Posted by 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.
God's Grace and Life's Challenges 
Well written
i married my wife 5 yrs ago, knowing she had early onset alzheimers. We first met at 2yrs old and 6yrs old. We dated 20yrs later, then married 27yrs later!! It should be a movie..She is stage 5 of 7 now, and I have to do everthing for her when home. I have tremendous love for her, but need God’s help now more than ever to be patient. I’m so glad I made the choice to marry her!
This is totally a great movie idea but most of all a true testament of unfailing love of yours and God’s. God’s strength be with you.
Thank you, David…Hope your family is ok.
Sending prayers and good thoughts your way!!!! ❤❤❤❤
Thank you!
My mother had this disease . She earned her angel wings on Dec 24-2015 . I did exactly what this said . I spoke of my childhood days , held her hand. We sang her favorite church hymns , I fixed her hair , she wouldn’t speak but I KNOW she heard every word . Not only did she have this she had Parkinson’s and became blind an had a stroke , but she knew what I said an would sing along with the cd’s , I miss her so so much every day but knowing in my heart my mother is in heaven rejoicing still and in no more pain what so ever . It’s a great wonderful feeling knowing ur loved one now is with Jesus , I was there when she took her last breath an yes it hurt me to let her go but she went to her heavenly home . I love an miss u mother everyday , I wouldn’t want her back here in this crazy world an in very much pain . I will see u one day and daddy an my family .
This is almost exactly as it was with us! She also had cancer & diabetes pretty sure the cancer is what took her! God bless you & your family! It was tough but I’m trying so har to focus on her being with her family & my daddy!
The longest goodbye … I call it the devil’s disease… my mom lost her battle with Alzheimer’s two years ago on February 12th… I was blessed to have been her care giver for the last 3.5 years… and as hard as it was I am forever grateful that I had this time with her.
The longest goodbye … I have never heard it described that way and that is the perfect description. We lost our step mother to this devastating disease on November 6th, 2016. It was 8 long years of watching her slowly decline and hang on. It was very difficult for her and all that loved her. I am glad we were all able to be there for her.
This says it all. And is so very true.
Lori this was such a wonderful article and so true. We never know what is facing us and I think we all have that fear especially when we get older. None of us want to be a burden to our children yet we don’t want to be their life just a part of it. I went through with my mom. She had to have her legs amputated and was going to take one of her arms off but my Dad would not let them and she passed away. Even tho what happens we always have a desire to be close to our children. I see children now days that seems their parents are a burden to them. what they don’t stop to think about the the cycle continues and one day they will be old and will want to be with their children. It was so hard on me when I visited my Mother in the nursing home but I am happy that I did for now that she is gone I do not have any regrets. Jesus said to love our father and mother that our days will be long upon this earth. My prayer is when its my time on earth to come to an end that I have lived a life that I can spend eternity with God and the place he has prepared for me.Looking forward to meeting you at the wedding….
If you know some one that has this disease, love them with all your heart. It was not what they ask for,they still love you, be patient with them. Take them riding be sweet to them joke and laugh.
100% agree with this! My mother had always ministered to women in our neighborhood who came crying to her at our kitchen table.
After I got over being angry about her illness, I opened my eyes to what God was doing through her; He was bringing broken & hurting women into the house, still! They were in the form of sweet caretakers for her; women who had never worked for decent people, women who had never seen a family pour love out on each other. When one caretaker cried after my son prayed “God is great” prayer over a McDonald’s Happy Meal, I was stunned when she said “I’ve never been in a house where children prayed.” That was the day I knew that God had a plan, and I walked in trust & peace. He took her on March 4, 2009 when her work here was done.
Molly, what a beautiful piece of writing. I understand what the writer is signing. I had four uncles diagnosed with dementia and it was so hard to see them go down physically every day. They lived in a shell of a body. The shame of this disease is it can hit you all at once. Thank you for sharing this article with me. Teresa Knott
How beutiful. I agree with every word
I understand the way you feel and I am glad that you find strength in your beliefs. With no reflection on your life or your mothers life – I do not feel that way. After watching loved ones lose the battle and then die – I have no intention of living that way or dying that way. I will not burden my children with my care and I will not live in that confusion. I do not believe that God challenges us – I believe he as sad to see us in that condition as we are. I am much more afraid of living with the later stages of dementia than I am of going home
Deborah, this is very much how I feel. Jt is just the worst disease ever.
