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 at.

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

  1. Reblogged this on Retirement……LOVE IT! and commented:
    I found this article while I was perusing the internet today. Since I am going through this, along with the rest of my family, with my mom (she was diagnosed with dementia over three years ago), this article really “hit home.” Therefore, I thought I would share this blog with you.

  2. We are going through this with my mom. She was diagnosed with subcortical dementia a little over three years ago. My older sister and I live several hours away from my parents, so my younger sister (who lives two houses away from our parents) generally is the one responsible for overseeing decisions and everything else related to both our parents. Mom (85 yrs. old) has been in a nursing home for a little over two years and dad (almost 87) still lives at home. Even though he spends several hours with mom every day, he still feels terrible and guilty that this has happened to her. He doesn’t do much else each day. We have tried to help him get involved in volunteering or anything, just to give him something to do. My older sister and I go home once a month and stay for several days (we are both retired now). This helps to relieve some of the stress on our younger sister and gives her a little “break” from dad. It also gives us the opportunity to spend more time with mom as well as dad. It is SO VERY hard to watch as this disease progresses. Thank you for your blog on this topic; it has helped me to realize that: 1.) A LOT of other people have gone through/are going through this same ordeal; and, 2.) That there are still moments to be cherished because our loved ones ARE still with us. Thanks for the gentle reminder!

  3. Cheryl Cooley says:

    My Mom had Alzheimer’s for several years and lived in the Memory Care Unit of an Assisted Living for the last 5 years of her life as she digressed. During that time the Lord taught me: (1) Patience ( 2) MORE Respect for the Elderly ( 3) Deeper Compassion for others (4) That I didn’t have to be so strong all the time (5) How to step into someone else’s reality for awhile, (6) People are NOT who they appear in the Chapter of their life you happen to walk in on. This last lesson might be the most important. I’ve learned that everyone is deeper, richer in character & accomplishment than we give them credit for. The things they’ve been through, lived through, suffered, loved, cried & laughed through we’ll never know. Alzheimer’s is no respecter of persons. It attacks people despite their level of education, professional, race, socioeconomic class, or religion. It’s an equal opportunity destroyer. If you’re going through this journey with a loved one right now or have just been diagnosed, God bless you.

  4. Galen Reed says:

    Yes, very well said. But I would add another reason to hold those with dementia in honor: to not have them live out their full number of days would be an added tragedy. Help them to their full number of days, give them what you can, and let God take them home when He sees they have run the days He appointed for them. … “O death, where is thy victory? O death, where is thy sting?” (I Cor. 15:55) … Let’s rob death of its victory in not allowing it to come before its God appointed time!

  5. Mary Tuttle says:

    My mother in law had Alzheimer’s I tried to treat her as she was the same person she had always been. Not to talk down to her, not to make her upset when she asked questions over and over, when she didn’t realize that friend or husband had passed and she was looking for them. It was hard to say that he or she was sick or busy, not to upset her because she would not realize or-under-stand what was going on day after day as the brain would die day after day. We would talk when she Spoke, when she could, about when she was a child or a kid, Or someone I didn’t know As if she thought that I should know, when I didn’t know these people, but she felt better and that’s all that matters, that she was as comfortable as possible. It’s sad but that was her life with Alzheimer’s. I am so glad that she was a Christin woman and she knew that for many years. I have found that when someone Passes and you know that she is in Heaven that’s one thing we can be be at peace and that she is too. Amen

  6. JenniferE says:

    Beautifully written! Its one of my biggest fears for myself as well. I will pray for your mom to remember you often and for you to notice her remembering and to share your love with one another. God bless you and your family.

  7. Fran Miranda says:

    Sorry to say I totally disagree. I would never want my only child to go through what I went through when my mom had Alzheimer’s. I would not want him to put his precious life on hold to take care of me or become depressed seeing me turn into an insane women. It was the most awful Time of my life and my mom’s. I have already shared my wishes with my son and he knows once I do not know who he is, to please say goodby and never return. I love him too much to put him through that. I would take a bullet in a second to spare the love of my existence from any pain.

