I have a message for my mother’s friends, family and acquaintances: She’s still alive.
My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.
If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.
It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.
Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.
Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.
I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….
My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.
No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.
After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.
Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………
I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.
My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.
She inhabits a place somewhere between life and death.
It’s a grotesque place.
By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?
I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!
After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.
I wonder if there is a heaven………………or a hell. I wonder what God will decide.
I wonder if He stopped asking about my mom, too.
My Demented Mom 
Feeling the same anger. Hurt? Disappointment? Mom and Dad ignored by most of their family and friends.
I’m terribly sorry about the latest news. You speak of something so very prevalent in the lives of those caring for loved ones with dementia – abandonment. It’s as though people are afraid it’s contagious. Another reason friends and acquaintances start dropping away is the uncomfortableness they experience when visiting someone who is deep into their illness. Us family members can still see the mom, dad, spouse, sibling, but those not as intimately involved only see scary behavior and don’t know how to respond to that behavior.
We can be upset with those who abandon our loved ones, and it’s okay to be upset. I guess their lack of understanding results from their lack of similar experiences.
But that doesn’t make it any easier for you. I’m so sorry.
Kathy, you spoke the words I have in my head daily. My mom has vascular dementia. She is still mobile, albiet very slow. She remembers seconds now not minutes. People don’t get it. They run the other way. When I see friends I have not seen recently my first words are ” how are your parents?” . How is their brain? This might sound strange to those without memory impaired parents. ..If they say ‘fine’.. I then tell them to never take that for granted. They sometimes look at me strangely but of course I go on..’would your mother remember a conversation you had yesterday? ‘ their answer a kind of smug …well yes..then a smile as if I am crazy. How lucky you are!! My mom does not remember 5 seconds. If I use the bathroom quickly ( can’t leave her alone more then a minute) and when I return it is like she saw me for the first time. People don’t get it!! But her friends?? How dare they forget! My mom would have been there for anyone, anytime. And they are all now absent from her life. Only those in our shoes can really “get it”. And that is a sad thing. More needs to be done. The toll it takes on me, my dad and all caregivers is an epidemic of it’s own. Then of course the brothers who “oh Sis we appreciate all you do for mom and dad…what we do without you’..thank you sister so much for allowing us and our families to go on living a normal life, going on trips for three weeks at a time …but when either brother does call or go see mom or dad they call me and say ‘ just talked/ saw mom and dad….as if they are helping out….thank you Kathy for your great blogs..thank you for letting me vent..this life sometimes sucks but it is good to know I am not alone!
[…] Poignant post from a daughter who’s mom is suffering from dementia/Azheimer’s Disease: https://mydementedmom.com/2013/07/30/dont-stop-asking-about-my-mom/ […]
Kathy
I came across your blog awhile ago when I was looking for something to help me lessen the anxiety I was feeling about my mom. I won’t pretend that my mom is any way similar to yours on the spectrum of dementia. My mom is still living alone, but struggling everyday in my eyes. Her struggles become my struggles. The day to day apathy with her is impossible to comprehend from my perspective. Incontinence (which had been an ongoing problem because her original diagnosis was hydrocephalus) continues to be a major struggle. Each time I go over to her house, it’s a similar scenario… Usually a wet bed, and a pile of urine soaked clothes heaped at the top of the basement stairs. Barely any food in the refrigerator. A million “oh, I’ll get to it tomorrow’s”.. I could go on and on, but I’m sure you get the picture. I know in my heart that one day, I may be in your same shoes.. Actually, I expect it, and I know that if I continued with the way I was viewing the situation, I would either explode with frustration or fear. I just want to tell you one thing, and I don’t know if it’ll help you or not, but you have to believe that God is with your mom all the time, and that He is waiting for you to turn your fear over to Him. I am not a deeply religious person, but my Catholic faith has been what I have tried to fall back on, because