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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.
    •  
      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? ';)
    •  
      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.
    •  
      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.
    •  
      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.
    • CommentAuthorElaine K
    • CommentTimeApr 19th 2017
     
    I've never posted on this thread and haven't overall in a long time. I had to place my DH in a nursing home back in February after 16 days in the hospital dealing with pneumonia, dangerously high blood sugar and a badly infected gall bladder. His medical issues at this point supercede the dementia. It's going to take me a while to read through all these posts but I hope it will give me some clarity in dealing with what I've been feeling and also what I don't feel about this whole situation.
    • CommentAuthorRona
    • CommentTimeApr 19th 2017
     
    Elaine K it is a tough time so many emotions to sort through but just hang in there and you weave your way through. A lot of experience on the site so take advantage of it. Good luck.
    • CommentAuthorMim
    • CommentTimeJun 4th 2017
     
    I really haven't posted on this thread, maybe once or twice, but I got an interesting call from the nursing home this evening....one of the residents punched my husband in the gut! That resident has been removed & taken to the hospital. Dan seems to be okay (he always had pretty rock hard abs!), so it no major damage done, the doctor has been notified. I am going tomorrow to see what else I can find out & to check him for myself. I don't know where or why it happened, Dan won't even remember it. I would love to know which resident did this, but I know that would violate his privacy rights.

    I'm surprised that Dan didn't punch back...in his younger days, that would have just been his gut reaction (no pun intended!). Will post when I find out more. This is a new experience, believe me!
    • CommentAuthorFiona68
    • CommentTimeJun 7th 2017
     
    Mim, I've had this same experience with my husband. My protective instincts kicked in big time and I wanted to find out who and why and how and what we could do to guarantee this never happened again. Of course, none of that really materialized and it has nothing to do with privacy rights. The guys - especially during full moon week (full moon is this Friday) ramp up their behaviors and there really is no rhyme or reason for any outbursts they may have. I especially understood this when my husband hit another guy. Probably the guy was too close and my husband felt threatened (again it was during a full moon week). We all know that we cannot guarantee that behaviors will not happen, because we don't know what might set off one of the residents. My husband has been in his (very excellent) facility for 4 years now. I'm there almost every day so can guess who might be the most agitated and prone to striking out (at staff or residents).

    I hope your husband does not feel scared of the other residents because of this episode. This is one of those instances when I'm glad my husband has short term memory loss! He was wary of that one resident for a while, but even that faded with time.

    Full moon behaviors. It's definitely a real thing!
    • CommentAuthorSass
    • CommentTimeJun 11th 2017
     
    Fiona68
    I hadn't read your post until today. It was a bit ironic that you posted about the full moon and impact on behaviors. During one of my visits last week, one of the aides that takes care of Doug said the exact same thing. My husband has had issues with being aggressive but that particular day he was so lethargic and barely awake despite it was meal time.
    She and I were talking and she said he had been mostly calm but that when the full moon rolled around, my husband, along with some of the other residents there, would go a little crazy and just go off for no particular reason. She concurred that the full moon definitely had an impact. If they weren't able to quite put there finger on why Doug was acting aggressive or really irritable, they would check the full moon status. It is definitely a thing!
    • CommentAuthorFiona68
    • CommentTimeJun 12th 2017
     
    Funny, the things we learn isn't it? I so believe in this full-moon-week behavior stuff, that I alert all new staff in Darryl's Unit of this phenomenon. Some agree with me and some think I'm kidding, but they soon understand.
  2.  
    This is what I posted on the introduction page:

    Hi everyone, I'm so glad I came across this site, as it's been looking as though there's no one who really understands what it feels like to watch the love of your life slowly drift away. Watching my beautiful Sylvia, my loving wife of 28 years, gradually succumb to the ravages of Alzheimer's has been the most heart wrenching and heart breaking experience of my life. I was full time caregiver to Sylvia at our home for several years, but gradually the toll of that caregiving began to impact my health, and so I finally had to give in and place her in long term care. Sylvia entered LTC on October 4, 2016 - making the past 9 1/2 months the loneliest I could ever possibly imagine. For the 28 years we were together, we never spent a single night apart, and always had our breakfast and dinner together. Now, coming home to an empty apartment, having my morning coffee alone, and cooking for one, has just been devastating.

    I hope I haven't rambled too much, and that some you guys understand what I'm feeling.

    Bless you all.
    • CommentAuthorcvh
    • CommentTimeJul 20th 2017
     
    Anorthendboy, I get it. My husband of 25 years was placed in ltc a year ago. It is so lonely, and no one ever calls you. I guess they think that now that he is placed, I am ok. That couldn't be further from the truth. It has been such a tough year. I used to come home and have several glasses of wine, or rum and coke nightly after visiting my husband. I sought out a councilor who understood what I was going through. This is grief.

