Wednesday, September 23, 2015

I'll remember her that way


I haven't seen my grandmother since March 2012.  She is still alive, but very sick. My grandmother's illness first became apparent to me in 2006.  It was a fuzzy territory at first though.  She always had a batty sense of humor.  So she camouflaged her confusion with jokes and laughs, and we were probably too happy to take her word for it.  In 2006, my family did what would be our last Thanksgiving trip to Hilton Head all together.  I would always drive back home with my grandmother.   She and I easily agreed on music and would laugh and gossip about goings-on in the family.  The trip usually started with her driving off the island so I could take photos of the sunrise from the bridge.  She had done this trip many times and had a strong sense of direction, so I never paid much attention to anything except what Shakira or Britney song I was going to play next.   Until I really looked around and thought Where the hell are we?
I asked her if we were still on 95, knowing we were not.  She said yep, uh huh that's your dad two cars ahead of us.  And she was unusually defensive.  And the car two cars ahead was a red convertible with a black person driving.  Nowhere near resembling my pasty dad with a reflective baldspot in a white SUV.  Her eyes began nervously darting and then she burst out laughing and said I just thought he got really tan on vacation!  Around that time, my dad called to ask me if we'd like to stop for a quick breakfast in Charlotte.  When I told him how we managed to get off course, he insisted we stay put and he come to us.  I think he was worried she had had a mini stroke.  Not to mention, my sense of direction is so bad he knew I'd be useless finding our way back to I-95.  My +/- great great great great greatgrandfather would be horrified driving with me as I can get lost five minutes from home.  So that will not stand out when/if my cognitive function begins to fail.  I digress. 
As we were sitting and waiting, we were laughing hysterically about our whereabouts and deciding which one of us the supposed rest stop vandals would have their way with first.  Soon enough, my parents pulled in and we got resituated with my sister now driving my grandmother's car (I still wasn't trusted to drive).  My grandmother was fine for most of the morning, as we talked about what a fun trip it was and planned our upcoming candy making party.  Occasionally, there were comments that puzzled my sister and me,  We told ourselves she was just tired. 
I think back to that day every so often and wonder about my part in it.  Could I have helped anything if I hadn't ignored these red flags and brushed it off?  Hard to say.  It can be easy to give ourselves superpowers in hindsight and believe we could have fixed the unfixable.  As time passed, she began to deteriorate rapidly. 
During her decline, my mother completely devoted herself to my grandmother's care.  Anything and everything she could do, she did.  I had just started my own business, building a clientele from almost nothing.  With very few clients, I had a lot of time on my hands.  As Facebook friends of mine in that time will recall, with the barrage of new boyfriends, slutty selfies, and self-important statuses.  But when I wasn't busy being a whore, I was trying to help my mom.  By 2011, my grandmother was living in a full-time care facility.  Because she was young and physically healthy, she was an unusual patient for this facility.  So she was always getting in trouble.  They would call my mom and tell her she needed to get there and calm my grandma down.  This would happen all hours of the day and night.  Luckily, I was often able to go up in my mother's place. 
When I would walk in, my grandma was usually in a nurse's face or taunting another resident.  The awful thing about these situations is that they are funny.  Imagine a nursing home dining room with some people milling around talking to themselves, some watching The Lawrence Welk Show and then my grandma telling some poor old lady that she's fat and will never get a man.   What can you do but laugh?  Anyway, when I would walk in my grandma would scowl at me from across the room.  Then, as I got closer, she would light up and suddenly become sweet and agreeable.  She'd introduce me to the woman she was just bullying and say isn't she just the cutest thing?!  Sometimes she knew my name, sometimes she knew my face, but she seemed to always know she loved me--whoever the hell I was.  I'd say Okay, Nana, I'm busting you out and she'd dance around and sometimes stick her tongue out at her poor friend/victim.  At this time, she could still walk with ease. 
We'd walk to my car and she loved my car.  She'd say oh honey! You must be so rich! That seemed to give her great satisfaction, so I went with it.  I'd roll the windows down and we'd blast On the Street Where You Live (her favorite) or Motown.  She would close her eyes and sing along and seem so grateful for the fresh air.  Then I'd take her to Dairy Queen for a hot dog and Wendy's for a Frosty.  She always wanted me to tell the Wendy's employees that Dave Thomas wanted to marry her but she said no.  That story has never been verified, by the way.  This is a bizarre thing about Alzheimer's and dementia, as I'm sure you know.  She could remember Dave Thomas clearly and not her family.  We'd drive around and talk about Christmas or how cute my cousins are.  There were times I knew she didn't understand what I was talking about, but she enjoyed the pleasant tone and energy.  This went on for about a year. 
Her condition began to freefall.  In the span of a few months, she went from being able to walk and talk to being almost completely unable to move.  She has Lewy Body Dementia, which takes a rapid physical toll in addition to mental decline. 
In 2012, she had been moved to a different facility.  She required far more care than her previous memory care assisted living could handle.  Her condition was beyond the point she could be taken out without a special wheelchair and hoist.  My mom was tortured by the thought that she couldn't get out of the building for even a breath of fresh air.  She asked the facility if there was any way she could take her out for just a ride.  They felt strongly against it.  My mom, being the lifelong rule follower, tried to accept this. 
My mom's birthday is in March.  That year, particularly, I knew we must do something to buoy her spirits.  As I'm sure any of you know who have been in her position, there is not a moment's break from the worry about your sick loved one.  It was a record-setting super warm March that year.  Completely unheard of for us--weeks of glorious temperatures in the 80s.  It was about a week before my mom's birthday, and I was perusing a garden center.  I was asking my friend for gift suggestions for my mom.  It suddenly hit me as I was admiring a wisteria (that I bought and killed when it turned cold again).  Duh.  Obviously, the only thing my mom wanted was to get my grandma out.  Breathing fresh air, hearing music, feeling the sun.  I called my sister at work and said I might need a lot of money for a gift for mom.  As I figured I would need a handicap-equipped bus, a driver, and a nurse.  I had no idea how much this would cost, but knew my sister would foot the bill.  My sister and I are a good team in that way.  The only thing we disagreed on was that she wanted to tell our dad.  Knowing we were planning a granny-heist, I wanted as few accomplices as possible.   Hell or high water, Nana was coming to the party. My sister reluctantly surrendered on telling our dad and handed over her credit card.  To my surprise, I wouldn't need it. 
I figured I would at least try to do this on the up and up before I went about forcibly abducting my grandmother with hired help and a bus.  I called and spoke with the head nurse, Gayle. Gayle gave me a few Nos before she said Let me see what I can do before she said Yes, if... Gayle told me that the facility had a bus equipped to transport my grandmother and they could bring her if the temperature was above 70F, and there was not any rain.  Any water on the lift equipment could have made the process dangerous.  So if you live outside Ohio, you may not realize what exceptionally outrageous conditions these are for Ohio in March.  If it gets that warm in March, it usually lasts four minutes and is then interrupted by a snowstorm. 
Incredibly, the weather cooperated.  I'll never forget the look on my mom's face when she walked in and realized my grandmother was there.  It was first shock at the surprise party, then disbelief when she saw my grandmother, and then happy tears followed by sad tears and back to happy tears.  By this point, my grandmother was very far gone.  But there were still tiny bits of her that would come out.  She was so happy.  Amid all this, I made dinner for everyone.  I remember burning the chicken and the cupcakes were dry.  Just this once, however, not even I was focused on the food. 
A short while after that, my mom told my siblings and me that she did not want us to see our grandmother anymore.  She had become much more sick and my mother felt that she was no longer there.  This was a horrible ordeal for my mother to be facing. She felt, as my grandmother's decision maker, that she knew my grandmother would not want us to see her at this point.  If she responds to visitors, it is very negatively and is distressing for her.
left to right: my grandpa in his safari leisure suit, my grandmother,
great grandmother likely in Lilly Pullitzer,
and one of her many husbands.  I think this was Chuckie-Poo.


