Thankful

When your loved one has an incurable disease, it is very hard at time to be thankful. Each day I see my mom slipping further and further away. I miss her all the time. She is not the same person anymore. She can no longer do most things for herself. She is slowly not recognizing me as much. So, how can I be thankful in all of this?

First, I am thankful for the care that the nursing home gives her. I am thankful for the staff and the friendships I have built there. They care for her in a way that I cannot. They support me and my decisions I make for her. The doctors at the nursing home care about both of us. They ask how I am doing in all of this. They don't pressure me and want what is best for me. Decisions at this stage in her disease are not easy. They help me each step of the way. Hospice helps with her pain and having other visit her when I can't.

Second, I am thankful that we can go to the ER and get her jaw fixed when it locks. The insurance pays for it and we are usually in and out of there in a few hours. Am I thankful her jaw is having issues, no. Do I understand it, no. But I am thankful to have the means to fix it. I am thankful for the caring Ambulance company that I use most of the time because they know us. Yes, it is sad they know us...but they care about us.

Third, I am thankful that I am able to be there for my mom. It is exhausting and I ache deeply all the time for her. But I can be there to make decisions on her behalf that she is not able to make anymore. Most people just drop their loved ones off and don't really care. Some have to work to provide for their family. I am thankful for a hardworking and understand husband, that allows me to take care of my mom.

Most of all, I am thankful that this is not the end. I am thankful that my mom made that decision many years ago to accept Christ as her savior. One day, she will be whole again. Oh, how I wish it was on this side of Heaven. But I know that God is holding every lost thought, word and memory in His mighty hand. I know that He is holding every tear I have cried over her, in His hands. One day, all those will be restored. He holds her so close to Him and He holds me close, even when I don't feel Him. I know He is there. I know He cries with me. Could He take this all away? Yes. But this is the road He has chosen for us to walk. I am thankful He is walking this with me. I am thankful for the faith that I see this journey developing in me. See faith isn't developed in the good times and when life is going smoothly. Faith is developed when I can 't see the end, I can't see the reason for all of this, I keep praying for her jaw and it keeps getting locked. Faith is developed when I cry out to Him because my strength is gone and I have to go to the ER one more time. And so many other times through all of this. Oh, how I am thankful for my Faith!

I am thankful that one day this is verse and long for that day!

Revelation 21:4
And He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain.

Hospice= help and comfort

The one thing that I have learned from all the time that I spend with my mom at the nursing home is that hospice doesn't always mean death. I used to think that. In most cases, people don't go on hospice until they are close to dying. For my mom and I it means help.

After an exhausting 2 weeks of ER trips every couple of days in March, I made the decision to put my mom on hospice. I knew by doing this it didn't mean she was dying soon. I knew that they could help us with her pain medicine and make changes to some of her other meds to see if we can keep her comfortable. With the late stage that my mom is in, you don't know if she is in pain and where that pain might be. It is a guessing game. You watch her facial expressions and her agitation. Those are the only signs we have. Can she be in pain and grinding her teeth, sure. Does she understand what she is doing, no. That means I need to do something to keep her comfortable.

I met with the hospice on the Monday that my father in law died. I sometimes wonder if all the trips to the ER was God trying to get my attention. Was He getting me to the point where I would accept Hospice, maybe. Was her jaw coming out because of the Botox, maybe. Did I need more help with her care, YES! That Monday she was signed up with hospice. They brought her a new bed, a new wheelchair and a new air mattress to help her be comfortable.

For the first time in a long time, I didn't feel alone in this. Yes, the staff at the nursing home is wonderful and I call many of them friends. But they have so many other residents that they are in charge of. They take excellent care of my mom and I am so grateful for all of them, but I needed more one on one help. That is where hospice comes in. The hospice nurse is wonderful. The social worker knows all about lock jaw because her ex husband had it. The chaplain sits with my mom and reads the Bible to her. The chaplain calls me to see how I am doing.

Everything hospice does for my mom is about making her comfortable. That is a huge blessing and praise for me. See I can't make her comfortable all the time. Yes, I think I can help when we are at the ER and I am talking to her. But I can't take the pain away. I can't change this for her. At least with hospice, they can help her with medicine. They can change any medicine at any time to make her comfortable. They visit her on days that I am not there and that brings me comfort.

