Mom had been doing so well....until last week. Wednesday nite I received a phone call from her. She was all out of breath. She was looking for her mother. Frantically. To say good-nite to her. My grandmother died 32 years ago. I had to tell her that. Her reply: "Stop it, Carol! WHERE is she? Is she with you?".
And the dance begins again. That dreaded two-step. The one where you're no longer on the familiar dance floor. You're on ice. Cracked ice. In bare feet. Cold. Uncomfortable. Uncharted territory that is becoming way too familiar.
I was able to settle her down that nite. For about 5 minutes, after which time she said to me in her best, 'motherly' voice, "Carol....I have to get off the phone now and go find Mom. I need to say good-nite to her". sigh. I had failed.
Friday nite I got a call from the head nurse. Mom was frantic. Even after been given a Xanax. "Carol....I'm still at work. Everyone's gone. I missed the bus. I have no money. What am I going to do?".
Nothing calmed her. She wanted to go "home". I packed a very ill husband into the pre-heated car, and headed to her assisted living facility. She was finally calm....but insisted on my taking her "home". After a long while of trying to get her to remember we had sold her house 3 years ago ("I KNOW that Carol"), I couldn't get her to tell me where she meant when she said, "home". She didn't want to come to my house....she wanted to go 'home'.
Can you imagine the terror you would feel, when no one around you understood what you wanted? The heartbreak of feeling that even your own daughter didn't understand....didn't meet your needs?
This continued through the weekend. There were many moments when I questioned whether she meant 'home' to heaven. I don't think so. But then again, maybe that's what she wants. To go 'home' and away from this hell.
For right now, we are all there with her. Trying to help her navigate the ice. Depressing? Yes. Heartbreaking? Yeah. But it's her life right now. And mine. I thank God each day when I walk into my studio, turn on the lights, and create. Escape. Live. It drives me into a world that is safe. And free of pain. At least for a little while. Until the phone rings again.
40 comments:
Carol~
Just want you to know that my heart goes out to you. I can relate to some of what you shared. My dad had several strokes before he passed away, leaving him with dementia. It was very hard for me to see him like that. Dad had always been the "strong one" and to see him in a weakened and confused state was heart-wrenching. Then, my FIL had a disease called Progressive Supranuclear Palsy. From the onset, he suffered from hallucinations and dementia. He, finally, got the point where he could no longer communicate or do anything for himself. It just doesn't seem fair, at all. However, you learn to count your blessings for the good moments, however fleeting they may be.
Thank you for sharing that, April. I sometimes hesitate to post 'downers', but I'm finding it very healing to write about it. I'm so sorry you had to go through this with your father. It does make you appreciate the blessings.
You dear woman. You haven't failed. It's a disease that can't be beaten. There is no succeeding or failing. Just grab those precious moments up and bear the others. Create. And be well.
much love,
erin
Erin...Thank you for that. My head knows that it's an unbeatable disease....but my heart too-easily forgets it.
It is terribly heartbreaking and I send you all my good wishes.
God bless,
CJ xx
Oh Carol I sooooo understand what you are going through with your Mom as my grandmother had Alzheimers. I think it is one of the most difficult diseases to see someone that was so strong become as she did. My grandmother always wanted to know where all the kids were...she had 10 siblings growing up. It was a constant struggle with that. I also remember the calls from the nursing home where we finally had to place her. We were the only ones that could sometimes calm her and then many times she had no idea who we were. I am so sorry you are having to go through this as it definitely is not easy.
Your studio looks like a beautiful place to escape for a bit, when you are able.
Crystal...Thank you!
Darlene...I know you understand this heartache. It truly is, as you say, a "constant struggle". And yes...I absolutely LOVE my studio....one of my blessings.
Oh Carol, I'm so sorry, hon'. My mother never developed Alzheimer's, but as she got older and sicker, she would develop hospital dementia whenever she was in for more than a day or two. It was always a challenge to keep her in bed and keep her from trying to run away. One time she was convinced that she had to hide her plate of freshly-baked cookies from the nurses, who wanted to steal them. And then there was the little boy who was running around her bed. She was afraid he was going to unplug everything.
Poor old girl. She is at peace now, but those were challenging days for us. My heart is with you...D
You made me really think with this wonderful post, honey! I can't even imagine going through this. I'm feeling what you probably feel after reading it. I feel sadder for your mum though. It has got to be hard for her after reading your description of her life now. My heart breaks and my eyes are streaming tears as I type this. I hope it gets better for her and YOU!
Hugs and smooches and peace, chick.....
Connie
D...I'm sorry you've experienced this, too. We try to keep Mom out of hospitals at all cost...as the paranoia rages out of control when she's there. I'm glad your mom is now at peace and out of this hell.