My grandmother was a beautiful woman.  She had a modeling career, and worked very hard on her looks.  She was never seen with a hair out of place or her makeup off.  Some may find this shallow, but I believe her beauty was one of the most important components to her existence.  She was also kind, smart, accepting, and funny.  My mother knows that my grandmother would want to be remembered that way.  My parents still go and see her every Friday.  The visits are hard on both of them, but particularly my mother.  She always feels she's not doing enough. The ugly part is that there is nothing else she can do.  My small part in the matter is making dinner for my family on Friday nights.  Attendance ranges from three to eight.  With working Saturdays, I got used to quiet Friday nights long ago (after finally learning that dragging my hungover ass into work at 7AM just isn't worth it).  We linger around the table and I watch my mom recover slightly.  My grandpa usually manages to fit in his Swiss whorehouse story, and we are able to laugh.  Sometimes he expresses his wishes to have been a better husband, my mom looks around and thinks about how proud my grandma was of her nice family.  The gravity of these moments is always observed by Lin, my grandpa's partner of 30 years (he and my grandmother divorced long ago).  Lin was a truly great friend to my grandmother and graciously shared my grandpa with her long after the divorce.  Lin raises her glass for a toast and says To Nancy, how we wish you were here.  She wishes, as we all wish, there was more she could do. 

