What I’ll Say to my Children if I’m Diagnosed With Alzheimer’s

I was skimming some other dementia blogs lately and a reader had written in saying, that though she felt guilty about it, she wished her mother would die in her sleep and not have to continue living through the pain and indignity of dementia.  I’ve heard others say things like, “I’ve told my kids if I ever get Alzheimer’s just shoot me.”

I understand where these comments are coming from, but they make my heart heavy.  I feel like these attitudes devalue my Mom’s life right now. Even though they are not specifically referencing her, they are in effect saying that people like her are better off dead. It is hard to see Mom changing and confused and upset. But she still has sweet times of love and joy, too.  And God still has a purpose for her life.

He is growing our patience as we care for her.  He is developing our tenderness and mercy.  God is giving us opportunities to show love to a dear mom who loved us all so well when she was able and strong. He’s sending us smiles and laughter with Mom’s quirky ways and funny words.  He’s challenging us to love faithfully when she is angry and difficult.

People with dementia are still people.  And God still has a plan for their lives. Even when they are bedridden and can do nothing at all, maybe their very life keeps us clinging to God more. Maybe their very existence draws us closer to God as we seek Him and cry out to Him.

I fear having AD someday myself. (My mind already concerns me too often.)  But if that day comes I’m not going to tell my kids, even jokingly, to just shoot me.  What I would say to them is this…. Pray and trust God to guide you.  Get as much help as you can.  I don’t want you to sacrifice your life plans or family for my sake, but I want to always be part of your life.

If you need to find a nursing home for me, I understand.  Pray about it and seek wisely. And then visit me often. Even if I don’t seem to know you, believe in your heart that part of me does.  Hold my hand and talk to me.  Tell me all about your life.  Sing to me and read the Bible to me, please.  Brush my hair and tell me memories of your childhood.

If I’m still able to chew be sure to bring chocolate.  (You know your mom.) And hopefully I’ll have some adorable grandchildren to marvel over.

And don’t forget to take some time to just sit quietly next to me. Hold my wrinkled hand and let God whisper to your soul.  I’m so sorry you have to go through this painful journey with me, but God will give you strength and grow you through it all.  Hold fast unto Him. Sink deep into His love.

Everything will be better in heaven.  Meanwhile, when I can’t talk anymore; just know that I love you forever and that being a mom to you was an honor and the delight of my life.

That’s what I’d say to my children. Oh, and I might throw in a “Be nice to your brother” for old-time’s sake.

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947 thoughts on “What I’ll Say to my Children if I’m Diagnosed With Alzheimer’s

  1. LESLIE says:

    Hello. I am the marketing director at a health care organization that includes a skilled nursing facility . . .I am wondering if we could possibly print this in our news letter . . .of.course giving you a by line . . .it is a great message and something I feel that would be good to pass on to our resident families . . .

    • chermor2 says:

      Absolutely, Leslie. I would be honored. My name is Cheryl Morgan. If you could include a link or reference to my blog and/or Facebook Page (both titled God’s Grace and Mom’s Alzheimer’s) I’d appreciate it and it may be helpful to families dealing with this. Thank you so much! Cheryl

  2. Julie Treutel says:

    God does not give people dementia, Alzheimer’s or cancer or any other problem or disease. Do you actually think the creator of all spends time planning your life? Who do you think serves who? Your here, good things happen to bad people bad things happen to good people. Live your life so when you die you will have done amazing kind and loving things for others.
    When this biological mass I live in gets sick and if I get Alzheimer’s I am being erased. I am not in my body anymore. When I can’t take care of myself if you love me if there is no cure I deserve to die it’s my wish and I hope to hell my family honors it for me.

    • chermor2 says:

      Julie, I never said God GIVES people dementia, or cancer, or anything. I agree that bad things happen to good people and good things happen to bad people. I agree your goal of living your life to do kind and loving things is a worthy goal, especially if it is out of love and obedience to God.

      But I also believe God deeply loves us down to the details. Jesus is quoted in Luke 12: 7 (NLT) “And the very hairs on your head are all numbered. So don’t be afraid…” And I believe He does have a plan for those who love Him. “And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them.” (Romans 8:28, NLT)

      I cringe to think of a family expected to kill a loved one in order to honor their request. What kind of memories and guilt and grief does any kind of suicide leave a family with?

      Grieving the recent loss of my dear mother has been hard, but I have a peace that we continued to show our love to her. Our years of caring for her were challenging, but full of tender, sweet memories too. I can’t imagine how I would handle the grief now if Mama had killed herself or expected us to do it for her. I’m so thankful I was with her when she passed on with a gentle smile and a look of incredible peace.

