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 
Reblogged this on Murder, Mayhem and Finding Faith and commented:
This really hits home with me. My grandfather, now my own mother. My grandparents, perhaps.. My mother in law also perhaps…this is very real and very hard on all involved. Kudos to you. Was too touching not to reshare.
Sorry this is impacting so many in your family, Tanya. May God give you grace for the journey. Thank you for re-blogging! ~Cheryl
The writer is right…everything will be better in heaven. Meanwhile if I ever get into those bad stages of Alzhemers, do pray for the Lord to take me there!
We watched our father suffer through until the end. I truly believe in their subconscious and heart they know who we are. They have those brief moments of clarity that remind us they are our loved ones and should not be labeled with this terrible disease. Love them like they deserve and most of all respect their dignity and be their voice.
Well said, Andrea! Thank you!
I don’t agree with you at all. After watching my dear mother-in-law waste away, I would never want my children to watch me or their dad the same way. Alzheimer’s is a long and sad good-bye. If faced with that diagnosis I would choose to end my own life. One of the last things my mother-in-law said to me, was “I hope this never happens to you.” This was not part of God’s plan, it is a cruel disease that causes hardship and financial ruin to many families. If she could have seen herself she would have been horrified. If I can’t feed, dress and toilet myself, I would rather be dead. My husband and I have discussed this for years and we are in agreement, we won’t put our kids through that. We have seen the pain and we will choose another path. Dying is a part of life and I believe in eternal life and don’t think it is suffering here on earth benefits anyone. My God is a forgiving God and will understand.
I believe only God has the right to end a life. It is very hard to watch my mother decline. We are working with hospice right now. But I treasure the sweet moments I have with her, and the faith and character that this challenge is building in my family, and wouldn’t cheat us out of a minute of it. I’m amazed at how my kids have stepped up and served their grandparents and the maturity and love and servant hearts I’m seeing grow in them! Life isn’t about everything being easy and pleasant. Life is about glorifying God through the good and the bad. Life is about loving the people He puts in our lives no matter what. When it is time for Mama to go to be with the Lord, I will rejoice for her. But it will be His call and His timing. And we will all have His peace as we mourn our own loss.
Amen.
Thank you so much for your caring attitude and faithfulness to your mother! I’ve no doubt that God’s blessing will support you through this. My prayers are also with you and your family.
Thank you so much, Beth! You warm my heart! ~Cheryl
I agree. Only God can take a life. After several attempts I made taking my own life someone told me to give up that I was no good at it. I have found that though I was close to death five times, the Lord had other plans. PTL, He healed me from major depression so I can be a blessing to others going through it. Btw my dad died of Alzheimer’s 4 years ago. He would not have chosen that but it brought out the best in others who were there for him.
I’m so glad you didn’t succeed, Laurie, and that God healed you. Thank you for sharing your story and for using your experiences to bless others. I’m so sorry about your dad, but I really appreciate your last sentence. Wow! God bless you! ~Cheryl
Well stated. This has been our experience as well with my mom-in-law. It was a time of building our faith, family loyalties and trust in our Lord. There were some miraculous moments when we were reminded of God’s presence and goodness. Those, we will forever treasure. “Trust in the Lord with all your heart and lean not on your own understanding” became our guiding light. We are grateful for the time God loaned us “Mom” and know we will be together again.
Love this, Sheryl! Thank you for sharing your story and example! ~Cheryl
I agree Chermor, I’ve always thought that it would be better not to be here than suffer this disease. My Mother. Has had Alzheimer’s for several y ears and lives in another city. My family has been blessed so that. She has bee n cared for beautifully by sitters and family. Once she fell and looked like she had died and I realized then that I. Wanted he on this earth as long as God would let her stay with us. I don’t get to see her as much as I want because I can not drive but when I do see her, it is a sweet time. I like to lay down on the bed next to her chair and just look at her when she tires of conversation because I know she will not always be with us. It is such a blessing compared to the awful shock of losing. Loved one unexpectantly. It is a ” long goodbye”, but if I could choose, this feels better.
Dixie, I’m glad you came to that realization before it was too late and that you are able to treasure your rimes with your mother. May God bless you as you serve her. ~Cheryl
Well said, I wouldn’t wish this on anyone or any family but, it does strengthen family bonds among the caregivers. It is comforting to share the memories. My Mom suffered this for years not knowing any of us but, on her deathbed when I told her it was OK to go she looked me straight in the eye and asked who would console our sister Linda who lived with her. So, she was in there all this time. God gave us this gift in the end of a long journey.
Wow! That is a gift!! I’m sorry for your loss, Kathy. Thank you for sharing your touching story! ~Cheryl
That is so beautiful, and I so admire you. Totally unrelated, my son came close to death 17 days old, while we were in the ICU I knew I had to be strong and somehow this pain would help me help someone else. He made it, apparently it was not his time (thank God). What you said about glorifying God through the good and bad, it’s so true.
How scary, Michelle! I’m thankful with you that your son made it. May God continue to give you grace as you glorify Him! ~Cheryl
Amen!
Chermor, I hope I have the grace to feel this way if God ever adds this to my or my loved ones plate.
We are going through that with my sweet husband, I was recently diagnosed as well. My mother died from this disease and I wouldn’t want to wish away a day of her precious life. My husband is advancing quickly now and I pray I will be able to care for him longer before it takes it’s toll on me. But our sweet children and grandchildren are right here helping, and will lovingly care for us until we go home.
Oh Shirley–what a beautiful perspective you have! I’m so sorry for your difficult journey, but thankful for the example you are. May God bless you and give you grace and strength. ~Cheryl
I agree. Very long and heartbreaking goodbye.
Thank you for being brave enough to post another opinion. As an RN, I believe that these decisions are best made by the people involved. The idea that a family needs to suffer through watching a loved one deteriorate to a point where there is no connection except for grief and guilt seems cruel to me. And the opinion that God is the only One who has the right to end a life seems reasonable enough but ONLY if no one intervenes to prolong a life that He would otherwise end. These decisions are difficult enough for a family to go through without having to bear the judgement of others.