It takes special people to be hospice workers. They are full of compassion and care so much for their patients and family members. I am so glad that I made the decision to get hospice care for my mom. I know she is in the late stages of this awful disease and I can't change that. But I can at least make sure she is comfortable and hopefully not in pain. God continues to bring amazing people into our path through this. I am grateful for them all.

Decisions

Today was one of those days when I hate having to be the one to make decisions for my mom. As the years go on with her Dementia and life throws some curve balls in the mix, there are times I don't want to make the decisions. There are times that I want to throw a tantrum and say I don't want to. It doesn't last long. I pull up my big girl pants and press on.

I am glad that I can make decisions for her. Most people their family just drops them off and is not apart of their care. That leaves it up to the staff. They are great staff and I know they don't take making decisions for people lightly. The staff will talk to me as I am making decisions. The doctors will talk to me. But in the end, it is up to me.

I know I have some of the same questions that parents do when deciding things for their children. Is what I am saying yes to going to harm them? What if I am make the wrong decision? I don't want to do anything to hurt her. I want her to be as comfortable as we can make her and give her quality of life for as long as we can.

Never did I think that at my age would I have to make decisions about her Advanced Directives and Advanced Care. Luckily, the doctor that went over it with me was very caring and compassionate. It is not a subject that is easy to talk about and the decisions are even harder.

Many people say how lucky she is to have me. But I am blessed to have her as my mom. She was a wonderful mom and woman when I was growing up. She taught me so much. She was there when I made the most important decision at the age of 7. She was there to talk to me about Jesus and she was there when I decided to accept Him as my Savior. I couldn't imagine going through all this without Him. I get to pray to Him about all the decisions for her. And if I love her as much as I do and I don't want to cause harm, I can't imagine how much  more He loves her.

Do I understand why this has happened to us? No. Do I get angry about it? Yes. But I know that God is already where my decisions are going to need to be made. He already knows the outcome. I just have to decide to trust Him 100% and that He has my mom in His hands.

Christmas 2012

She didn't respond much today. I brought the dogs and Blake with me, she didn't respond much to them either. She was sleepy and mostly rested in her chair. The days leading up to Christmas had my stomach in knots. This year has been a challenge with her jaw. For whatever reason, her jaw has decided to lock this year, three times with three trips to the ER. I would say many silent prayers asking God to please keep her jaw in place over Christmas. I didn't want to go to the ER. I cringe when my phone rings and I see it's the nursing home. I freak out thinking what is wrong. They usually only call when something has happened. I am there 3 times a week.

The trips to the ER bring many tears for me. Tears for her and what she is going through. How scared she must be because she probably doesn't understand why her jaw is locked open and she can't ask for help or talk very well. She is taken to a hospital where the people are different and she doesn't recognize them. I go every time because I can't leave her there alone. I can't expect the ER staff to make the right decision for her and on her behalf. That is my responsibility.

Tears fall for the person she is now and the person I miss so deeply, especially as the Christmas season comes around. I miss her and doing the things we used to do. We used to watch Little Women and I can't watch that movie now. Tears fall at Church service because she always did love hearing the kids sing. Tears fall because I can't bring her to service with me. She loved the Christmas music. Tears fall because I know God loves her so much more then I do and I pray He is singing over her. I pray He is closer to her now more then ever before. I pray that she sees Him or an angel. I pray He comforts her in a way that I can't.

I never know what the next year will bring as each year comes to an end. It is hard to believe we will be going into our 10th year on this Dementia journey. People tell me that my mom can last for 10+ more years and I think please God don't let that be. She is in a wheelchair and can no longer do much of anything for herself. No one deserves to live a long time like this. She should be healed and whole in Heaven with her loved ones who have passed already. But then, I think...no, I want to keep her here. I want to be able to see her. If I can't see her, I feel like I will lose me.

She was here for this Christmas. Merry Christmas, my sweet mom. I love you and miss you so very much.

Peace and Joy in Suffering

What a week this has been. Wow. It seems that when I get a little too comfortable with how my mom is doing, something comes up. It should not surprise me since this disease is always taking more of my mom away. But there is no way to prepare for what might come next.