I agree
I really needed to read this. I am going through this at the present time with my mom who is almost 103 years old. I am trying to not question why this would happen to such a Godly woman. She has always been there for everyone else.
A great many things to think about. Gives you a whole new perspective on the loved ones going through this terrible disease.
Awesome post! My family just said a final good-bye to my dad. He had Alzheimer’s for many years and the last six months he was in skilled care were hard on us but still he was a living, breathing human being deserving the best care possible. I, too, blog and wrote about the initial transition to skilled care here http://dustinmycoffee.blogspot.com/2016/09/dont-you-know-who-you-are-alzheimers.html and then about his last days in hospice here http://dustinmycoffee.blogspot.com/2017/02/from-heart-valentines-day-tribute-in.html I think it is good to share our stories with one another and to affirm the value of life no matter the disease we get.
What a wonderful group of people.kudos to you. And your mothers for having raised you!
Thank you! I’m the daughter of a kind and generous man, my Dad, who is at this moment dealing with it. He has always been there for his family and friends, sacrifices for the needs of others and never asked for anything in return. His personality is changing and he is becoming impatient and demanding and it’s hard for me. He has never depended on anyone else and now he needs my Mom and me more and more. I have never once thought of just shooting him. He has a severe heart problem and I have prayed that God would take him gently in his sleep and he almost died three months ago. I am not praying for my sake because I love my Daddy very much but for his- to spare him. Thanks for telling the world how we feel.
I am so sad to hear the phrase ” just shoot them/me”. It is not meant literally I know but sounds so painful/tragic.. just to pass in their
Sleep peacefully in their bed is what I think is a blessing for patient and loved ones left
Behind..that’s what I’d wish for myself at home.. I’m 83 and still active and I have seen many of my friends n family members locked behind doors with strangers to never come outside again no matter their stature in life
Had been …mental illness/Alzheimer’s disease
Is a living hell for all.. so sad for family n loved ones..🙏🙏
As hard as it was to watch my father go through Alzheimer’s, I would not trade one day of his last few months for anything. He was still my sweet Daddy until the very end. I sang hymns and my husband and I reminisced on good times together on his last afternoon. I miss him so much .
I can relate to this so much. My mom developed Alzheimer’s when she was 58, the age I am now. I prayed that she would die before we had to put her in a nursing home. My dad cared for her for six years and it was hard. I live 200 miles away. However, she lived her last four years in a nursing home. My dad visited every day and developed friends there and had a sense of purpose. There still was meaning in her life. I have a long term care policy on myself to help alleviate some of the burden. I am going to repeat the wise words of this article to my children and husband.
That is very true. I lost my Momma on January 31, 2017. Her Dad had this and she would pray she would never get dementia. I watched my Momma go from a woman who could do anything to a bed bound Momma that couldn’t feed herself or anything for herself. I prayed and was happy to take care of her as she was always there for me. In the end it was a blessing as bad as that sounds as she hurt so bad when you needed to adjust her in the bed and she developed a kidney ulcer before she died. I would sing to her and tell her about things going on. I was so thankful for the brief moments when suhe knew who I was. Prayers for strength and comfort for anyone with a family member going thru this. You will go thru every emotion there is many times.
I’m so very sorry for your loss, Sherry. I just lost my Mama on December 12, 2016. We miss her so much, but we know she is with Jesus and at peace now. God gave grace to get us through it all. And we know we will be with her again someday.
May God bless and comfort you.
~Cheryl~
Every word brought something back for me. First came dementia then full blown Alzheimers. We had been married 63 years, 1 month and 16 days when we were forced to take our kids mom and my wife to assisted living. Six months and 3 days later she lost her battle and is now in His loving arms where she waits for me. I never missed a day, while she was in assisted living, to be with her as much as possible. I’d wheel her to the front porch and we’d have a little picnic with tea and cookies and hold hands. She never lost the sparkle in her eyes and as I told her how much I dearly loved her I could see the response in her eyes that told me “I love you too”. It does’t get any easier for me after over 3 months without her. I don’t know if it ever will. Every where I go – everything I do – every song I hear – reminds me of her. I dream of her often. If it wasn’t for my faith I don’t know how Id make it. I lean on Him daily.
