"Where is the silver lining in this destructive disease of Alzheimer's?"
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| Christmas Day 2012 |
I have been asking myself this question every single day for the past month. I have also been writing this post for a month. Every time I start to press the "post" button something changes in my Dad's illness and I have to start all over again.
Why am I asking this question this past month? Why have I been asking myself this question for the past 3 years? I ask it because the journey of the "long goodbye" becomes tougher as time passes. Step downs you mourned so much a year ago are of the past. Things you were so grateful to have with your loved one a year ago are now the losses of today. It is an incredible journey my brother and I are walking with our hero. Amazingly painful. Amazingly bittersweet. Incredibly special too. It's sorrow and love, laughter and tears all mixed up into one. We are the by standers at times watching, unable to stop the losses dementia brings. Our family and friends are the prayer warriors as well, praying for Dad through it all. We are the cheerleaders. We are the optimists and the realists.
We are family.
I've realized just in the past two weeks that Tom, my brother and I are truly double grieving at this point. We mourn the loss of Mom. Seven months only seems like yesterday. Now we mourn Dad more than ever. One parent is alive. One parent has passed on. I've learned so much about grief the past 7 months. I've been doing a lot of listening and reading. When I feel like I'm losing my mind at times or am just not connecting to people, or find myself annoyed, exhausted or full of tears
again, I realize this is totally normal. This is my journey of grief. It is a season. Sometimes for me the past three years seem like ten. The Holy Spirit comforts me when no one else can. The prayers of my dearest family and friends comfort me. The realness of my brother's and my relationship and his ability to understand my feelings is such a comfort to me as well. We are finishing each others thoughts lately. I am so grateful for my big brother!! I don't know where I'd be in this process without him by my side.
My husband, Mike is there for me. He does not fully understand how this all feels with losing parents, but he tries so hard to understand and he is the best listener on the planet. He loves Dad. He loved my mother so very much too.
This journey of loss has its incredibly lonely moments. Just when I feel alone, God provides. Someone calls me. Tom texts me. I receive a card in the mail, a sweet email or note on my facebook page, a hug or kiss from my husband, or an "I love you" from one of my sons and I realize I am not alone, no matter how lonely I may feel. What I am noticing though as time goes by and this drags out is that less and less people truly know what to say to you. What can you say? Sometimes there are no words. I don't even have them.
Our new step down with Dad:
The plateau from January of last year has ended for now. The step down currently is quite noticeable to us. To me it is huge, compared to other step downs he's had. It's hard to compare the severity of this one to others he's had, but we are now at the point where we never wanted to be. My daddy is starting to forget me, as his daughter as the "new normal". He knows I'm family. He knows he loves me. He recognizes Tom every visit and says his name and "son". I am SO incredibly thankful for this. If Dad were to forget both of us at the same time, it would be more than I could bear. My brother said the most thoughtful thing to me the other night in a text. He knows how much it hurts to have Dad begin to forget who I am. He knows how he would feel. Big brother hurts for his little sister. He told me, "I am not ready to accept Dad cannot remember you." Just hearing those words were so special to me. I am trying to be realistic. I am trying to accept this. Yet deep down I know I will always love those moments when Dad says, "Judith" or Dad says, "That's my daughter." One day I may still hear those words. Right now the words ebb and flow.
This entire step down started with a respiratory virus which caused most of this change in his ability to function day to day (the loss of his ability to walk, feed himself, stand up on his own etc.) He was doing all of those things one day and then 24 hours later they stopped. It was the most bizarre thing. Dad is bouncing back physically with standing alone, doing a little walking and feeding himself again. It has taken a month to even get to where he is now. His legs are still not strong enough to walk with his walker 100% of the time. I'm praying we get there. The part I do not see bouncing back completely is his cognition level. We are still in "wait and see" mode. However, when I told the director of Memory Care that my dad was not the same as he was at Christmas she replied so gracefully and compassionately as she could, "No, he's not."
There is a factor I am convinced of with all my heart that is speeding up this decline in Dad.
Simply put, it is grief. My dad misses his bride so much but I don't think he can express it well due to his illness. His grief and feelings of loss are coming out in other ways.
The reason I'm so convinced of this is that after talking with one of the nurse's aids one day a month ago, I told her I thought Dad missed my mother. She told me it was interesting I said that, because earlier on the day Dad bumped his head and all of this decline started, he was walking around the living room area on his floor asking where Mom was. He was looking for her! I was SO appreciative she shared this with me. If Dad was looking for Mom in the morning, was he looking for her in the middle of the night too when he bumped his head? What was he thinking?
We have hardly heard him mention her in the past 6 months. The staff has not either, but a few occasions. We know he has not forgotten her though and we never thought he would. It was just the question of "when" would she come to mind? How would he react to those thoughts?
59 years of marriage to the love of his life.... you cannot deny the love that is there.
My big question remains, " What does grief look like to a husband with dementia who has lost his bride?"
