Another Year.....

We made it through another year with this awful disease. However, 2011 brought some changes. I don't do well with changes, whether it is with her memory condition or staffing at the nursing home. Both happened this past year.

My mom was having trouble eating some of the tougher foods. This at times resulted in her vomiting after eating. It was decided that we should put her on mechanical soft foods. This means that when there are tougher meats, it is chopped up. This is not pureed food, thank goodness. I don't think I will ever be ready for that stage. She seems to be doing okay on her mechanical soft foods.

We have had roommate changes, which is always interesting. My mom has a tendency to get stuck on words and she talks in her sleep. So, people can handle that and others get nasty about it. The best roommate she ever had was when she 1st moved up to the 3rd floor. The staff is very good about making sure the roommates get along and will make changes if needed. There has been staffing changes at the nursing home, whether they moved on with a new job or were laid off because of budget cuts. Both, I don't like. I have become friends with many at the nursing home.

The biggest change for me this year was her doctor. He was given a great promotion and will be training other NP's. After a year and a half, I finally was able to trust him and his decision for my mom. I had gone through her end of life stuff with him. It is still an adjustment for me. But I remind myself that God was here before her doctors, before the nursing home, and before this disease. Even when things change, God does not, nor does His love for my mom and I.

There have been changes in her memory and her mental ability. Words are harder for her to say. She gets stuck on words more easily. She doesn't laugh as much as she did at the beginning of the year. Her eyes don't always look at me with recognition, but more confusion and emptiness. The "I love you's" are fewer and fewer. I still tell her I love you and once in awhile I get a response. I still go to see her 3 times a week. I know some people wonder why I go so much, mostly for me. I just need to see her.

Many people look forward to the New Year. For the 1st time, I am not. I don't know why. I guess I am always scared of what this new year will bring when it comes to her and the dementia. I am scared that this year could be the last. I am scare of her getting worse. I think if I can stay in 2011, then everything will stay the same. I don't always want to move forward because I know one day I will be without her. I selfishly want to keep her here. When she dies, I will still be here. I will have to learn how to live again, but without her. I will have to figure out what to do on those days that I visit her. I have been going through this with her for the past 8+ years. What will I do when she is gone? I also know that this year, I have to start making funeral arrangements. Not that I plan on her dying, but people say it is easier if you do it before hand. The problem is that when I begin the process, I can't breath. How am I supposed to make these decisions? I shouldn't have to be making these decisions.

I hope this year is a stable year for us. But I know that if it is not and changes continue to happen, that God is here with us. He loves her so much more then I do. He cries when I cry. He aches more, for she is His daughter and His creation. He knows her thoughts even when they are confused and mixed up. He is holding all her words and lost memories in His giant hand, waiting to release them back to her in Heaven.

Thanksgiving 2011

I realized it has been while since I wrote about my mom. I figured this is a good time to write because as the holidays approach, I hurt and I ache. It helps to write.

I am thankful that she is still here for me to visit. Most days she seems to recognize my voice, but recently there have been a few days where she looks like she doesn't know me at all. Those days hurt deeply. It is a harsh reminder of this disease. People ask how my mom is doing and my answer is stable, because that is all I can really say. You can't say oh she is getting better. You can say she is getting worse. So, as long as I am saying stable, I feel that is good.

I am thankful for the great care she is still receiving. There have been some staff changes and those have been very hard for me. Some staff, I can now call friend and I am so grateful for that. I don't do well with change and I know God knows that. I think He shakes things up for me to remind me that He is constant. Even through all the changes both with her and the nursing home, He is still constant and does not change. For that, I am grateful.

I am grateful that she is my mother. I am grateful that she taught me so much when she was healthy. I am grateful that she wrote me letters and cards. I am really grateful that I saved them. I am grateful that I can see her in me and things that I say or do. She was a wonderful mother and I am so blessed to be her daughter.

But there is a side to the holidays that is not easy and is hard to be thankful for. That part is the hole that is in my life where she was. I remember going to craft shows the day after Thanksgiving. We would play games on Thanksgiving with friends of the family who joined us. I miss those days. I always thought I would have her around. I had dreams of what the holidays would be like after I was married. These dreams included kids and big family gatherings around the holidays. A part of me grieves around the holidays, for those dreams are not going to happen. I wanted her to be Grandma. She would have been a great Grandma. She was a wonderful mother.

A Rough week

Emotionally this week has been draining. My mom is fine right now. She is stable and happy. But this week was her birthday. She turned 63. It is hard to believe we have been dealing with this for 7 years. As the years go by, the way she was before the Dementia seems like another lifetime ago.

Today, I did the Walk for Alzheimer's. It was the 1st year I have been able to participate. As I am driving the City Park, I was remembering how my mom used to do this drive 5 days a week when she worked at PSL for the Volunteer Department. She used to be able to work and drive. Now, she can't even feed herself. How can this be the same person?

