Category Archives: Alzheimer Awareness

Remembering again <3

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I know I used this photo already this week, but the story behind it is one that is still tender to my heart. 

I have a lot of decorations around our house that were crafted by children we love. 

Painted paper pumpkins and thumbprints dipped in fall colors and dotting a bare tree…a coffee can painted black with a pumpkin and a green stem…all make me smile because I think of the sweet little hands of children and grandchildren.

But this slightly garish decoration tugs at a place in my heart where deep grooves were worn by the ravages of Alzheimers on my dad and the scars left on us as we walked a journey many people know all too well. 

I am no hero in this story. 

I did what I could and let nurses and aids deal with the worst of it on a daily basis as we continued to get kids to ball games and school and through college and weddings and life. 

I wrote this several years ago and have shared before but I share again today because on October 5th many local families will walk in honor of or in memory of loved ones. 

My father lived another three months after I wrote this one tired night when everything in me was raw.

It really is the end.

A wheelchair replaces the bow-legged walk down the hall. Sweat pants and sweat shirt replace the soiled pants and button down shirt with the inevitable pocket to keep his notebook and pens in.

He isn’t angry, but he isn’t really happy either. Just in a fog.

I think he knows me, but hard to tell.

Trying to make conversation, his words are nonsense. He is embarrassed because he couldn’t swallow his medicine and now it is a wet spot on his shirt.

He looks at me, but doesn’t see.

It isn’t like I wish he was the way he was before. That wasn’t any better. Just a different kind of awful.

I don’t feel sorry for me. It hurts more than anyone can know, but I don’t feel sorry for me.

I don’t feel sorry for him either. It’s just another part of life for both of us.Another part that is hard and seems cruel, but it’s just another part.

In it are sweet moments.

Things like a fall pumpkin he made in crafts. It’s obvious he had a lot of help, but still he thinks he made it. When I tell him it is beautiful, and I really mean it because it is, he thanks me in his own way. Though the words make no sense, I can tell by the way he moves his head what he is saying.

When I think of how my mom was spared the pain of this, I can’t stop thanking God.

I can’t think of anything but how thankful I am to Him that she never had to see this. I am thankful it is not my sister. I am thankful it is me.

When I told him I love him, he said “me too”. I asked him if he meant he loves me or he loves himself. He laughed.

I am going to believe he got the joke and it made him laugh.

The laugh and the pumpkin are enough for today.

God’s grace poured out for one more visit, tangible in a fall decoration on the seat next to me.

Tomorrow will bring another dose of grace for that day.

Tonight the tears flow from my tiredness.

Tomorrow will bring new mercies.

For those of you who are in this season still, may God hold your hearts together when you feel you can’t face another trip into that room.

For those of you remembering your own season, may He give you comfort and peace that you loved as well as you could each time. 

No guilt. 

No condemnation. 

God holds all the pieces when everything is falling apart. 

Rest in Him. 

Be thankful for His grace and mercies over you and in you. Over your loved ones or the memories of them that you carry <3

It’s always the re-entry that gets me <3

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Oh my…I have so much to tell you.

Only I am fighting to just say you…because I want to say “y’all”….

because I spent three full days in Texas and well…Y’all….it fits everything.

It’s inclusive when you are speaking to a known or unknown crowd…and works when just speaking a friend.

It finishes a thought or sentence with a much sweeter connotation than our Midwestern go-to “Do you know what I mean?”

So please forgive me if you see me and I slip up and use it…but I think if I didn’t love and live right here in God’s country…Texas would be my next best choice <3

So here is a short recap of the past few days and then I will be spilling out some of what got poured in so…y’all come on back…sorry…last time…I promise <3

First off…

huge shout out and thanks to Russ for showing up and for all you sweet friends who supported us with donations and being at the walk on Saturday.  I kept getting pictures sent and email notices of donations and my heart was so blessed.