Dear friend, for that I feel you are. As horrible as this disease is, there is beauty in life no matter it’s form. Your mother chose life. She probably knew what the disease is like. It’s not new. She chose to live and I believe she would want you to also.
I understand the pain of seeing your children care for you. I honestly hate it. Ive had a brain tumor and then a debilitating autoimmune disease. My mother also had a brain tumor, my father had a stoke and my aunt had dementia. I cared for them all. I tell you this only to assure you I do understand both sides of this. One of the worst parts of my illnesses is knowing all to well what this means for my family. Yet, it is God’s path for my family and for me. I want to learn all God has for me. To understand, receive and give grace. To understand and learn humility. To learn to receive without being able to return the favor. To understand that this is filled with blessings and growth for my family. Give grace, gain humility, serve knowing they get nothing in return. To glorify God in their lives. Comfort others with the comfort they receive. I want this cup taken away. God has chosen otherwise. Scripture says we will be here until we have fulfilled our purpose in our own generation. Your mother fulfilled hers and so shall we if we choose to. God sweetly gives us the choice. Free will. He teaches us this responsibility if we choose to learn it. I encourage you to choose life no matter what it holds for you. I pray immense blessings and heart healing for you and all your family.
Much much love, Lottie
This article is sweet and sentimental. It makes a very tragic awful condition seem like it’s bearable. But I agree with this persons comment. It is not a situation you or anyone you love should have to endure. I watch my mom who has aphasia (not Alzheimers). She is trapped inside and still knows us and what she has lost. She can’t speak, write, or read. Her strength is fading and needs help dressing, standing, and getting to the toilet. She cries when anyone sends her a card or tells her they love her. This is so very sad to watch her endure hell on earth.
My family and I memorialized my mother this past Saturday, April 2. As always, after the fact there are so many conversations you wish you had. But it’s ok; mom loved us and she knew we loved her. It would not cross our mind to have her anywhere else but home with us. I had a stair lift installed in my home and it was used less than a dozen times over 9 months. An expense that I simply said “thank you God for affording me the opportunity to protect and serve my mother”. When she was too frail to remain in my home, I took her to hers, it is much smaller and no stairs to continue to deal with. It was also closer to her friends so they could stop by for short visits. Finally when hospice care was called in, we were ready and excepting of what may come to follow. But selfishly, we would love to have our mommy back. Knowing mom and dad are together again, makes me happy. For me and my sisters…. and then there were four.
Thank you for sharing your story and example, Gloria. May God comfort you in your loss.
Sadly, there are many sides to Alzheimer’s Disease. Not every patient is living in a happy place in their minds. Many years ago as a young nursing student I had two totally different examples of this disease at the same time, patients I easily learned to care for. I like to think God placed me in this position so I could better understand. One was an 80-year-old man I’ll call John. The other a 70-year-old woman I’ll call Jane. John, a lifelong farmer, was in a happy, beautiful place with the disease. He always smiled, was always happy. When I would take him for walks in the rectangular patient facility he would look around and point to his farm fields as we walked. He saw the sun shining making his corn grow tall; his wheat was golden and ready for harvest. It was the same each time, each day we walked. He was that way all day, every day. Sadly Jane, however, was the complete opposite. She bedridden and not in a happy place; did not see the sunshine. Did not see or remember happy days. When attending to Jane, she would often cry and “speak” to someone from her past life, a man she loved. She would ask, “Why? Why? Why her? Why did you no longer love me? What did I do? Please come back. How could you do this to me and the children?” This went on every day during her waking hours. It was the saddest thing in my young life Inhad experienced. I learned later that her husband had left her and their young children for another woman. It tormented Jane who raised their children on her own. Sadly it tormented her when Alzheimer’s came the final years of her life. So I never wonder when someone says the things they say about a loved one with the disease. They may have heard the their over one cry over bad times in their life. I hope if I or a loved one gets this disease their memories will be like John’s. But if they’re like Jane’s, God Bless them. And please never judge.
I understand. My mother has changed so much. She was a sweet, happy woman. During this disease she has gone through stages of anger and sadness. She spends hours a day shouting loudly.I bought my dad ear protectors lie they use at gun ranges. Seriously. Mama hollers that she wants her mama. She asks where mama is. She wants to go home. It is not easy. It’s often very, very difficult. But along the challenging journey of these many years there have been many precious moments and memories made and savored. Mama has shared songs and laughter and love with us. God has stretched us and grown us. He has pulled us away from selfishness. He has taught us to serve Him even when it’s hard. He has done amazing things in the life of my children as they have sacrificially served their grandma. God is faithful and can work good out of horrible things. Heaven will be a much better place. And God knows when it’s time to bring His children home. Meanwhile, the sweet thing my dad holds onto is that Mama calms down when she gets in bed at night and cuddles up to his back and puts her arm around him and pats his tummy. All night. And it is precious to him.
Finding this blog has helped me in so many ways. Thank you for sharing this difficult journey, thank you for your faith and thank you for giving an example of how to deal with this with grace. As I have just begun this time of life with mom, and she is quickly traveling down this road, I find it is going to be a heartbreaking, long goodbye.
Thank you for your encouraging words, purpleismyjourney. You bring me to tears. It is a heartbreaking, long goodbye to be sure. But God gives sweet moments and grace along the way. May He bless and encourage you. ~Cheryl
Interesting the various perspective that other individuals shared regarding this post. One thing is for certain, it is a horrible disease. Horrible for the stricken one and horrible for the caregivers (it takes a whole family to give the needed care). Unfortunately the brunt of the caring usually falls on a single individual family member. The toll it takes on that particular caregiver is immeasurable. Blessings accompany the primary caregiver but the toll it takes on her or him to be there 48 hours a day is surreal. The stress and anxiety they experience takes years off their own life. A shout out to those individuals who are called to serve as primary caregivers to family members with dementia alzheimer’s! 🙏🙏🙏
Reblogged this on example50298 and commented:
This hits home for me in so many ways….
