worse for me at times as he is getting worse himself and on Saturday I visited and I don't really know if he knew who I was. The decision to bring or not bring in Hospice still weighs heavy on my mind. I don't know what to do yet and haven't discussed with my adult children. I do know that I have been thinking how incredibly cruel and tortuous this disease is to the ones who have it and to their spouses and families. I am someone of faith (or at least always considered myself as that ) and yet I question how this can be allowed to happen to people who absolutely did not deserve such a fate. I guess I will either never know or find out when it's my turn to go.

    Rona's story wrestling with whether or not he should cut his vacation short to go back and be with Lisa for the move and Lindylou's story about the survivor guilt both really resonated. I'm struggling to have a life and don't really. I have "weeks" of a life when I have something planned. I feel single but I'm not. Other times I feel like a widow as I stare at a man that is no longer my husband. That man is gone... but he's not. I feel like I'm in limbo not knowing what to do most of the time. I feel stuck. I feel trapped. I have other family members like my parents and now my older brother who is single who need care and attention. I feel like mostly all I do is work and care for other people. Not much time to start getting a life. I have a son in high school who still needs me and I play the role of mother and father. I just am having a weekend and know I will come out of it eventually. Reading about Myrtle's husband's death was gut wrenching. I felt like my time is not too far away and wonder what will I be like and will I be able to maintain or is that the one that will do me in. I wonder if I fall apart will anyone step in and take over for me. I don't know. I miss my husband. I hang on to his arm and lean on his shoulder always when I go. He was my tower of comfort and always took care of me. I want him next to me in bed so I can lay against him. It's been so long and it will never happen again but I really miss him and being able to do that with him. On Ash Wednesday, I went to church for my ashes and prayed to God that he not make him suffer in this tortuous existence and drag it on. Not a popular thing to say or think. But it's how I felt and it's what I prayed for... popular or not.
    • CommentAuthorcassie*
    • CommentTimeMar 5th 2017
     
    Sass, I am sorry that you are feeling so overwhelmed by your dreadful situation. You can think and feel any way that you want and it is ok.
    I hope that you will find some strength and comfort from somewhere (and really soon.) It does knock you down when you realize that your husband can't give you that any more, I hope that tomorrow will be a brighter day for you and don't forget that you are amazing to have reached this stage of the illness and still be the sane one. Take care, cassie.
    • CommentAuthorjulied
    • CommentTimeMar 5th 2017
     
    All of these "unpopular" things that are being said makes me feel like I'm not alone for the first time in weeks and weeks.
    • CommentAuthorRona
    • CommentTimeMar 6th 2017
     
    Well let's move right along with this unpopular theme. Been debating wether or not to write this but here goes I feel the need to tell someone and you guys happen to be it. My story now. For those of you who have read my past posts you will know that we had a good relationship, not perfect by any means but good. We loved each other but had our moments. I think when Lisa was diagnosed it almost brought us closer together it helped me to understand why we had been having problems. When diagnosed I told you one of the first things she said was at some point you will have to put me somewhere and you are to find another woman and go on with your life. A true gift she drilled it into me told our friends and even some of her relatives. Asked her cousin to help me find a new wife. All supportive of this well almost all will get to that in a moment. I told you I tried dating and was determined to move on. Not easy in fact very hard and. It really for me. The survivor guilt always there.

    Well out of the blue it happened not dating but through a mutual friend. Go figure. It has only been just over 6 weeks but I have found happiness in the middle of this chaos. A wonderful woman who herself is in a caregiving role for her mother who still lives on her own. So we found each other and both of us cannot believe this is happening. My commitment and love for Lisa will never change and will always be there. I believe there is never just one person in your life who you can love. Don't get me wrong I have always been monogamous. For those who have lost your soul mate I understand for me that has not been the case I am loosing my love and was hoping i could find love again. Even though I knew that I really didn't believe I could feel this way again. One of my reasons for wondering if I should post this I feel a sense of survivor guilt being happy when so many others here are struggling to be just that happy. I still have my tears and still have a long way to go but now have someone at my side to travel this road with.

    Part of my reason for telling you this I sense so many are struggling And that is ok it is what you must do I am. Not preaching here or telling you what to do. Others here are saying they will survive and want to move forward and have another life. I just want to say Well it is possible. We are not damaged goods. The qualities we have shown in caring for our spouses are ones that many admire, ones that are endearing. There are many out there who would love to find you.