Tom, I’m so sorry for your loss. My mom went home to be with the Lord on December 12, 2016. My parents were married 62 years, and Dad and I miss her so much now. With help we were able to keep her in her own home until she passed. We are so grateful for the time we had with her. I’m writing now in this blog about grieving. It is so hard. What would we do without our faith? It sounds like you were a wonderful husband to your wife and continued to bless her and make memories with her. How sweet that you could have little picnics with her, too. What a comfort to know our loved ones are with Jesus and we will be with them again. Meanwhile, we look to Him for grace and strength for each day. May He comfort you now.
~Cheryl~
Cheryl – Thank you so much. May God bless you and comfort you
Exact description of feeling and heartbreak after losing my husband last spring. EVERYTHING reminds me of him, Thought I knew grief but only had a small clue.
I like this article. I know that even just before the disease helped to cause my Daddy’s death, he knew me. I could see in his eyes and his hand clasp that he knew we had a good relationship somewhere, somehow. And in the ED when they were trying to get blood from him, he calmed when I held his arm for them and softly talked to him about when I was younger and we did things together. It is difficult for me to imagine my children having to do these things for me, but I know it would be in love.
This is beautiful!!!!!!!
Thank you, Charlotte!
These were my sentiments as I watch my mother struggle for almost 14 years with this disease. There were times that I prayed that God take her home, but I realized if she was still here, there was a reason. Some of the best lessons of my life my mother taught me in her final years, and my best year as a daughter was the year I said my final goodbye to my dad and my mom within 3 weeks of each other.
I am sliding into the tunnel myself. I am not happy about it, but I will be in the care of a love ing family & a good God.
I am sorry, Ron. It must be so hard receiving the diagnosis and knowing what is ahead. My husband has Lewy Body Dementia with Parkinsonism Syndrom…a little different from Alzheimer’s, but still a dreadful diagnosis. God bless you and guide you and your loved ones on this journey.
My worst fear ever. I watched my mother who was a vibrant outgoing very intelligent women dwindle to someone who completely lust her way. On top of this dreadful disease she also had two brain aneurysms. I was able to keep her home with me for nine years. I was truly blessed with two wonderful women who came in and helped me take care of her. They treated her with the love and dignity that she so deserved. As hard as it was and most days it was extremely hard.. I’m thankful that I was able to do this for her. We sang,, we laughed… we read books and worked puzzles as best she could and most days I cried… for the woman I knew and loved. But…. it was a gift.. a gift from God that I could do this lady thing for my mother. I was with her till she took her dying breath and peacefulness that came over her was magical. Skip ahead several years later… I’m now taking care of my 93 year old aunt with the same disease. We spend many hours coloring!! God is good and I’m blessed. Many prayers for other care givers!!!
B Ricr, Your post brought tears to my eyes. I helped care for my mom in her home, until she took her last breath. I was amazed at the peacefulness that came over her, also. And now my 94 year old mother-in-law, who also has Alzheimer’s, lives with us. She has recently taken up coloring and is enjoying it, as I do, too. Thank you for sharing your story and for your loving example.
~Cheryl~
In February 2016, I moved in with my Dad to become his live-in caregiver. He had good days and bad days . . . often called me by my mother’s name, even on the good days. He watched the westerns channel all day long, while I cleaned the house, made his many doctors appointments, administered his many medications, laundry, cooking, and making sure he didn’t need anything. We talked about everything under the sun – my childhood, his childhood, my mother, his physical ailments, but never about his Alzheimer’s, except once. He asked me what would happen if he forgot who I was. I said it didn’t matter, because I would still know him. He passed away December 23rd, 2016. I will always treasure the days I spent with him.
Wow, Pam! Thank you for sharing your story and example. I’m so sorry for your loss. My mom passed on December 12, 2016. I’m grieving, but so thankful for all the memories I made with her, too. May God comfort and bless you and give you grace for each day.