My mother had AZ and was nearly blind from macular degeneration. She couldn’t walk and was incontinent. She was absolutely miserable. She passed from either a stroke or heart attack. I have always thought that she was spared that “long goodbye”. She always told us to “be happy for her” when it happened. I miss her terribly but she wasn’t the woman who raised me any more.
My dad had Alzheimer’s. It is one of the cruelest diseases ever. I will write my kids a letter also one day just in case. I miss my daddy so much. The hardest part was when he didn’t know us anymore. I can’t even imagine. I pray that my boys, if they put me in a home, they will come visit unexpectedly so they can make sure I’m being taken care of properly. That’s what we did with my dad.
Thank you, that was a beautiful letter.
I’m sorry for your loss, Tracy. It is so hard. My mom doesn’t know any of us now. I’m clinging to God for His mercies and grace. May God comfort you as you miss your daddy. ~Cheryl
There is a special club for those who have loved ones suffering from Alzheimers. Those not in the club cannot possibly understand our experience. Its not the best club to be in. I appreciate your post. It reminds me I am not alone.
The journey for my family and me has been more difficult than I could have ever imagined- and I have been an administrator in Assisted Livings for 15 years. There are times when I do quietly wish God would take mom home. But, that doesn’t mean I am tired of her, or don’t love her, or that I don’t comb her hair, cut her nails, lotion her thin arms and legs, feed her ice cream practically standing on my head because she is so bent over, or that she doesn’t still mean the world to me. It means my heart aches so badly and that at times I’m overwhelmed with sorrow and that it psychically hurts to her hear call out for her dad with tears streaming down her face. My faith is not shaken. Far from it. My faith has grown tremendously. God has a plan. I’m part of that plan. He understands that I don’t want to see my mom suffer, He understands that it is an exhausting journey. He understand that sometimes I do quietly wish He would take her home. Home with Him will free her from the cruel bonds of Alzheimers.
I understand, Karen. Thank you for sharing your story and for loving your mom. May God give you grace for your journey. ~Cheryl
Such a great article. I run a day program for people with dementia who are still living at home. Each “particpant” is paired up with a companion who spends the day with them and helps them as needed. What we all comment on frequently, is that we get so much more from the “participants” than we give to them. They bless us every day. They give us back more love than we give them. Everyday we learn something from them, even if it is just how to meet a new challenge with grace. The amaze us and bring us joy, especially on those days when we get a glimpse of the person God created them to be. I love this job more than I can say and I am privileged to be working with the participants and for them. Let’s strive to see beyond the disease and see the person God has brought to us.
Wow, Ena! I’m so thankful YOU are running a day program for people with dementia. It sounds like you are the perfect person for the job! God bless you in your ministry! ~Cheryl
This is sooo true, been through it, still can bring trears to my eyes at times, but do know she is herself again.
I have spent nearly 18 years working with people with dementia and Alzheimers, for both larger, nation wide companies and smaller “Eden Alternative” homes. My two cents here is that this woman’s beliefs are appropriate for some, but the beliefs of the people who would rather be dead than go through Alzheimer’s is equally appropriate for others. Saying that does not devalue the life of this woman’s mother anymore than what she says minimizes what other people go through. It’s a personal journey and a personal choice.
To be sure, I have had many residents who still do have moments of joy, who can find some purpose and some comfort. But I’ve also had many who literally have no joy at all. I’ve had many who can find no comfort, even having a belief in God. Because for many people with Alzheimers or dementia, simply being bedridden and unable to chew would be an improvement. How do you point out to a woman she should find comfort in God when her own father no longer recognizes her as his daughter and as a caregiver you just had to pull him off from her because he was trying to grope her? How do you point out to a son who is watching his mother lay in a bed in constant pain because any medication she could take is not effective and she can’t take one that would be effective because of an allergy?
One thing I will adamantly take issue with in this post was this sentence…”Even if I don’t seem to know you, believe in your heart that part of me does”. I had been working in this field for about 3 years and I had a resident named Josie. She was one of those residents who just brought joy to your life. She always seemed to have a smile and she loved to give hugs. She had 3 daughters who each came in regularly to see her. The absolute saddest moment I can recall as a caregiver was the day one of her daughters came in to see her and I went and got Josie for her. Normally Josie met her with hugs and smiles. But that day was the day she forgot who her daughter was and the look of just complete heartbreak on her daughters face when her mom stopped recognizing her and did not want to leave me to go with someone who was now a stranger to her, there is absolutely no way to comfort her daughter.
I have loved every resident I’ve worked with. I hug them, I hold their hands, I bring them chocolate, I visit them even if they have moved somewhere else or I work somewhere else. I currently spend my days off with a woman I used to care for at another facility and I speak to her daughter regularly and give her a place to vent as she watches her mother, who was never a happy woman to begin with and has only gotten worse as her Alzheimer’s progresses. But sometimes, as bad as it sounds, loving them means having thoughts that you wish they would pass. Because not being alive is a far better thing than the suffering they go through while they are alive. The suffering their families go through. I am glad that this woman’s experiences with her mother allow her to still find comfort that her God has a purpose. But for many families dealing with a loved one who has Alzheimer’s, that simply is not an option.
Dana,as the writer of this post, I understand what you are saying. I wrote this several years ago, and now Mama has come to a point where she doesn’t seem to know me at all and seems to have no joy, as she doesn’t smile anymore. But I still disagree with your adamant issue. I still think it’s better to assume/hope Mama DOES know me in some part of her soul and share with her my life and heart. Because that’s what I would want. And who knows what moment she might have a glimpse of clarity? Occasionally she still says, “I love you.” Once in awhile she still says, “I had a little girl.” And I treasure those moments and wouldn’t miss them for the world.
When God is ready to take Mama home, I will rejoice for her even as I mourn my own loss. I know she will be immeasurably better off in heaven with Jesus. But until then, I will do my best to give Mama comfort and give God glory through it all and soak in sweet Mama memories.