quite honestly, there is nothing else. And in my mind, I have to believe that God will ultimately take care of my mom because if I don’t believe that, I will freak out with worry. This hasn’t come naturally to me, either.. I’ve literally had to compose myself and say, “God, I can’t do this, take it from me.” Over time, I have begun feeling so much better, and so much less overwhelmed. I don’t believe it’s an accident- I just think the more I’ve given to God, the more perspective he’s filled me with. Just a few more things I want to say- you are dead on about quality of life and dignity. I am a nurse, and have seen many people decline. I know the kind of life I want for myself and my mom, and I am not ashamed to say that I have asked God to take my mom before things get so bad. There’s nothing worse than watching your loved one waste away in a bed, and unable to do anything about it. I truly wish your mom an end to her worldly existence in exchange for the life that’s awaiting her. That life is the one we all are striving for anyway.. As far as the people who are distancing themselves from you and your mom, THEY ARE NOT WORTH IT! You can’t fix stupid, and in my experience, the people who can’t be there for you, don’t “get” it, etc are beyond ignorant.. You can not make them your problem. I hope you have at least one person in your life who is there for you, that you can lean on. You need and deserve it. Lastly, when I came across your blog, I stayed up late into the night, reading every entry, and feeling a common bond with you. I laughed out loud, shed some tears,
And marveled at how well you put my own thoughts into words. You are doing an absolutely amazing job. I am in awe of your devotion to your mom, and your authenticity in telling your story. Just keep moving forward and loving your mom and yourself the best you can. And lean on God.. I promise you that He is there for you.. take care of yourself. I’m saying a prayer for you and your mom tonight.
Dear Kathy,
Thank you for this amazingly honest post and highly informative and insightful blog. Having two generations of AD before me (my mother and my grandmother), I relate all too well to the sense of isolation you’ve shared.
I hope that I have the grace in expressiveness that you have demonstrated as my mother progresses.
Thank you so much for sharing your voice for so many who can not do so. Your perspective adds unique and important insights to the conversation about this devastating disease.
Sending prayers of peace and love to both of you during these dark days,
Barbara
picturesonherwall.com
Really enjoyed your post – it is all so true! Take care.
Hi Kathy, I came across your site online as I too have a mother with FTD and so I began following you on twitter which brought me to this latest post of yours. I have been through a lot of terrible things in life… abuse, fathers death then immediately following that my mothers dementia diagnosis came and deterioration over the last 8 years and just 3 weeks ago I lost my (41 yr old mother of 3 under 9 yrs of age) sister-in-law to cancer. I say all this because despite the trials my life has taken me through I know for a fact that God is real. We live in a broken world, a world that the bible refers to where the devil is the god of it. The devil’s soul purpose is to kill, steal and destroy. Hence sickness and death. God can heal people miraculously from that but ultimately we will all die and God’s focus and desire is that everyone will give their lives to Jesus and be saved from hell and will instead live in heaven with Him once they pass from this earth. Heaven is the fix, the new earth because this one is messed up because of the devil and our sin (lying, cheating, hatred etc.). God set a plan in action where He had His Son Jesus be born as a man so He could live perfectly so that He could be a perfect sacrifice for us. Only by believing that He died and rose again for us and giving our lives to Him can we be saved and go to heaven. I know that this sounds crazy as well as confusing so please feel free to contact me for a more in depth conversation. I know He is real because I have experienced Him move in my life, He has given me joy and peace amidst the most awful of pain and circumstances. Please consider my words seriously. I’d love to hear from you or anyone interesting in talking more on this topic or in need of prayer.
Thank you for the powerful pain and bluntness of this post. It’s the first one I’ve read on your blog, and I’ll be following you.
Hi Kathy,
My name is Esther and I am with an organization called Caring Across Generations – we are a movement of caregivers and family members who are coming together to change our nation’s culture around aging and caregiving. I have been reading your blog and I think that you have a beautiful story to share about your mother.
I wanted to ask if you would partner with Caring Across for our upcoming Grandparents Day campaign (Grandparents Day will be on Sunday, September 8). Through this campaign, we hope to honor and celebrate grandparents and to facilitate cultural change that will enable families to open up the conversation around aging and care.