    • chermor2 says:

      Fran, I’m sorry your experience with your mom was so awful. I understand. My mother just passed away with Alzheimer’s this past December. My dad, daughter, some paid caregivers and I took care of her in her home for more than seven years. Much of it was very difficult and could be heart breaking. She probably didn’t know who we were the last few years of it, except for rare times when she suddenly would. We made so many precious memories with her and she continued to teach us and grow us up until her death. If she had told us to stay away from her, or if she had shot herself, THAT would have truly broken our hearts and left us with horrific memories. Mom’s illness did not put our lives on hold, it gave us an opportunities to love her in a deeper way. I miss her so much. I don’t regret a moment I spent with my mom, only the ones that I didn’t. ~Cheryl~

      • Pat says:

        What a lovely tribute. I also lost my Mom to Alzheimer’s. I laugh about so many things associated with this disease, in my Mom’s case. She was a lovely woman, and always wanted to look pretty. She would adorn herself with the strangest decorations in her hair, or if she couldn’t find her eyebrow pencil, she would use a blue ink pen. She did have to go to an Alzheimer’s facility, where she was well cared for. They had a very lifelike baby doll that the people could hold if so inclined. One day my Mom was holding the doll, leaned over to me and said…I think it’s dead, don’t you? Towards the end, I was the only person she recognized, and I hold that fact close to my heart every day. Yes, it’s a horrible disease, but if people would just try hard to understand, it would make life so much easier for everyone.

  8. Anna Whiteman says:

    And, DON’T FORGET TO SING TO ME. I may join with you, or hum along. Bring a little joy with you…..

  9. Josie says:

    I never knew my father n law because by the time I met my husband he had dementia. I had such admiration for my new mother n law who was his primary care giver and did an amazing job. She loved and respected and accepted him just as he was. Now after 40 some years of marriage I am now the primary caregiver of my husband who has the same disease. It is heartbreaking and it has not been easy. My husband was always such a loving, giving, sociable man. He had such an easy going disposition and was the best father our four children could have ever asked for. Our youngest daughter moved home to assist with her Dad and it has been such an amazing blessing for the both my husband and myself. I feel fortunate to have been raised with a Catholic Christian backround and have an unwavering love and faith in God and His Mercy and Goodness. It is my faith in God that has sustained me through this journey even though I still struggle with being as patient, kind and gentle as I would like to be. May God Bless all caregivers as they strive to give the best quality of life to their loved one with dementia. We may never understand the plan God has for each of us but we need to trust that His will be done. Peace and Blessings.

  10. Shelby Snyder says:

    I love the one about singing to the person. My mother-in-law had Alzheimer’s for many years and was in a nursing home in PA. We did not get to see her but a few times a year, but when we did, our daughter would sing to her. Even though she seldom spoke a word, she would sing along with our daughter. We also sang to my father-in-law for a whole week when he was in the hospital and dying. It was so comforting to him and many of the other hospital patients that heard us singing.

  11. Valerie Skidmore says:

    these have all been very helpful.I took focus factor when my now risen husband thought i had AL. dementia. Then Prevagen which awakened my mind to be more like my college days. Now Phytoplankton 5000 or other good vitemins or combo help me be as best mentally as possible. I have cared for many to share the love of God to them till they pass. Thanks for all the comments.

  12. Greg says:

    Thank you for sharing this Cheryl.
    I saw it yesterday, so it was very timely.
    Today, March 21st 2017, is the one year celebration of my Dad’s home going. He suffered with dementia for about 8 years. I too often told people that if I ever got that way to shoot me. Joking of course, but It is a terrible existance for sure. However, being an only child, I had the lone privilege to assist in the care of my father, along with the staff of the local VA Nursing Home. I visited him weekly and did many of the things that you mentioned. He loved it when I bought​ Vitamin D Whole Milk, and Chocolate Chip cookies and went outside to enjoy the warm sunshine.

    I believe that we all have a time to go home and God will not call us one second too soon or one second too late. I treasure the times I had with him.

    Thanks again for your words of comfort and confirmation.