I’m grateful for all the love you give your residents, Dana. And even your former residents. You sound like an amazing person–the kind we need working with our loved ones. May God bless you in your work. ~Cheryl
the reason i am adamant about that particular part is maybe believing that on some level your mom still knows who you are works for you and brings you comfort. and thats a wonderful thing. for you. but there are many people watching a loved one progress thru alzheimer’s who can’t and don’t have that belief. and i’ve seen how heartbreaking that is. i can tell you i’d never want either of my kids to ever experience that. THAT terrifies me more than death. and what i would ask you is this. is it better for your mom for you to want to believe that in some part of her soul she still knows who you are? or is it better for you? and i honestly do not mean any disrespect by that. i’ve had to ask many families that because sometimes feelings and beliefs get in the way of whats better. and it’s something only you can answer. i don’t know your moms physical and mental condition and i make no judgments. if you wanting to believe that is better for her, i would absolutely encourage you to hold on to your beliefs. but if its that its better for you…
and i hope you take this with the care that i mean it. watching a loved one decline is bad enough on its own, please don’t feel like i’m trying to add to that. i’ve said many times i love my job but i wish everyday there was no need for it. it’s clear that you love your mom and i wish you both peace.
Dana, I appreciate that you don’t mean any disrespect and I’m not taking anything you say that way. I guess I just don’t understand how it could hurt the person who has dementia if someone believes that they may know more in their soul than they can communicate? Isn’t there more chance that it would help, than hurt the one declining, if people treated them like they still did understand and know?
This week I watched Patricia, a wonderful caregiver we have for my mom, train in a new caregiver. Patricia is always careful to speak respectfully to Mom. Before she does anything she kneels down close to Mom and communicates what is going to happen and asks if she’s ready, etc. And Patricia said to the new caregiver, “Never assume that Nina doesn’t understand.” And I LOVED that. Because, even though Mom probably doesn’t understand, she is being treated with respect as an adult and we’re not assuming that she doesn’t understand. And how can we really know for sure on any day what she knows or doesn’t know? Maybe she’s just lost the words to communicate.
And so if I believe that somewhere in her soul she might still have some connection with me, even though she doesn’t know my name anymore or seem to respond to me, and I share little stories of our family life and I tell her I love her– what if that IS touching some part of her? What if that helps her feel connected and valued and loved? Maybe it doesn’t. But what if it DOES? How could that hurt? Who could that hurt? And I ask with respect, how could that be something to be adamantly against? ~Cheryl
i don’t think it will hurt a person with Alzheimer’s to believe they know more in their soul than they can communicate. if thats how it came across, I wasn’t clear. many times they absolutely know more in their soul than they can communicate. and caregivers absolutely should never assume any resident does not understand. you should never stop telling her stories of family life and never ever stop telling her you love her.
first, what i disagreed with initially wasn’t you wanting to believe that somewhere inside her she still knows who you are. if you can believe that she does, i’d continue to encourage you to believe that because it’ll save you at least from some of the heartache this disease causes. what i disagreed with was the statement ”Even if I don’t seem to know you, believe in your heart that part of me does”. Unfortunately for many people living with a loved one suffering from Alzheimer’s, it isn’t that easy. and i’m sure you didn’t mean it that way but it really does play down the pain felt by people who can’t simply just believe that. kinda like saying you’d just tell them to get as much help as they can because you wouldn’t want them to sacrifice their life plans or family for you. that sounds nice but the reality is those are not options for too many people.
second, the question “is it better for you or better for her” is more of a generic question. not specifically about you wanting to believe she still knows you. it’s clear you love your mom and you have the best intentions for her, you’ll get nothing but respect from me for that. children of people with Alzheimer’s are a lot of times in the horrible position of on the one hand needing time to just be the son or just be the daughter; time to brush her hair and sing to her and tell her family things, but on the other hand they also have to make decisions about care for that person. and sometimes those two things conflict, especially when it comes to beliefs. as the daughter, it’s one thing to want to believe something. but when it comes to decisions about care, is that belief better for her or is it better for you? you clearly have strong faith in your God and as the daughter, that’s a wonderful thing. but when it comes to decisions about care…
Dana, I hear you. Saturday my mom didn’t recognize my daughter in law for the first 30 seconds or so. She has always been a favorite for my mom. Fortunately my d.i.l. has worked in dementia care and didn’t skip a beat and handled it beautifully. Also that day, mom asked me where Frank, my dad, was who passed 19 years ago. I told her he was in Heaven. Mom looked shocked and I felt horrible. What is the right response to this? I know it will come up again.
So thankful for this blog and all of you who respond!
I’ve read that we shouldn’t tell someone with dementia that their loved one is dead if they don’t realize it– that it is too traumatic to keep learning that news freshly all the time. I felt different about being less than honest with mom at first, and would tell her that her parents were in heaven when she asked. She seemed more surprised than upset. But as she continued to decline and would call out,”Mama, where are you?!” so often, I would picture my Grandma in heaven and what she might be doing. I’d answer Mom, “Maybe she’s taking care of the babies.” Because I could totally see Grandma doing that. And that would seem to calm Mom down for a while, anyway.
Purpleismyjourney…unfortunately it probably will. and unfortunately, like with many things with Alzheimer’s, there is no right response. reminding her that he passed away will only hurt both of you over and over and trying to smooth over the situation by pretending he didn’t pass away will more than likely make you feel guilty and a lot of times only starts or feeds into paranoia that people are keeping them from seeing their husband/wife or the husband/wife is out doing something he/she shouldnt be. what they teach in dementia training is redirection. in that situation i simply say “i haven’t seen him” and then immediately start talking about something completely unrelated and that i know that person enjoys. or better yet, if they are physically able to, get them involved in something they enjoy doing. i may have to do that several times in the course of a conversation. but you also have to keep in mind that one of the many difficulties with Alzheimer’s is that a solution that works for one person may not work for another and even with the same person, something that works once isn’t going to work every time. sometimes there is no right way to do something, its a matter of picking the lesser of two evils.
I completely agree with these statements. As my father went further and further down the path of Alzheimer’s he still reacted to a loving touch and a smile, even though he no longer recognized me. He kept his dignity and love of others. His quality of life was not mine to judge.
Thank you, Mickeyb.