I went to see her on her birthday. No, she won't remember and probably didn't have any idea that is was her birthday. I do it for me. I do it for my memories of her. Is it easy, no. Do I ache and cry, yes. But I need to be there with her. It makes me feel better most of the time.

I don't know what next year will bring. I can only hope and pray that this time next year, I will be celebrating her 64th birthday and still carrying a Yellow Flower for the Alzheimer's walk. That color means caring for someone with Alzheimer's. I dread the Purple Flower, that is in memory of someone who has died from Alzheimer's. But I know one day this horrible disease will take my mom completely away from me, both in mind and body. Selfishly, I say not yet....because what will I do and who will I be when she is gone?

Psalm 139 Alzheimer’s Version

God sees you, He knows what’s happened, He knows you.He knows when you sit and when you sleep.
He knows your tangled thoughts; He knows them straight.
He knows when you’re not here
and where you are when you’re gone.
He knows your ways.
Before your words are lost before they get to your tongue,
He knows what you were about to say, what you meant.
He knows you.

There’s nowhere you can go, Mom, where God won’t go with you,
where God’s Spirit won’t comfort you, can’t hold you.
As your light turns to night, even this darkness won’t hide you.
God sees you clearly because dark is light to Him.
He’ll go with you.
And He thinks of you, Mom, often.
The number of times, the many ways God cares for you,
if we tried to count them, would outnumber
sand on a beach.
So you can rest easy, while I count.
I’m counting my tears.
I’m counting the slights, the indignities, the affronts
to your good pride.
I’m counting the frayed edges, the missing pieces of your
lost person.
But we’ll get through this, Mom,
because when you awake—everyday and someday—you
will be with him.
And someday I too will awake with Him, with you.

I found this one day and I changed it to fit my mom. I always say that God is holding each lost word and lost memory in the palm of His hand. One day, those will be released back to my mom. One day, she will be restored. If I love my mom this much and ache for her as much as I do, God much ache more. He created her. Although, I don't always understand why we are going through this. I know He is with us and isn't letting one forgotten moment get away from Him. I also believe, He is holding on to every tear that I shed on behalf of my mom and I. His ways are not our ways and His thoughts are not our thoughts. I just have to trust.

Comfort

Comfort is one of that word that would describe what my mom was to me growing up. She was there with me when I had my tonsils removed, staying overnight in the hospital. When my parent's divorced I would sleep on the floor in her room and it made me feel a little better. Even when I was older, I would find myself sleeping on her floor if I was having a hard time. A hug from her or encouraging words would always help me feel better when dealing with a broken heart. I miss that about her. Sometimes, I still need the comfort she would bring. I don't think you are ever too old for the comfort of your mother.

I hope that maybe now, I bring her comfort in her current state. I always hope that when I am there with her, she is a little more relaxed. Maybe my presence brings the same feelings of safety, that she brought me. I wish that when I sat with her, I would feel her comfort again. I wish when I sat with her, that I would feel that everything is okay. But life is so different now with her being sick.

Aching

I have become very good at hiding the pain with a smile. Most of the time, it is a genuine smile....but there are those times when it is hiding the pain, the tears and the aching in my heart for my mom. There doesn't have to be a specific reason, I could have had a great day with her or just going on with my daily life. It can hit at anytime and I ache. I can remember her and the way she was. I think to myself how even though she is treated with the greatest of dignity at the nursing home, how embarrassed she would be that they help her with everything. That makes me ache. It makes me ache for the person she was. I ache for the fact that she doesn't do much on her own anymore. I ache when she is trying to say a word and it doesn't come out right.

I ache when those memories hit me of the way life was before. I can sometimes see it so clearly and yet it seems like a lifetime ago. I ache sometimes at night as I worry is she lonely. I ache for the fact that I will never see her the way she was on this side of heaven. When I think of the time that she will leave this world to be healed in Heaven my heart just aches. What will I do when she is gone?

Mother's Day 2011

A Mother's Love

Helen Steiner Rice

A mother's love is something that no one can explain

It is made of deep devotion and of sacrifice and pain.

It is endless and unselfish and enduring, come what may,

For nothing can destroy it or take that love away.

It is patient and forgiving when all others are forsaking,

And it never fails or falters even though the heart is breaking.

It believes beyond believing when the world around condemns,

And it glows with all the beauty of the rarest, brightest gems.

It is far beyond defining, it defies all explanation,

And it still remains a secret like the mysteries of creation

A many splendored miracle man cannot understand

And another wondrous evidence of God's tender, guiding hand.

I miss you, mom. I ache inside. I ache for the person you were and for who you are now. I ache because you loved to walk and now, you don't want to. I ache when I hear you try to say words and they don't come out right. I ache because you have to be helped with everything and I know that must get tiring. I ache because I can't take care of you by myself in my home. I try to be strong, but inside....I ache. I cry and I miss you so much.