I have been researching this and there is not a lot written out there about it. I know it has to be a huge question for family members who are helping a grieving parent through Alzheimer's. How do you help someone in this mental state? What I've learned from reading about this subject is that we are doing all of the right things so far. We do not mention Mom. We do not put Dad through that impact of hearing of her death like it is the first time, over and over again. If he ever asks me one day where she is, I have an answer. I will tell him she is resting. It is something she used to always do. She loved her naps! To me it is not a lie either. It is truth. She is resting in the Lord's presence daily. I cannot think of a better way of describing where she is to Dad.
One staff member told me that the holidays are often more difficult for residents with dementia who have lost their spouse. This change in Dad has all happened around the holidays too. I just have to wonder if something didn't spark his memory and grief took hold of him for a time. My brother wonders if Dad has given up a bit, because Mom is no longer there. She was a BIG, bright, shining light in Dad's every day life. She made everything better. There was no one on this earth he loved more than Mom. There is no substitute for her love. He does not have it physically with him day to day in battling this confusing disease of dementia.
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| 2009 |
There are no guarantees that he will bounce back to where he was before on Christmas Day. We are still in "let's be patient, heal, and regain strength mode". Being patient and waiting is difficult at times. It has been a bit of a roller coaster ride for Tom and I, with this back and forth of hope and discouragement. Just when we think he had turned a corner, we take another 2 steps back to where we were before. There is a lot of inconsistency these days in what he is able to do day to day. However the walking is slowly coming back.
We have a physical therapist, Beth, in our corner who loves Dad. She has seen him from day 1 at the retirement community and has seen the entire 3 year decline. She remembers when he had no walker. She remembers when he originally moved into Assisted Living and would walk over to see Mom every single day in the Healthcare building. She remembers the water therapy in the retirement community pool and how he wowed her with his free style one day. What a comfort to have someone who knows Dad like this, in our corner! I cannot tell you what a comfort this consistency in relationship is. She remembers his joking and fun personality. When I talked with her on the phone about his step downs and inability to walk even 2 weeks ago, she got choked up and told me she did not like seeing Dad the way he was. She is going to do everything she possibly can to get him stronger and walking again as the norm. He remains in the wheel chair for the most part, but those legs will hopefully regain their strength.
Dad has so many routing for him. The staff is wonderful. They are all so positive. They all tell us he is getting back to what he was before. Tom and I still see step downs, but we are family and we are intuitive about things they may not be. They see him every day though, for several hours a day and they know his abilities well.
I'm just thankful he has such a wonderful team of people around him. He is not alone in Memory Care. There are people around him all the time. Other residents and loving staff.
I do know one thing, my Dad would never want to be in the state he is now with Alzheimer's.
The man who always wanted to stay young! The man who always is so full of life, loves life and has such an appreciation for the life God has given him! Never in a million years would he want to be in a wheelchair, not remembering his family's names and needing such assistance to function day to day. His current state is so "not him" and I think this is one reason it is so hard to watch these step downs.
How many times has Dad told me in the past two years when seeing residents in my mother's building who were wheel chair bound not able to function well,
"Honey, if I ever get like that please make me as comfortable as possible." Those words are so loud and clear in my head these days. "Daddy, you know Tom and I will not let you down. Anything you need Daddy, we will do whatever we can to provide it for you." Last week we swapped out his and Mom's bed of 50+ years for a hospital bed so he could be more comfortable. He has not noticed the difference in his bed.
"Can't we get pillows for some of these folks? They look so uncomfortable!" he'd ask me, when looking at some of the wheelchair bound residents in Mom's building. If there had been a box of pillows I think he would have gone around to every resident who he thought was uncomfortable and put a pillow under their head. He called me on the phone one time asking me to ask the nurses if they could do something about this issue of making residents comfortable. He was incredibly serious. He wanted to help, but even with his dementia then, he didn't know how he could help.
Compassion. My dad has always been FULL of compassion.
So the past month, I'm looking at my dad and I'm wondering.....
Where is the silver lining in this decline since Christmas?
Where?
I have to know.... I've been asking the Lord to show me what in the world can I be thankful for? I have to be thankful for something. I think my heart would completely break if there was nothing to be thankful for.
A few weeks ago,
I received an answer to that question and prayer. After my dad had had 2 different trips to the ER back to back for tests to check out that bumped head and dementia changes, when Tom and I were so concerned about him, had so many unanswered questions, and the changes were happening so fast and furious....
...I clearly realized the silver lining in all of this is love.
But how can this be? Where is love in this horrible disease? Does God love my Dad? Where is God in all of this anyway? Why God why? Why my dad?