    People keep asking what I am going to do now? What? As far as I am concerned I still have a husband, and I will not leave him, until he is gone forever. Again, people just don't seem to 'get it'. You don't just place them in ltc and things are good again.

    end of rant
  3.  
    Cheryl, We're experiencing exactly the same thing! Sylvia and I have been married for 28 years, and in the 9 1/2 months since she's been in LTC, the greatest support has come from 2 sources: My Social Worker and the local Alzheimer's Society. Yes; there's been familial support, etc., but no one (other than someone who's had the same experience) can truly feel what it's like. I too was having a few glasses of wine after visits, but after the relaxing effects of the wine wore off, the tears and heartbreak returned. And yes, you're right: people ask "so now what?". I agree my Sylvia and I will be together until the end.

    Want to stay in touch via email/phone/text/Facebook, etc.?????????
    • CommentAuthorcvh
    • CommentTimeJul 22nd 2017
     
    Anorthendboy. I will send you a facebook "friend" request. I stalked your fb page, and guess what? We are both from Winnipeg, now living in Ontario.
    • CommentAuthorcvh
    • CommentTimeJul 22nd 2017
     
    Anorthendboy, I had to cut out the wine after visiting, because it was getting out of hand. I suggest finding a counselor to help. This is grief, and you don't get over it easily. It's also part survivor guilt, and feeling that maybe you just aren't doing enough to help them. I've been through the whole gamut; anger, guilt, but mostly depression. It's hard to get on with your life when it seems like your life is just "stuck". You can't move ahead, because you are still caring for someone who is alive, but, doesn't know you. If your spouse had died, then you could move on with life. Is this "hell" that we live in now? I don't wish him to be dead, but, I find myself now being envious of people whose spouses have passed away peacefully.

    I find that family helps somewhat. He has children by a previous marriage, and they aren't any help at all. That isn't uncommon in this type of situation. They don't feel obliged to help out. It is mostly my family and friends that help, but, even they don't always "get it".

    I go to visit every day to help feed my husband supper so that I can ensure he gets atleast one meal a day. I find that the PSW's don't do the best job of feeding them. I used to go twice a day, but, it became too exhausting.... so now I feel guilty about cutting back to only visiting once a day. I know that I am entitled to have a life still, but, I keep thinking that he doesn't have much time left and I would like to spend it with him.
  4.  
    Cheryl; So much to say; better on Facebook for now???
    • CommentAuthormyrtle*
    • CommentTimeJul 22nd 2017
     
    cvh, I know exactly how you feel when you say that because your husband does not have much time left, you would like to spend your time with him. I visited my husband as much for my sake as for his and I'm glad I did that. But I did not feel guilty for visiting just once a day. Why would I? That schedule did not harm him. He usually enjoyed my visits (although sometimes he was sleeping) but he wasn't upset when I left and usually did not even realize it. Remember, when it comes to Alz caregiving, the effort you put in is not always matched by the results you get! It sounds like you are doing very well - don't sell yourself short!
    • CommentAuthorcvh
    • CommentTimeJul 23rd 2017
     
    Myrtle,
    Thank you, you always have something kind and re-assuring to say.
    • CommentAuthorSass
    • CommentTimeJul 23rd 2017
     
    Today is July 23, my husband's 63rd birthday. 3 of the kids and I went to visit him today along with the only friend of his that still comes to visit him. It was bittersweet...he sort of smiled but I don't really know if he recognized any of us. In addition to these visits being hard for me just based on how much my poor husband has declined, I also feel so many eyes on me every time I visit. Eyes of pity, eyes of compassion, eyes of sorrow as I walk by, especially with my children in tow as it is clear they are all still young. I'm still young. He's still young...but mentally and physically wasting away in front of me.

    Yesterday evening his oldest daughter and I went to see him. She lives out of town and hadn't seen him since March. It was a very tough visit for her. She's been somewhat shielded from the reality of what has taken hold of her father because she doesn't live here. As we all know far too well on this site, living it day to day is much different than just hearing about it. She was trying to talk to him about her twin baby boys and show him pictures and he just sat in his chair mostly with his eyes closed. She had to step outside of his room to breakdown and cry, so I went out to comfort her. I knew it would be hard for her and thought it best for her to come alone with me. This is such a horrible disease!

    As she and I were visiting it was time to eat. I wondered why no one had come to get him so I went to the dining room and spoke to the nurse. She told me they no longer bring him down at dinner time because he gets too tired and they feed him in his room so they can give him one on one attention. That was a change. I had not seen him in a week because I was out of town with all the kids on vacation getting some much needed rest. It was a lot of fun for the kids too since it had been years since they had vacationed together. One week, in the grand scheme of things, not so long, but yet more decline.