And Russ cheesing it with the local news celeb…may have laughed out loud on that one <3

So thankful for each one who showed love for the caregivers and patients of this disease.

Also a very big thank you to Robin who is an amazing gift from God tech person who helped me unglitch my email list in a panic on Wednesday so my scheduled posts could go out.

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The Declare Conference was amazing and I will be sharing more from that this week.

I got home around 1 AM…and hit the ground running Sunday morning because we went up north to hear our favorite brothers in Christ sing…and then Papi thought we needed an overnight so…

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the band of brothers…including the rookie in the middle…climbed in Papi’s truck and the adventure began.

We detected a bit of maybe too much smiling from…

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momma bear since Little Miss Thing looked really sleepy and the house looked waaaaayyyyy too quiet….

Because our truck was anything but.

You know we had a blast doing the most unPinterest worthy things like…

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taking a spin through Menards….

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using a box of crayons that has “Sarah Reimer” written in black marker on the top…yeah…circa 1996 art supplies.

My sous chef and I made pumpkin bread and muffins…

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Boys played their favorite game…

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count the change in Papi’s big baseball bat bank.

After a restful nights sleep for them and not us, of course….

We took a trek down to the butterfly fields and the creek…

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Learned why it’s important not to have an open glass of water in front of you when you are playing cards with the band of brothers….

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Met up with mom at the pumpkin patch…

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introduced Caroline to the wonderful culinary world of Pumpkin Donuts…

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and had…

all in all…

y’all…

another series in the on-going series of ….

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Best. Day. Ever’s.

 

 

 

Alzheimer Awareness – Forgiveness

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Thank you for sharing some memories this week.

I hope if you are or have been a care giver for someone with Alzheimer, you have found some comfort and hope and a safe place to process some of your own moments here on the Journey. 

While our family  didn’t do it perfectly, we did the best we could at the time and the years we spent being the caregivers to my parents and aunt are a blessing and a gift from God. 

One of the greatest treasures from those years happened fairly early on and sustained me.

It also taught me the power of forgiveness. 

After an eight week roller coaster of bringing them here, seeking the right facilities and medications that included having to visit my father in the Psychiatric unit of our local hospital in what was the absolute lowest point of the entire seven years; I finally got my dad settled into a nursing care facility under a director who loved him and advocated for him. 

My mother was still recuperating, so I visited alone at the start of his stay there. 

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The weather was warm and we would go sit out in the courtyard. I always let him lead the conversation. And I was comfortable when we just sat in silence.

One day, as we sat together,  he told me he remembered things in spots. I asked him what he meant and he pointed at me and said he remembered me and he pointed to a statue and a bench and said he remembered those.

Then he waved his hand vaguely around to some other parts of the enclosed area and said how he didn’t remember there…or there….or over there. 

I said that must be frustrating and confusing and he agreed and then he said he also felt like he may have said something to hurt me but he couldn’t remember what it was. 

My dad had what we call a “German temper” my whole life and when he got mad, he said a lot of things. But he never said he was sorry. 

He showed me he was sorry with his life. 

But he never said the words.

Until that day. 

That day when Alzheimer appeared to have stolen all that was good in him, my dad looked at me and told me he just knew he had said something to hurt me and he didn’t know what it was but he sure was sorry because he would never do anything that would harm me. 

When I say we took care of my father for seven years, I can tell you that the one moment on a bench in a sun drenched courtyard was worth every second. 

Years of hurt washed away that day. 

I learned the power of asking and receiving forgiveness. 

I learned that even when a disease as ugly as Alzheimer steals, we have a God who gives back more than we could ask or imagine. 

My prayer for you today…

whoever you are…

whatever pain you have endured at the hands of a person or because of a situation or circumstance…

whether it be Alzheimer or cancer or abuse or desertion or betrayal or anything that was meant to tear you away from God…is that you know the love of God, who redeems and restores and rescues and renews. 

The thief comes only to kill, to steal and to destroy….but Christ has come to give life, to restore, to build up. 