I sit here at 2:38 am unable to sleep because I put my mom in the nursing home four days ago due to Alzheimer’s. my dear friend tagged me in this post which could not have been sent at a better time. God was truly in the timing!!! EVERYTHING about this writing I have thought these last four days except the method of my death. (I would prefer assisted suicide, shooting is so messy)!! My precious mom is so lost and it breaks my heart to leave her there. Thank you for sharing the things I should say to my children if/when it’s my turn. God bless all those affected and effected by this horrible decease.
Brenda, I’m so sorry you’re on this difficult journey. It is heartbreaking to see our loved ones go through this.But God does give grace as we trust in Him. I’m thankful to hear He used this post to touch you. You are not alone on this hard road. May God give you comfort, grace and fellowship along the way. ~Cheryl
Thanks for sharing this post and the link to my blog! I’m grateful to hear it touched you! ~Cheryl @ God’s Grace and Mom’s Alzheimer’s
This is beautiful and heart wrenching..
Thank you, Amber.
A poignant perspective. Thank you.
Thank YOU Warren!
So wise and so very perfectly beautiful!
Thank you, Marilyn!
My brother Tommy Love who pastored Wicker St Baptist Church in Burlington NC is now in an alzheymer/Dimenta facility. We have always worshipped and sang together. This is an experience I cant describe and have I questioned God? Yes.I have cried rivers of tears. Thru it all I know its in God’s plan.its not about me and what pleases me but rather glorifies God. He prays with the staff- he returns thanks at meal time and when the notion strikes him he stands in the middle of the room and tells them about the Love of God.when i visit I always have him pray for me for i know God hears his prayers. It feels so good for him to hug me and give me peck of sugar . One day wont be long we will have,a glorified body and life eternal. Until then God is in control.
Thanks for sharing your story, Betty. Your brother sounds like a wonderful man. And Heaven becomes more precious all the time!
Daily I work with beautiful people who are strong and dignified and are living with dementia. They offer so much to others, smiles, funny quirks and quips, incredible insights, hand shakes, and the opportunity to serve them. This article nails it. I love it and am thrilled to be able to share it with others. Thank you so much.
Thank you, Suzie! I’m grateful to hear you are working with people living with dementia– they need people like YOU! ~Cheryl
I am not sure why God directed me to this site today. It may be because I will need it and your support in the near future. I do not believe in “chance”. I have been overwhelmed by the love, pain, loyalty, dedication and sadness flowing throughout these posting. I admire, bless and pray for all of you and your loved ones with ALZ.
Thank you so much, Donora! ~Cheryl
Now that is really deep and i think.More of us as people should read and be more educated on Alhemzer and the care cause like it said it is hard seen some one to go threw that
I wish I had found this site a long time ago. My Mother died last week with this horrible disease. I was her caregiver for 3 years. We spent many hours laughing and holding each other. My bed was by her bed so I could make sure she was peaceful and comfortable. Early on I decided to write a book about Mama from birth until now. This was my “saving grace” as I researched and went through papers to get information. Most of friends from early years were “gone” and we have little family but I received such a blessing and the book was printed a few weeks before she died. She saw the book but we didn’t read it together. I think she would be pleased. When I decided to write the book found a “ghost writer” who helped me write my thoughts and feelings. I am so blessed to have this experience and God has been with me every minute. I missed my Mother, always will, she was my Mother, best friend, spiritual director and so much more.
I strongly pray that whoever reads this will think about writing your Mother, Father, friend-it gave me peace and a closest that I will always hold dear to my heart. Miss and love you always, Mother.
I’m so sorry for your loss, Augusta. It sounds like you had precious times with your mother! I started a photo album and biography with mom when I first saw her memory going and I’m so thankful I did. Her long-term memory was still quite good then, and we went through old photos together and created a short story of her life. I later typed pages us for her with photos and laminated them (because she was starting to destroy things) and she spent hours enjoying the photos and stories and songs. I agree, it is one of the best things you can do for yourself and your loved one! May God bless and comfort you! ~Cheryl
Thank you. It is so hard not having her with me
Augusta
My husband is caring for his mom who has late stage Alzheimers. He does EXACTLY what you would tell your kids. Watching him with her has made me fall even deeper in love with him. On her good days i sit in the background and just take pictures of her smiling at him, maybe not with recognition but with obvious love. Her heart still knows who he is. I take pics of them hugging and holding hands. On the bad days when she is fighting him, yelling, cursing, trying to bite him i watch him calmly softly say “Momma dont bite. I love you.” And slowly his gentleness calms her down and he takes a deep breath and begins another cycle again. A mother’s job is never done bc she is still teaching jim and me life lessons.
Nancy, I can’t even tell you how much I love the way you describe your husband’s care for his mother. Thank you for sharing! And please give your husband a big hug from me!! ~Cheryl
My dear Mother was the victim of a long, slow battle with Alzheimers. She was in perfect health otherwise. So healthy and strong that she would get out of the house and be gone 2 miles away before you could blink an eye. Or become violent if she did not get her way. Always tearful when she would realize her parents died and live this sorrow over and over every day. My dad kept her at home as long as he could before his health started to suffer under the immense pressure. We made the very hard decision to place her in an Alzheimer’s specialty home, which initially was a good decision – until she became uncontrollable and we were told she had to leave. A cycle of hospital admissions and different living facilities became the norm. My Dad faithfully visited her every day – save for the 2 days he had surgery – and was by her side every day for the 3 years she lived away from him. As a working Mom, I managed 2-3 visits a week.
Since she was so healthy, the only thing she could do was walk. And walk she did – nonstop – hours on end. Searching, always searching for something she could not find. She would only sit for a few moments and eat a few bites and pop up again to walk. We learned she would walk and eat a sandwich or banana, so we always had those handy for her – the nurses would leave a bowl of bananas on the desk for her. She never could remember people or things but the one thing she did remember was where to get a banana.
As time went on, she lost her ability to speak. She would sit and blankly stare. She became incontinent. She would take her clothes off. She did many things that I do not want to disclose out of respect for her dignity. I will admit I prayed and begged God to please take her and put her out of the misery she was in. Begged not for me, or my Dad, or anyone else, but for her. She would not want to live that way and had told me as much when her own Father had Alzheimer’s.