Oh, I've been there so many times... I've asked myself all of these questions along the past 3 year journey. God has answered many of my questions and whispered many things in my heart to comfort me. He has given me signs of hope, signs of comfort that YES, He DOES LOVE my Daddy with an everlasting LOVE! No, He did not cause this disease to take place in my dad's life. It hurts Him too, because He never intended for diseases such as Alzheimer's to be in the original world He created. The precious part of this is that the Lord already knows how Dad's story will end. He knows the place which awaits Dad in heaven. He is the one who prepared it for him long ago! There is hope for the future beyond this present earth! I am hanging onto that hope with every bit of strength I have. When I look at Dad, I know he is heaven bound I don't have to fear that he is gone forever. We will see each other again, just not here on this present earth as it is, but there will come a day when we will see each other and we will know one another as always. I know Dad wants to be with Mom again. He will be reunited with her too! This is a great comfort to me, this hope of heaven that Jesus has promised us! The further Dad walks on this journey of Alzheimer's, the closer he gets to heaven. Sadly, he is just losing himself and all of his memories along the way. This is where our grief comes in so intensely.
Let me give you a physical example of the silver lining of love in our lives....
Three weeks ago, when Dad was at his worst, I asked him if he knew who I was. He said with a smile, "No". I told him I was his little girl and he had a bigger smile. Then I told him my name and I was his daughter. Then it clicked and the light went on. He knew who I was after that. He was laying there in his bed resting. He could not sit up by himself. He had a small temperature due to the respiratory virus he was fighting. He was tired. I wanted him to rest. I got him some grape juice and he drank the entire contents of the glass. He felt so much better after that. I talked to him some. He wondered what to do with his arm that didn't seem comfortable. I grabbed his hand and kissed it and said it would be ok if he laid it back down on his chest.
He tried to talk to me and was smiling the entire time he was communicating, looking into my eyes. I was trying to make sense of what he was saying, but could not. I just had to smile back. When I told him I loved him, he said, "Thank you."
I had to go pick up my older son from a friend's house a bit later and had to go. I didn't want to leave him there awake in his room with no one to be there with him. Mom is gone. No one was there to give him the TLC he has been used to for so long. He couldn't do anything for himself in that bed but blow his nose and fiddle with the kleenex in his hand. (His hands are shaking with tremors so much now a days.) I told Dad I had to leave to get the boys. He understood what I was saying. "Ok", he said. I told him I'd be back later. "All right", he agreed. I waved goodbye to him and he actually waved back and smiled at me. Then, I had to close the door. Ouch. That hurt to do that. I wanted to stay with him and yet my life was once again calling me away. The comfort and regret I felt in those moments stemmed from the fact that I know my dad loves me.
Where is the silver lining? I had to ask myself after his door closed, while I walked to the elevator, while I rode it down, then walking to my car...
So many tears that week. So many tears.
In the car, on that day, the Lord told me, the silver lining was LOVE.
When all else is fleeting, the flesh is failing, and our loved one is slipping away from us before our very eyes, love remains. God's love remains and our love for each other remains.
Three Sundays ago, when my brother Tom and I went to visit him, we walked into his room. He was laying down in the bed resting. He saw Tom first. There was no "Hi Tom!" He saw me next. There was no salutation, "Hi Judith!"
Do you know how our Dad greeted us with a big smile on his face?
"I love you, son! I love you, honey!"
Do you see the silver lining?
I see my dad's love, but I see something else too. When my Dad tells me he loves me, it is like God is telling me as His child, that He loves me too in this difficult journey. I didn't forget you, Judith! I didn't forget you, Tom! I didn't forget you most of all, Joe. Oh to have a heavenly Father all my life who loves me! Oh to have that heavenly example in an earthly father!
My daddy still expresses his love for us
each time we're together.
"I love you, little man", he told Philip on this day. He remembered his nickname for Philip even if he didn't remember Philip's actual name.
This is such a gift! There is no greater gift Dad could give us than his love. Of all of the things that this disease could strip from my Dad, it has not stripped what goes deepest apparently, which is his love of his family. We are God's family too. God doesn't want us to forget he loves us as His family.
And I can STILL show my Dad LOVE. I can still love him even when one day he may physically not be able to hug me, or tell me he loves me. Selfishly I'm praying that day NEVER comes. He is already forgetting our names and specifically who we are at times.
We KNOW he loves us and always has from day one. I hang on to that.
The silver lining in my Daddy's Alzheimer's illness..... is LOVE.
Thank you Lord for that love.... keep us strong. Even if I have to cry sometimes and my heart just plain hurts from grieving his condition. Thank you, Lord, for LOVE. Your love and Your love which flows through us. Lord, please have mercy on my dad.
I'm still hanging on to the hope he will walk again on a regular basis. Please continue to keep him and us in your prayers. There are strong indications he will bounce back. I AM NOT GIVING UP HOPE YET!
I'm trying to look beyond the wheelchair, the lift and the hospital bed, yet all of those things are to make him as comfortable as possible. We will do whatever he needs.
The silver lining keeps me going. I hang onto the silver lining of God's love with all of my might. I hang on to my dad's precious "I love yous" too because they are such a comfort. My brother's arm may be black and blue from me holding on to it through the journey, but what a blessing to not have to walk this alone!