Her biggest campaign appeared in Vogue-September 1955



The back cover 










































Today is my grandmother's birthday.  Of course, I wish things were different.  I wish I could help her.  I wish she were free.  My name is Stephen Andrew partly because my grandmother always wanted an Andrew.  My mother always wanted a Stephen, and knew how thrilled my grandmother would be for her first grandson to be an Andrew.  For as long as she could, she called me my Andrew.  What I can do is remember and appreciate her life.  Her legacy of kindness, her uncontrollable laugh, and her grace.  I'll remember her that way. 

Love, Your Andrew 

40 comments:

  1. Dear Stephen,

    What a beautiful, beautiful woman! Indeed!! Thank you for this heartfelt tribute to your grandmother. You shared some wonderful moments. I love the granny heist story :) Cherish the fond memories of your Nana. Happy birthday to her.

    xoxo
    L

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    1. Thank you, Loi! It felt good to write this.

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  2. Wow Stephen what beautifully written and lovely tribute to your grandmother. It sounds like she had a big influence on you and how you live your life and that is the greatest gift of all. Your mom is an angel wanting you to remember your grandma at her best. It's very hard as I am visiting for a 98 year old grandma weekly myself, I know. I love that you broke her out for the party. Sounds like you were a wonderful grandson. Her fun legacy will live on in you. Kim

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    1. Thank you so much, Kim! I will tell my mom you said that. I think that will mean a lot to her because she is always worried about doing the right thing. I'm sorry about your grandmother. 98! Wow. Thanks again.

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  3. Oh my, that was wonderful to read, full of the essence of life, the pain and then the best bits. Your genetics clearly came from this woman who sounds like such a firecracker, I love her.
    What a devastating disease she had, and rightly so that you are remembering her as she was.
    I love that you did the Granny Heist! Not many people would be that creative or have the guts to do that, Stephen Andrew big hug to you. xx
    and... you were an adorable baby no surprise there.

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    1. Thank you so much, Dani! The funniest thing with the granny heist was when my mom looked at me wide-eyed and asked "do they know she's here?!" She knows I'm prone to breaking a few rules. She said she had imagined my brother and me lifting her out! She was quite relieved to know it had been done with permission. Thanks, I think I peaked around 3. :)

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  4. What a great read. I enjoyed ever minute of it. My grandmother suffered from Alzheimer's before she passed in 2004. It is such a horrible disease. Cherish your many good memories.

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    1. Thank you, Ron! I'm sorry about your grandmother. You're right, it is an awful viscous disease.

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  5. Andrew, What a beautiful birthday tribute. It made me cry though. We all want to be loved and remembered. Blessings to you , xoxo,Susie

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  6. am reading this with tears streaming down my face.

    I love it all- the vogue, the photos of you as a baby, the comments telling the lady she was fat.

    I've just lost my grandma and it just sucks so badly.

    If you lived here you could come for dinner tonight. We're roasting one of those $20 chickens and having champagne x

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    1. Oh FF I'm so sorry, I know you're really going through it lately. I'm so glad you liked this post--I was apprehensive to post it for many reasons. One being that I knew you just lost your grandmother and was worried this might be more upsetting. Sending you my best wishes!
      Dinner sounds fab. I'll be there in 37 hours!