As it turned out, pneumonia is what caused her death, peacefully and in her sleep. She had Hospice care for several weeks with a slow decline of bodily functions. The extra nursing care and equipment made her much more comfortable. I mention this so that others can know that Hospice care is available to those in long term care or nursing homes. I never knew this.
When she died, we were devastated at the loss of a beloved wife and Mother but relieved that she was out of her pain and torment. Knowing she was no longer suffering outweighed the sorrow of her death. It has now been 8 years since she has passed away. Time has faded the difficult times and good memories of her fill my mind and soul. I miss her terribly. When I think of her, it is as young mother or proud Grandmother, happily cooking her Sunday dinners or scolding me for my lackluster housekeeping skills. I am so hoping that the time will come that not one more person has to suffer this cruel disease. Many advances have been made – hopefully a cure for Alzheimers will soon be a reality.
Valerie, I’m so sorry for your hard journey and your loss. Thank you for sharing your story. `~Cheryl
Hospice has changed over the years since i started working as a caregiver and i wholeheartedly recommend families look into Hospice care. Back when i started in the late 90’s, Hospice was more or less a death sentence. they only came in at the very end. Today, many regulations have changed and the entire Hospice field is different. While they still require an order from a Dr that the person is “terminal” and has a life expectancy of 6 months or less, the guidelines are much broader, as well as the services they provide. every Hospice agency i work with gives families the option of working with the Hospice Dr or their family Dr. They have services where music therapy or massage therapy or clergy will come visit people. they do wound care and palliative care. And one of my favorite parts is they don’t just offer services for the person on Hospice, they have support services for families. Nursing staff and support staff you can talk to about things you can expect and more importantly, how to help deal with the things that do happen.
as a caregiver i’ve found it impossible to care for someone with Alzheimer’s without developing a personal relationship with them. I remember a new caregiver was having a difficult time getting a resident ready for bed one night. I went in and talked to her for a few minutes and then asked her to let the caregiver help her and she did. the caregiver asked her why she had told her no but agreed when i asked and the lady just looked at her and said “because he’s my friend”. I can never have the same relationship or love for a resident that their family has but it still hurts to see them suffer and watch them die. And i’ve always told my caregiver’s to take advantage of the support systems that Hospice offers. And i recommend the same thing to families.
Thank you, Dana. We are working with hospice care now and have been impressed with all the support and care they have to offer. ~Cheryl
Reblogged this on Embrace Today and commented:
tear jerker. tears building up in my eyes as i sit here in my morning class.
I really think about that lot and don’t ever want to be a burden. I hope someone will still love me if that happens.
Audrey, I hope so too. I hope everyone with dementia or Alzheimer’s or any disease will have someone who loves them and stays the course with them. And I know that’s what Jesus calls us to. May He bless you! ~Cheryl
Thank you! My mom was just diagnosed with FTD. We didn’t get the diagnosis until a lot of who my mom was no longer existed. I have mourned with my siblings because we never felt like we got to grieve with her over the diagnosis or say goodbye. How I wish I could have held her in my arms and asked her how she was feeling and handling her diagnosis and asked what fears she was struggling with and then comforted her. Thank you for voicing what I know my mom would have said had she been given the chance. This disease stinks and robs us of so much but by God’s grace what he gives in exchange for what we painfully let go of is enough. Thank you!!!
Thank you for your comment and sharing your story. His grace is sufficient. May you know His comfort in this hard time. `Cheryl
Thank you everyone for sharing your stories and comments. I pray for God’s grace and strength as you walk through this with loved ones.
I would just like to add that a B12 deficiency can sometimes be an undiagnosed cause of dementia. Some people have had reversals of dementia diagnosis with b12 treatment. ( I’ve read that everyone over age 50 should consider supplementing with this water soluable vitamin because the symptoms sneak up on you.)
But I also believe that anyone with family members suffering any one of these symptoms — memory problems, balance problems or falling, confusion, tingling of hands and /or feet, mood changes, sadness, ringing in ears, GI issues, or myriad other symptoms, please get a b12 blood test. Make sure you find out the lab value result — don’t just let the doctor just say “its in the normal range”. The USA uses an old reference range. Other countries recognize a deficiency much sooner on lab values. If someone tests under 400, they need supplementation. I’ve seen dementia reversed in four months after starting supplementation w/b12. No guaranties but worth a try.
I’m a champion of this cause because I developed nuerological symptoms several years ago. During a year-long battery of tests, I was told it might be lupus, MS, etc. My b12 was tested and came back as 323 and the doctor said, ” Not b12 deficiency, you tested in the normal range”. I didn’t know any better so accepted that. As time went on I got to the point that one day I forgot how to fill out a check! Outwardly I was functioning fine. No one knew.
After a second year of very costly tests for every other condition, and worsening symptoms, including shortness of breath, we finally retested b12. I researched it online and self diagnosed. Though “low normal” (298) I asked to start on b12 shots and thankfully, noticed improvement and eventually reversed symptoms. I was 48 years old and otherwise in good health. Mine was caused by poor adsorption. I’m still on b12 now several years later.
Vegetarians and those with absorption problems or those over age 50 are at risk. You can Google search and find lots of info but here’s a good video I watched about it. http://www.b12patch.com/blog/pernicious-anemia-what-is-it/shocking-must-see-video-on-vitamin-b12-deficiency-crisis/
I also have white spots on my forearms which I understand can indicate b12 issues. I used to bite my tongue occasionally when I ate, not realizing it was swollen. But not everyone has all symptoms.
I hope this might help someone.
