This Time of Year

Christmas is approaching again and I miss her. She always loved Christmas. She always made Christmas fun and special. I remember carrying her pink chair up the stairs in her town home, laughing all the way up the stairs to make room for the Christmas tree. Her tree was always mauve. It was her favorite color. It was a pretty tree. I also remember when I was growing up she stayed up late with me one night to watch and record Amy Grant's Christmas Special. We always liked to watch Little Women at Christmas. She also loved all the Hallmark Channel Christmas movies. I love them too. Memories of certain things come back to me once in a while and I ache for those days. With Dementia/Alzheimer's it not only takes her memories away, but I find that mine are soon filled with how she is with this disease. I try to write down memories as they come up, so that I will remember and my memories won't just be of how she is now.

Slowly, I am watching her change, fade away and become less of the person I used to know. Her eyes have changed so much with this disease. Not the color, just the way she looks at me. Some days, she looks at me with recognition and others with confusion. I hold on to the good days because they are becoming fewer and fewer. The nursing home had a Christmas dinner for the families and I was able to go. It was the first time, in a long time, that I had to feed my mom. I have a new appreciation for those who feed my mom her meals. But I found myself thinking to take each moment in, because I do not know what this time next year will look like. When you have a loved one with dementia/Alzheimer's you live moment to moment, day by day, etc because things can change so quickly and you are usually not ready for it.

I find myself looking at her and praying selfishly that God would give me more time with her. I don't know what I will do when she is gone. I know she will be whole and her memory restored, but what will I do. Although, her memory of me is not always there, I know she is my mom. I can see her. I know who she is and sometimes I just need to see her.

This date last year....

A year sure has gone by fast. This date last year, we had just had our 2nd visit to the ER with my mom. It was clear that it was time to move her. I remember that day, the social worker at the hospital called all over looking for somewhere for my mom. I had been looking myself and I thought I had found the place. They did not want to take her from the ER. They wanted her meds to be stable. But the meds are what got us the 2 trips to the ER in a week. I remember that I thought, I would take her home before sending her back to the Assisted Living house. The last call the social worker made was to Jewell Care Center. They said they would take her....

I had been looking at nursing homes before all the trip to the ER happened. I spent my days off traveling around the city. It was a new process for me and I just prayed as I made this decision. It is horrible when you are looking for a nursing home for you then 61 year old mother. Everyone always says, "Oh she is so young." I thought that the next step was a locked Alzheimer's unit at a nursing home. See my mom was still walking a year ago. She wasn't walking well, mostly shuffling and not sure of her footing at all. When people heard she had a memory problem, it was just assumed the right place was a locked unit. I thought the morning of October 27, 2009, I had found the place for my mom. I was wrong.

I remember the social worker at the hospital saying to me that just because the facility is new and looks good doesn't mean the care is great and the same for an older facility, doesn't mean the care is bad. I never went to look at Jewell Care Center on my rounds. But I was taking my mom there the night of the 27th. The weather was horrible and I drove her myself. She was still very over stimulated from the meds. She was 102 lbs and probably scared. I had to leave her there that night and try to sleep. The next morning we woke up to a blizzard. I was not able to see her until Friday. I sure did a lot of praying and I called all the time to see how she was. It took her a little while to settle in, but she did.

It is funny how I thought I knew the place that God wanted her to be. I thought Manor Care was the place for my mom. But now that I look back, she is right where she is supposed to be and God knew that. His ways are always better. He still takes care of her. He still looks out for her. He still hears my prayers. When you are in the moment, you think why is this so hard? What is God doing? Doesn't he care about what I am dealing with? But I think He was preparing the right place for her. He was doing things His way. He was doing things in His time.

She is no longer walking. But she is now at 139 lbs a year later. Everyone loves her there. We have great insurance that covers what Medicare doesn't and Medicaid covers the rest. I would have never known if we didn't go to Jewell Care. Her doctor didn't change from the Assisted Living house. It is the same and he knows all her history. I have great relationships with the staff. I know they care for her and will until the day she moves into Heaven.

I am so grateful that God is with me through this journey. He knows better then I do. He sees the whole picture. He knows what is best for my mom. There are still time I don't understand this journey or why? But I always remind myself that His ways are not my ways, His thoughts are not my thoughts. He is walking this journey with me. He is there with my mom.

God in the midst of a horrible disease...

Alzheimer's and dementia is a disease that slow take your loved one away from you, while leaving you with just the physical person. It takes her memories away of everything that happened to her throughout her life. It takes away her self sufficiency and she can no longer do anything for herself. It is not easy to know that she is being fed every meal. They try to keep her somewhat able to feed herself with at least one thing each meal, but the brain is just slowly forgetting. You find yourself wondering, "does she really know who I am?" She tells me she loves me and smiles when she sees me. I keep telling myself that she knows me. You grieve with each decline of her memory. You grieve for who she was, is now and what she will become down the road. At times, you find yourself praying God takes her before she can't swallow or talk at all. You find yourself wishing that you could go back to before she was sick. It is hard to believe that at one point she was normal. You were able to talk with her about life and spend time together. Sure, I still go to see her and spend time with her, but now the conversations are limited. You listen as she repeats the same phrases over and over again. You think to yourself, how can this be the same person?

Somewhere in the middle of this dark journey, a light shines through. A light that reminds me that God is still here. He is in the midst of this horrible disease and this horrible journey I am on with my mom. God is where her memories are not anymore. He is holding them securely in His hand ready to release them when she meets Him in Heaven. I see Him all through this journey as we went from living on her own, to living with us, to living in the Assisted Living house, and now at the Nursing home. He has directed every path we take and decision I make for her. He is holding every tear I have shed and I think He might cry too.