He is faithful <3

Only God!!! At this conference and I always pray where to sit. Today I sat by a young woman who writes a blog for guess what?????? Caregivers!!! Here is her site:

http://lifesferriswheel.com

You are very welcome!

Alzheimer Awareness – Humor

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We have covered a couple of rough days this week as I have shared some of my experiences with Alzheimer care.

We looked at fear and guilt, so today I want to lighten it a little and share another aspect of our journey that I believe is essential to your survival. 

Humor

My father’s father most likely had Alzheimer, but it wasn’t identified back then. 

I remember my aunt sharing stories about how, even though she lived next door and had been in their house a zillion times over the years, her dad would refer to her as “that lady you had over.”

My aunt had dancing eyes and a laugh that I would give a small fortune just to hear again…she had a rich voice like our Sarah girl and she would tell those stories and chuckle deep…she said you have to laugh or you will cry. 

Oh you will still cry…but you have to laugh.

You have to laugh til you cry and cry til you laugh and you have to do it with people you love. 

And we did laugh. 

There was the time we were standing in the lobby of the nursing home and Rachel said, as only she can…Uh…mom….look at that….

There was a list of phone numbers posted in big marker on a huge white piece of paper with numbers of calls made. 

Ours was up there in bold black at the top of the list with a ridiculous amount of calls. 

Apparently the nursing home had to pay for outside calls and some people were abusing the system. 

Yep. 

My dad, who couldn’t remember my name … who called our children his “nieces” (yes, even John was included in that) and had to be introduced to my husband on occasion…had managed to figure out the access code to the nurses station phone and made several hundred calls to our house that month. 

Which explained all the hangups on our answering machine. 

There was the time I tried to get him new shoes and after bringing three possibles in and struggling to get them on his feet and zero worked…I put his old pair back on him in exasperation, knowing I now had to return all three to different stores and start over. 

As I crammed them in their boxes, he held up his feet and wiggled them around in those filthy, worn out, old shoes.

He smiled at me with great joy and said…

“Well, these fit perfectly! Thank you!”

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So today my prayer is for laughter…for joy…for a lighter spirit and a garment of praise.

Heavenly Father, in our weariness we can lose our ability to laugh.

I think of Jesus and I think he must have had a wonderful sense of humor for a flock of fisherman to tag along with Him and enjoy His company on the daily. 

I picture how He is not worried about things and how His humor is good-natured because He is good.

And so I pray today for light moments each day for care givers. 

I pray they will give themselves permission to laugh and smile and find humor in some of the moments. 

I pray for those times when tears are so heavy that You would lead them to those who can cry with them but can also then help them laugh again…smile again…find joy in living again. 

Father, I know you have a sense of humor…You made me.

In laughter I find I can take myself less seriously and I can sense Your love and healing in those moments. 

As surely as You sing over us, You must also laugh and cry with us, and in this Holy Communion may we grow closer to Your heart. 

I ask in Jesus’ Name <3

Alzheimer Awareness – Guilt

I have to come clean on something here.

Yes, we have a team put together and yes, I am raising money for the Walk on Saturday here in town.

And yes, I have invited friends and family and total strangers to walk with us. 

But no, I am not personally walking.

Because when we agreed to set up a team and support the local Walk to Remember, I forgot I had signed up for a conference that weekend in Dallas. 

Irony.

Russ will be walking for both of us and it would be wonderful if local friends could join him. 

And I am given fresh material for my second topic of this week:

Caregiver Guilt

Because the truth is, you cannot be all things to all people all the time…but the lie will tell you, you could if you tried harder.

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As I mentioned yesterday, the care of my father, mother and aunt all fell on us in a very busy season of life.

Having parents forty years old at my birth, I was myself in my forty’s when their health began to deteriorate and we had to bring them here to arrange the various levels of care needed for each one.

My aunt had dementia and my father had Alzheimers and I am often asked the difference.

