When someone has Alzheimer’s, you lose them before you lose them.
When Gramma was diagnosed with Alzheimer’s, humor became a necessary part of our lives. It was a daily agony that our family became strangers to someone we loved deeply. My mother grieved when her own mother didn’t remember her and missed their relationship.
You can’t ask for advice, share memories, or catch up on family happenings. We learned to accept Gramma and live in whatever world she was in that day. There’s no longer give and take in the relationship, only give and give some more. You can’t even weep for their loss, because they don’t know what they’re missing.
A staff member, whose name and face draw a blank but her love and devotion still warm my heart, told me that Gramma called me “The Lady with all the Kids.” It didn’t matter that Gramma didn’t remember who I was, I was thankful she remembered me at all.
My weekly visits to the nursing home confused her. She sat politely on her bed or in the main living room where the residents sat and folded washcloths.
The staff would take a basket of folded washcloths to another room, mess them up, and bring it back. They’d say, “I’m sorry, but there’s so much laundry today. Do you mind folding another basket? Thank you so much!” Usefulness gave the residents vigorous purpose.
I rambled about things Gramma knew nothing about to avoid upsetting her. I monologued an hour or two away talking about the weather, funny things the kids did, and sewing projects. I couldn’t ask questions because she wouldn’t know the answers.
Gramma and the other residents liked our visits. We became the center stage act, and residents would shuffle in to watch my kids play with the wing’s sorry basket of toys and books. My kids nervously noticed the residents’ blank stares and slings of drool, but I saw deeds achieved and lives influenced by their accumulated pasts. It brought tears to my eyes on more than one occasion.
I warned Gramma when I was leaving as I did with my kids at the playground, I’d list the errands I had to run since I was in town. We rented a farmstead in the country and going to town alone with all five kids could only be braved once a week. I saved all the shopping for one day – Town Day. Then, I’d tell her I was leaving. As I readied the kids to leave I promised her I’d be back, even though she wouldn’t remember that promise.
A few times she followed us to the elevator and tried to get on. I used to think she wanted to come home with us, but now I know better. She wanted to escape, but she didn’t know where she was from, so didn’t know where to go.
A staff member held her gently and talked in the reassuring tones they’ve perfected, while I pushed the button of guilt and watched the doors close in front of her face.
Only rarely did Gramma remember.
A few times she said, “I haven’t seen Arne for weeks. I bet he’s off fishing and won’t come see me.” Then she’d turn to me. “I suppose he’s off fishing with your husband.”
Instead of telling Gramma her dear Arne, had been dead for over ten years, I lived in her world. “Yeah, Gramma, you’re probably right. You know men.” I’d laugh and we’d talk about husbands until that memory dissipated.
If Gramma ever brought up a topic of conversation it was about our husbands. I was amused that she didn’t remember I was her granddaughter bringing in five of the cutest great-grandchildren in the world to visit her, but she remembered my handsome husband. Once she even called him by name, although she hadn’t used mine in years.
Gramma and me in 1993.
Yep, I’m wearing a stonewashed denim jumper
with a drop waist and believe it or not, I was totally in style.
In my mind, anyway. I’m also pregnant with #3.
One day when we arrived, Gramma was still in her bathrobe. I’d never seen her in anything but her large, flowered print shifts, with short sleeves and rounded necks, stockings and garter belt with sensible shoes. As a child, we loved when Gramma lifted up her skirt and showed us the rows of little shiny clips that held her stockings up. She would giggle with the mischievous smirk we loved, then lower her hem modestly.
This day, she had a similar look on her face. She half grinned, then grabbed the edges of her bathrobe and opened it up. Smiling so all of her dentures showed, she said, “Look, I don’t have anything on under here.”
She giggled and closed her bathrobe while I worried that my children would be scarred for life. She was experiencing the same thrill as when one of my children would escape my clutches after a bath and run naked through the house.