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  7. Stephen that was such a wonderful tribute to your grandmother and also to your mother. I'm so sad for your whole family having to deal with this. I follow quite a few of the blogs that you comment on regularly and always enjoy your fabulous comments, and now realise that there is a hell of a lot more to you than generally meets the eye.
    Kind regards,
    Cindy F

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    1. Hello Cindy! Thank you so much. That's such a kind thing to say. It is a very sad situation. The hardest part is the helplessness. I will say one good thing is that I am a lot more tenacious about getting everyone together. And we try not to lose sight of how lucky we are that she had enough money for the financial side of her care to not be a problem. thanks again for your very nice comment!

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  8. I have tears. Alzheimers/ dementia is just the cruelest thing. I think people don't realise or anticipate how much it changes someone's personality in the process. It's especially difficult if the person with the dementia is still relatively young and has to go into care in a facility with people so much older. I'm just so sorry you're all having to go through this long, slow, sad goodbye. This was a really beautiful tribute to her - she sounds like a wonderful person to have had in your life and your love for her and your family shines though xxx

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    1. That is so true. It's a horrible decline because there is an initial period before the diagnosis where the person seems to be acting bizarre, cruel, or disengaged that can isolate family members before they realize there is a serious problem. It was amazing with my grandma how much more difficult her treatment was due to her young age. She had so much more physical vigor than the other residents in memory care. Thanks so much for this lovely comment, Heidi.

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  9. So sweet, Stephen Andrew! I felt like I was reading a novel...you are such a talented writer. And your family! Love all the adventures and that you were able to laugh together. What a beautiful woman! You are a very special person and I have a feeling many people are much happier with you in their lives.

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    1. Thank you so much! I'm not sure to what degree people would agree with you on that, but hey, I'll take it :) I do feel so lucky to have a family with such a good sense of humor.

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  10. Oh Stephen...you write so well. My heart goes out to you...thank you for sharing those memories of your grandmother. She sounds like a fun filled lady.
    It is good to remember the better days.
    Hold those memories close to your heart.

    My MIL is living with this burden now and is in a care facility, she was the commodore's wife (Mr. HB's Father) of our local yacht club...she was a very social woman and volunteered for many causes...we miss her so much and try to engage her as we feel that she might remember and rally at some point...we never lose hope.
    We need to stick together...
    Hugs,
    XO

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    1. Thank you! That is so sweet of you. I had no idea your father in law was a Commodore! I have no idea what that actually means, but I have fabulous visions of it. So sad about your mother in law. It is such an unfair and horrible disease.

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    2. The yacht Club has different roles for the members and commodore is rather like a president...they lead the other officers..there's a fleet captain, fleet doctor, vice commodore, secretary...etc. Commodore is a respected and honorable position. There's a ladies group too...and a juniors group...MR. HB and I were in the juniors...that's how we met!

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  11. What a beautiful tribute to a fabulous woman, your grandmother. You write with such love and affection, it is wonderful to see the part she has played in your life. I really like that you talk about the funny aspects of dementia - and they are there, along with the awful times. We have had many years of experience of dementia in our families, currently my father (94). Recently he said his legs would not work properly. I said 'Well, they are 94 years old, after all' and he replied 'What! both of them???' He is very droll at times, even if he doesn't know my name or who I am.
    You are doing something very special for your family, cooking for them on Friday nights -there are times on visit day I can barely open a can of soup.
    And I love, love, love the Vogue pictures and your Grandma's unique fashion and style! All the best..

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    1. Thank you so much, Patricia. It is such a bizarre dichotomy that there is, in fact, humor in tragedy. Yet there almost always is. As uncomfortable as it can be to laugh at these moments, I just try to remember that if the tables were turned I would hope my family and friends would keep laughing. I'll bet your father felt relieved to know he had a matching set of legs! Thanks again.

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  12. What an amazing story, it hit very close to home because this last weekend I helped clean out my godmother's apartment as she has now been moved to a memory care facility and will no doubt progress along the same lines as your lovely grandmother. Dementia/Alzheimer's is such a cruel disease in that it seems to take the brightest, funniest, sharpest people on a long, ever-darkening road. I think your mom made a great decision to have you and your family not come anymore, so you can perhaps be left with happier memories than of how she currently is. Hugs to you as you go through this, because even from a safe distance it is an awful thing to have to watch a loved one go through. But your story is a beautiful tribute to her and her amazing, interesting life.