~Cheryl~
Love it
Beautiful, my mother past away with Alzhemier’s, I cherished my time with her. Even though it was one of the hardest times of my life, the heart always knows love and my mother was loved and still is.
Amen! Thank you, Linda!
Such a sweet reminder of how precious the soul under the name!
This is so touching and just what I needed to hear. My mom just passed away 1 1/2 weeks ago on March 4, 2017. It hurt so bad and my heart still aches for her. Her mother and uncle had it too, it is such a sad disease. She lived in a nursing home for 7 years. I do not want to live like that either. I just pray that my kids will be there for me and do what is best for me. I don’t want to be a burden on them.
I’m so sorry for your loss, Nancy. May God comfort you and give you grace.
My mother has Alzheimer’s and this is a beautifully written reflection and words hope. God has a plan for us all, even those of us that have dementia. Thank you for your thoughts.
How beautiful! My sister and I are going to see our oldest sister tomorrow who is in the later stages of AD. Thank you for this beautiful reminder.
Wow -I have never read something that hit home like this. My mom passed away two years ago after having Alzheimers for at least ten years. My sister and I shared in all the decisions of her and our father’s care, he passed several years before her. Your article was a much needed affirmation of those decisions. We did have to place them both in an assisted living and later she was in several nursing homes, but we researched, prayed and thought about every move. We visited often, taking grandchildren when possible. We tried to include her in family gatherings, even if she just sat in her wheelchair. We laughed a lot at things she said and did, when she was still communicating, only because otherwise we would have been crying. And towards the end I longed to hear her say just one more time that she loved me, but had to just trust that she did. My sister and I joke about us getting the dreadful disease, telling our kids to get us adjoining rooms in the nursing home. But I agree, don’t throw me away. I read your article to my son and we both were crying, especially about the chocolate – although I specify dark chocolate. My sister & I spoke at my mom’s funeral, telling of all her achievements and lessons she taught us – even till the end. Thank you again and God Bless.
I am a caregiver for my husband who has Lewy Body Dementia and Parkinsonism Syndrome. It is so hard sometimes, but God is always with us. God and love, laughter, respect.
Thank you for this lovely post. God bless.
I love this this about jus being there n drawing closer to God though our hard time in life n not forgetting about r elderly
This is a beautiful essay. My mother is in the final stages of Dementia and there is truth and love in your words. It is so important to tell this to your children (or potential caregivers) so that they can inhabit this role with love and patience instead of anger and guilt. God bless you.
This is the nicest thing I have ever read related to dealing with a family member that is stricken with Alz Disease, it is beautifully ,passionately, and wisely written. Thank you.
Thank YOU, Betty. That is one of the nicest comments I’ve ever received. Thank you for the encouragement. ~Cheryl~
Our Lord God see and He cares: Remember Jesus said,
” if you show kindness to the least
of His children, you have done it to me”.
Dear Lord God please give Your strength, Your joy and Your courage to those who are walking through this valley of Alzheimers.
“It’s never for nothing”.
The brain is broke but the heart ❤️ is not…
This is so well said. I have been thru alz with my mother and i cherished every day with her until the very end. God has a plan and we must go with it. Enjoy the time you have with your loved one. For there will be a day when they are no longer and you can say you were there..
What a lovely perspective. My mom has dementia and since my father just passed we are learning to care for her on a daily basis. We try to make everyday fun for her. We try to make her laugh everyday like my Dad did. We dress her up and make sure she looks beautiful. We have sleep overs and do family dinners. Some days are not as good as others but we are making the most of them all. That’s for giving us a new perspective. I will share this with my sister’s. God bless everyone touched by dementia and Alzheimer’s.
My dad and his two sisters had dementia…….hard road to travel……hardest road yet….although I experienced patience first hand…..sometimes I’d be crying so hard I’d just have to leave….get to the door and turn around..go back..that’s just what you do……the greatest gift of all was that total understanding of unconditional love……..most think when speech has left some they don’t know..believe me….what I have experienced…they still do……..
With love and in honor of the memories of my dear family (and my husband’s) who were taken by Alzheimer’s and Vascular Dementia, and may be your n generations to be:
Merton H., Olive H., Ben W., Birdie W., Trudy W., Jean S., Glenn P., Opal P., Pearl P., Billy P., Wally G., Barbara G., and many more
Wise advice.