      • What peace and contentment in the midst of the storm to know that we can rely on our Lord and the Scriptures during such times. Thank you for verbalizing your thoughts so well. Personally I am not dealing with the dementia issue right now, but I have several friends who are. And I plan to print this off in the event that the Lord brings such into my life at some time. Thanks for the post!

      • chermor2 says:

        Thank you, Judy!

      • Emily Pynnonen says:

        I’m heartened to read of your journey with your Mom. Dad and I kept Mom home as long as he physically could, found a residence we trusted with her care, and visited regularly at first, though not daily. As her ability to interact decreased, we checked on her less frequently. Eventually, Dad and I only went monthly. It was always difficult for him and seemed to make no impression on Mom. Mom passed after a stroke left her unable to swallow. This blessing came after seven years in the facility and thirteen years after her first symptoms. I will, someday, be able to learn from her how this journey felt from her perspective. Until then, I am thankful I could do what I did to help while she was able to be cared for at home and that we “visited” when we did. It’s a long and difficult trip, and I pray for strength for all currently traveling it.

      • chermor2 says:

        Amen! It’s a challenging road, and people on it need our prayers!

      • Kimberly says:

        What a graceful reply to a somewhat bitter comment. I am an RN that works on a Memory Care unit with 13 residents.

        When I became a nurse I really wanted to focus on emergency medicine. I believe God had a hand in blocking my path to lead me to where I am today. Working with a population that can be difficult but bring so much joy to my heart.

        I am able to care for and serve my residents and their families in a way and manner that would not work well in a busy ER. My residents and their families are my family.

        The joy and blessings I feel when a resident sees me and smiles reminds me me that God, Jesus and the Holy Spirit want us to experience love and that love will bring us to Heaven.

        I serve my residents when their families cannot be there with them every minute and my sole purpose is to keep them well, safe and feel secure in their environment. They serve me with their smiles, hugs and sometimes saying random things that I know God put in their mouths to say exactly when I needed to hear it.

        I am blessed to be able to laugh with them, sing with them, hug them, dance with them and bring joy to them. It is my honor to be there with them as they transition to death and know that they touched my life just as much as I touched theirs.

      • chermor2 says:

        Thank you, Kimberly! I love your reply and I LOVE that YOU, and people like you, are serving as nurses in memory care! What a gift you must be to your clients and their families!

        I also love what you mentioned about your residents saying random things that you need to hear– messages from God. We have often thought that with my mom, too! Thank you for your ministry and God bless you!! ~Cheryl

      • AMauiBlog says:

        Thank you Chermor2 for a gracious and loving reply to this comment.

      • JoAnn Buchanan says:

        I took care of my Mother until she fell and broke her hip. It was a precious time for me to give back to her for the times she cared for me. It was sad to see her go but knew I did the best I could for her. Never would I have killed her or did she want to take her own life. This is not a choice it is a life!

      • chermor2 says:

        Exactly, JoAnn! It is a life! Thank you and God bless you for taking care of your mother.

  3. Suzan says:

    So beautifully and poignantly expressed. Thank you.

  4. Zenaida Magtoto says:

    This is so sad but so true. People who talk loud and think they know it all are often the ones who know nothing about this terminal brain disease. My loved one is suffering from dementia for a long time but no one paid attention. My family think dementia and alzheimer is all but one and that it is curable – wrong! One day they will realized the spare times they had could have been spent with their loved one suffering from alzheimer or dementia. If only they knew the missed opportunities before it is too late.

  5. Veronica Paver says:

    I work as a nurse assistant at a nursing a home and often think about topics such as these. Beautiful article, thanks for sharing your thoughts.

  6. Rhoda E says:

    Read the book “My Two Elaine’s” by Martin Schreiber about dealing with his wife’s many years of Alzheimer’s

  7. Dovie Goodnight says:

    Thank you for sharing this article with us. It really touched me..

  8. S. A. says:

    Good comments, however, I have a Mother who has made it exceedingly clear that she will not go to a nursing home. I have my own health issues and when and if the time comes, I don’t know what I will do. Do I do as my Mother wishes and keep her out of a nursing home even though I can’t take care of her? So, like the woman you first used as an example in your story, I wish she would just go peacefully in her sleep if & before that time comes.

    • chermor2 says:

      My Grandma always said she wouldn’t go to a nursing home either. But as she aged and had a few falls, she ended up in the hospital and then in a nursing home. She told me, with a surprised look on her face, that it was a lot nicer than she expected. Grandma was a very strong-willed, stubborn person and I was amazed that she’d changed her mind. Let’s hope your mother does, too. Sometimes when people are older and more frail they appreciate having the security of people around all the time to help.