I have been doing a Bible Study in 1 Peter. In the first chapter of Peter, he talks about us being distressed by various trials and that it is to strengthen our faith. There are a number of bible verses that talk about trials and suffering. I have to admit, when I am in the middle of a trial and even this week with my mom, I don't think of these in a joyful manner and it is really hard to have peace. I do still question God's purpose in this. I am not super Christian in these moments. I am super human.  I do remember that this is not the end of the story. I do remember that one day, Christ is coming back. I do remember that one day, my sweet mom will be healed and made whole again. But in the middle of suffering and trails, I have a hard time with the joy. I do wish I could just say I trust God and mean it with my whole heart. That is so very hard in the middle of trials. I keep trying. I know He won't give up on me.

It is hard to see my sweet mom changing so much. She was so scared and confused. She didn't know people are trying to help her. I felt so helpless as I watched her with her jaw locked open, trying to talk and looking scared. I was trusting the doctors at the ER to take care of her and at the same time, I am trying to make decisions that are best for her. I shed many, many tears this week. It is the only way to express what I was feeling as I watched Monday and Tuesday unfold.

I don't want her to suffer. I don't want her to be scared. I want the very best for her. But I know there will come a time for hard decisions. This life is full of hard decisions. I pray with all my heart that God gives me wisdom as I make decisions on her behalf. But this life is not easy. There is no where in the Bible that says it will be a peace of cake. I  try to remind myself that God loves her so much more than I do. He has faithfully put the right people in our path on this journey. I have great support from the staff at the nursing home.
Music is always so comforting for me. I got that from my mom. I listened to songs like Great is Thy Faithfulness, I Look to You, Be Thou My Vision, and many others that bring me so much comfort. 


 One thing that never goes away is I do ache so much for my mom. I ache for what she has lost and what I have lost. I ache for who she is now and who she was. I do pray she doesn't remember any of this past week. She was pretty cute through it all. She would smile and try to talk, even with her jaw locked open. I am grateful that through all of this, she is so sweet. I pray all the time that she see angels at night when she sleeps. I pray they dance and sing over her. I pray that maybe I bring her a little comfort when I am there and she does not feel alone. 

Progression

In most normal settings in life, progression is a good thing. In dementia, it is a dreaded word. It is also inevitable. No amount of drugs can stop the progression. It also means grief. Each step of the progression takes my mom further away from me. It brings more bad days than good. It brings more agitation. It brings questions like how much longer do I have with her? When will she completely stop talking? Will she get to the point where she can't shallow her food?

Right now, we are trying to manage what we think is pain. Whether it is pain from her hand, pain from sitting in a wheelchair for so long or pain else where?! She can't really tell you where the pain is. So, it is trial and error to see what helps. The pain seems to bring agitation. If it is not pain, it is just agitation that comes with this awful disease.

There are times when I sit there looking at her and think, you don't deserve this. The staff is so wonderful, but I know she must get tired of them having to do everything for her. I thank God that she isn't fully aware of what is going on because how embarrassed she would be. They treat her with dignity, but you are not supposed to wear diapers when you are not a baby. I think deep down, she knows. She knows this isn't how she is supposed to be. But she is stuck.

The memories of how she used to be are fading. How do I hold onto them? I need to write them down. Sometimes, I can close my eyes and see our old house, see her when she was healthy and whole. It seems like another life. I want to hold onto those memories, but they feel like they are slipping from me. Soon they will be all I have left. I wish for just a few minutes I could look at her and see how she used to be. Maybe just a glimmer in her eyes. This is not how life was to be. I was supposed to have her longer. She was my friend and my mom. She was my example of an amazing faith. I want her back so bad. I want her back here on earth and not have to wait until Heaven.

I do find myself praying that God takes her before she gets really bad. I don't want to watch her go through the last stages of this awful disease. I don't want to see her when she just lays in bed. Maybe God is getting me ready as I watch her progress. Maybe all this pain I feel, is Him getting me ready and getting me to the point, when I say okay You can have her. Not that He needs my permission. But maybe He is just giving me time to get there. Of course, I don't think I will fully get there. A part of me will always want her here.

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.