AMEN- Every word of this is true and hard and sweet. ALZ is is a blessing and a heartache. I love my Mom❤
Beautiful, refreshing
I dealt with these same issues with my sweet Mama!! She was under Hospice and while they were nice they felt her life was over and she should never under any circumstances go to the hospital. I’ll never forget taking her for chest pain. While waiting several Hospice ‘people’ waited outside her door. What are you trying to accomplish, they asked. I told them that she is still alive and though she has Alzheimer’s it doesn’t mean we shouldn’t treat her if it’s treatable. They were upset that I brought her. They and the doctor came down hard on me telling me she has no quality of life and I should stop subjecting her to all these tests. They won. I took my Mama home and the next morning she awoke with severe leg pain. She begged me to take her to the doctor. I called the nurse who said she would come when she could. Morphine was given with no relief. More morphine and haldol given. Mama finally rested. Something happened and she never woke again. She died three days later! I will always blame myself for not taking her to the hospital. Maybe she had a clot in her leg and they could have helped her?!?! I pray you love your Mama just as she loved you! Enjoy each moment because all too soon it will be over!!
Sheila, I’m so sorry. Sounds like such a very hard situation. My mother recently passed away. I think there are often some “If only I’d done or not done…” thoughts. I know I have some, too. I comfort myself with the thoughts that I was praying for Mom and for wisdom, and many others were praying also, and I did the best I knew at the time. My mom was in hospice care also, which meant by definition that death was coming soon. Maybe we could have done something differently so they would have been with us a little while longer, or maybe the hospital and medical procedures would have stressed them more, or exposed them to a serious virus or infection, and brought death even quicker. How can we really know? I do know my mom is at peace with Jesus now and that she wouldn’t want me to be worried about decisions made along the way. I trust your Mama wouldn’t want you to be either. You obviously love her and were doing the best you knew. I pray that God gives you grace and comfort.
I was honored to help some friends care for their parents. For three years we rotated a week at a time staying with them at night (we were lucky to have an awesome woman for the day shift). When their dad passed–on their 65th wedding anniversary–their mom was too far gone to “know” he was gone. But she knew. Just as she knew she loved us, even though she no longer knew our names. Her love shone through her eyes. We all took turns holding her hand. It seemed to comfort and content her. We grew closer as a family unit as we worked together to provide the best care possible. We finally lost her physically two years ago. It was sad but also joyful as we knew she was no longer struggling and lost. I miss her and those days we worked as a team. We’ve gone back to our separate lives but I will always be glad for the opportunity to be part of that time.
Wow, Kathy! Thank you for sharing your story. You are inspiring! God bless you. ~Cheryl
I lost my mother to this horrible disease. I spoke of things she had told me of her childhood and she would laugh and say I remember that. Then she got to the stage of not talking. It was job to cut her hair. She wiggled and squirmed and the Lord laid it on my heart to sing her favorite gospel hymn. When I started singing it guess what happened? She settled down and started singing with me — every word. That’s when I realized the affect that music had on those with this disease and possibly other diseases. I have used music on others with the same disease who had been crying for hours and they immediately stopped crying and started singing with me. I lost my mom in January, 1996 and still miss her today.
Beautiful Jane. Your mom our nancy was a besuited person has earned a place in heaven. Treasure our visits with her. She was in there. She has a beautiful loving family. She is very proud of all of yolove you auntie Karen
Being in this with you; I myself watched my dad go thought this until he “went to be with the father”. Now at age 56 I am starting to show lots of the same trends he had and have been told I am in early stage. I just pray my grandsons will be old enough when I don’t remember them any longer– that they can understand. It s hard at ANY age for your parent not to know who you are, it was for me and I was an adult. And there is a movie called “I am still Anna” that is about this and is a wonderful thing for people to watch and it will help them to understand what their loved one is going through. Even though I cried all the way through it, it still is worth watching. It just hit home with me so much I couldn’t hold the tears back, knowing this is what is waiting for me if I live long enough. Prays for anyone having to watch a family member go through this and prayers for those having to go through it themselves. It is a VERY scarey place to be.