The pace begins to slow

Recently my daughter and I went on a whirlwind tour of Kankakee, IL and then up to my parents house for our shared birthday weekend. (There was a concert by Gungor in Kankakee :) We had a great relaxed day with my Dad and visited Willow Creek community church in Barrington that evening. My daughter had never been to a mega-church and they are definitely the definition of a mega-church. I must say, it was pretty outstanding!

I have often brought home my oldest daughter who has always had a special connection to my mother. My oldest is very outgoing and just seemed to take Alzheimer's in stride as my mother deteriorated. She was also able to offer my mom the physical touch I knew she craved, but I simply could not provide. My mother's touch has always been hard for me. She just seemed to always be attempting to steal something from me when she hugged me. However, since she became vacant, I can hug her now. The feeling of being controlled is gone. In fact when I hug her now I usually tell her it's ok to go home now. I look forward to our time together in heaven and meeting the woman she was created to be.

But my second daughter is me in so many ways. We scare each other sometimes at how much we have in common. So this seemed to be much harder on her heart than my oldest. On this visit, my mother's pace had significantly slowed. She did not wander as much and she had trouble moving from one place to the next. She slept more and we saw no smiles. For me this is just a very slow and painful progression until the end. For my second however, this was abrupt. She was very overwhelmed and slept quite a bit herself. But what do you say? How do you help them? I hugged her and we cried together. What else was there to do? There are no Christian bumper stickers that heal this wound or put a happy face on it.

My pain is one thing, but then you have to manage your kids pain as well. My one hope is they see my love for my family, despite my years of anger and they realize that God changes lives and uses everything in our lives to draw us to himself. Blessings and suffering are used in the same way by God to humble us and care for us. This is very counter culture for us as Americans, even American christians.

Somewhere in here, over the many sad and difficult years, God gave us the gift of suffering. Only now do we see it's beauty.

What is death?

When I come to visit now, mom has no idea who I am anymore. It is over. For my last 3 visits, there has not even been a moment when she seems to know who I am. Why does that hurt so much?

We all saw it coming. The literature is very clear that this is how the disease progresses. I can do the emotional math and yet I cannot get my heart to stop yearning. This may be the ultimate pain of a mental disease. They are still alive but you can not gain access to them anymore. Death has to be redefined. She is alive. She is in pretty good health. Our caregivers really enjoy her and she seems to enjoy them. She eats better than I do!

But she wanders. Sometimes she wanders with a little smile on her face like she knows something the rest of us don't and she's not sharing. Other times, she just wanders like she has lost something that will never be found no matter how long she looks. When she sits, she stares off into a place none of us can see. When she looks at me, she is vacant.

So is my mother alive or dead? I have no idea. I can't even define the most basic words of life anymore. I grieve but I'm not sure what for. I miss her even though she is standing right here.

I am, however, thankful that my anger seems to be gone. Somehow without talking to her, I've garnered a greater understanding of what life was probably like for her and why she was the mom she was. It has created a great compassion in me that has pushed out the anger that used to live here. I am grateful for that.

This weekend I came to visit and my Dad was sick. He seemed to start getting better as soon as I walked in the door. Maybe it was the antibiotics, but maybe hope and companionship are really the best medicine.

When I pray, all I have is "jesus". I am completely confused about all of it now, so I just pray "jesus" and hope he will fill in the rest.

I grieve when I come, but it is not without hope anymore. For many years it was just completely overwhelming and now its not so bad and my Dad, brother and I are closer than ever before.

How did God do that? No idea.

Jade

My father lost his dog last month. It was a heart breaking time for all of us. What an amazing dog she was! I really don't know how my father would have gotten through these years of mom's disease without Jade. She brought so much joy to Him as his "big boofer dog" and she ran like clock work in a world of chaos. She had a schedule in her head and she made sure everyone stayed on schedule. Up in the morning, snacks, and bathroom runs were around the same time everyday. No matter what was going on. As mom's memory faded she knew how to coax mom into more snacks as well. She was a true friend and a little fat at the end from all the extra snacks.

But she was also the safe companion my father needed to walk with him through all the madness of Alzhiemers. She never judged my Dad or gave him advice on how to proceed. Surprisingly she was a rather talkative dog in that my Dad supplied a running dialog with her as if he could read her thoughts. I suppose it is how the introverted create company without having to pick up the phone.

I have always had a lot of thoughts about what we need to do or think about for the future or fix about the present. My Dad has been gracious to listen and implement some of those things. But what he has really needed is a travel buddy and Jade did that for him. It was a big loss for him. We all felt it and my brother helped my Dad bury her behind the barn in the cold ground of winter.

As I've kept my eye on the situation at home, I've been looking for signs of depression from my Dad. But amazingly he seems to be doing well. After a dog dies in our family, I always hear the speech about how that was the last dog and how my father's heart couldn't handle another dog. But eventually another dog always shows up. So far no dog and Dad seems to be doing ok and spring is almost here. So I don't know if Dad is just in a better place or Jade just did her job really well, but we are all beginning to feel hope again. It feels like sunshine.