Connie...This may sound cruel, but I pray each day that God will take her. It's just not fair to her to be living like this.
Love is patient and kind. It's the first passage I think of when I think of you, Carol. You and Jim, both, treat mom with such respect and compassion as you strap on your ice skates. Spring is right around the corner and you'll be able to take mom a Frosty and go for a walk outside. Get that sunshine on her face and Vitamin D in her body. Much love to you dear.
Prayers for you, your mother, and all your family. The love that you are showing your mother is so precious now, and is never wasted.
I wish I knew the answer to solve your pain and your mother's anguish. I know what you're going through, having been there myself though Mama's mind was stolen by cancer and the treatments for it rather than Alzheimers...but still, I know. All I can do is offer you a psychic hug and warm embrace and remind you that this too will pass...
hugs
Sandi
Dear Carol,
I don't know you ... but I do know one thing, you deeply love your mother. My heart goes out to you and I pray for your strength to continue while you deal with the illness. It is so sweet of you to be near for her. To take her phone calls filled with fear and quell them.
You are also a very gifted writer and extremely talented artist. I'm sure that she is very proud of you. I also love my little office haven for work, computer and crafting. My husband refers to it as *My Crows Nest* ... lol ... I think he's jealous that I claimed it for myself!
I often peek in at the darling jewelry you make. I love how you photograph it in the little cupcake holders!
The sun will be out soon and hopefully that will help ease your spirits a little.
{Hugs, girl} Juls~
Thank you, Nellie!
CD....Thank you for your prayers.
Sandi....You know I hang onto every word you write. I can feel the psychic hug and warm embrace all the way to Ohio!!
Juls...Thank you for your sweet comments. I hope spring hurries!
You know where I'm at if you need me...and you know that I love you.
xoxoxoxoxoxoxo
Ah, Mel....what would I do without you??? Thank you for that!!!!! xoxox
It's such a heartbreaking subject and yet you write about it beautifully. I'll keep you and your family in my thoughts. :)
What an emotionally painful ordeal to have to go through . . . for both you and your mother.
Your mom has been so blessed with a wonderful daughter . . . may God continue to give you strength and courage.
Love your escape . . . you have inspired me to get my office organized.
Oh dear! This sounds utterly exhausting for everyone involved.Wanting so much to do the right thing for your Mum and wanting to calm her but being unable to do so. Heart wrenching stuff. My thoughts go out to you and your family.
God bless you, Carol. My sister and her family have been going through a bit of an ordeal as of late. We listened this morning to Natalie Grant's "Our Hope Endures" and I found comfort. Perhaps it will bring some to you, as well.
Thanks so much for your visit to my blog!
I am crying now. Your are losing your mom too. I know exactly how it feels cuz my mom is leaving soon and I don't want her to go.
I wish you peace in your studio and more happy memories with your mom to keep you warm when she leaves.
You sound like a loving and faithful daughter and she is lucky to have that. Stay close and cherish what time is left even when it is hard.
Tried to post a comment but must have been crying to hard and goofed.
May you have amny moments of grace with your mom before she is gone.
My mother went through this with my Grandmother. It is so difficult. There is just not really much one can say...
I know what you are going through. It is good that you are able to get this all out. I hope it gives you just the slightest bit of comfort.
Your Mom at least doesn't realize, at least not on this level, what she is saying or meaning herself.
I always believed that my Grandma was somehow, at least half way, to where she was meant to be in Heaven. For some reason, the physical body just hangs on...
there is always a reason, though not always clear to us.
Stay strong
BG
Just wanted to tell you I can so empathize with what you are dealing with and can sympathize with you over that. My grandfather had hardening of the arteries which is pretty close to Altzheimer's -often didn't know Grandma or my Mom but since he'd rarely called me by my given name, always referring to me as "The Kid" I don't know if he didn't know me the last two years of his life or not, as I was still "The Kid." He would hide things, try to run away, not remember people, events, etc. And considering he had been such an intelligent man, a wonderful gardener of both vegetables and flowers and to see him unable to attend to those things or to enjoy the books he'd always loved -all of it is so sad to watch unfold. Before my Mom died, I could see many of the signs coming on in her of the dementia/Altzheimers stuff and I am truly grateful that the cancer took her before the other got a terrible hold on her. It's about the only thing I fear about living is that I will contract that same problem. For my kids sake, I sure hope it by-passes me.
But please, don't think you are guilty of doing anything wrong as you can only do so much when these patients get into one of those frames of mind.