    I don't know if he will make it to 64. So much has changed for him, for me, for the kids. Maybe it will be a blessing and a prayer answered that it does not drag on for him and make him have to endure this life, that is no longer a "life" for him, rather just existence.
    • CommentAuthorLindylou
    • CommentTimeJul 23rd 2017
     
    Hi Sass, my partner too just had her 63rd birthday. I almost said celebrated - not sure the word is appropriate. She enjoyed hearing her mother and sister sing. Her son just sat beside her with his arm around her and a sad sad expression on his face. I too am not sure there will be a birthday after this one. From what I sense, your husband and my partner are in very similar places in this disease. My thoughts and prayers go out to you.
    • CommentAuthormyrtle*
    • CommentTimeJul 23rd 2017
     
    Sass, I am so sorry. This disease is terrible but when it strikes someone so young -- and with a young family, too! -- it's especially tragic. I really admire you for holding everything together (making the decisions about your husband and helping the children with their education and starting their own families). I don't know how you do it.
  5.  
    Hi Sass; Not much that I can add to the comments/support from Lindylou and myrtle, other than to say, I know what you're feeling, and offer my support as well. When I visited my Sylvia today, I learned that incontinence had set in, and that was a huge change from just a week. What a scourge this disease is! Although Sylvia is 77, we came together later in life, and at least I take comfort in the memories of the 28 years that we've shared in our love. If there was one bit of encouragement that I would offer anyone who is in the situation we are all sharing, it would be to remember and focus on the memories of your shared love and all that you both created, and not to focus so much on what's been lost and what won't be there in the future. Remember, we're all in this together, and we all need each other's support.
    • CommentAuthorSass
    • CommentTimeJul 23rd 2017
     
    Lindylou, myrtle, and anorthendboy,

    I cried when I read each of your words of support. Something I haven't really been able to do much of for a long while and fearing that I was turning into this cold stone incapable of truly feeling what is happening to him, me and us. I appreciate it more than you can know. Anorthendboy, before I read your advice, I had taken it! On vacation with my kids last week, I spent lots of time laughing and enjoying us all being together. With such an age gap from oldest to youngest (13 years) they've been at different stages of life which make it hard to be all together very often or for very long, but this was an entire week at the beach! Being with my grandbabies too was soooo comforting. Their sweet little faces reminding me life does go on and there are many things in my life to be thankful for despite the pain and sorrow that co-exists with it. I start with a new therapist tomorrow and I hope this one will be someone I can relate to. I'm trying to be optimistic because I need someone I can just unload on about everything and not have to worry about hurting someone's feelings or anything else and I can get the support that I so desperately need. I will also continue to come here for support and give it as well.

    Lindylou, we are very close in our journeys. I read how you care for her and I'm amazed and encouraged by your strength and resilience.

    myrtle, you have given me so much great advice and support since the beginning, all the while handling your own sets of issues. Your strength and resilience I also admire.

    anorthendboy, I know you joined us fairly recently and i'm starting to learn more about you and Sylvia and your journey. I agree wholeheartedly that we are all here in this thing together and here to provide support to one another.

    hugs to all!!
  6.  
    Sass, Glad that you're seeing a therapist. I am working with one as well, and he's been a huge help. If you want to stay in touch via email/Facebook/text/phone, or any other way, I'm here.
  7.  
    Hi everyone, I'd love to get some feedback from as many of you who would care to offer. My Sylvia has been in LTC for almost 10 months, and although for the first 2 months I was visiting every day, at the suggestion of both the doctors and staff, I cut back my visits to 4 times/week. The main reason this was recommended to me was because the stress of watching what was happening to Sylvia was beginning to take a toll on my health. For the past 8 months, I've been maintaining my 4 visits/week, and so long as Sylvia continues to recognize me, I will continue. However, over the past month or so, her cognition has deteriorated quite a bit. Aside from the fact that she still recognizes me, pretty well all other aspects of her cognition are almost non existent; nothing she says makes any sense at all. Physically she's fine; her appetite is good; vital signs are fine. Lastly, over the past couple of weeks, incontinence has set in, and as I've mentioned in an earlier post, that has brought a whole new level of heartache.

    For those of you who are in a similar situation, how often do you visit?
    • CommentAuthorSass
    • CommentTimeJul 24th 2017
     
    anorthendboy,
    My husband has been in LTC for 1 year and 8 months. I only go 2 times a week, occasionally it's more or less. The beginning was hard as he had a hard time adjusting and was never happy to see me. I went anyway and more frequently in the beginning. Then it became more difficult as he continued his decline. Sometimes I would get so depressed after a visit that I would do nothing and hibernate in my house. But I could only do that on the weekends because I still work full time. Our youngest child (son) just graduated from high school at the end of May. Also during the last year or so my parents have become worse off from dementia as well. So, I have had to balance my time between all of my responsibilities...my husband's care, my children, my parents, continuing to be able to work to support my family and provide insurance. It's not just my husband in my situation, there are many others. That being said, I think you have to do what is right for you and your circumstance and you do have to preserve your own health. If you aren't healthy then you can't be much support for your wife. I learned a long time ago that I have to cut myself some slack and not try to live up to some expectation of mine or someone else about how often I should visit. I do the best that I can and that's all I can do. For all my strength in dealing with this, I do have my breaking points and I have learned to pay attention to those and do what I need to do to stay sane, so I can be around for all the people who are depending on me.
  8.  
    Thanks for your comments, Sass. You're so right about cutting yourself some slack; I only wish that I could remember to do that more often. Sometimes I feel torn between wanting to visit and be with my Sylvia, but I find the visits so emotionally draining, that I wonder if I'm doing the best thing. So hard to know; my feelings around that whipsaw back and forth, often several times a day. Just have to take it as it comes. Be well, and know that you're supported.