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    1. I'm so sorry about your godmother. Does she live close by? Thank you for saying that about my mom's decision. I often feel guilty about it, but do trust my mom knows best in this situation. You're so right, watching someone lose their vibrancy is heartbreaking. Thanks so much!

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    2. No, my Godmother lives four hours away, so it was a long round-trip drive in addition to an emotionally difficult day. You should absolutely NOT feel guilty about not seeing her at this point. She would,I'm sure, want you to stay with the happy memories and not see what's going on now, as it's not really "her." If it were me, I'd feel the same way. There is no point in visiting someone who you don't recognize and who does not recognize you, unless that is the only stimulation she receives (no one should be housebound and alone). But it sounds like she's being cared for, so that's already doing the right thing. Like I said, the worst thing about this disease is that in reality, they leave us LONG before their bodies finally give out. I'm already grieving my Godmother's "passing" even though her body is still alive and amazingly healthy at this point. But she -- as she would want to be known -- is already gone.

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  13. You have done your grandmother proud! A beautifully written, wonderful celebration of her life.
    I think your mother's decision for you and your siblings to no longer visit your Grandmother is the right one, but it is does put an enormous burden on your her.
    Now, I hope you have taken note of those safari suits and burnt all the photos of you in your Versace trailer trash phase.

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    1. Thank you. You're so right, it is a huge weight on her shoulders. I try to help her in little ways to lighten that load.
      Haha! I have to admit, when I saw this photo and his white safari ensemble I thought hmmmmmm maybe I need one! :) the Versace photos still exist. I'm a believer in hiding history, not destroying it! Except ex boyfriend paraphernalia. That, should be shredded and torched.

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  14. Achingly funny and sad at the same time! You write so well - your beautiful grandmother would have been very proud! As your mother and father and the rest of your family must be. It is a great celebration of their lives and your love for each other and I marvel also at your spirit and sense of adventure in organising the heist. Warmest wishes, Pammie xxx

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    1. Thank you so much, Pammie! That is so lovely of you to say. I feel very lucky to have such a strong and open family.

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  15. This is so poignant to read. Learning about your grandmother, your family's care of her and your ability to tell the story. Your Nana would be proud of you as your parents must be. My father suffered with Alzheimer's, so many of us know what you are going through. Your grandmother's journey is so long. We tried to laugh and be joyful in the face of the wicked disease also. Best wishes for you and your family, Stephen.

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    1. Thank you so much, Cindy! It has been a very long road. There have been so many times over the past few years where it seemed she was finally about to be let go and somehow her physical health would rebound, relatively speaking. Even now, she is comparatively very young to others with LBD progressed this far. I'm sorry about your father. I think finding whatever humor there is makes the insurmountable slightly less daunting. They're about as proud of me as anyone can be of a black sheep :) I joke that it's a rare case when the black sheep assumes the matriarch role. Though I refer to myself as the Gaytriarch.

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  16. This might be the best blog post I've ever read and my eyes also got misty. So similar to my grandmother Dodie's sad end also to Alzheimer's/Dementia. Her decline was much like your grandmother's with the confusion usually after dark and while funny, it also was alarming. Her decline was so rapid and painful to watch with my Auntie J carrying the full load while her brothers, quite typically, didn't engage at all. I was of some help to Auntie J but mercifully she didn't last too long once she wasn't her old self and I suspect willed herself out of that miserable existence in less than 6 months.
    Your poor mother and what a marvelous woman she must be. Your grandmother was a great beauty and love all those pics especially with the Chuckie Poo and holding you with her beautiful smile.
    Well done Stephen!!!

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    1. Thank you so much! That is so nice of you to say. It's awful when everything falls on one child. It also seems men often distance themselves from their sick mothers which I cannot comprehend. But of the many Alzheimer's stories I've heard, it seems to always always be a daughter at the helm of caregiving. Thanks again!

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  17. Beautifully written with love and respect for your Grandma. I have a feeling your Friday night suppers must be really special. Your Grandma would be in everyone's hearts around the table and the memories and traditions continue. Take care, wishing you and your family continues strength.

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    1. Hello, Nina! Thank you so much. The Friday night dinners are so nice. I take Fridays off and love to spend them cooking. It's nice because it's low pressure. Not the end of the world if I'm 15 or 30 minutes late with dinner!