When Gramma had a bit of lucidity, she wanted to make me a sandwich. She knew the kids and I had traveled to see her and felt obligated to feed us. At first, I tried to make excuses — I wasn’t hungry or we had just eaten — but it never calmed her down. I learned to let her grab my arm and march me around the floor looking for the kitchen. After a few laps, she’d forget what she was looking for. Then we could sit together and I would chatter again to fill up the empty space in her heart and mind.
Because it was Town Day, the five kids were always dressed up. The girls would be in a dress or a skirt, their hair done, usually with a special hair bow I’d made by hot gluing a large satin bow to a clip. The boys wore nice jeans and button-down shirts. After all, it was Town Day.
One day, Gramma gave me a special gift to pass on to my mom. When we arrived, she was standing by the window on her roommate’s side of the room, staring, staring, staring. Her body was still, as she never was in the days when she had her mind, but her eyes darted like a robin seeking for worms. My kids stood with her, joining in her vigilant watch without knowing what they were looking for.
I knew. She was watching for Grandpa. I didn’t despair, because I knew at least for a few minutes, she was remembering something.
Something is always better than nothing.
She reached over to my daughter’s hair and began playing idly with the silky blonde strands beneath the hair bow.
“My daughter, Mary, had hair just like this.” She continued to stroke the hair and I could vividly see the memory forming in her mind. “And I used to make bows just like this for her.”
Wishing with all my heart for a complete breakthrough, I dared to say, “Mary is my mom. These are your great-grandkids.”
She turned, looked through me as she always did, and didn’t respond. I was still just “The Lady with all the Kids.”
It was only after my initial disappointment that I understood the gift I’d been given.
That day, lost in Alzheimer’s sea of forgetfulness, she remembered that she had a daughter named Mary.
This is absolutely wonderful. My Mother’s name is Mary, too. To my Grandma, I became her goddaughter. In the beginning, when I would correct her, she would get angry. I learned to let it go and enjoy my time with her as she was. One thing she absolutely loved was her great-grandbabies. I wanted so much for my children to have known her as she was before Alzheimer’s. But they did entertain her so well and her sometimes childlike behavior (which was part of her personality all of her life) was amusing to them. They have their own precious memories of her. Thanks for sharing your memories that are shared by so many of us with loved ones living with or having lived with Alzheimer’s.
Thank you for stopping by today and sharing your comment. Even through the Internet, we can help one another go through various trials or relive precious memories. I’m thankful you learned to adapt and enjoy her mindset, I know it made the last years easier for both of you. Thanks, again, for visiting my blog today, friend!
Thank you for your beautiful post! I have taken the liberty of sharing it on my Facebook community page, “Memories in Time”, which was created in honor of my mother who also suffered and died from the effects of Alzheimer’s on November 15, 2011. It reminds me very much of how we, and the rest of my family, all dealt with her in her own world. As heartwrenching as it was at times, we at least had the ability to find humor in certain aspects as well. We have both our parents to thank for that!
Sylvia, Thank you so much for sharing my article with others. After living through this with Gramma, I really had a longing not only to share the grief, but the humor and a few special hints for dealing with loved ones with Alzheimer’s. It’s a hard journey to travel, and I am so sorry you had to travel it with your own dear Mom. Thank you for sharing your heart.
Thank you for sharing your story. I can truly relate to it. My dad is now in a nursing home and is suffering from Alzheirmers . I feel like I already have mourned my dad because he is now only a shell of himself, I too look for the humor because it helps me get through my daily visits with him, I love to make him laugh . He one day told me of another women resident took her shirt off and how he tried to tell her to put it back on, so I asked him if he looked and he replied I am still a man you know. Needless to say I busted out laughing with him . He is now at the point where he dont always reconize me or even my mom, who he been married to for 60 years. When he does reconize me he cries and begs me to not leave him, this of course breaks my heart. My prayer is that there will be a cure for this horrible mind stealing disease. My dad was such a great men well loved by all , his neighbors called him the mayor of the neighborhood and saint James of the animail world. Always inpecable clean and neat , a more honest man you would never find , strong in heart and always and in faith. I miss my dad but I go see him everyday to help feed him , shave him , cute his hair and comb it, I do his laundry , and most of all love him. When I was just a young child he would tell me he loved me and I would reply I love you morether so now thats we say to each other before I leave my visits, he rememers that. Well thank you for letting me share too. Too all the families effected with this disease stay strong and be there for your loved one because thats all that they have now is you.