Carol, I don't think it is cruel AT ALL to pray that your Mom should not suffer anymore. When we have to sit back and watch loved ones suffer so much, we pray and hope that the suffering will soon stop. I watched my mother slip away from us day by day just last Sept. and I know the pain of her not remembering me, not recognizing me on some days,... well, it is just too painful to think back on. But I will keep you in my thoughts, and don't feel bad about posting "downers". You have a lot of support thru blogging, and that is a wonderful thing! Life is not always sunshine and sweet stuff, so downers are part of the package!!!
Beth...Thank you for continued thoughts.
Gail...Thank you! Now get thee to your studio and start sorting!!
Sam...Thank you. Yes, you wouldn't guess it, but it is totally mentally and physically exhausting. No amount of rest in between seems to remedy it.
Bonhomie...I'm so sorry your sister's family is also dealing with this horrific disease. It's not a pretty picture. I am going to go listen to "Our Hope Endures" as soon as I post this. Thank you for recommending it.
Gail...May you also enjoy the precious time your mom has left. Blessings to you and your family.
BG....You are so right: she is already half-way to heaven. I'm so glad she doesn't realize how truly awful this is. Somehow, she thinks WE'RE the ones who are confused! As always, thank you for your pearls of wisdom.
Jeni...I echo your fears. It's actually worse for the family, than for the afflicted one. Let's pray that they find a cure...or the causes for this horrible disease very very soon.
Debby.....Thank you for those words. You know exactly how I feel.
Writing down the events and feelings is so so 'freeing', and oftentimes gives me a better view of what's happening, and how to handle Mom, and how to better cope.
I'm so sorry! I've been a paramedic for 15 yrs and very often see the results that this disease does to families. One day at a time. Take care!
I'm so sorry that you and your mother are experiencing such anguish. Sending best thoughts your way.
Hi there - I found you through your etsy shop (I just ordered the two twilight necklaces for my cousins - they are going to LOVE them :) You have such a gift! I prayed for you as I read this - I'm so sorry about your mom. We've dealt with this in my family, and it's so hard. It was so hard to watch my great grandmother hurt. My dad had a rare form of cancer and while he was on his meds he would wake up in the night and not know who we (his grown children) were, and would cry and beg us to give his babies back. It was the hardest thing I've ever gone through. I'll be keeping you in prayer daily.
Jinx...You are so right: 'One-day-at-a-time' is the only way to handle it. Thank you.
Hilary...It's always nice to 'see' you here. Thank you!
Melissa....I wrote you a message on etsy. Thank you for your sweet thoughts and prayers.
You continue to be in my prayers, Carol. Sorry to hear you have a sick hubby! Hope he's better.
That Ice picture was a great composition!
PS Thank you for the nice comment!
Great big HUGS Carol. Never hesitate to write what is in your heart hon it is good for your soul and to ease the pain just a bit .I am glad you find some peace in your studio ,sometimes drowning in our creations is all we can do to keep a bit of peace in such a heart tugging war against this thing that takes over a loved ones mind . Stay strong sweetie
HUGS
Renae
((((((((((((((((Carol)))))))))))))) It's a tough time, but He knows you're up for the challenge. And, I know you'll do it with grace and dignity - enough for both you AND your mom.
I have not had to deal with this personally, but had just a glimpse into this world the other night. My husband was apparently having a bad dream. I was still awake and he came from the bedroom, obviously dazed (still asleep?) and said, "I have to find the baby! Where is our child?" I'll make this brief, but it took me several tries to convince him that the baby was 35 and living in New York. Even then, he didn't really believe me, but said that he would accept it if I said so. He barely remembered this all in the morning. It was scary, and it wasn't even "real" in the sense that it represented something wrong with him. Just something for us to laugh about the next day. I'll say a prayer for you.
myqualityday.blogspot.com
Thats so depressing and Sad... I am sorry your mother is in such Distress I wished she was able to communicate to you what she means by home?
Does she by chance have Altimers? Even though you said she remembered she sold her home 3 years ago? Are you sure, she was just pretending like she remember, maybe she did forget she sold her home untill you said something?
That is so sad.... I sent my wishes and best hopes to both of you to help you BOTH cope though this!
~ Christopher ~
http://life-accordingtochristopher.blogspot.com/
Carol, I am so sorry for the pain, confusion, and frustration. I am praying for you and your family.
That's so moving. I can't imagine happening that to me and my mom. I wish you all the best. I guess the most you can do now is offer everything to God and cherish every moment with your mom while she's here.
I am glad you are able to voice your feelings on this blog. It must be so heart wrenching to have to go through this with your dear Mom. When My Mom had cancer in her brain she often had some thought tendencies like Alheimer's and my Grandmother did have Alzheimer's. It is terrible as a daughter to have to be the "Mother" when you still want to be the daughter!!!!... and to feel that you can not help your mother is the most difficult feeling to face. I pray for you and your Mother. You are a wonderful daughter.
Amy
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