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  18. I wrote this long,long comment on this post the other day with tears streaming down my face (usually you make me laugh until I cry, this post just made me cry) and it disappeared. Disappeared! Then I cried even harder....
    I lost my grandmother to Alzheimer's in May of 2003. I had the privilege of being by her side as she left this earth. Her brain simply forgot how to continue breathing.
    It was cute and funny in the very beginning, when I brought my daughter home from the hospital and she would peek into my arms in awe and ask my mom whose baby it was. My mom would tell her "It's Ellie's baby" and she would look at me with such wonderment in her eyes and gush over how beautiful she thought my daughter was.
    Five minutes later we would have the same conversation again from start to finish.
    I miss her terribly and wouldn't wish Alzheimer's on my worst enemy.
    xoxo,
    Eleanor

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    1. Oh I've been having trouble with my comments disappearing too! I'm so sorry about your grandmother. It really is such an ugly and horrible disease. But at least she was able to experience joy when you told her it was your baby! How lovely that she was still able to feel that.

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  19. Stephen, I love your writing - what a beautiful and poignant tribute to your grandmother. I so agree with your mother in reaching a decision to shield her from visitors, preserving her dignity and making it possible to keep your memories of her at her best. I tried to do the same for my late husband, wanting him to be remembered by family, friends and colleagues as the brilliant, witty and gracious man he was - the ultimate gentleman.
    There are few aspects about having dementia that can be described as being fortunate, but in our case there were some. I was 20 years younger than my husband, so I at least had the stamina to meet the demands of being a caregiver. He was in good physical health, other than the diagnosis of early onset dementia, so there weren’t other complicating health issues. Though the decline of his cognitive abilities continued as the disease progressed, he never forgot who I was. That is probably the number one thing I am most grateful for - most of the time I felt I could deal with most anything, but I know that no longer recognizing me would have been devastating for us both.

    Your description of the “Grandma heist” made me laugh and cry. I totally get your mother’s concerns about fresh air. I had cared for my husband at home for as long as possible, but eventually needed the help an assisted living facility could provide. I visited everyday, and because he was physically able, I would take him out a lot, even if just to run errands or go for a drive. He would always say “let’s get some air and get out of here, these people are all crazy”. Sometimes, if it was a nice evening, we’d go outside into the parking lot so we could dance under the stars.

    Eventually we got kicked out of the facility. Long story, but I had begun to suspect that his medications were not being properly administered, among other things, and decided to investigate. I snuck into the nurses’ office every night and photo copied his records showing he had supposedly received his meds, and then counted his pills to compare. The numbers didn’t add up, so I took my findings to the state’s office of health care quality. They were amazed I had managed to get this, and asked if I would continue because they had received other complaints, but had never been able to substantiate any of them. I agreed and was able to get enough evidence to have the facility hit with major citations by the state, and caused major staff upheavals - but as you can imagine, they weren’t too happy with me when they found out what I’d been up to, so they found a way to give us the boot.

    I brought my husband back home for several months, and then later to a lovely hospice care facility where he passed away. But not before the staff nurse and I tried to “spring him” once more on the day before he died. It was in January, (normally cold here and in the 30’s), but instead it was sunny and 70 degrees. We hatched a plan to try to get him into my car for a last drive in the countryside, but chickened out, fearing he might actually die while I was driving around (he would have said go for it!), and how would I explain that if I got pulled over (which you know would have happened!).

    Dementia is no laughing matter, but keeping a sense of humor really helps, and yours is terrific. It’s lovely that you are there to support your mother - your Friday night dinners undoubtedly help far more than you can imagine. I’m sure your gorgeous Grandma would be so proud of you! (Love her engagement photo - she looks like a film star.)

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    1. Okay I thought the time I was pulled over with foil in my hair and my teeth whitening trays in or the other time in a Christmas Dickie and spandex shorts was bad...yours would have trumped mine! What an incredible story. I'm so sorry for the loss of your husband. How lucky he was to have such a devoted caregiver.
      I can't believe that about his facility. How awful that that happened, but how smart you were to get proof! My grandmother was kicked out of her first place. And the new place had serious concerns about the meds she had been given. Drugs for traditional Alzheimer's can cause people with LBD to react very negatively and unfortunately there was some of that.
      Thank you so much for your very thoughtful comment.

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