We are relying on grandparents and caregivers like you to help us spread the word about Grandparents Day and to share your own stories with us. Between August 22 and September 8, we would like to ask you to:
Write a blog post about your grandparent, or about your experience as a grandparent. Possible topics are: a fond memory or a funny story about your grandparent, or lessons and advice from grandparents to their children or grandchildren.
• Please send me an email at esther@caringacrossgenerations.org when you publish your GP Day blog post so that I can make sure to share it on the Caring Across website!
Tweet or post on Facebook using the hashtag #granecdote. We hope to collect thousands of stories about grandparents by tracking the #granecdote hashtag. Here are some sample tweets/posts:
• Just sent a postcard to grandma for #GrandparentsDay for free! Create & send your personalized card at caringacross.org/gpday!
• [Insert story about or advice from grandparent] #granecdote Share yours at caringacross.org/gpday!
We will happily share your blog post and #granecdotes through Caring Across’ social media channels, as well as host your blog post on our site!
If you feel that your story is disconnected from Grandparents Day, we hope that there will be other ways to partner together in the future!
To learn more about us, check out the Caring Across website and facebook page. Our Grandparents Day landing page (caringacross.org/gpday) will launch on August 22nd. Please feel free to reach out with any questions. I look forward to hearing from you and collaborating for Grandparents Day!
Best,
Esther
I stumbled upon your blog and read this entry with much sadness. My Mom had Pick’s Disease, and endured a similar experience. Rather than reach out to her in her time of need, a lot of her old friends, relatives and colleagues retreated (some might say abandoned her). But a few caring people came out of the woodwork too. Until her death in 2002, my Mom was definitely still “there” – even though she had lost the ability to speak, she always knew her children and enjoyed our company. She would smile and point to my engagement ring, as she understood that I was getting married. I wish I had some advice for you, but it was simply heartbreaking and difficult. There were no blogs or twitter back then, so I imagine finding people in similar situations must help somewhat. I am thinking about you and your Mom and I wish you the best of luck.
I just love your blog. It makes me cry, I am completely understanding everything you say because I experienced it too. My mom passed away on 5/10/13 from vascular dementia and I still get really angry at the way she suffered and the broken, inhumane system we got trapped in. You are helping me with my grief work & inspiring me to do more to help change this mess. Keep going, we are here with you.
Hang in T here. I’m sure your Mom is grateful. You are very kind. My Mom has vascular dementia and .. Mild to moderate. Touch is especially important. Please give yourself and her a big hug from me. In south Dakota.
Gorgeous writing and you capture the sorrow and frustration with your well chosen words. During the ten years my Mom struggled with dementia, I faced the same issues and basically conducted a marketing campaign to remind people where she was (I had no shame!)…before any special holiday or occasion, I sent out emails and snail mails to everyone I could think of reminding them that hugs and kisses and cards were welcome. I always included her address and phone number and a photo of the younger her so they could relate that this is the person they knew and loved. Right before the holidays I made a Christmas card with her photo and the first week of December sent it to her entire address book…with her return address prominently displayed. I sent it early so people would have no excuse to exclude her from their list and it worked…She loved getting a flood of cards. One of my cousins once commented, ‘wow she was spot on with those Christmas cards’ (!) and I just roared with laughter…it was me, silly…I sent the cards! I found the Facebook page of a local church organization close to my Mom’s facility and posted requests for people to go see her (again with her photo). As I said, I was shameless, but I couldn’t do it all. I needed help. You are right… she needed touch. She needed attention. People are afraid of this topic…but I also think people are not sure what they should do, so I led the horse to the water…and I made the horse drink! All my best to you, Hallie (A Swift Current)
Thank you so much.
Thank you.
Thank you so much for the support and kind words.
There wasn’t much out there when my mom first got sick. Most docs didn’t even bring up FTD, they lumped her in the ALZ category. Thanks for your support.
You’re definitely not alone. Thanks for your support and good luck.
Thank you so much for your kind words and your prayer.