    Greg – St. Louis

    • chermor2 says:

      Greg, I’m sorry for your loss, but glad to hear you made special memories with your Dad. I’m thankful to hear this post brought you some comfort and confirmation. May God give you grace as you move into this second year without your Dad here. What a comfort to know that he’s with the Lord.
      ~Cheryl~

  13. Dorotha says:

    My mom passed a few weeks ago! She had diabetes, Alzheimer’s, & finally cancer. My dad had a mass on his kidney in 2012 & ended up having to have it removed! We didn’t know he would never be the same he knew he would never be able to care for mom again so wanted us to find a place for them! What an honor to have a dad that wanted to make sure she would be cared for! After finding such a place the struggles of going thru their stuff they had worked so hard for for 60+ years & try & figure out what to put in one room! My dad passed in April 2013! As my mom continued to progress it was so difficult to answer her question of where is dad? I did just as I would want my kids to do! I read her her bible, sang to her, talked about all the fun things we did together & her beautiful grandchildren! As her days started to grow closer I would hold her once so very strong hand & tell her how much I loved her & she would look at me & say I love you too sometimes with tear filled eyes! When I would leave I never said goodbye I always said I will see you soon! I never got to say goodbye but as I sat & watched her take her last breath I know she knew I was there & have no doubt she knew how much I loved her!

  14. Catherine Worley says:

    My Mother had Alzheimer disease for 15 years. She was always wonderful as she filled her pockets and every empty jar with rocks she found. She would laugh and laugh as she said ” Your Dad won’t give me any money so I pick up pretty rocks instead”. I can live with that. Yes she had bad times too, but over all it was good as we accepted the new life she had and took life instride as if it were normal. It is very hurtful to hear people declare how awful the disease is and they brand the Alzheimer person as unfit for life and unwanted. My Mother always said the meal time blessing. Near the end when she no longer had her own words she would get words off the milk carton for the blessing. We all would just look up at each other and say “God knows”. I’m not a blogger. Was just so very glad to read the above.

  15. Antoinette C says:

    My mom does not have Alzheimer’s or dementia but we have been fighting lung cancer and brain cancer for the past three years ( she was diagnosed 1 week after my dad passed from pancreatic cancer) and her spinal cord cancer from 30 years ago has also started growing again. Everything said hit home with me. I am her 24/7 caretaker and if lucky get 7 hours off on Saturday and/or Sunday for me to do a side job, see my boyfriend who lives out of town, care for my home, and cuddle my dogs who live in my home with a doggie door (I do see them an hour a day to feed and show them love). My life is on hold because I won’t put her in a home…..I know she wouldn’t get as good care there than she does with me at home. I watch her change daily and notice the radiation in her brain has taken things away from her and continues to change her. I am hand on having to do her daily grooming, feeding, writing, and we have our own language at times because she can’t remember the word her brain wants to say. She is very aware and feels guilty…..but I know if it was the other way around, she would do the same. I fight chronic depression and care taking doesn’t help……but when all is said and done, I know she will know peace and my true love for her. I pray for strength daily and more times than I count, she has saved me from my thoughts for if I wasn’t here on this earth, she would be badly off and alone. I do have a brother, but too often I have heard “I work and have a life” ……my question to him at times is “I do too….what about me?” Then I see mom and remember why I do what I do even though it is tough. My boyfriend reminds me he and I will be together more soon and my cousin reminds me I will have my time….

    • chermor2 says:

      Thank you for sharing your story, Antoinette. Your life sounds so challenging. My mother just passed onto the Lord December of 2016 and now I miss her so much. You won’t regret the time you invest in your mother now. May God give you grace and strength each day. ~Cheryl~

  16. Carol Speno says:

    God bless you each day with His Peace, Courage and Graces as you care for your mom. Later in hindsight you will see the many blessings and gifts of love that has helped you to grow in ways you couldn’t have without this experience of lovingly taking care of your precious mom. Often my own life seemed interrupted by unexpected challenges that I needed to help a love one with. Now I am again called upon to take care of my husband of 52 years as his dementia increases and has been in need for24 hour care the last few years. I realize that we are called to love not only in the good times but especially in the more difficult times of all. Every day is a day of its’ own challenges and gifts of deeper love with grace filled patience. I find I call out to God fervently and frequently more and more. Not just for myself and my husband but for so many others as well. We are a world of people who need to be loved and shown each one matters and is of infinite value. Prayers and hugs to you sweet daughter.

    • chermor2 says:

      Thank you so much, Carol, for your beautiful message. You are inspiring! My precious mama went home to the Lord December 12, 2016. I’m missing her so much. And now my 94 year old mother-in-law, who has Alzheimer’s, lives with us and God is teaching me more. May He bless you and give you strength as you care for your husband. His mercies are new every morning. ~Cheryl~

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