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

So beautifully said! I prayed my mother would go to sleep and not wake up, not because of her dementia, but because I didn’t want her to be afraid. You are right about the funny, quirky things that Momna said…she had some real doozies. We loved the times we were with her, and we would see a glimpse of the momma from our childhood. We lost her on Feb. 7, 2016, with God answering our prayer! She went to sleep here and woke up seeing her Lord and Saviour face to face! We were so blessed to have the mother God gave us…blessed to have her here for 89 years!!! Thank you for your beautiful words!!! God bless you!!

This was a beautiful post. I was struck by Bryan’s comment of having a “Ministry of presence.” Just sit and hold my hand. Thank you for sharing these precious thoughts.

Such a sweet tribute! I am not such a good writer, but those thoughts & actions were exactly how I treated my Mom while we cared for her in our home with AD. I prayed for God to show me what He wanted me to learn thru my mother’s disease. Patience, Compassion, Long- suffering, more wisdom, letting go of ‘what I want’, for what He wanted for me were some of the things He had in mind to teach me. I was also blessed to be able to care for others with AD in my home as well; thereby helping other families process this disease.
It was not easy, but God didn’t promise us a life of ease, but He did promise He would walk with us every step of the way…& I can honestly say, HE DID.

I work as the Director of Life Engagement for a memory care community. My job is keep bringing joy and purpose into the lives of people with Alzheimer’s and other forms of dementia. Many people have told me that they can see it is a calling for me and I absolutely agree. I have the absolute pleasure of caring for our 42 residents everyday and loving them through their disease. I have 42 grandmas and grandpas. Their family becomes our family. I have one particular residents who’s daughter comes in and asks him to play the piano with her every time she visits. It’s something they used to do together when she was little and although he can barely press the keys now she radiates joy each time they sit on the piano bench together. Each of my residents enriches my life every single day. They give me the gift of humor, of patience, and of humility. Because I am humbled to have been given the gift of loving these people to the end. I am humbled by the trust these families put in me to care for their husbands, wives, mothers, and fathers the way they each would if they could. Each smile brings me elation. Each memory I can coax from them brings me fulfillment. They absolutely still have a purpose, because they have given me one.

Wonderful sentiments. Made me cry, but this is exactly what I’d like to say to MY kids. Thanks to this writer for putting MY feelings into words. God bless you and your dear mother.

As a person and Christian that knows God has a purpose for all things and had to watch her Mom go through Alzheimer’s I disagree. My Mom was diagnosed at 64, and passed at 72. My Mom would have been mortified by her appearance and quality of life. To see your Mom, become unable to button her shirt, to look in a mirror as if looking at a stranger, to looking at you as a stranger, to wearing an Adult diaper. Then to have to chg here because the high end nursing home facility she was placed in was understaffed and she had somehow tried to take it off and had fesis all over her hands are memories I will never forget, and my last memories. Yes I visited, sang to her, held her hand, took my daughter to see her but those are not the things I remember. Would I burden my children with asking them to just take me out and shoot me, no. I ask them to pray now as do I that God will spare me and my children that horrible road called Alzheimer’s! But I also don’t want them living with those memories of me wasting away and not remembering them! I would prefer they say there goodbyes go live there life to the fullest and leave me in Gods hands!

Awesome. I too cared for my Papa who came to us at 92, blind, diabetic, and with dementia. He was with us for 2 1/2 years, and we cared for him in our home. Everything you said, I discovered. I actually wrote a book, Life Lessons From My “Papa”. It was the hardest time of our lives, but one of the most rewarding and meaningful. God gives grace to do the impossible. Thanks for sharing.

I find this article a little one-sided with the positive notion that someone with dementia “still has purpose in life” by God and has sweet times of love and joy. While the slightest part of that may be true, I believe more that the person with dementia experiences far more times of frustration, confusion, and physical pain they cannot express and are powerless to control it. Seems the article implies there are moments of joy and the rest of the time is neutral. Reality would seem to be very different with patients falling frequently with bruising, and non-stop confusion. Seems very torturous, not lovingly joyful.

Take them out and shoot them? Of course not. That’s merely a phrase to imply to the caregivers to “don’t let me suffer like that.” Parents don’t say to their kids….”Let me experience the infinitesimal moments of joy while agonizing through the rest of the day.” Seems silly to phrase it that way, right? But, isn’t that what usually ends up happening because we can’t allow them to pass? We need to let them pass on naturally, peacefully, and respectfully. Just because we have the medical knowledge and legal power to keep them “functioning” (as opposed to “living”) doesn’t mean we should be exercising it.

I love my mother. It’s that love for her that allows me to let her go. The disease seems more like hell on earth, so why are we holding her back from transcending into Heaven? I understand that caregivers want to see the positive in patients, but hoping for those rare sparks in time isn’t a cure nor is it a long term strategy. There’s a difference between offering quality of life and simply comforting against misery. When we’ve reached the latter, it’s time to let go.

On a selfish note, my mother taught me some of the greatest qualities of humanity. I can only repay her now with teaching those traits to my children. If there was ever an angel on earth, she had to be one of them. To see that God allows her to continue on in a zombie like state not only makes me question my faith, but also pains me to see how such a wonderful person could be dealt such a horrible hand to end her life. I *will* let her go, for her sake and mine.

Very well said! Love them through this! I heard it said, ” the only thing that they will remember is the love.” So love them well. while you still have them with you to love.

