Woke up this morning to my beloved partner carrying dirty laundry in her arms, her left shoe on her right foot and the other literally not to be found, telling me she needed some help but unable to tell me what help. (It was bathroom help).
Guilty for having slept through her wanderings, I got up and helped her in the bathroom, then sorted things out: took the trash out of the laundry basket, put laundry back in basket, collected bread and cookies that have been distributed around the house, Lastly I swept up bird seed because I had failed to put back in its hiding place under the table last night.
She is gentle, loves hugs like a three year old does. I gently hug her back like a mother does. Sometimes I am her sister, sometimes I am her mother, sometimes I am her grandmother, and sometimes she is just searching for the other Lindylou who is not me. Rarely am I me. But she loves and accepts my hugs and gentleness.
But this morning something special happened. Because it is setting all time records for cold here in Massachusetts (-16 fahrenheit) we don’t go out to church. Instead we look at our cruise picture album and a power point slide show I’ve made for her called “50 First Dates”. When we are done, she looks up at me and said “you don’t deserve this. You have a life you can live, and now you aren’t doing it. I want you to live your life. You don’t realize what the years we’ve had together mean to me. Just go and live your life.”
I saw she was giving me a tremendous gift. It was welling up from somewhere I didn’t know still existed. And I took her up on that gift. I said, “Does what you are saying mean that if I cannot find someone to help us at Matthew’s wedding in West Virginia this May, that you’d be willing to stay here in a nursing home until I came back?” She said yes, that is exactly what she meant and she wanted me to live my life. I told her how precious her gift was to me and we hugged and cried.
The moment is gone now. She is off again into the world I don’t understand and that drags me down. And no reachable memory exists in her of the gift she gave me. But I have the memory. And if no one can go with us to WV in May, and if I can find no help us down there, I will take her gift and go alone to my son's wedding. Leaving part of my heart in Massachusetts.
She indeed gave you 2 very precious gifts - being able to clearly communicate and TELL you how she feels about you going and agreeing to let you go alone and stay behind. Cherish these moments because they become fewer and fewer as time goes by.
By my account my husband is somewhere in stage 7 (late stage) with FTD. He is mostly non-verbal and can only say a few words. On Friday as he was waking up from a nap on the couch (I call it the twilight zone - not asleep but not fully awake) he says clearly to me "The cable is out across the street." So I asked him where across the street and he pointed and said"Over there. The cable is out". I asked him how he knew and he said "I can see it from here". Now in actuality I have no idea if it was out because we look out onto a tree line in our back yard, but it doesn't matter and that's not the point. I got to hear my husband speak intelligibly in his pre-dementia voice and however brief was able to have a conversation with him. A treasured gift indeed, I had my husband back for a few minutes and I will always treasure that moment.
Regarding lucid moments, in my husband's case they can come anytime and are usually very unexpected. As the disease progresses it seems like there are fewer lucid moments but as I stated above, they're still happening with my husband in late stage. In his case, they seem to occur just when he's waking up from a short solid nap in that twilight zone I mentioned. My belief is that the brain has had time to relax and recharge and is probably most able to form ideas and sentences. It's only my theory but it's typically how that happens for us.
We were on a walk past week and Lisa asked me what was wrong with her so we had a brief conversation saying it was alzheimers that was causing her to have problems remembering how to do things. She asked I am not that bad am I and I said no. In reality we are somewhere late stage 6 I think. Sometimes she knows what she cannot do and cries. Anyways she said to me just put me somewhere you need to go on with your life. She said this to me many times in the beginning but not for a long time. It still does not make that decision any easier. I have a respite lined up in two weeks for two weeks as my sone is coming to visit and it will give us a chance to do some things together. However I am already dreading the process of dropping her off. It however was great that she managed As in your case give me permission.
I should read what I write before I post then there, I hope, would not be so many mistakes. However I find that when I am on the computer and Lisa is here I am always anxious. Anyone else find that?
Those lucid moments are really hard in a way. You're glad and thankful for that moment of contact, but then it's all the more devastating when they go back into Dementia World. But I will treasure till the day I die the last time he looked me in the eye, put his hand around my forearm, and said, "Liz, I love you." And he was there. All there. For a minute or two anyway. I think that was late spring or early summer of 2014, and of course he went comatose on Aug. 29 and was dead on Sept. 2. How do we survive this stuff? I'm giving myself chills just remembering.
Rona..........I just want you to know that you are not alone in the making mistakes business. I am a champion at that, However Wolf told me how to correct them and I'll pass it along to you.
After you post your blog, you will notice the little word "edit" in the top right corner of your post. Just click it and make your changes and don't forget to click the little save tab.
I've been following your stories with Lisa.......Very much like I went through with my Dear Helen. You're doing great and should be proud of the way you are coping with every sad problem.
Rona, we have to understand as we can that we are in a war where we are managing the losses and that is our only option. I think you mean that you worry about Lisa seeing what you say and my only suggestion is that you might have two windows open on your taskbar so that you can quickly switch to the other window. You might put a news article or something on the other window so it makes sense.
I didn't have that anxiety which I understand; but, I can tell you that I relate to your situation deeply because as Elizabeth said, it brings chills to remember how it felt to be in the vicegrip of all bad choices that hurt the one I love and the one I want to hurt the least. My heart truly goes out to you, but you must navigate through all this as you can.
I think Lisa may have become quiet about talk like that for two reasons or a blend of them. One is that it scares her to death. The other is that her nuanced comprehension is diminishing. For a long time it isn't the grasp of the thing that is gone. It's the intricate and rich nuance that comes with that grasp in those of us that do not have alzheimers messing our brain.
Tell her you love her. And try to stay strong. If push comes to shove try as honest and simple an approach as you can. I'm so sorry but I can't do this like this anymore. That's what I told my wife but she was much farther along because we had EOAD that just kept at her.
Rona, I've watched with interest and compassion from the background as you've struggled with the nh issue, knowing that I would quite likely be facing the need for respite care in May. The permission both Lisa and my partner have given us is a gift, which while not making these situations easy, at least let us know their love (the true love that is sometimes lost inside) is real. And that love wants what is best for you and for me.
Thank you. Wolf she would not be able to read what is on the screen and even if she did she would not understand it. I think it is more the fact that I am doing something she cannot, she wants to know what I am doing. What am I looking at. Wants my attention or wants to know what I am doing all the time.
Lindylou yes I feel I have been given permission since the beginning but it still is very hard for me to let go. As someone said to me a while ago you need to keep the resolve. You need to put on your big boy pants.