    I mistakenly, maybe subconsciously, sent a text to my sister in law rather than my new friend, oops not a good one. She I don't think is impressed anyways I have talked about them in the past. Brother In law has not come by phoned or anything since Lisa has been in care has visited her a couple of times I. 8 months. They always have an opinion but in fairness they have their own issues so don't want to be too hard on them. I have let that go but if they have a negative opinion about my new relationship well f*** them. I will always be there for Lisa but I also have the right to live my life and be happy. Well glad I got this out.
  1.  
    Rona, good for you! I think we all have to find happiness where we can. There have been others from this group who have found someone.
    • CommentAuthormyrtle
    • CommentTimeMar 7th 2017
     
    Ron,
    I did not read this article until today and I immediately thought of you. It's by a dying woman who is hoping her husband will find a new wife. Here's the link:

    https://www.nytimes.com/2017/03/03/style/modern-love-you-may-want-to-marry-my-husband.html
    • CommentAuthorAliM
    • CommentTimeMar 7th 2017
     
    Rona, I believe you, and you alone, have the sole authority to live your life as you see fit. You have and continue to do all that is possible for Lisa. With this disease not much is possible. We encourage others to follow their heart while caregiving, no matter if at home, in LTC, or calling in hospice. Just follow your heart. You are entitled to pleasure in your life. Best wishes to you and your new friend, that can walk this road together and understand each others lives. Hope you have many enjoyable moments. All current and former ALZ caregivers deserve all the happiness they can find. Enjoy.
    • CommentAuthorRona
    • CommentTimeMar 9th 2017
     
    Thank you MaryinPA, Myrtle, and alim. This whole thing feels not real how could it happen but it did. I have been accused of over thinking things so for now just going to try and enjoy the moment, the happiness I have found. right Now I am heading in to see Lisa. Things are really digressing even though I know what lies ahead it too seems not real. It is all such a mix of emotions.
    • CommentAuthorRona
    • CommentTimeMar 10th 2017
     
    I know that since the move she has been in pull ups full time as been having accidents. Well when I was sitting with her yesterday she just put her hand in her pants and brought her fingers out full not knowing what it was and asking if she did something wrong. I just said no everything is alright and got one of the aides to clean her up and change her. She had no idea we just continued with our visit. As I said know it is coming but sometimes it just hits you in the face how could this be happening. How can this be real? I know many of you have been through this but So painfull to watch this decline knowing there is nothing you can do to stop it just be there. Where is the dignity, wanting this to end but not wanting to let go.
    • CommentAuthorSass
    • CommentTimeMar 11th 2017
     
    Rona, your journey with Lisa is similar in many ways to Doug and mine. He is not really able to talk anymore but he is having incontinence and has been in diapers since the early summer. He doesn't realize when he has wet his diaper. I visited today and he had wet himself. I knew because he usually will push on his crotch and more times than not, he has used the bathroom. Today, he got up from the dinner table and went to the bathroom. He was not even in there but 30 seconds and he came back out and sat down. He no longer knows what to do or the "feeling" of needing to go. I agree it is so hard to watch because there is nothing you can do and the stripping of their dignity is agonizing to watch. My visit was somewhat bittersweet. We went outside to walk around the little outdoor path and shortly thereafter he wanted to go back inside. He seemed out of sorts but as we were making our way back to his dining table he stopped before we were almost there and looked around not really sure what he wanted. Then he leaned down and gave me a kiss. A sweet, kiss and hug that let me know for a moment he knew it was me and he needed some affection and love. Then he went back to being really tired and listless. He kept closing his eyes as though he was tired and not engaged. So I walked him back up to his room so he could rest and I went home. I was on the verge of crying but just couldn't. I try not to let him see me that way for fear I will upset him. This is such a horrible disease. I want it to end too but then I don't know if I'm ready to let him go just yet. I suppose I will never really be ready for that, but watching them slowly lose their mind, their self and their ability to understand what's going on around them seems cruel to let it prolong.
    • CommentAuthorFiona68
    • CommentTimeMar 17th 2017
     
    I am right there with you Sass, because my husband is at that same point; in memory care, is incontinent, does not know what he wants, cannot talk, is sad and lost and defeated and tired. I have totally blocked my own feelings in all of this. My constant prayer lately is for God to have mercy on this man and take him home. I'll deal with that heartache when it comes, but he does not deserve this.
    • CommentAuthorSass
    • CommentTimeMar 17th 2017
     