You have beautifully put into words what I also am experiencing with my wonderful husband of 52 years. Seven years ago I almost died several times as a result of liver failure. But to the disbelief of the doctors and medical staff, I not only survived but I am the full time caregiver of my precious husband. He came daily through those 5 1/2 months to be with me while I was hospitalized and so gravely ill. I saw the toll it took on him and our children as they stood helplessly by trying to care for me the best they could. It was their incredible love and devotion that got me through but most of all God’s loving grace and guidance through family and friends and even strangers, whom He sent at just the right time to help me. The prayers of so many including a young man who decided one night not to go out with his friends after working at the hospital and escorting me for more x-rays proceedures. Instead he told me that God placed a desire in his heart to go to his church that evening and have his congregation pray for healing for me. This was a young single man who had an opportunity to go out with his friends and have a fun social night but who chose to pray for me, who he barely knew and to ask others to do so also. I believe his prayers and the many prayers of others gave me the strength and encouragement to ask God to spare me so that I could take care of my husband, whom I saw drastically changing before my eyes while I was ill. God not only heard our prayers but gives me the hope, patience, love, strength, and forbearance and guidance to help my husband each new day. Is it tough to do? Yes, it is! But with God it is possible to do even with my physical disabilities. We have days of frustration, moments of deep sorrow and sometimes tears, days of deep exhaustion but we also have days of laughter, great love, joy and sharing. I lovingly push my husband to stretch himself physically, mentally, and socially. It’s not always easy but it is very rewarding afterwards for those moments he can recall or remember even if I need to help him to recall by piecing together moment by moment of what we had just shared together. I use several dry-erase boards that I write today’s date, day and what we may be doing or celebrating and place one on the dresser, one in the living room and one in the kitchen and someitmes I still have to tell him but that’s ok. I even have us going back up to our camper this summer even though he didn’t remember it nor the neighbors he knew and loved for so long but after several weeks of going and finding what makes him more comfortable (like a lift chair same as the one at home), he now really enjoys going and visiting the areas we always went to before. Each time is a new experience for him and for me. We even rented a golf cart after taking a boat to go to Put-N-Bay Iseland which I didn’t think was possible for us to be able to do. We both had a wonderful time and people were so wonderful and caring to us without knowing he has A.D. but could see our physical problems and were willing to help us out. Being out in public takes a lot of patience and dilligence on my part and that of those with us but it is still so worth all the effort. Each day I thank God for what we DO have and ask Him to help me with what we don’t have in the way He knows best. My husband is still able to pray with me and often has for me when he sees I am not well. We are so blessed and I am learning new things each new day. He answered my prayer when I asked Him to spare my life so that I could take care of my husband! Thank You, God!!! And thank you for sharing the thoughts of my heart!

Love and prayers,
Carol

How beautiful!! My Mom never spoke a word in her final years. Through her notes in her Bible she continued to teach me and fill me with wisdom God had given her years before. I never doubted Mom didn’t know me in her final years. Her face would soften when I sat next to her and no matter how hectic my day was holding her hand brought me comfort. Without those final years I would not have witnessed the sacrificial love my Dad had for Mom. I would not have seen how to suffer and finish well. Gods grace is sufficient. He does supply all you need and as His word says, not a moment sooner. While I would have loved for my Mom to have been here for those special moments in life, the lessons learned are the ones she wanted me to learn and pass on to the next generation. Her favorite line was “see you up there”. I look forward to that day. So do my kids. What an honor and privilege to care for the person who cared so much for me. Your words are precious to your kids. Keep looking up.

Thank you, Cheryl for this blog. I share your convictions.
I remember when I was 12 or 13 my mom and dad had to move her mother in with us because she had dementia. At the time, my dad’s grandmother was living with us as well; at 95 she was in good physical and mental health. We called her Mamie. We called mom’s mom Nannie.When Nannie was in the last stages of dementia I was 16. Mom was a surgical nurse, so she knew what to do and how to treat the bed sores, etc. When my brother and I were helping her one day, mom looked at us and said, “listen to what I am telling you. When I get to the point that I cannot do ANYTHING for myself and you have to do it all, please don’t try to keep me at home. Put me in a nursing home where the professionals can take care of me.” She knew that we were not going to be nurses and did not want us to feel guilty for not keeping her at home.

Things worked out so that we were able to take care of Mom until we had to put her in the hospital in January of this year. She had been in the hospital 3 days when the doctor told us we needed to contact hospice. Although she had been alert and able to answer questions, we were not surprised. When the hospice counselor met with us and gave us the option of keeping her at home with a hospice nurse coming in daily or taking her to the hospice facility, we remembered what Mom had told us. Putting her in the facility at that point was the right thing to do. When I asked the counselor about how long we could expect her to last, she said maybe a week but probably just a few days. She was there for 2 weeks. Even though she was unresponsive at this point, we spent those 2 weeks telling her how much we loved her and appreciated her. We laughed as we told stories of growing up and even told a few jokes. We knew she was hearing all of that.

The night she moved to her eternal home, we were all by her side, but she just wouldn’t let go even though we told her we would be okay. Finally, my brothers asked me if I was going to stay the night. (I had stayed the night before because I had taken some time off to stay with her.) I said that I felt like I needed to go home for the night and get some rest. My older brother invited me to go have dinner with them, so I accepted the invitation. We all kissed her and told her we loved her and would see her later. Three minutes after we left, she took her final breath with the hospice nurse by her side. That is how she wanted it. She waited until she knew we were gone. No regrets, no guilt…we will see her again. I thank my God for Covenant Hospice and their staff.