      • S. A. says:

        I’d be very surprised if my Mom would change her mind. She blames the one Dad was in, briefly before he died in 2012. She says they killed him.

      • chermor2 says:

        I’m sorry and I get it. My Grandma said she’s never forgive herself for putting Grandpa in a nursing home. I guess bottom line is you can only do what you can do. I hope things work out well for your family.

  9. Eileen says:

    Thank you, my mom passed away in February from dementia and other health complications. Your writing expressed her wishes beautifully and my brother and I with the help of our spouses were able to honor her journey. My father passed several years earlier also from dementia. Yes it is a horrible illness, however the inner person still remained my loving parent. My moms unwavering faith allowed my faith to grow exponentially. Absolutely, there were times when this was a struggle but God used my mom in ways I never imagined and the lessons I learned will always remain tucked deeply in my heart.

  10. Janet Warfield says:

    My husband was diagnosed with dementia in 2008. He had always told me that if he were unable to care for himself, he hoped that I would do something to end his life. I told him I could never do that, but that I would not do anything to prolong his life. He probably has FTD, a form of dementia in which the patient loses the ability to understand and conform to behavioral norms. He has now lived in four different care facilities and been in four different hospitals, because of his behavior. He has hit and shoved staff and other residents. He has grabbed women’s buttocks and breasts. He has undressed female residents fondled their breasts. He’s gotten into their beds. He threatened to rape a male resident at one facility. I could go on and on. He is now advanced enough that most of this behavior has stopped, although he still gets anxious and agitated and strikes out at times. Although medication has helped with his behaviors, what has really curtailed them is the fact that he no longer is able to walk without a lot of help. He also is totally incontinent, losing weight, has swallowing problems and has to have softened food and thickened liquids. My heart hurts when I see the intelligent, caring, compassionate man I married, who never wanted to live this way. going through this. He’s confused, agitated, scared. Why do we allow this to continue? The God I believe in is different from the one you believe in, but surely this is not what either of them wants.

    • chermor2 says:

      I’m so sorry, Janet. What a heartbreaking situation! My Mom did some hitting and biting and swearing, which were all very shocking since she was such a gentle, loving person. But she still had many sweet times, too. Your circumstances sound so hard– my heart goes out to you!
      When hospice got involved with my mother, they put her on medications that calmed her down quite a bit and even made her seem more often herself. Has that been tried?
      I’ve never said God wills Alzheimer’s or causes it. It is one of many horrible things that we deal with in this world, I believe because sin came into God’s perfect creation.
      But no matter what the cause of pain, I do believe God is with His children in it and will give us strength and grace to bear it. And I do believe life is sacred and that it’s up to Him to number our days, not us.
      May God give you grace and strength, Janet. ~Cheryl

  11. Cori says:

    You would rather watch someone suffer everyday of their life. Even if it is God’s will. I do not want to be that person and my kids are busy and don’t need to worry and pay for me. I don’t want to be shot just let me sleep peacefully. I know this sounds cold but I have been sick for 25 years. And I have watched to many people suffer in pain and confusion waiting for that short time someone has time to visit.

  12. Mary Vickerman says:

    Powerful. Living this right now. The words are therapeutic and make sense and give me strength. Yes she has been my best friend, confidant, and inspiration. She has loved me when I wasn’t lovable and guided me when I was lost. She always put everyone else’s needs before her own. She continues to see the best in everything and everybody. She is my loving Mother and I cherish her.

  13. Bj bontempo says:

    This is so beautiful. I’ve had an aunt & an uncle go with alzheimers. It is terrible. But all life is important. And i love the last line saying be kind to your brother–if only!

  14. Camille says:

    Having experienced first hand the effects that alzheimers has on loved ones and their families, I am sadden to think that those that miss the opportunity to share the small moments that occur however infrequently. My dad had alzheimers for almost 20 years before we lost him to life…in that time the sweet moments that we shared will always be remembered. His humor was the last to go, thanks for sharing.

    • chermor2 says:

      Thanks for sharing, Camille. I agree — the sweet moments are treasures. What a gift that he kept his humor for as long as he did, too. God bless! ~Cheryl

  15. Beverly says:

    Since my mom and dad both had AD, plus 2 of my uncles, I fear getting it, too! Mama always said there are things worse than death. AD is one. I still remember when Mama could not remember my first name.