An ever changing reality

I'm getting ready to head back home after spending the labor day weekend here with my folks. Thankfully, my brother has been in and out which always adds laughter to this sad house. My father continues to amaze me and is always so thankful for my just being here. It relieves his stress level just to have me around. I honestly feel like I do nothing here. My dad loves to cook for me when I come and on this trip I was nursing a foot injury so I needed to just chill.

But I feel such an overwhelming blanket of sorrow when I am here. My mother has moments when she looks at me and tells me she loves me, but then she disappears again. She tried to eat a stapler at dinner the other night. It feels just like raising my toddlers so many years ago, but with no joy. When a child learns you rejoice with them, but this is so painful to watch. Her days are full of just wandering around.

My father needs daily help now and he is committed to getting continual help. It is a strange relationship with caregivers. They become like family and you need to trust them, but you are also their employer. It makes for a complicated relationship. My main concern now for my dad is his skin condition. He is wearing his stress, but he keeps looking to God to just help him here and now. My dad is truly modeling the verse "Do not worry about tomorrow for today has enough trouble of its own."

One genius move on my Dad's part has been to buy a new golf cart. It is really nice and my mom loves to ride in it. It also helps my dad look for her quickly when she wanders away. I rode her around in the cool fall air for 2 hours yesterday. I just started talking about my life and occasionally she had a reaction. It really wasn't too bad. There is never complete clarity, but the fog clears enough for some sort of connection for just a moment. I do not expect those moments anymore, but they still come once in awhile.

But every morning the house smells like pee and poop. She has lost most all control of that area. When my kids were little, I often walked in to greet them with the same smell in the air and it did not gross me out as their mother. I often spoke tenderly to my kids and was even proud of their big diapers. But turn that around with a daughter to a mother and something in my heart is crushed with sadness. I keep telling myself to move on and let it go, but I feel so stuck. That is not a helpful thought and it only causes me to feel worse about feeling bad.

Perhaps this is just my weakness. I move slowly through pain. I need more time to grieve and entrust things to God than others. I can see other areas of my life where this is true. I think people call this Grace. Giving myself grace to just be here and not demand I be somewhere else now. No one is driving me but me. Everyone I know has nothing but compassion for me and my family. Alzheimers is so cruel.

Every day is different for my Dad. Mom had some anger the other day with a caregiver and her sleep has been spotty, but as soon as a pattern emerges, it changes. I still don't really even know how to pray, other than "Jesus". I don't have a clue what is best anymore. Perhaps I never really did.

So come Lord Jesus come and fill up this place. Hold my hand for I am sad and overwhelmed today.

Mother's Day without a Mother

My mom is still alive, but I have no mother. There was no one to call today or send a card to because she doesn't know what a phone or card is anymore. So on one hand I enjoyed the acts of service my children did for me today, but I may have enjoyed just laying in bed watching TV with my husband more. I did not have much energy today, but I didn't want to be alone either.

Grieving for the dead while they are still alive is hard on a heart. There aren't as many tears anymore, but it's easy to just avoid calling home too. Out of sight, out of mine is not entirely true but it helps.

I suppose there are millions of women that live in this reality. Several of my friends have lost children and mothers, so Mother's Day is always bittersweet at best. I know the intention of the day is to honor mom's because we do so much behind the scenes. (Oh, that is so true!) But there is this whole other group of women who have a mother and yet the relationship is broken. A friend of mine years ago suggested that Hallmark begin a collection of cards that actually tell the truth about many parent/child relationships. Cards that say "Nice try, but I will take it from here." or "I'm really hoping to be able to say I love you before you die." I'm not sure they would sell, but they would validate the broken hearts of millions of people.

However, I am extremely grateful for the years of healing that has allowed me to show kindness to my mother now. I still have limitations, but I am amazed how much love is in my heart for my mom. I did not believe that would ever happen and yet God has done it. I think he enjoys the challenge of fixing the impossible. For many years that is what it felt like. Impossible.

But this poses a different challenge. Grief with no closure. I can think of a number of situations that would generate the same feelings. The abduction of a child or the death of soldier without ever reclaiming the body might feel like endless grief. Our grief, however, will end at some point. We just don't know when or how. It is a terrible feeling that weighs on your heart and consumes your energy without even realizing it.

In the meantime, we are all starting to think about life after Alzheimer's. My father's health is always a bit on the edge. But I can hear it in his voice. He is turning the corner and starting to look around him at what comes next. Honestly, I am afraid to do that yet. "Hope deferred makes the heart grow sick." Alzheimer's seems like a recipe for a sick heart.

The other day, I asked some friends of mine to pray my mother would die soon. It felt freeing and terrible all at the same time. A couple of days later, I called home and my Dad said my Mom kept leaving the house and running into the street. I don't even know what that feeling is. It's probably a long list of feelings that all add up to overwhelming. But who does not feel overwhelmed by Alzheimer's?

So today is mother's day. If I look behind me, I am sad and hopeless thinking about my mother's prison, but if I look in front of me, I am proud and hopeful for the amazing kids I see before me.

