Grandpa's Alzheimer's "Groundhog Day" Moment

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I don't have the time or energy to capture all of our family's fun and important memories anymore. That makes me feel a little sad and guilty. My kids are also bigger and I feel like talking about some of the important events going on in our family is an invasion of their privacy. I've been trying to compensate by making these little Chatbooks, which are mainly compilations of comments and pictures that I've taken with my phone. It's not as good as what I used to do, but it is something.

The biggest thought I've had lately is one I can't stuff into a little photo book. It's more an ache that I try to subdue with faith than a thought, really. We're losing Bill, or we've already lost most of him. He's still here - alive, and still has his same old mannerisms and the same face that I love, but he eats cheese now. He's always hated cheese, and refused to eat it, but now he eats it on a sandwich and doesn't know that this is new.

And it's more than that.

He's lost in a world of paranoia inside a chasm of incredibly deep confusion which he will never climb out of. He's only 68 but he doesn't know who we are anymore and lives only in the moment. His world is like the movie "Groundhog Day" where the main character lives the same day over and over again only in his world he's living the same moment over and over again, and it's not a pleasant one. The moment he lives in perpetuity is one where he feels angry, extremely unsettled, anxious, confused and he never understands that those feelings are caused because he is sick.

His world doesn't make any sense to him. He doesn't make sense anymore. He can talk but he strings together words that never make a point. He doesn't know what has happened prior to that moment or have any context for what will happen next and so he can never be comforted or settled. It's a terrible way to live. I thought Alzheimer's was blissful unawareness but his experience has been so different than that. There's no bliss and he is very aware that he feels terrible. So then comes the faith. I know he won't always live like this.

Is it a terrible thing to look forward to death? That's the only peace he will have and until then it is just enduring. It's so hard to watch someone I love suffer.

We all mourn the loss of him even though he is still physically here. I heard one of my kids correct themselves last night when they asked to go to "Grandpa and Grandmas's house" and instead changed it to just "Grandma's house". It's just Grandma's house now. Grandpa will never go home ever again. Grandpa will never be at his Easter Egg hunt, or Thanksgiving dinner, or there to watch us all open his Christmas presents. He'll never go to another one of my children's school programs, piano recitals or soccer games. That hurts. We miss Grandpa and I miss my wise father in law who we could turn to for advice about the problems we have. Chris and I used to confide in him. Bill was always there with a solution and his toolbox. I am missing one of my favorite persons.

He's living in a different care center now than the one we put him in last September. It's a temporary place with a psychiatrist who is adjusting his medicines to help him become more mentally and emotionally stable. We're hoping that it will be possible for him to return to the nearby care center. We feel so much concern for him every day and now, more than ever, the only thing we can really do for him is pray. We pray for him to feel comforted and for him to be strengthened to be able to endure. We pray for his caregivers and for his doctors that they can find the right combination of medicines to help him be as comfortable as possible. And then we wait.

Sometimes Life Hurts

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My family and I have been growing a lot in the past week and a half and it has not been comfortable, although there have been quite a few sweet and even sacred moments that have been very special to us. Four days ago my wonderful Father-In-Law Bill moved into a Memory Care Center. Our hearts are all broken, including his, that Alzheimer's has done this to him. His new home is blessedly only 4 minutes away from my house by car and Chris and I, I by myself, and the kids and I have been able to go visit him SO many times this week. It's been a huge comfort to him AND to us.

I don't know that I have the emotional energy to sum up or tell what this has been like for our family in detail but because it has been sacred and important I don't want to forget it. So many times I have called my mom in tears craving and needing her wisdom and comfort. She's really been there for me and I've needed her so much. What a blessing it is that God sent us to parents who have lived for generations longer than we have and have experienced things we haven't. In one of those phone calls I wailed and cried and asked my mom how she was able to get through seeing her beloved father deteriorate. She told me, "Faith. It's all of the things you already know. You put your faith into action and lean on that." So that's what I have been doing. And it's helped. What a sweet and heartbreaking time it's been for all of us.

Bill has been so confused. So despondent. So paranoid. So anxious. There have also been sweet times this week. This past Sunday, the night before the big move, we all met at Bill and Bev's house for a family dinner and for Chris, Brendan, and Seth to give Bill and Bev blessings. It was one of the most sacred moments of my life. As I knelt on the ground while the blessing was given my heart was so touched. Grief, comfort, and faith in God's plan all swelled in my heart and spilled out my eyes. I hugged my Father-In-Law who "doesn't do hugs" for the very first time and told him how much I loved him and that he was the best Father-In-Law that I could ever have hoped for. And there have been times this week when I have been there for him, when no one else was able to, to comfort and try to cheer him. We've cried together and I've looked into his eyes and assured him he was strong enough to face this trial.

One night in particular after Bev had spent the entire day with him and was utterly spent and needed to go home he needed some comfort. He'd gotten confused and thought that an alarm was going off in his room, his nurse call button, and thought it meant that he was dying. Somehow he found a phone that the nurses only use in case of emergency and he called 911. He told the dispatch he thought he was dying and they immediately sent out an officer to make sure he was OK. Of course he was OK, at least his body was. His mind was racing and he was in a full panic. They called me instead of Bev by accident and the kids and I were already in the car on our way over for a visit after dinner. What a blessing! When we got there his forehead was covered in sweat and he was pacing. I convinced him to follow me up to his room and the kids knew just what to do. Max and then Marilyn took a turn each snuggled up next to him on his bed with their arms wrapped tightly around his waist. They hugged him, told him they loved him, and told him about their day. I spent some time assuring Bill with my words and by the end of the evening he was much more relaxed, less confused, and we left feeling like he'd be able to go to sleep.

