Good morning Joan. The most difficult loss is just sharing the small day to day stuff. Commenting on the news or doing a puzzle together. The saddest is that Bill dos not know he has granddaaughter. I look at her pictures and ache for him. I miss just walking together just holding hands.
I'm so lonely. My DH just sleeps most of the time, and hardly eats. If, when he gets up, I try to talk to him, he doesn't understand what I'm saying. Hecan't watch movies, or shows with a plot, because he doesn't get it. He can't follow the thread and will ask me constantly what's going on. He said to me yesterday, he's afraid to answer the phone, because if it's not me (when I'm out) he will sound stupid, because he won't be able to answer the questions, and will have to just tell them to call back when his wife is here. Even with the grandies, he is just too tired to do anything. Just can't even talk to them, and anyway, doesn't know what to say. Ad then he asks me what's wrong with him? How awful, to have your life stolen from you.
Joan, I'm with you, it's hard to pinpoint any one thing. The loss of emotional and physical intimacy and just the subtle day to day changes tear my heart to pieces. It is heartbreaking and as I've said before, we're at the moderate stage, more heartbreak to come.
I lost the one person in life I could count on being there for me. I lost my best friend. I lost my sweetheart of 50 years, I lost the retirement years we had planned for, I have almost also lost all the good memories we made together, I feel like I have lost my whole life.
Jane, for your own sake you should try to claim 1 day a week just for you to get away for a few hours if possible. you need time to think of something other than this disease that has stolen your life from you. My DH has also been the one person I could always count on & friends for 50 years. I miss him terriblly since all that is left is a shell of who he use to be. Our love filled lives have vanished. We now sleep inn separate rooms, but that has actually been a good thing for both of us. Whats diffficult are the days that he is angry & frustrated & I am the one he vents his anger at,since most of the time there is only him & I. My Shih-tzu puppy is a Godsned. She does get him to play with her. Some of his children from another marriage have just written him off & the rest are just distant. It is sad & so unfair. If he had any other disease they may still be around. They know nothing of Alzheimer's & don't want to know. They just think his personality changes are because he has gotten bitter in his senior years.
I ache so much for each one of you still in the "trenches", still anticipating. My job is done, ALZ sojourn ended. Yes, it IS a life, lives, stolen. It's so lonely here. Just try to fill your days with as much "normalcy" as possible. I just came in from outside on the porch.....my horses, hounds, barn cats, birds and one inside cat are my day to day family. Strange...I've gotten used to the silence, my music on the i-pod, checking in here a couple of times a day.
And, brennie, on the day you claim for yourself once a week, DON'T come here. Stay away from ALZ for as long as you can and just be you again, without interference.....then come back when you need a hand. I love all of you, so much. Jen
GOOD ADVICE , JEN. WHEN YOU TAKE YOUR RESPITE DAY,,,, DON'T COME ON THE THREADS.... ( just stressing the point not yelling). It is important to take a break even from here hard as that is..
I wish I could say something helpful. I remember last year taking my wife swimming and in chest deep water holding her in my arms while she was giggling. It was late in the summer and I looked around trying to burn the moment into my mind; but, I thought my heart was going to literally burst. I thought that might be the last time we ever went swimming together. We are this year but it's not the same.
I don't know what it will be like for me alone. Like all of you I miss her so much even though she's still here. My insides tell me that it's a time in life where I have to learn to value the things in life that have real meaning for me. The question over the winter was: is that a painful moment I remember or a joyful moment? My answer is that it's both.
I listen to suntgirl*'s post and what sounds like calmness inside (or some) and I wonder if my thoughts are on the right track that I have to find a place inside where I start to understand myself better and what I alone really value in life and open my heart to those things more than I ever have before. The trees, the birds, the seasons, what I want to cook, some reading, some friends, my cats. I might start making quilts. I just made that up; but, I mean try things on and genuinely see if they sound interesting.
The real thought over the winter was, "Ok Wolf. There's a lot of pain and this is really hard and all that hurt is real. But if you close to the good things that are also here at the same time - you are just listening and living one side of this." I promise some of that idea is proving out to be true. I remind myself that when we've been going out to see friends I've really spent all my time getting us ready, and thinking of what to say that describes where we are right now, and watching their faces because they love her too and feeling sorry enough for everybody that you could fill a pool.
I'm better now at going and bringing the other half too. Really having a laugh. Really being in the moment where we are all here and my wife is sick - which is true but not the only truth. When I want to be happy, and I allow myself to be happy, and I get my head into that with full seriousness - I have better moments - even if later I'm tearing my hair out over something we just can't get done right now.
It may just be hope on my part. But right now I believe that much of the problem has been that I have to truly want a bit of fun, and see that as more than just something I need or want or should do while not actually having my heart in it. I have to let that be real and go and get it. I'm a very analytical type. When I asked this voice inside what I was missing the answer was honest desire for my own happiness. Yes, but life is so hard and full of sorrow I answered. Different topic said the voice.
I don't mean to sound glib and I wouldn't dare post this in the face of so much sorrow if I didn't believe there's some truth in this. The pain, and emptiness, and hardship, and lonliness are all so real and powerful. Yes. But I can tell you who's in the front row of the cheering section hoping we find ways towards some calmness and some fulfillment and even some pleasures. The very person that we are or were caring for. We have to desire it, allow it, believe it can be there, and go look for it.
Wolf....I couldn't have said it any better, m'man!! One doesn't get to that spot overnight, either. And, even then, they'll be a lot of 'back-slidding'. My 'attitude' was hard won over time. I used to come UNGLUED on these threads and even be sent to "time out" once in a while....yes, get barred from posting sometimes. Sad. I needed help so much and was so lost....I couldn't care for John by myself once I found him and brought him home. The kids and sisters were in denial then and I was the reason for every conflict mankind faced.....probably global warming, too. There have been several points in this journey where I seriously considered hospitalization for myself, exiting this life, running away. MY inner voice keeps telling me that this life I've been given isn't MINE to squander. I still face a lot of the aftermath of John's death...the financial and legal messes I've been left holding a bag of. But, there is a point where you suddenly realize that you've done (or are doing) the very best you could and you simply HAVE NO CONTROL over the outcome. No matter how much struggling and energy you invest. Have to let it go. So, I'm just rolling with it. Today. Like VERY much what you said in the last paragraph you wrote. I believe its true.