Thank you so much for sharing your story today, Betty. The disease robs us of only the present, it can never take away the past that we’ve had with that person. I love how devoted you are to your Daddy, what an encouragement that must be to others around. He sounds like a wonderful man and you are right to be proud of the impact he left on the lives of others. Alzheimer’s can’t steal that. Thank you for your encouragement to others going through this disease, sometimes just hearing someone else is out there is a balm for the weary soul. Blessings to you!
Mindy, Thank you for your beautiful story, it brought me to tears. My mom has Alzheimer’s for 8 years and my dad was recently diagnosed with dementia. I am truly blessed that mom still knows who we are (her immediate family). Mom’s favorite quote about having Alzheimer’s is “I just live in ignorant bliss”. I thank God everyday that she still knows who I am and still has a sense of humor. Thanks again for your story and God bless.
Beth, I am so sorry you are getting a double-dose! I’m thankful your mom still knows you, what a time to store up memories and words of affection. Your Mom sounds like a wise woman and like she’s also trying to cope without stressing you out to much. Yes, we must laugh or we would start weeping and never stop. May the Lord give you the grace and mercy to be the daughter your parents need in the coming years. Be strong and courageous!
mindy a big big big thanks for sharing your story with us. my dad has Alzheimer too and i know how its difficut to talk about this but really its better of saying nothing. thank you a lot and a big encouragement from morocco
I am so sorry to hear about your Dad’s Alzheimer’s. We all grow up and imagine our parents will be there to take care of us all our lives, when we’re put in the place of taking care of them it is so hard. May you be a help and an encouragement to your Dad. Thanks for speaking up today.
My Mom suffered Alzheimers also. All the tips you refer to in your story truly help a patient avoid grief. Too many times I remember my siblings saying ~No Mom its this or that~ Just let them be who they are at that moment is the best gift you can give. Otherwise you are in for tears, rages & even more blockages. My Mom forgot our names, our relationships & the fact that I spent the last 30 days living in the hospice with her once she forgot how to eat. But the day she died, she asked for & then waited for my sister Cathy to come~ I said I love you Mom~She said I love you Lin. Fifteen minutes after my sister got there~Mom passed & was finally at peace.
Lin, thank you so much for sharing your story. I loved that your Mom’s last words were not only to tell you how much she loved you, but that she called you by name. It must still be sweetness to your ears and your heart. When we can’t change their brains becasue of the disease, we have to change. We have to give up all our expectations and take anything they can offer. Your mom was blessed to have a daughter who loved her.
I am dealing with this now with my Mom. I totally “get it”!!
Deb, you are an amazing woman! May your faith and humor uphold you are you minister to your Mom and your daughter. I know you have amazing friends, don’t be afraid to ask for help if you need it. Blessings to you, Sweet Tea!
Mindy, My mother-in-law just passed from this awful disease. You are the mirror of what I have endured for over 5 years. Dot. was a very special lady, I would go and visit frequently, bringing lot’s of toys, puzzles, etc…I would decorate her room with family photos and changing of the seasons. You are a inspiration to all. God Bless you.
Margie Lukas
Margie, I am so sorry for your loss. Even though they suffer in their minds, it is always hard to say that final goodbye. I loved your ideas of decorating the room, thank you for sharing that idea. It will minister to others who are going through this same situation. Thank you so much for sharing your heart today.