I see God in her smile when she looks at me and I think, " she knows me." There is a hint of recognition in her eyes. I see Him when we are sitting at church Sunday morning and she is humming along to hymns she learned a long time ago. I see Him when I hear her laugh and it sounds just like my mom. I see Him care for her and send the right people into our lives at different point in this journey. And all though at first, I was angry with Him and asked Why He would do this to us, I now see Him. I think if I love my mom this much, how much more He loves her. I treasure the precious moments I have with her. This horrible disease is taking her away from me and I don't want to take for granted anytime I have with her, because at any moment that little bit of recognition in her eyes could be gone.

"And I am convinced that nothing can ever separate us from God's love. Neither death, nor life, neither angels not demons, neither our fears for today nor our worries about tomorrow-not even the powers of hell can separate us from God's love. No power in the sky above or in the earth below-indeed, nothing in all creation will ever ben able to separate us from the love of God that is revealed in Christ Jesus our Lord. " Romans 8:38-39 (NLT)

Happy Birthday, Mom.

Today is my mom 62nd birthday. It is hard to believe how fast time goes. It is hard to believe we have been dealing with the dementia for 7 years. This time last year, we were celebrating at the assistant living house and she was walking. Now, we are celebrating in a nursing home and she is not walking.

My mom always liked to go for Chinese food on her birthday. We had a specific restaurant that we always went to. I would usually get her some artwork from Thomas Kinkade. Today, all I got her was a cake. But she enjoyed it. She doesn't really understand or remembers gifts. It is very hard and sad at times.

Today reminds me of Psalm 139...

You made all the delicate, inner parts of my mom's body

and knit her together in her mother's womb.

Thank you for making her so wonderfully complex.

Your workmanship is marvelous-How well you know it.

You watched her as she was being formed in utter seclusion,

as she was woven together in the dark of the womb.

You saw her even before she was born.

Every day of her life was recorded in Your book.

Every moment was laid out before a single day had passed.

I also remind myself that God holds her lost memories in His hand and they will be restored one day.

Happy Birthday, Sweet mom. Oh, how I miss you. Oh, how I wish we could go enjoy some chinese food and talk about life.

Time...

I walked into our guest room last night and stop for a moment. I thought to myself this is where my mom used to sleep. This was her room. It seems so long ago. I have times like this often. Times when I remember so clearly things we did together. Times when I can see so clearly when she was healthy. But it seems like a different lifetime. There are also a lot of times when I ache inside for the way she used to be, that never goes away.

If I could go back, I would spend more time listening to what she had to say. I would enjoy our moments together and take more pictures. If I could go back, I would sit and enjoy her company more. Each year the goes by, takes me further away from those healthy days and takes more of my memory of those days. Each year that goes by, takes her further away from me.

With dementia, you never know how much time you have with your loved one. So, you learn to cherish each moment you have with them. I cherish the few words that are exchanged between us. I cherish the times I see her smile and I hear her laugh. I cherish the times she looks at me and say "I love you." There are times I pray please give me a glimpse of the way she was. There are times I pray please give me some more time with her.

There are times that no matter what, I cry when I leave the nursing home because this is not how things were supposed to be.

Care Meeting...

Yesterday was my mom's care meeting at the Nursing home. As I was getting ready to head there, I was thinking...Most people my age go to Parent/Teacher conferences, not care meetings for their mom's at a nursing home. But this is the journey God is taking us on. I knew it was going to be a pretty good meeting and not much to talk about. I was right. But it was nice to hear from the staff about my mom. The activities lady told me that they do one on one activities with her. Although, she doesn't really do much because of how the dementia has affected her brain, they still meet with her. Christina says she likes to sit with my mom and just hold her hand. I know my mom likes that because I do that with her too. They always take her when there is an activity with music. She still loves her music. I guess there is also a lady that comes in once a month that does aroma therapy with soothing music. Yup, they know my mom!

The nursing manager told me my mom is one of their favorites. I was proud. It is good to hear that from people who take care of my mom every day. Sarah said they still are helping her walk if she wants too, but it is getting harder and harder. They give her one finger food with each meal to keep her using her hands, well, her right hand. My mom is stable, no major changes or behavior issues. I am grateful for these stable days.

"Thy Will be Done"
Helen Steiner Rice

God did not promise sun without rain,
Light without darkness or joy without pain.
He only promised strength for the day, when darkness comes and we lose our way....
For only through sorrow do we grow more aware
That God is our refuge in times of despair,
For when we are happy and life's bright and fair,
We often forget to kneel down in prayer...
But God seems much closer and needed much more
When trouble and sorrow stand outside our door,
For then we seek shelter in His wondrous love,
And we ask Him to send us help from above...
And that is the reason we know it is true
That bright, shinning hours and dark, sad ones, too,
Are part of the plan God made for each one,
And all we can pray is "Thy will be done."
And know that you are never alone,
For God is your Father and you're one of His own.

Going home...

My mom's roommate is so cute sometimes. She is always telling me "how good my mom is doing and she is talking real well". She tells me how she is getting around and she can find her way to her room. Mary thinks my mom is there for rehab and will be going home. She asked me today "if my mom is going to go home when she gets better?" I just answered yes. There are some things you don't get into with some of the residents. I am not entirely sure what Mary's health status is. Plus, it is one of those times that I have learned through this process that a white lie is okay. There are just some things that the truth is not the right answer.

In my heart, it is the other way around. My mom will be better when she goes home. Oh, my heart wishes she would get better and be able to return to her old life, but I know that is probably not what God wants for us. I never thought I would ever feel that my mom is better off in Heaven. I would never go there because I didn't want to think about being here without her. But what the dementia has done to my mom.....I know this...

2 Corinthians 5:6-8
We are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord.

Revelation 21:4
He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things had passed away.

So, yes Mary, one day my mom will be going home.