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.

Life Lessons

I sent my parents an edible flower arrangement for Easter this year. It seemed like a good idea because my mom eats a lot of fruit and as much as I love flowers, I am still a pretty practical person. My Dad said they both loved them. He appreciated it and she ate them.

But that is one of the tolls this takes on you. When a person disappears into this disease, they can't express appreciation anymore. They are a ghost that walks amongst us and when it's someone so close to you, you are constantly reminded that your service needs to be for the Lord and not to be thanked. That is really hard for me. I like to be thanked. I struggle with feeling unappreciated. But I also see that when I am thanked, I don't really let it sink in, so it's like dying of thirst while people are offering you things to drink.

I see the lessons from the Lord all the time as I wander through this season of life. Perhaps everyone hits this place where life starts to slow down some and you wake up to this deeper narrative that's been going on the entire time without you realizing it.

I am very present. I am not a ghost like my mother and yet I withhold praise from the people around me even when I know they desperately need it. Less than a year ago, my mother would endlessly praise me for my kids, my voice, by parenting, whatever. It went on and on because she would not remember one comment to the next what she just said. I have to admit, it felt good. I don't remember much praise when I was little. In fact I remember a lot of criticism. I am painfully aware of maintaining a good balance of input and praise with my own kids because I know the pain of an over-critical home.

But what about all the other people in my life? I praise my father all the time. I am so in awe of what he is doing and the attitude he does it with is even more impressive. But what about my husband? I have high expectations for him and that can spur him on or beat him down depending on how I approach it. Of course at the end of the day, he makes his own decisions but I know I am not irrelevant to the picture. I am his wife, no one else. He has the same opportunity with me. My hope is that we are slowly moving in the right direction of doing a better job caring for each other.

So this is one area for me that has emerged in watching and experiencing Alzheimer's ravage our lives. I am continually amazed at how God uses everything. How can he break my heart and mend it at the same time? I suppose that's what makes Him God and me just me.

I will listen today for your voice Jesus. I believe you are always doing me good even when I may not be able to see it or feel it. Increase my faith and hold me near and please be merciful to my mom.

Waiting on the Lord

I told someone the other day I was going home to see my Dad and visit my brother in jail. I didn't really notice that I had omitted my Mother from the picture. But the truth is she is gone. She has extremely brief moments of some level of joy but 95% of life now is just wandering the house moving things around like a curious 2 year old but absent of understanding. She can't use utensils or the bathroom or really even understand what you are saying. You have to physically move her by taking her hand and all of it hurts your heart.

She fell twice yesterday. It's so unsettling to watch a grown woman fall down. But it feels like "pick your poison" to watch her just wander aimlessly as well. Some days she eats other days not so much.

I always believed my Dad could be a hero if he just tried. Now I see it and he is my hero. Somehow he believes this is the most important thing he can do with his life. I am continually amazed at his patience and kindness to my mother. This is pretty much all he can do. It takes up most all of his time. But he is asking for help because he is also starting to realize the toll the stress is taking on his health. How do you have time to grieve the loss of someone you are also caring for? I can't really see that part of my dad so I am encouraging him to pursue a support group to at least start the process.

It's so beyond us. We don't even know what to pray other than "Lord please have mercy." I don't even pretend to know what mercy looks like anymore.

I see God's blessings all around us and know we are in his hands. Little things like the 8 cardinals, 2 dozen full size turkeys and endless little sparrows and squirrels that visit my father's bird feeders in the fresh blanket of snow. It's just beautiful and right outside the window of this house of tragedy. There are several people involved and each offer's a different kindness. We are not alone in this and yet you are in your deep heart.

I keep asking myself, "Why is it so hard?". All I have is it is hard because it is hard. I hate that answer, but it's probably accurate. But life continues. Children need help with homework and rides and have meetings to attend and need your attention and care too. You still need to go to work, love your husband, feed the dog, go shopping and clean the house.

But today I will just soak in God's word and listen to the same song probably about 100 times (literally) that will remind me of God's faithfulness and care for my heart and encourage me to be still and wait patiently upon the Lord.