This put a lump in my throat an the tears flowed xxx I no nothing about alzeimers but your story touched my heart
Thank you for your comment, Sheila. I bet very soon you will meet someone going through this and now you have the encouragement you will need. That’s usually the way it works. 🙂
Such a nice story…we lived this too and it will make your children much better people…making them more caring and certainly more understanding…Thanks…
You are so right about how these things affect our children for good! We had several other friends in nursing homes, so for many of the years when I had all those young kids at home, we visited nursing homes. My children are very sensitive to others who suffer. Thank you for sharing your comment today.
I am so glad I stumbled upon this today. We recently put my father in a facility where he can get the 24/7 care he needs while my mom recovers from an illness. Twice this week he has told me he loved me and that means the world to me! It was a big joke in our family that Dad loves me but he just didn’t like me sometimes. It is the most heart breaking disease I have ever encountered.
A heart can only be broken if it is filled with love. I know this decision was hard, but hard times calls for hard decisions. He will be cared for and you will be able to help your mom recover. You have double concern with both of your parents needing you. May your love give you the strength to face what it takes each day. I wish you could record your Daddy telling you love him. What a precious gift he gave you. It will sustain you through whatever is ahead. Blessings to you, your parents are blessed to have a daughter like you.
Alzheimers disease is a nasty evil…My father is in the advanced.stages and he doesnt know who any of his family members are. Although he will get a moment of lucidness…….maybe once a month for a second. It’s. Strange to say “I miss my father”. People don’t understand because his body is here, but his mind is in its own hell. Im so appreciative that I have the memories.
I’m so sorry to hear that your life has also been touched by Alzheimer’s, but I am so thankful you have memories. Since he can’t talk now, if you don’t already, I would encourage you to take pics of your father to match the memories. Take pics of his hands, his face, him reading, whatever memories you have that need illustrations. I wish I had taken more pics of Gramma, even of her folding washcloths. Blessings as you continue to love the Daddy whose disease doesn’t allow him to remember that he loves you deeply.
What a beautiful story…made me cry…so so special…x
Thank you for visiting today, Carol. I’m thankful that others can appreciate the memories I have from my dear Gramma.
Thanks so much for sharing your story, my Mum has vascular and alzeimers and has now moved in with me. She remembers so much from the past but evenings are a constant source of worry for her not knowing who`s house we are in and how long we have been here(15years). We survive through humour and live each day to the fullest 🙂
Sue, may the Lord bless you for taking your mother in. This is love in action, but a love with a high cost. I can only imagine the challenges you face trying to “mother” your mother. Please remember to also take care of yourself, caretaking is hard. Ask for help if you need it. I love your attitude of living each day to the fullest. Thank you for sharing.
This is such a special story/
My Mom also suffers from Alzheimer’s, Mindy…The hardest part of “this disease” is the fact that she does not know us. Every day events we would rush to the phone to tell her, stay silent inside us, as we try to get her to talk about her. The words come out slowly – sometimes not at all….This is a terrible disease and with technology today – in the year 2013- I still cannot figure WHY “researchers”
cannot find a cure..Thank you for sharing this beautiful story…Susanne
Susanne, I am so sorry to hear your Mom has Alzheimer’s. The agony of having no medical resolution adds to the burden, you are SO right. May your memories and your love be enough to carry you through caring for your dear Mom. Please remember how much she loves you. Just because she doesn’t remember you doesn’t erase all she admired and loved about you as her daughter. A mother’s love is so strong, let it carry you through now even when she doesn’t remember.
Thanks, Judy. I enjoy you being a part of my writing life.
Thank you so much for encouraging me with your visit today!
Alzheimers patients broke my heart when I worked at the hospital years ago. Thank you for sharing precious memories.
I am thankful for the memories I have. I have spoken of Gramma so much daughter talks about her even though she never met her.