    Fiona68 - It's so hard, I know. Another bad visit today, he barely looked at me and didn't seem like he was happy to see me like he usually is. He was so lethargic and unresponsive. I'll try again tomorrow and see if he's better. In the mean time, I'll pray tonight for strength, patience and mercy. I'll say some prayers for you too... and all our other friends here.
    • CommentAuthorRona
    • CommentTimeMar 19th 2017
     
    So went away again this week and no sooner gone then another call from facility, the move for Lisa not going well head of facility very apologetic said she messed up not the right place took full ownership of the decision and said wanted to move her again. The place where I thought she was going in first place but someone, front line worker thought differently so wrong choice made. Her room now far more quiet and I hope better. She is being toileted every two hours but still continence issues and she has become violent. Don't know if this is a result of the move or just the progression, my feeling just the progression her room looks the same staff mainly the same don't think she even realizes it is in a different spot. They kept her busy moved all of her things pictures in same place on the walls etc room looks exactly the same.

    Added wringle I told you how I have starting seeing someone, going very well a great support and balance for me, and that I inadvertently told my sister in law. She really has not spoken to me since just texts about everything that needs to be done and everything that is wrong and now she doesn't like the facility. Found out she was talking to head of facility about moving Lisa, to where they live a ferry ride away, asking about how often I visit, wow I don't believe it just what I need. Sounds like she feels I am just going to abandon Lisa that really upsets me. I am the one who has care for her made the decisions for her they really have been. I where in sight.

    i have a good relationship with the head of the facility and her answers where great, he is here all the time, when asked about moving told her that was a conversation she needed to have with me. My commitment has never changed and never will we have been together for over 25 years, I still Shed tears when I visit and see the decline but I will not stop being there and being her advocate I am her safe place. I am trying to restart my life yes but that doesn't change anything I still visit about 4 days a week. This other crap trying not to think about it but know it has been keeping me up nights. I see a conflict coming but I am not going to start it. I hope I am wrong I think it is about money.
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      CommentAuthormary75*
    • CommentTimeMar 19th 2017 edited
     
    Rona, it's usually about money. I had the same problem with DH's family, and I advise you to keep on doing what you're doing. As far as the rest of the world is concerned, you are squeaky clean. Know that if you give your sister-in-law enough rope, she will eventually hang herself. I kept a paper trail for my own protection.
    • CommentAuthorRona
    • CommentTimeMar 19th 2017
     
    Thanks mary75 I am not worried about any of this actually coming about no basis whatsoever I have done my best and will keep doing so it is what we do. That I know is also recognized by everyone around me friends the professionals etc all have continually given me positive feedback. So you are right the rest of the world is supportive they know what I have gone through what I have done and everyone friends relatives worried about my health and well being for a long time and they are all now very happy for me. They see I have some life back which as I have said many times is what Lisa wanted for me.

    However the fact that I now have to deal with this is upsetting I am trying very hard to just let it go. They have some sort of agenda just waiting to see what it is. I am very easygoing but I never got this far in life by rolling over have never been afraid of a fight but not the way I want to live my life. As you have said just give them enough rope. Thanks.
    • CommentAuthorJoisey guy
    • CommentTimeMar 19th 2017
     
    I've been following your saga with interest since I'm living a similar scenario. My 68 year old spouse has been in a LTC facility for more than 2 years since breaking a hip, but has suffered from AD for several years. Three years ago I met another Alzheimer's spouse after posting on this website. By the grace of god, this woman lives in my town, and was, and is, going through the same nightmare. Six months after my spouse entered LTC, her spouse entered the same facility. Without rehashing all the details, we saved each other's lives, and became better caregivers to our spouses. Interestingly, some of our best friends have never accepted us as a couple. We've made new friends, all of whom know our situation. After an adjustment period our children, who are all local, accept our relationship although we're not involved with each other's grandkids. Too much to explain to young kids.
    We visit our spouses almost daily and have become best friends with each other's spouses. We've been out with my spouse's siblings and cousins. People who know us are happy that we found each other and comfortable in the fact that we never abandoned our spouses.
    Only people in your shoes can know what your going through. You will be judged by people who have no right to judge you. You don't need those people. You are an Alzheimer's spouse. You don't have the disease. You have a right to a life, and have been blessed to find a woman to accept you as you are. We wish you only the best.
    • CommentAuthorRona
    • CommentTimeMar 19th 2017
     
    Thanks no problem with my kids accepting and so far no problem with friends all are ecstatic for both of us. her kids taking a bit more time, she is also the primary caregiver for her mother so a lot in common. Really Appreciate your post and happy for you it is wonderful to have a partner after so many years. A partner who understands and supports what we need to do.