Yesterday I listened to a talk given by President Eyring," Trust in That Spirit Which Leadeth to Do Good", and I felt so supported and encouraged by his counsel. I have felt the truth of his words as I've spent time with Bill this week and have been so inspired by the service Bev has given for so long. Sometimes this week I've been a little nervous about how those visits with Bill would go but I have felt His help. I have faith in President Eyring's words, "you must commit to...serve, knowing that you do not go alone. When you go to comfort and serve anyone for the Savior, He prepares the way before you." What a blessing to not just be serving someone but to be serving someone so special to me. I have felt stronger than I would be on my own. President Eyring also promised in his talk that, "The second thing you must do is remember the Lord as you go in service for Him. The Lord not only goes before our faces and sends angels to serve with us, but He also feels the comfort we give others as if we had given it to Him." What a beautiful comfort that is. I've promised Bill that angels are near to help him and I believe that with my whole heart. What an incredible comfort it is to know that the Savior is helping me too and that He is carrying my Father-in-Law. The end of that quote, the part where the Savior himself feels the comfort I'm trying to give? That's humbling.

One of the sweetest parts of the blessing given to Bill on Sunday was that he would be able to, "look back on this trial and see the blessing that it had been in his life and in the life of his family." 

Already we are feeling the grief, feeling the loss, but also enjoying that he is still Bill, is still OURS, and we are learning and growing so much.

Still Alice, Still Bill

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I started listening to the audio book version of Still Alice today and had to quit when the main character got diagnosed with early onset Alzheimer's. That's what my beloved father-in-law was diagnosed with 3 1/2 years ago. It's no fun but Bill, my FIL, IS. I love him so much.

This disease is affecting his body and brain but he is still the same person as ever - growing and learning through a trial like we all do. I love being around him and have ever since I met him 20 years ago. He's still the same man that I love. It's hard to watch as he feels the uncertainty, anxiety, depression and confusion that comes from not knowing how the pieces of what's going on around him fit together all of the time. None of that changes how I feel about him though or how much I enjoy being with him. He's special to me and no matter what happens to his body, he's still there.

I love the way he loves to reminisce and tell family stories. I love the way my husby inherited so many of his mannerisms. I love that I used to work with him and how I got to see him every day as a co-worker, and then when no one was looking he would smile at me like an under-cover father. I love his tender generosity. I love the example of how he loves his wife. I love his testimony of the Gospel. I love how fervently he loved his church mission to Germany and that I got to travel back there with him 2 years ago. I love the example he has always been to me, way before Alzheimer's, of how to tough out a hard situation and how to be OK that life isn't fair. I love his work ethic and his independence. I love watching him sidle up to my children and tell them how special he thinks they are, and then he forgets he just said it but the sentiment is still in his brain and heart and so he will say it again...and again...and again...It's the kind of thing you never get tired of hearing.

Bill inherited this yucky disease from his mother and Chris is so much like him. I worry that Chris will get it too and that doctors won't have a cure. I spiraled in a worry tornado as I listened to that book today. I found my calm center as I focused on what's most important: my faith. Faith is trusting that when those hard days come with Bill that God will give me strength. Faith is trusting that if Alzheimer's takes my cherished husband that Jesus will come to carry me and that I won't ever have to feel one feeling or go through one part of it alone. Faith is putting aside the fear to be happy for today. Today my father-in-law and husband are both here and I was lucky enough to smile at and see them both. Faith is knowing that I will someday miss my father-in-law, and maybe even husband, while I live on this earth and they don't, but that I believe with my whole heart I will be with them again - this time to never be separated and never to be sick.

My Morning's Mental Meanderings

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Last night after my children went to bed I celebrated my freedom and then almost cried. I was busy wiping their dirty hand prints off the walls and I realized that I'm half way through the work I longed and worked for years to have the privilege of doing. These children of mine are halfway raised. Ugh!

Ok. Now I'm not crying, I'm bawling.

There is nothing more in my life I'd rather do than mother. Sometimes I get so exasperated. Sometimes I get so worried. Sometimes I'll admit that I count down the years until they leave my house and are grown but most of the time I really, really love being a mother and all of the time I cherish my opportunity to spend my life serving these little ones. How they fill my heart!

Last night I tucked Noah into bed and he was so very tired that it was all he could do to barely open his lids to check I was there while he snuggled into his blankets. He asked for "fifty kisses", a sweet Noah-made tradition where we gently kiss his cheeks 50 times because one time isn't enough for my affection gobbling son. After the 50 he lifted his heavy eyelids and contentedly asked for "Just 15 more?" and when I told him I would he said with earnest endearment, "I love my Mommy."

My dear Noah, my sweetest Max, my precious Marilyn, your mother loves you too - with her whole mommy heart. How will I ever bear it when they are grown and gone? I'm dreading those years when my babies are grown and my husby isn't retired yet. I've got a very short career and nothing in this life will ever be as wonderful, as taxing, as fulfilling, and as sweet as RIGHT NOW.