Hey I was pregnant in ’93 too, lol! What a beautiful story, Mindy. My oldest brother has Alzheimer’s. So far he remembers who we all are. He remembers the past very well, of course. Just has problems with yesterday and today.
And he forgets little things and how to do the little things. He forgets what he wants to say, too, and then gets really frustrated. The words are right there but he just can’t seem to grab them and it frightens him. He keeps asking for the same item over and over and keeps forgetting where you told him it was.
However, he’s been treated with some new meds and they have really helped.
You used to not be able to get him out of the bedroom or talk to him on the phone, but now he is willing to venture out. So they have helped give him some clarity and less confusion.
It’s been hard on my mom but he remembers the past really well, as I said, so they enjoy reminiscing about the past together. He also worries a lot about things and the meds seem to have helped with that too.
However, he has severe heart disease so I don’t think the Alzheimer’s will be allowed to progress very far. I love my big brother! 🙂
Thank you for sharing your story. I’m so sorry to hear your brother has Alzheimer’s. It’s hard disease to deal with. It helps others to read our experiences and know they are not alone. I think each person is different and you create the new reality based on their functionality. I love that your brother can write and that her remembers so much. What a gift. You are a dear sister and daughter. I am so encouraged by your love for your family.
I was able to talk to him this week. He called when he received our son’s wedding “save the date.” He couldn’t remember his name at that moment but he was happy for him!
Thanks so much for linking up to the “Making Your Home Sing Monday” linky party today! 🙂
Julie, thank you SO much for leaving a comment on my blog today. I love and miss you, too. I can’t believe almost two decades have passed since we lived there with the people we still consider our church home. I think the Lord has led you to the perfect job. I know you are an amazing comfort and encouragement to those families. What a hard job, but a needed one. May the Lord grant you peace and strength to deal with hard things on a daily basis.
My grandmother and mother had this horrible disease. My grandmother had been a nurse so she loved to sit near the nurses station helping them….by folding washcloth! I miss her. My mother turned mean, my name became birch. I stopped gong to see her. This disease affects the entire family. Loved your blog…Glad you have some good memories
I am so sorry you had to go through this twice. Yes, some people turn mean because of the illness. I would encourage you to write down every special name you remember your mom calling you and the special things she did to show how much she loved you. Keep the good memories before she was ill. Who she is now is not really her. You are NOT what she calls you. That is the disease speaking. May your heart and mind be filled with the memories of how much your mom loves you.
Mindy, thank you so much for writing this experience in your life. I’m a social worker for a hospice, and I see this event all the time. You have an amazing ability to see through the disease and communicate lovingly and effectively. Love you and miss you!
You are such a beautiful person, inside and out!
Thank you so much for your kind words. They mean a lot to me.
I am trying to work on a post about life and death and am asking why? The big why. This post also has me at the point of tears as it screams life is. Thank you very much. I wish so very much that you could just hold her and hug her and tell yer how much you love her, but then why would the lady with all the kids be hugging me? Much love.
Thank you for your encouragement. It is sometimes hard to reach back into those memories that have pain and sorrow so intertwined with joy and bring a little of both to the surface. But, it is healing.
This made me cry, Mindy. May I share this with someone from the Columbia Lutheran Nursing Home where my mom used to live?
I would love that, Maureen, thank you! I was wondering if I should post it on a few Alzheimer’s sights, too. I think it’s a graceful way of teaching people how to live with those with dementia. I’ve seen people who adamantly try to remind someone their spouse is dead, or they sold that house 20 years ago, etc. When we accepted the disease, good memories will still made for us.
I just spoke at a fundraiser for the nursing home my mother was in as well as a dear elderly saint from our church…one of the things I learned from my years there was how to enter their world….when Della would tell me that she needed to go fix Jay’s dinner I learned to go along with it or remind her that he wouldn’t be home for a couple hours yet so we had time… yes, acceptance…so often we try to hang on to what was or what we wish it could be. The Lord has so much to teach us in the way things are.