Thank you, Pauline! ~Cheryl
OMGosh, that was the most beautiful letter I have EVER read!! And, it is something most of us may face if we live long enough!! I have already lost both my parents to cancer, that was difficult enough, but being a nurse for so many years, and working with the elderly, it is such a difficult time to watch family members struggle to reach their loved ones. They are still here, just in another dimension. They still need your love and support more than ever! Even if they act like they don’t know you, speak softly to them, call them by the same name you always did before their diagnosis! Brush their hair, help them brush their teeth, if it is a female, put her favorite lipstick on her, and, her perfume too. If it is your Dad, shave him, put his favotite cologne on him, help him brush his teeth…. we may all end up in the very same condition. My parents always told us, to get love, you have to show love, you have to have love in your heart for ALL others! Let your parents know how much they mean to you, even if you think they won’t understand, tell them often, cover them with your love and understanding! They cared for us their entire lives, now, it is our turn to give them our everlasting love and comfort. Tell them how deeply you appreciated their love all your life! And, all the sacrafises they gave up so freely to give you a better life than they had. That my friends, is true love and respect for the two people that more than likely will love you the very most in your lifetime!!
Thank you, Amy! I love your comments and suggestions!! ~Cheryl
Thankful for all comments
My 89 year-old mom, too, had Alzheimer’s. It was during one of her more lucid days that she said “I don’t know why God just doesn’t take me now. I’m ready to go.” I went into my preaching mode and reminded her that Jesus said he was going to prepare a house for her and when her house was ready, I was sure he’d come for her. She replied “I can just live with my mom and dad! They won’t care!”
Oh, Dona, thank you for sharing this! I love it! ~Cheryl
Priceless! Reminds me of the funny anecdotes in Reader’s Digest. This one should be passed along as it is so human and touching, that humor can be found even in this.
Thank you. That was beautiful. My mom, too, has Alzheimer’s. I cared for her at home until she was nearly 94, and finally had to place her in a nursing home, which thankfully is nearby, and I can visit her daily. I appreciate so much, the staff of compassionate and dedicated CNA’s, nurses, cooks, housekeepers, and office people, who work there, helping to care for my mom. It was my heart’s desire to care for her at home until the end. For others who are struggling with this decision, I would say, that placing your loved one in a nursing home, does not mean that you stop taking care of them. You will still be the most important face they see, the hand to which they will cling, and their advocate. I figured out this morning that as a 24/7 caregiver, a person works the equivalent of 21, eight hour shifts per week, that’s days, nights, and weekends, That’s four full-time 40 hour a week jobs, plus an extra 8 hour shift. In our home, there care a point after Mom broke her leg, when I realized she needed more care than I was able to give her. If you get to that point, one of the most important things I’ve learned is to find out what the ratio is of patients to CNA’s. In our town, it varies from 8/1 all the way to 20/1. And I’ve heard of even worse ratios in other areas. When one CNA is trying to care for too many patients, they become exhausted and cannot give good care to your loved one, not to mention their patience wearing thin, as you can well imagine. Pray about it, and ask lots of others where there loved ones have been, and how they felt about the care they received. God bless you all.
having worked for assisted living facilities for 18 years i can share some things for people to look for. some regulations vary from state to state but as general guidelines…
traditional nursing homes have stricter guidelines than private run assisted living facilities. nursing homes employee CNA’s but caregivers in assisted living homes generally are not CNA’s and most caregivers get on the job training and had no training prior to working there. thats not to say they don’t do a good job. To be honest, most of the caregivers I’ve worked with that were amazing caregivers had no training prior to working in that facility.
Rarely is there ever a specific staffing ratio mandated by the state. I worked for one facility where the administrator said the state mandated a 8:1 ratio and then I worked for another where they said the ratio was supposed to be 12:1. What i found out when i called the state and asked was completely different. There was no specific ratio or even a minimum ratio. Generally those are things the facility comes up with. What the requirement actually is, is the facility has to have enough staff to provide adequate care for its residents. If I have 40 residents and the majority of them just need minimal assistance or queing I can do that with a 12:1 ratio. But if I have several residents who require two people to transfer them safely and need full assistance, i have to have more staff to do that. So don’t look for a specific number, look to see if it looks like people are being taken care of because generally thats what the state looks for when they do their yearly evaluations.
I’ve helped many people find placement and this is the most important thing I can say. Don’t rely on a scheduled visit to make the determination. Make a couple unscheduled visits. And don’t make those visits during “business hours”. Keep in mind that every facility I’ve worked for has different staffing for each shift and first shift gets the bulk of it. Thats the most likely time people come in to visit. If you want to see if a facility has adequate staffing, make an unscheduled visit at dinner time or right after dinner. Don’t look at prepared menu’s and prepared activities calendars, come in and see what they are served at meals and what activities they have set up. One facility I worked at that’s a national chain, their menu’s were filled with a lot of variety and choices and at breakfast and lunch, when families were more likely to come in, they’d have big, fancy meals. But at dinner time, when they were less likely to visit, 5 nights a week those residents were literally getting a 1/2 a sandwich and a cup of soup with a small bowl of jello for dessert. And their activity calendar’s looked good but in actuality they were playing bingo 5 days a week or doing nothing.
I agree with you. This is what I want too. My mom couldn’t speak the last several years. But, the love in her eyes when she saw us was always there, especially for my son. Her eyes followed him around the room. Even if she did not “know” us, she knew she loved us. And we loved her back. Always! Blessings to you!
It’s a lovely message, but you probably won’t be marveling at your grandchildren, or at anything else. My father-in-law sat in a diaper, tied to his wheelchair while drooling and blankly staring into space. That is the reality of the long, slow death from Alzheimer’s.
from the time my Mom really started to slip, my journey only lasted a year. I wish it could have been longer but she went down hill very quickly. This is so true and looking back I wish it would have been so much longer. I saw her every week sometimes more and it was always such a blessing.
My family is no stranger to this disease. My grandma and three of her four siblings suffered from this horrible disease. This spoke to my heart. My mom is concerned that she will end up the same way. I was privileged to care for my great aunt because she had no children and her husband died before her. She died and the day we laid her to rest her brother died that same night. So in a week’s time we buried my great aunt and great uncle. As I sit here crying I’m remembering all the quirky and solid moments that happened during their lives. I love them so much and know we will meet again someday in Heaven.
