Finding life in the midst of death

Christmas is upon us. In November my mother turned 71 and I asked my Dad to tell her Happy Birthday for me. What else is there now? There is no awareness of anything. Even if she looks at you, she looks through you. I never really understood the power of the eyes to communicate such an array of emotion but when someone looks through you it is heart breaking. So is everything about our current situation.

I recently went home because my father and brother both had heart attacks on the same day. Dad over exerted himself in the snow and my brother's drinking is destroying him from the inside out. But its more than that. The sadness of our seemingly never ending situation has simply taken an immense toll on all of us. Each of us is suffering in a way the others don't fully understand. My father has his own health issues, but the money is starting to run out again too. Each milestone has to be faced with hard decisions. Mom can't move anymore. She is completely dead weight and this takes a huge toll on anyone offering her care. We are very close to the bed ridden stage which becomes an endless chase after bed sores. Our caregiver did such a great job in that area, but one hospital visit and Mom came home with two large sores that just won't heal. It is all so hard to watch and understand Jesus.

During my time at home, I stayed overnight with my Mom while the boys were both in the hospital. She makes no sounds. Her days and nights are completely lost. But my Dad has one request; that she not spend the night in her mess. Food goes in and food goes out now. That's it. She can't even feed herself and she can choke on her own spit at any time. So she is fed with a syringe and everything is pudding like. So when the Lord awoke me in the middle of night I cleaned her mess. I also almost vomited and I also received the blessing of caring for a woman who spent so much of her life trying to care for me. I did it for only one night. My respect for my father and our caregiver is enormous. Very few people are willing to serve at this level even when they are being paid. Thank you.

So how do we find life while living under a shroud of death? We keep living. We cry out to Jesus and accept what He gives us as for our good. There is no understanding now. Perhaps one day there will be but maybe not. We are not trying to put a happy face on it. We are simply asking Jesus to carry us through the valley of the shadow of death. We live by faith not by sight.

This is where my heart is broken for my brother. He does not know God's goodness. He is being crushed under the weight of the shame, guilt and sadness of this horrific situation. I went home to see him in the hospital. I knew my Dad would bounce back and just needed the break. But I can't imagine doing this without Jesus. My brother is constantly in my prayers now a days. I've also encouraged my Dad to not lean on him for help. I've spoken about it before, but you don't just leave the past in a separate space when the end is near. Sometimes, it's all you can think about and it cripples you in the present. I have peace with the past. My brother does not and I don't know how anyone does without Jesus.

We all have limitations. I have 4 kids at home and my daughter was really beat up by her time in Japan. I have been needed at home this fall. I must trust God in a different way. But I can see his mercies in the midst of the tragedy. My dog traveled with me. She is a wonderful companion on my trips. I was able to do several tasks for my Dad that will keep him safer. The birds and moon were simply beautiful in the snowy landscape. These are the gifts of Jesus. They are new every morning and they care for my soul and offer life in midst of death. Lord Jesus teach us all to see you and trust you with our pain.

Come Lord Jesus Come. Please take my mother home soon.

and we wait

My last post was January of 2015 and we are still here. My daughter comes home soon from 15 months overseas and my mother is still with us. There are no words anymore. She can not stand or move. She is largely unaware of people in the room and stares into nothingness day after day.

Now my Dad and our caregivers are trying to keep up with bed sores and UTIs. Why Jesus? What are you doing and why can't she just go home now?

So we wait. I sang to her this morning and stroked her hair. I know she likes that. And I cried. So much sadness and pain.

My son came with me this time and I took my Dad and brother to a Cubs game in Milwaukee last night. Lots of laughs and a good way to celebrate my Dad's birthday.

Jesus has done other things, important things since last January as well. A deep brokenness has been healed and that's all I will say about that, but I am thankful and amazed that God did it while we have been living in the shadow of death. I do not know His ways, but I know He is good and we stand in awe in the midst of our pain.

so we wait. and we cry. and we pray,"Mercy Lord Jesus".

Come Lord Jesus Come.

Praying for death

Is it wrong to pray for death? My mother can barely walk anymore, but she eats well and occasionally you get a word out of her. But largely she sits in a wheel chair and stares off into space. I know that mobility and appetite are the final two signs before death. Her appetite is just fine, but she can fall at any moment, so the wheel chair is important. My Dad needs more help and he is getting it from good people, but you can see the toll the entire thing is taking on him; physically, emotionally, and financially. My prayer is to not lose him before I lose my mother. It can feel selfish, but it's what I want.

I took my girls home for a couple days to say goodbye to their grandmother and celebrate the new year with my Dad. My oldest wept and held my mother's hand and sat next to her over the two days we were in town. She just found a way to make a connection with my mom. It was very beautiful.

My Dad and I updated our end game plan, just in case. That is a difficult reality when walking down the path of Alzheimer's. You need to keep an eye on the future and as the situation takes different turns, make adjustments. What if Dad dies right now? What happens to mom? What do we do with Dad's VA benefits and the house? How do my brother and I work together in a way that doesn't destroy us or create hard feelings? You must be brave enough to keep asking these questions and as time drags on, you must be persistent and yet thoughtful. It is quite the balancing act.

I told my Dad I was praying for death. I don't know how to feel about it, but I want this chapter to end now for many reasons, but partly for my oldest. She is hoping to be oversees this next summer and next year. It will be devastating if my mother dies while she is gone. But I also just want it all to be over now. We are all surrendered to God's timing, but this is my heart's cry. Let us move on and let her go home. I know my Father will be lost for awhile, but maybe not as long as you think. I can feel his weariness. It feels like it's time.

Lord Jesus be with us as we wait on you, but please take her home soon for everyone's sake. Amen.

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.