Lord Jesus help me live in the balance but please bring peace to my mother soon. Amen

Beautiful, broken love

This week my brother got out of jail. It was a good day.

For some, a 3 month stint in county lock up is really not that big of a deal. But you should have seen him before he went in. He was scared. He was scared my mom might die while he was in. He was scared he might do something stupid and turn 3 months into a year or worse and he was scared that no one would be around to make my dad laugh. I love that about my brother. He is a really funny guy, but it's humor that has attempted to guard a tender heart.

This week my father gave us a large sum of money to help us out of a financial crisis we made with our own hands. That would have been enough of a blessing in itself, but he did it with tremendous grace and kindness. It reminded me of Jesus talking to the woman caught in adultery. He does not condemn her, but rather he protects her from the angry mob and yet encourages her to go and sin no more. As John 1:14 says, Jesus was full of grace and truth. My father did that for us this week and the blessing of his words and deeds may have healed a part of my husband's heart that few people will ever even see.

It was a good week.

And all the while, my mother wanders our home lost in some far away world. She can't sit still for more than a few minutes before she is up again moving things from here to there or trying to eat a styrofoam cup. Oh how we all long for peace to come for her. The helplessness is so overwhelming at times. And yet, both my brother and I sit in awe of my father. Not just for his patience, endurance and faithfulness but for how this is transforming him into a new man: a good, kind, thoughtful man with a generous heart.

Somehow in the midst of this intense sadness, we are all being transformed for good. I have no idea how God is doing it, but the evidence is all around me.

I heard a teacher say recently that suffering gives us a platform for influence. I've thought about it many times. I suppose that does not assume it will always be a positive influence, but I certainly can see biblical examples of the transforming power of suffering in God's word. Joseph comes to mind for most people. He was a talented, gifted, arrogant and probably spoiled kid, but after many years of unjust suffering, God transformed him into a talented, gifted and humble man who literally saves the nation of Israel along with Egypt. Nelson Mandela's story is very similar.

I don't know what God has waiting for all of us in my family. My father says he lives day to day because that is all he can do. He considers each day a gift. But no matter how this plays out, I am so thankful for the richness of our relationships right now, despite the pain.

Given the choice, I would never have agreed to this plan. Alzheimer's completely sucks. Our hardest moments of the journey so far have been when my mom would just start cowering, for any number of reasons, and say to us "Are you going to throw me away?" What the hell happened to that woman as a child? What did they do to her? It would make us all crazy with anger and rage at the invisible perpetrators and our sense of powerlessness would go that much deeper. But here we sit, with no clear end in site, having endured a very intense war, where we lost one but found the 3 of us.

I did know my mother well enough to know that she would have been willing to endure this if only for our sake. At some level we all live selfish lives, some more than others, but in her own way she did attempt to love us.

One night many years ago, I challenged my mother in front of my father, as to why she would not take care of herself. Her cholesterol was insane and her diabetes was not being treated and she would not slow down enough to do anything about them. After pressing her a couple of times, she finally admitted that there was not enough money for both my mom and dad to retire, so she planned on dying first and letting him have the retirement money. My father and I sat there stunned. We both tried to speak to that lie, but we did not sway her and she has carried out her plan. But that was my mother's way of loving us. That was so messed up on so many levels, but behind it all, was love.

It's not the way I intend to love my kids and it's a severely broken form of love, but I can still call it love. And even in all its messiness and brokenness, God has used it for good. Sounds a little like Joseph doesn't it?

So I sit in awe of God somedays. And somedays I weep over watching the woman I call mom slowly disintegrate. Other days are filled with laughter and joy as my father and brother and I enjoy each other just because we are enjoyable people. I don't know when that happened. I don't know when I became enjoyable and when I started really enjoying my family, but I like it. Those are good days.

And perhaps there are many good days ahead of us. But hope can feel like jumping off a cliff when all you've ever done is survive. So this week, I will spend time with Jesus in the Smoky Mountains and meditate on God's tenderness and kindness and try to make some room in my life for hope.

Perhaps this will be a good week too.

Updates

I've started to hate the question "How is your mom?" I know it's usually asked with a compassionate heart that desires to come along side me in my pain. Occasionally, I do get the question from someone who is just looking for information and I am surprised and convicted by how bad that feels. I know I've done it to others, so I try not to be harsh, but I also don't feel the need to always answer their question. Sometimes, I even just steer clear of those folks, because it only adds to my pain. Thankfully, I've given myself permission to do that now.

But how do you answer this question when the answer is always going to be "Bad." My mother is doing bad. She is dying. She may die soon or she may linger on in this ghostly state for years. But she is not well nor is she ever going to be well again. So I am debating asking my friends to just not ask me anymore. To trust me that I will bring it up if I need to talk but that the question just hurts now and the answer will not change anymore.

I know they ask because they care, but can caring look like not asking? Just be with me now. I'm so tired of talking. Just sit in this room and be with me. There's nothing else to figure out. Just wait with me so I don't have to wait alone. That's really all my heart needs right now.