I’m sorry for your losses, Denise. May God bless you for the care you gave. ~Cheryl
I watched my mother gradually go from a lively, life-loving person to not knowing her children or grandchildren. Her last 3 months were spent in nursing homes. The 18 months before that was in assisted living. The last 3 months I was the only one of her 4 children who visited her on a regular basis, and we all lived in the same town. One visited every 2 – 4 weeks, one maybe monthly, the other had not seen her for weeks. My son was the only one of her 13 grand, great, and great-great-grandchildren who visited her in those 3 months or for the last about 6 months of her life. The others “couldn’t stand” to see her like she was. She stopped eating when she went into the nursing home and slowly starved herself to death. She had a DNR so there was no IV or any other means of offsetting that. She chose not to eat. She ate a few bites on occasion and that kept her body going. She went from 116 pounds to less than 80. Was it living? No. It was existing. But it was what she chose. Her own mother had dementia and had been kept alive for more than 2 years with a feeding tube in the 80s. She was adamant that she was not to have the same thing happen to her. My grandmother died when she did because someone came into the nursing home where she was with the flu and she got it, died from pneumonia. Otherwise, no telling how long she would have lived with that feeding tube. This was before living wills. My mother was not happy the last 3 months of her life, pretty much wasn’t happy the 18 months before that because she lost her independence. Dementia / Alzheimer’s is a horrible disease. Do I believe in taking one’s life? No. But I know where people get the idea of doing it.
In the last 5 yrs with my mother, she went from a very active person to being total bed ridden, she didn’t know me, she couldn’t talk, or even lift her hand. I took care of her from the beginning until the end and I would do it over and over again just to be able to hug her one more time. God tells us to honor our mother and father. Thank you for this memory.
Thank you, Debbie! May God bless you abundantly for honoring your mother. ~Cheryl
Thank You for article it has spoken to me as if it know just what I’m going through..you see my Mom is going through this..I’m with her now..shes @ the point where we are feeding her she mumbels when she talk sometimes we hear a word or two that we understand today I said Mom do you know who I am she looked up & smiled..I said ma I’m your only daughter Angie she said yes..it hurts sooo bad seeing my mom like this..they gave a year she has passed that time..seeing my father is sometimes harder he’s right there day & night..Lord help my mother & my Father so hard so hard..Pray for her chris is her name..Thank You..
Sadly, I have been dealing with this with both parents at the same time. My father passed on last July, and my mother is still alive in a Memory Care facility. The sad thing in my situation is it is bringing my brother and his family further away from me. He is living in the same area as my parents, and I live 900 miles away purely because I moved here for a job 20 years ago. Every time something goes wrong for my brother he calls me to yell at me and blame me for it. Like, we got colds and had to cancel our trip for our anniversary because taking care of mom and cleaning out their house has occupied all of our time 24/7 so it is your fault. (I offered to fly up there to help if needed, but they never asked). I got yelled at last Christmas for crying because Mom mentioned Dad and how we miss him. We were not invited to their house for any of the time we were up there, so we spent Christmas in a hotel with me crying while we were drinking some wine after spending the afternoon with Mom. It was the worst Christmas of my life. I am getting so stressed over the hostility I am receiving. I am afraid to call them cause they yell at me every time I talk to them. So, this makes me not want to go visit them and spend the money to travel there and sit in a hotel and go out to eat because we are not invited to join them. I keep praying that things get better and I tried to talk to them but it didn’t help. ::sigh:: I have some other friends in a similar situation and it totally sucks!
One of the best articles I’ve seen. I lost my mom to the disease 4 years ago.
That is so sweet, that’s about what I would say to my kids an grankids an what a sweet way to say it!! It is a horrible thing to live thru with your own family, I pray to God it never happens to My hubby an I. I will pray that God helps you!!! Judy
A friend posted this timely piece. Thank you. My mother has suffered from dementia for some years now. We think that a concussion in her late seventies (car accident) may have contributed to it. It started with her forgetting people’s names, then she quit doing any housework, cooking, and eventually she stopped taking showers, changing her clothes, etc. My dad didn’t seem to realize what was happening and they would get into terrific arguments because she would ask the same questions 6 times an hour. It took three years of us explaining to my dad what we observed. Mom would badger Dad that our suggestion for help/assisted living/etc was “expensive”. Finally, they were forced to enter the nursing home because my dad grew critically ill from the stress. He died 9 months later. My mother just turned 93. Because of my her neglectful mother/upbringing, she was unable to give us children what she did not receive from her mother emotionally. She operated from anger and resentment. We owe any nurtured feelings we have to our father. I cannot relate to those who have such warm feelings towards their mothers. My mom has been difficult to relate to– caring for her has been a challenge, especially when she wants nobody to touch her. The nursing home staff at first just gave up on her—she was a case. Finally, a new head nurse did exactly what we had requested a year and a half earlier… five months later, Mom allowed a bath. Dementia has left her with her gruffness sprinkled with moments of dry humor and a few memories of the past. We read the Bible and it’s all new to her every time even though she preached it as a minister for years. Her eyes light up when I sing a song she knows, having been a singer/opera trained. I’ve learned to just sit and people watch with her, diverting her negative tendency to criticize. I feel guilty. My mother does not represent warmth/tenderness to me. However, she birthed and cared for me and I try to honor her. God is tenderizing me through this difficult time. The other day, she didn’t flinch for the first time when I touched her arm in a caress. She is accepting a tiny bit of nurturing as her body begins to malfunction. I could not care for her without God’s love through Jesus Christ who loved me and gave his life for me. I have had a long journey with anger towards my mother and HE has helped me do the seeming impossible. I am learning to live in forgiveness everyday because I have received forgiveness through Jesus Christ. We had Hospice with my dad and we will with Mom if needed. We rob ourselves and others of a spiritual journey (that points us to eternity with Jesus) when we stop the process through unnatural death.These journeys in pain are difficult but they show us that we need Someone far greater than ourselves to live this earthly life…and to help prepare us for the next in eternity.
How can I get a copy of this particular blog entry sent to my email? It is one of the best things I have read that incorporates the deeply spiritual aspects so well. I want to be able to refer back to it often…entry from August 21, 2013. Thank you.