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    • CommentAuthorRona
    • CommentTimeJul 25th 2017
     
    Reading these posts the tears started to flow I have always been an emotional person but makes me realize that even through I feel I am doing fine it is right below the surface. I so relate to all of the above comments and can empathize with all of you, I am right there with you. Lisa turned 61 in April and has been in care for just over a year, July 14 2015.

    Anorthendboy in the beginning I went everyday and was told the same thing need to come less so she can adjust and too hard on me so need to take care of myself. now I try and go like you around 4 times a week. However I work that around my schedule more now rather than hers. In other words if there is something in my life going on I will visit around that rather than having my life always revolve around visiting her.

    Like all of you The changes lately I have found difficult they just kind of happen and it becomes the new norm. A stage where more physical issues are evolving Incontinence, the ability to feed herself, instability, she can still walk in fact that is what she does all day but much more unsteady.

    Right now I am trying to decide should I go and see her today, I have been there the last two days not much on my plate today but I am tired. She still recognizes me and is always happy to see me but the recognition is more a feeling of comfort rather than really knowing who I am. I have also decided I am going to do everything I can to make her as comfortable as I can, we are lucky that we can do this. I have a wonderful lady who sees her an hour in the morning and in the evening and another one that goes a couple of times a week. Gives me another level of comfort knowing that if I am not there someone else is watching over her.

    Even though we are all at about the same stage of our journey everyone's journey is different. Sass you still have a young family to worry about, lindylou you have taken on the courageous path of carrying on this journey at home, Sass you still work full time, you see we all have differences but we are all in this together and are feeling the same emotions. I feel very fortunate I have been able to develop a life outside of the Alzheimers world this has helped me to cope. I am no longer living it 24/7 I now jump in and out of that world. It is not forgotten, it will never just go away, rather it has helped form who we are today. In the very beginning, just after diagnosis we had this discussion, in fact we had it many times, she was adamant, that when the time came for her to be in care, I was to start life again, this has given me strength to do just that, knowing truely that this is what she wanted. A wonderful woman, if you love someone you have to love them enough to be able to let them go. She did that for me. The tears are still flowing as I write this.
  1.  
    Rona, I don't think there will ever come a time when the tears aren't just below the surface. Even though we learn to go on without the one who is the other half of us, and learn to build a life, there is a part of us that will never quite heal. My social worker likened it to someone who, although he/she recovers from a heart attack, and goes on to live a long life, there will always be some scar tissue left around the heart. I feel like I'm operating with one leg, one arm, and half my heart missing. Like you, as I'm typing this, the tears are there.
    • CommentAuthorFiona68
    • CommentTimeJul 26th 2017
     
    I too am struggling with how often to visit my husband, who has been in a Memory facility for 4 years. For almost all of this time, I've gone almost every day, but now I feel depression setting in and this constant weight of grief, loss, sadness, and depression has made me too want to just hide in my house. I've come to the realization that he does not often know who I am and is content in his little world there. That's given me permission to visit less often. So now I go about 4-5 times a week. I don't feel guilty when I'm not there but I miss him so much that the only time I feel the weight lifted off of my heart is when I'm out of town. So, I go to visit my kids a few times a year ... and try not to drink too much at night ... and rely on sleeping pills to let me sleep at night.
  2.  
    Fiona68 We're no doubt facing the greatest struggle imaginable, and I feel what you're feeling. It's said, and I believe it's true, that the caregivers/loved ones are more at risk, and are dealing with much more heartache, etc, than are the ones with the disease. That's why it is absolutely essential that we recognize/believe that, and learn to not only look after ourselves, but also go on to build a life. We have much more inner strength than we give ourselves credit for, and it is this strength that allows us to go on and not just exist, but live. Give yourself permission to do whatever you need to do in order to accomplish that. Lastly, remember - you're not alone.
  3.  
    Really rough day after visit with my Sylvia. She's taken a further downturn; recognition of me fades in and out; she shouts in anger a great deal; very upsetting to see. Not sure how to go on from here, in terms of visiting and trying to relate to Sylvia. I know that what's manifesting is the disease, and that the incredible loving woman I remember is still in there somewhere, but the hurt and heartbreak is overwhelming.
    • CommentAuthorRona
    • CommentTimeJul 28th 2017
     
    I hear you so hard to keep going and watch the decline But I find it easier now than in the beginning when I use to go and she would be yelling pounding on the windows, following me when I tried to leave calling me all sorts of names. Now when I have to go I tell her I will be back soon and for the most part it is fine she is easily distracted.
  4.  
    Rona, You're right about it being easier to leave now. I used to have the same difficulties early on when it came time to leave. Sylvia would try to follow and beg me to take her with me. Now she's just unaware, and it's almost like it doesn't matter if I'm there or not. In it's own way, the unawareness is just as gut-wrenching.
    • CommentAuthorSass
    • CommentTimeJul 28th 2017
     
    I agree with you Rona and anorthendboy about how leaving now is easier, mostly because he is unaware most of the time. In the beginning, it was awful because he hated me for putting him there. He didn't think he needed to be there and thought he could do everything on his own. He no longer could understand how much he was actually forgetting and also how angry and agitated he was, scaring our son and making him not even want to come home. So, there I am, in a no win situation, making the decision to place him. in the beginning, visits were awful, because the second he saw my face, my husband would get this angry look on his face as he looked at me as the one who put him there. My husband was very non-verbal by the time he was placed so he didn't have ability to verbalize what he was thinking and feeling, he could only emote. And emote, he did, for many months. It's been a tough road and it's disheartening and sad when I go now because he doesn't seem to remember me any more.

    Fiona68, I used to drink more than I do now. I was getting really depressed so I went to the doctor. I'm on antidepressants to help. I just went to the Dr the other day and was placed on a second one because I still was finding it hard to just get up and face the day. That's kind of necessary when you still work full-time. I also just never wanted to do anything including things that I used to find enjoyable. Fiona68, I like to hide in my house too! But I know it's not good for me to hide out here all the time. I'm hoping this new medicine will help me get out of this funk i'm in so I can attempt to get a life outside of alzheimer's.

    Round of hugs to all of you...
  5.  
    Sass, Thanks for the hug; appreciated and needed!
  6.  
    My Sylvia is now in a wheelchair, but after getting over the initial shock and sadness, I realize it's the best thing for her. Obviously it almost totally eliminates the risk of falling, but also, she has adapted to it quite well. It now allows her to better participate in activities/exercises, so for that, along with her still recognizing me, I'm grateful.