Alzheimer’s . . . My reflections

As much as I hate it, my mom has had Alzheimer’s.
She broke free of it on September 8, 2010.

And I miss her terribly, Alzheimer’s and all.don't_forget

She transitioned in 2010 from her house of 44 years with her spouse of 55 years to an assisted living facility. It wasn’t easy on any of us.

Below are personal pieces of our journey that I don’t want to forget.

I pray they help you if you are traveling this path also, or know someone who is. 

1. Tips

2. What I want others to know

3. Facility Life

4. God and Alzheimer’s

  • Love the least of these – God started it; we keep it going.
  • Is this what freedom looks like? – Having Alzheimer’s looks like slavery to me. What is true freedom anyway?
  • Enough change already! – I was crushed when Mama no longer recognized me. Looking for stability, I found it in the constant, unchanging One.
  • No snatching - She’s slipping away. But I still see her in there from time to time.
  • I am hungry – Learning to fast from my “normal” life is a battle.
  • A surprise moment of bliss – Sometimes when you least expect it, God pulls out a surprise miracle moment just for you.
  • Who do you think I am? – Those with Alzheimer’s may often mistake you for someone else. Who are you really?
  • Hard things - Sometimes you have to make hard choices for other people. Make them. Then lay them all down at His feet.
  • Be a tree – She’s now prone to wander. I need to be her tree (Psalm 1).
  • In Paradise – She’s no longer homesick; just me.

5. Book reviews

  • 'The 36-Hour Day' by Mace and Rabins The 36-Hour Day – by Nancy Mace & Peter Rabins.
    This is the go-to book about all things Alzheimer’s. Read it first.
  • Alzheimer's and Their Caregivers by Porter Shimer New Hope for People with Alzheimer’s and Their Caregivers – by Porter Shimer.
    Lots of general guidelines that are helpful, but I especially benefited from this section: “10 Commandments of Effective Caregiving.
  • Learning to speak Alzheimer's by Joanne Koenig Coste Learning to Speak Alzheimer’s – by Joanne Koenig Coste.
    Learn how to treat your loved one with dignity. Many specific tips, including the 5 tenets of caregiving.
  • Plan B by Pete Wilson Plan B – by Pete Wilson.
    Does anybody ever include Alzheimer’s in their Plan A for life? This book isn’t about Alzheimer’s. But it’s about how to handle life when your original plans don’t work out.
  • I'm Still Here by John Zeisel Ph.D. I’m Still Here – by John Zeisel.
    Centers on how to stay relationally connected with the person living with Alzheimer’s. Excellent theories and practical suggestions.

6. My prayers

* * *

Feel free to share any tips or advice or stories that you have as well. I care.

21 comments:

Merana Leigh said...

I hate Alzheimer's. My mom had it. I would call her (I live in MD, she lived in MO) just to talk. I knew she would NEVER remember that I called. But I just loved to hear her talk, hear her laugh - have her ask me all the same questions or tell me all the same stories again. Especially, now that she's gone (uterine cancer in '02) I'd give anything to have those talks still. The "mom" I grew up with was gone a long time prior to her death, but the "woman" I loved, remained for a long time. Sometimes I look at my hands or my feet & can see her's in mine. Or sometimes I hear her laugh in my own & have had others say "you sound just like your mother". What a blessing!

I wish you strength for this journey.

I look forward to following you. Please stop by & follow me as well. I welcome any comments you care to share!

Blessings ~ Merana

Virginia said...

The greatest gift that you can give to your Mother at this time is the gift of loving acceptance. You’ve just got to try to deal with the present situation with as much serenity and perspective as you can manage. We are loved, we are chosen, we have a purpose and God has a plan for each one of us; those who are weary, for renewed strength and hope for the discouraged....blessings.
Hang in There!
Virginia

Mildred said...

My heart goes out to you and your Mother. My mom lived with us for 10 years before passing away 2 years ago. She developed dementia in her last 6 mos. With the help of Hospice, I was able to keep her here at home with us until her last breath. What I learned is that every minute of every day is special. Her smile/laugh, no matter how short lived, was a huge blessing. Compassion and patience are key. Bless you both on this journey.

Renee said...

This is a wonderful post, Lisa with so much valuable information for others...plus your honesty is a blessing. Sending you cyber hugs...and thanks for coming by my blog....So great to see you here at SS...God bless...

Joan said...

Lisa - my heart goes out to you. Sending a prayer your way for strength and wisdom.

Blessings,
Joan

Dianne said...

Dear, dear Lisa, my heart bleeds for you right now. I want to come back when I have more time (son and family here this weekend from out of state) and really soak up all that you have written. I appreciate you sharing your heart with us so much.

