Wednesday, July 31, 2013

I feel like I have fallen into a hole...

I feel like Alice. I have fallen into a hole and as I slide my way through it I wonder where will it end. Will I come out on the 'other' side. Will things be the same? Worse? Better? Can we just go back to how it used to be?

Richard is continuing to fail right before our eyes. It is subtle and unless you know him really well you just might not see all the changes that are taking place. Of course the obvious ones, like he can barely stand any longer, you won't miss. But the changes that are going on in his head are the ones that are hard to spot. But they are there. And it is getting worse day by day.

He doesn't always know where he is. The other night, after he was settled into his chair for the night, he said, "I thought we would not go back to that motel" We were sitting in our very own living room. But it did not look familiar to him. He did not think it was our TV and things just didn't look right. Finally he fell to sleep and things were back to normal the next morning. Well, normal, for him.

He rarely knows what day of the week or the month is anymore. I make a 'sign' every morning so that he can see what day it is. But without that he doesn't know.

He knows who all of us are. He knows our names. He can no longer remember our address, although he can remember the address of the last house that we lived in, 25 years ago. He doesn't remember my birthday any longer. He still gets his right. He knows all the grand kids and their names. He remembers our sons. He doesn't ask very often about the oldest one, but when he does, he tells me he wants to see him sometime. And that breaks my heart!

He doesn't remember that he can't walk. That he can't mow the grass. That he can't help out in the kitchen. That he can't plant a garden. He still wants to do those things. We just smile and tell him he can...tomorrow. And tomorrow he forgets that he asked.

Recently my oldest brother was here. Richard was eating breakfast at the table. My brother was at the table drinking a cup of coffee. Richard was taken to the bathroom. When we returned to the table, he greeted my brother as if he had just gotten there. Like he was seeing him for the first time that day. We all go along with it.

He fiddles and piddles a lot. By that I mean he does a lot of repeated actions. Like he can fold and refold a Kleenex for hours. And everything on his table next to his chair gets moved and replaced over and over again. He struggles with reading the paper. He goes over articles on the front page for an hour at a time. I don't know what he is comprehending. But I let him sit with the paper for as long as he wants. He rarely opens it anymore. The same with the TV. He sits and stares at the screen. But what he comprehends is a mystery.

Today has been really bad. He is snappy with all of us when we don't do it right. He is up and down to the commode constantly. He cannot remember that he just went. And instead of argue about it, I get him up again. I put in a call to the Hospice nurse to see if we can check for a UTI. We will do that tomorrow. But we got news that we are changing nurses. He is mad about that. He doesn't want a new nurse. I hope he forgets that by tomorrow.  He really liked his young, female nurse. And now they are sending a guy. We will see how it goes.

Cross your fingers and hope that when I get all the way through the hole there will be a tea party set up for me!


19 comments:

  1. You are amazingly strong to be able to share this. *hugs* I am so inspired by your strength. I just really started reading your 'hospice journey', and I can relate because I was a care taker and went through the hospice process I watched my mothers slow stage 4 breast cancer battle
    I just started my blog yesterday, I'm hoping I can be as strong as you when I go to tell her story. Thank you for sharing, it makes me feel less lonely in my feelings.
    There is a tea party on the other side, you can't see it yet. I know its sounds unimaginable, but some how I have found relief in her passing, after watching her suffer all the way until her end trying so hard just to make her happy and comfortable. you will feel a weight lifted. but for now I can see you are enjoying every moment with him and that's all you can do.
    <3

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    1. Thank you Marilee for your kind words. I don't know that it is strength that I have but writing about it does help me cope. And yes, I am sure there will be a weight lifted. Even when a huge hole is left behind.

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  2. I understand what you're going through and wish I could give you hope things will get better. Maybe with Richards diminished physical abilities, a male nurse (presumably stronger) is a good idea. My best friend was diagnosed with Alzheimer's in her early 50's. She wasn't able to talk for the last couple of years. She became difficult, angry, hostile and because of that nurses changed. Her husband was alot like you, kind and caring and was remarkable with her; but he worked full time (had to financially), and had day time care givers at the house. So he worked both at work and at home with her evenings and nights well past the time doctors said her being at home was too much. When it became dangerous for all, he found a care facility a short distance from the house. He had been a college wrestler and was stronger then the average guy, and she was tiny little thing; so he was able to physical manage longer then many would have been able to. She loved the beach and we shared one final week together the 4 of us just a few months before her move to the care facility. I can't say it was a vacation for any of us, due the work and difficulties; but there were a few minutes we could see in her eyes her joy at seeing and sitting on the beach again.

    My heart goes out to you, will keep you and yours in prayers.

    I found great relief blogging when my Mother was dying, those months sitting in ICU were long and difficult, but somehow the blogging seemed to keep me in touch with people, which was helpful. I couldn't really talk to friends in person in the middle of the night so I encourage you to keep sharing; I hope it lightens your load.

    August Happiness Challenge

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    1. I don't think anyone who has not lost their husband...their soul mate...the love of their life...the man who saw to their every need could ever understand but I thank you for your kind words Sandy. I too have lost my mother and my father and it is NOTHING like losing Richard so slowly right before our eyes. But I will keep writing about my experience as it does really help

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  3. Paula, I so feel for you. My friend's father passed from Alzheimer's and it was a very long and sad process. Her mother used to keep him busy by giving him a basket of socks to match and fold. She bought a few big packages of socks in different colors and sizes and had him match and fold them. Then she would undo them and give the basket back to him and ask him to do it again. It entertained him for hours when she was doing something where he could injure himself while she was doing things like cooking or showering.

    Nancy Reagan called it the "long, long goodbye" and she was right on. It is terrible to loose someone in a car accident or quickly to a disease, but watching our loved ones slowly pass while their body still lives is just heart wrenching. Thank you for sharing this journey with us. I only wish we could do more for you.

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    1. That is so true....it is the long, long goodbye!

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  4. Tough road you are on. I am glad you are shaing it. It is so important to express your thoughts during this time.

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    1. Thank you so much! I will keep writing

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  5. My heart breaks reading about your pain, but I can see the strength in your words. I can't imagine being where you are right now. I hope the new nurse works out.

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    1. Thank you so much Flora for being so understanding!

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  6. "Can we just go back to how it used to be?" Such a poignant question! My uncle suffered from Parkinson's and it was a long, slow trek toward the finish line. My mother (his sister) had an illness that left her less than she was for more than a year. Her journey was more swift and we lost her on Sept. 13, 2012. When I look back, I think, "a year ago today she was still here." But a year ago today she was still sick, and vague, and a little frightened. So even though she was still a live year ago today, I long to go back even further, so that both she and my uncle were "how they used to be." I hope the new nurse works out because I can appreciate how hard this can be for you.

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    1. I think I remember reading about your Uncle on your blog a long time ago when I did Sunday Stealing....I didn't realize he had Parkinson's.

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  7. :( Dementia is such a horrible thing, I remember seeing my grandpa not recognizing anyone at all, it's truly heartbreaking.

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    1. Thank goodness he still recognizes all of us.

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  8. Watching my friend slip away when she was so young, watching the pain her husband went through made me relate so to you. Keeping you in my thoughts and prayers.

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  9. Thank you for writing about all of this. You are helping people by journaling this journey. I know you certainly have educated me. I wish my arms could reach all the way to Kansas to give you a giant hug. Love you.

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    1. I want to write about it so that someday the kids can read this and realize the journey that we took

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