  16. Brenda says:

    Thank you for writing this. My mama had Alzheimer’s for many years. She passed away counting her children and she sang “You Are My Sunshine”! What a gift God gave us the last few days of her life. We had a wonderful loving mama. She is dearly missed

    • chermor2 says:

      Oh that is a precious gift, Brenda. My mama passed in December and I miss her so much now, too. My Mom used to sing “You Are my Sunshine” too! But the last year or so of her life she quit singing. So Dad would sing to her. he changed to the words to, “You are my Sweetheart”. Makes me misty thinking about it. God bless! ~Cheryl

  17. Lynn Dananay says:

    Beautiful! Thank you

  18. Adriana says:

    Thank you so much for your thoughts, I treasure the tiny bouts of lucidity that God gives my Grandmother and I’m comforted In believing that all the love she once had for me is still in her heart. 🙂

    • chermor2 says:

      Yes, that’s what I did with my mama, too. You will always be thankful you did, Adriana. Keep treasuring the sweet moments and may God give you grace for the journey! ~Cheryl

  19. Billy Hill says:

    Holy Crap Cheryl Morgan, I just got finished posting a blog on this topic https://billyhillhere.blogspot.com/2017/08/billy-hill-here-waiting-to-die.html and a friend sent me your posting. Thanks for those words, they literally crushed my soul (in a good way). It seems like only yesterday, when my mom could barely talk, that she would continually say “I wish we could all just get together, and eat, and laugh, and be in one place”. Now she cannot express this request. But I’ll be dang if I am not going to fulfill those last wishes over and over and over again. Thanks so much for sharing.

    • chermor2 says:

      LOL, Billy Hill! I read your post. It sounds like we came to the same conclusion. Thank you for letting me know this post is meaningful to you. God bless you as you eat and laugh and care for your mother! ~Cheryl

      • Billy Hill says:

        How do you get so many people to comment on your posts? I like get 30-90 views a day, have 41000 views this year, and NOT ONE SINGLE comment. I have even antagonized people to leave comments and used reverse psychology – you better not leave a comment or Billy Hill will go all badass on you – I have only received one comment, and that was from a friend I asked to leave a comment because I thought maybe the comments were not working.

  20. Liz says:

    This post is beautiful. As I spend time with my mom, I find peace. I am saddened by her situation but I too believe that she deserves every loving moment I can share with her. She was always a strong, loving mother and I am honored to be able to give her comfort now. Please spread this post wherever you can. Thank you.

  21. Marion Lewis says:

    Thank you for writing this piece (peace.) The words you wrote describe my moments with my mom perfectly. It is so very difficult to watch “her” fade away, and especially heartbreaking to watch her grieve the loss of her husband, my dad who passed away just 5 months ago. He was her primary caregiver and though my siblings and I visited/called 3-5 times a week, we had no idea how difficult the task was until he died and we became her caregivers. We are doing our best to keep her in the home they shared as it does give her great comfort (as well as tears). And I too believe God is teaching us to be more merciful, patient, and tolerant of others as we enter each stage of her Alzheimer’s. She is a beautiful, smart, kind and generous woman. She deserves to be treated with the dignity and grace she modeled for us as we grew up in her care; all the way to the end of her life, Bless you for your kind and inspirational words.

    • chermor2 says:

      Marion, your message brings tears to my eyes. I’m so sorry you lost your dad in the middle of this journey with your mom. My heart goes out to you and your family. I love that you’re trying to keep your mom in her own home. What a beautiful thing! We were able to keep my mom home too, but we had dad there the whole time which made a big difference, even though he couldn’t physically care for her the last year of her life. May God strengthen and comfort you and give you grace as you love and care for your mom. And may He bless you abundantly! ~Cheryl

      • Marion Lewis says:

        Thank you for your kind and comforting words. Isn’t it beautiful how God helps us find people like you to give us that strength to continue the journey?! May He bless you abunduantly, too!

  22. Julie Graul says:

    Thank you so much for this. It’s exactly how I feel. I want my daughter to read it, too.

  23. AMauiBlog says:

    My mom passed away with Alzheimer’s. It runs in their family. My dad and my brother and his family lovingly took care of her (I’m on Maui, they are in the Philippines). Thank you for this post. I totally agree with you.

    • chermor2 says:

      Thank you, AMaui. I’ve only flown over the ocean twice– once to go the Philippines to adopt four of our children, and the other time to Maui to celebrate my 30th wedding anniversary with my husband! Both places had such incredible beauty! Thank you for your comments! God bless you! ~Cheryl

  24. Tracie McKinney says:

    Thank you for that.

  25. Your thoughts are so beautiful! My mother had Alzheimer’s so I often think about the possibilities. I often tell my family (when I grasp for a word or thought) “Please take care of my when I am flakey”. I pray that they never have to go through that journey, as it was hard enough on them watching their Nonna go through it. If it should rear its ugly head, I pray they have the strength and love to “concure” it head on as we learned from my dad as he walked the path with my mom. Love concures all ❤ I know she is in Heaven watching over all of us, complete in mind and soul.

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