My prayer is that God will strengthen your heart and be your portion forever. Psalm 73

Love,
Dianne

Kaye Swain - SandwichINK for caregivers and grandparents said...

Hi, I popped over to visit from Spiritual Sunday. What a great resource this post is for those caring for elderly parents - particularly when dealing with Alzheimers Disease or other dementia symptoms. I've bookmarked it in Delicious and tweeted it as well. :)

I enjoyed several other of your articles - could SO relate to the Plan B one.

Thank you for the blessing you've been and praying for you to be blessed as well. :)

sarah said...

this is a great list of resources and so needed out there. I've been following someone who documented her journey with her mom...sometimes so funny....other times heartbreaking. Stay strong....

Cathy said...

Bless your heart. Thanks for sharing all that information. And thank you for your sweet comment on my music website. Praying for you, your Mom and family ~

pete wilson said...

Praying for you Lisa!

Charlotte said...

Alzheimers is so horrible. Both of my parents had severe dementia before they died. I sympathize with anyone going through it. Your sharing links and experiences will help others I am sure. Thank you for linking with Spiritual Sundays.
Blessings,
Charlotte

Sandy said...

Hi Lisa,
My dad had Alzheimers a couple
of years before he died. It is
such a horrible disease and I
still remember what all of our
family went through. I just
wanted to tell you that we
relied upon the Lord and He
sustained us. He is our strength
when we feel as though we have
none, and He is our hope when
all seems hopeless.
Trust in his love and care.
Blessings,
Sandy

Ginger~~Enchanting Cottage said...

Thank-you for posting all of these things.These will help so many people who are not sure of so many things.
God Bless,
Ginger

Saleslady371 said...

Thank you for being so helpful!

Karen said...

Thank you so much for sharing these thoughts and resources. We have had family members with Alzheimers and it is so hard.

Anita said...

Hi Lisa,
I saw this on your sidebar. First let me say my heart goes out to you. My parents moved 2 years ago to an independent living apartment and it was a huge change. My dad is 85 and has Parkinson's disease and some dementia and my mom is 83 and mostly healthy but clearly she does not make the best choices on all things.
Aging parents is a long and often lonely road to be on. Thank you for this post.

Diane said...

Lisa,

Thank you for your transparency. I'm so very sorry for you and your mom. I know how hard it is. My mom has severe dementia and is in an assisted living home too. She is 85 and quite feeble. It's so hard because she does knows me and calls me all day long crying and begging to come and live with me. She is very well cared for at her home, but that makes no difference to her at all. She needs 24/7 care and living with me is just not possible for several reasons.

Sometimes I think I will have to disconnect her phone but I just couldn't do that to her. My heart breaks and the only way I can cope is to sort of "harden my heart" and be firm with her about why it's not possible to live with me- if that makes any sense at all. It does no good to try to reason with her or even comfort her though because she doesn't remember anything at all. Dementia is different in many ways, but it is still horrible.

My biggest concern is that she claimed to be a strong believer in her "former life before dementia". She used to go to church, read her Bible and pray every day but now she takes no solice in Christ at all. Amazingly, she can still do crossword puzzles! But she can't or won't read the most simple devotional books. It's as though her faith just vanished altogether - poof! So I worry that she perhaps never really knew Him.

My best friend's father was also our pastor years ago - wonderful man of God and a minister for 40 yrs. He passed into glory last month from Alzheimer's. At Easter he was shocked to learn that Christ had risen from the dead. As sad as that is, it brought me some hope for my mom's soul.

Sorry to dump the truck on your blog here. I'm the sole caregiver and feel very alone sometimes. AND GUILTY!

God bless you Lisa for being so candid about your pain. May He give you and your momma strength for the journey.

Lisa notes... said...

Diane,
We are kindred spirits. Thank you for what you’ve shared. I’ll respond fuller later today, either here or via e-mail.

But wanted to let you know for now that I do hear you and I care.
Blessings,
Lisa

Brandee Shafer said...

I tracked you down after your comment on my blog post today. This is one AMAZING post. I can't wait to share it with my mom and aunt. Blessings to you.

Davene Grace said...

I just saw this on your sidebar today, and I don't have time to peruse it fully now. But I will bookmark it and return another time. With a strong history of Alzheimer's in my family, I've very interested to read what you've written. Thanks!

Lisa notes... said...

Brandee,
It was a long painful journey with my mom, but an incredible one too, full of blessings and God’s grace. I’m glad I found your blog via Crumbs from His Table. I will pray for your family’s continued journey with your grandmother…

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