My unscientific, non-physician trained answer is..my aunt forgot things but when you told her she could process and remember for a little while. 

My father’s condition was a whole new playing field. 

Basically he often couldn’t understand what he was being told. He lived in a strange world made up of his past and present all jammed together into something he tried to make sense of. 

His natural tendency to have a temper was enhanced by the frustration of his illness and there were days I prayed he would forget who I was so that he would no longer be angry at me for keeping him there “in that place”…as he called it.

But now, from the safe distance of eight years of healing, I often thank God that the last time he looked at me…even though he could no longer speak…his eyes knew me as his youngest daughter. 

He didn’t know my name. 

But he knew I was his youngest daughter to the end. 

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And for this I thank God. 

As I mentioned yesterday, our caregiver years for aging parents were also our final years with our children in our home. 

I knew my father, in his right mind, would have told me to care for my family and not worry about him. My dad lived his life caring for his family and he would have been truly angry with me if I had neglected my own.

I knew that the way to honor my father was to not let our three children spend their last years in our home without the full attention of their mom to the best of her frazzled abilities. 

I also knew that it didn’t matter how much time I spent with my dad, when I got home the phone would be ringing and he would be angrily asking me why he was there and no one was coming to see him. 

My mom lived five years after we brought them here and I would drive her over to see him once a week.

Sometimes I went in and sometimes I shooed her out of the car, reminding her she was the one who had made the “for better or worse vows,” not me. 

She would say she had a feeling she would die before he did and I agreed and told her I would hunt her down and drag her back, but we both knew when she was gone, I would be the one to go see him once a week. 

Even now, Caregiver Guilt, rears its ugly head because I feel compelled to explain why we didn’t go more often. 

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Sure some families go every day.

Some daughters and some wives and some sons stop and make sure their loved one has company to eat with and to visit every day or several times a week. 

But for us….more frequent visits meant a change in routine.

It meant more behaviors…more Ativan…another trip to the ER because he became uncontrollable. 

So we stuck to a routine. 

Our visits were consistent and short. 

And we held back our tears on the days he waved to us from the window of the lobby until we pulled out of the parking lot. 

Other days, we cried full on as we tried to forget what he had said about us as he stormed off down the hall.

And either way, we left feeling like the worst people ever. 

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Then my mom died and it was just me. 

In the sanctuary of the car, hot tears would fall and I would find myself in the strangest place of asking God to take my dad home. Please. For an end to the pain and an end to the heartache and an end to the suffering. For him, for me, for all of us.  

So today I offer a prayer for the ache in your heart if this kind of visit is a memory or if you are still living it today.

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Heavenly Father God,  You know our hearts.

As we try to do what is best for those we love who no longer have their right minds, You alone know the tears and guilt we bear as we leave them in some facility or under someone’s care and go on out in our world and our lives. 

Lord, I pray for those who are in this setting now to be able to understand and remember that being an advocate for someone who is unable to make daily life decisions often means we must place them in care facilities that can provide in ways we simply are not equipped to do.

Father God, I thank you for the men and women who willingly and lovingly provide care for our loved ones in these places. I thank you for the daily kindness they extend to our family and I plead Your mercy and grace for the abusive words they receive at times from those they care for.

Lord, I thank you for your love and for holding us when we are broken down and hurting. I thank You that if we ask, You to help us know where we need to be. You will guide us each and every day.

Help us to trust You.

While You can be everywhere all at once, we cannot. We can only be in one place at one time. Help us to know each day where our one place is and help us to release to Your care the people and situations we are unable to attend to.

Lord I ask for sweet moments for both the caregiver and the loved one.

I pray for connections that soothe the woundings of harder times and I pray God, You would remind those who are in the trenches that You are not condemning them. You are not judging them.

You see the weight of the burden they carry, and Jesus Himself is shouldering it with each one.

Bless them Lord with rest and peace and strength.

I ask in Jesus’ Name <3