Wednesday, May 11, 2016

The Last Birthday at Home

BB, 68, not knowing what to do with candles.

I sent my regular check-in email to our case-worker on Monday morning after a very wonderful, albeit emotional, Mother's Day weekend in Asheville. No News.

And then an hour later there was news. A bed at an assisted living center (memory unit) was available for my Mom. She had been on the waiting list for four months and we knew a bed was coming available just didn't know the exact date. I had prayed it wasn't before her birthday or the wild Christ School 50th Reunion for my Dad and it wasn't. It let us have a huge celebratory weekend with my father's classmates, all of whom love my Mom to pieces. 

She moves in less than two weeks.

I sobbed at the email. My brain went numb. We are taking her from the home she has lived in for 33 years and leaving her some place strange. Some place cold. Without her beloved husband who she has massive separation anxiety from. Without her beloved Boykin, Gumbo, who she has even more massive separation anxiety from. Away from her plants, her birds, her gardens, her bed and her closet. From her bubble baths, her make-up and her jewelry. From all the comforts of her home that she loves so much, to a place that looks like a hospital and where she knows no one. 

This is the gut-wrenching part. And if I seem like I'm being melodramatic it is well deserved. 

We are concocting lies "therapeutic lies" as Dayna Steele so wonderfully emailed me yesterday morning. We are going to use the approach that she is getting rehab for her arm that has myclonus (jerking and moving on its own). We are making a packing list. I'm creating collages in plastic frames because no glass is allowed. We have to make an appointment to cut her rings off (her arthritis is so bad in her hands they are stuck) because apparently nursing homes are like a bad neighborhood in Detroit. I need to write her name on all her clothes we send like I'm packing her for summer camp.

Gut-wrenching.

And then there comes the moment my father, brother and I say goodbye and walk out of the facility and get in the car and look at each other. Will she scream? Do we redirect her like my friend Erin's parents did and had her go look at horses at summer camp while they drove away? Will she be scared? Lonely? Hate us? What do we do with ourselves then?

Or maybe she will thrive? Become the mayor? Dazzle everybody with her warmth? I received a comment on the blog from last week from one of her friends at Jazzercise and it could not be more true about my mother. 

Beautiful pictures. Barbara looks so happy. In fact she almost always is happy at Jazzercise. Even when she comes in a litlte serious, all it takes is the music to start and she is happy and singing along again. She still loves to say HI to everyone and spread her love and thanks for every little thing we might do to help her. She brings a smile to our faces even on days that we do not feel like smiling. Her love is contagious. 

Are we taking this broken bright light and placing it in a dark cave? I know that is not true but that is how it feels. We are ending her reign. Silencing her. Imprisoning her love. 

It is time. We can all admit that. We are well aware that most people would have done this ages ago. Being an Alzheimer's caregiver is taking away the Robin everyone knows and loves. And if I'm brutally honest it has done some work on me too. We know this is the best thing for her safety and health. But knowing it is time does not make this step any easier. 

Please pray for us, specifically my father. I'm treading water in this deep pool of emotions only by making to-do lists and emailing family and trying to create a room for her that she will love. I'm in project mode. I can collapse the day after.

I know we are not the enemy. Alzheimer's is the enemy. But that does not make these next two weeks any easier on our hearts.

16 comments:

  1. Hang in there - cannot imagine how hard this will be for your entire family. Sending lots of love & comfort to each of you. Spencer

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  2. I am so sorry, Katherine! Praying for your entire family during this transition. I love how you said she might become the mayor - that is so true. No one knows what her reaction will be but you have done everything you can! We often think we can handle sick if it is mental illness but this is no different from than if she had severe diabetes or needed a new kidney. You could not keep her at home with those ailments. You are brave to share y'alls story and I know it is helping so many people - myself included!

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  3. I cannot even imagine. Just reading this brought me to tears - thinking of you, and your family, often.

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  4. Precious Girl et al..

    I simply cannot believe how the universe changes lives in a year, month, week or day.. I know it may sound condescending, but how proud I am of you. I hate when people say " I wish we could have been there for you more." But with all the love prayers, thoughts, hugs and kisses, I wish with all my heart that we could have been. As I write this, with tears in my eyes, please know that in spirit... LOVE YA, MEAN IT.

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  5. Praying for strength and peace. There are no words.

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  6. I don't know you and I forget how I even found your blog, but your beautiful words make me feel like I'm on this journey with you and it has moved me to tears more than once. I can't imagine how hard this must be. Wishing you peace.

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  7. I'll be keeping you and your family in my thoughts and prayers these next few weeks. May you find peace amidst the difficulty of this next step in your journey. I'm so sorry.

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  8. These next few weeks will be trying, but this will be for the best, and you all as her family members are making this selfless decision for her safety and betterment. So hang in there and drink some good wine! Hugs!

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  9. Prayers for strength and peace for you and your dad and for a smooth adjustment for your mom. Alzheimer's is so cruel, and there is no easy path. My dad and sister made the decision to keep my mom at home, but the cost to them was extremely high. One of the saddest things was that my mom kept asking to go home even though she WAS home. I wish none of us and our loved ones ever had to go through this.

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  10. Oh Kat - I'm so sorry. Heart-wrenching. I know this has to be one of the hardest decisions for you all. We will be praying for you and your sweet Mom and Dad <3 xoxo~Christie

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  11. I can't imagine what you and your family are going through, but please know you are in my thoughts and prayers. My grandmother has dementia and was recently placed in a care center. She had previously been cared for at home with round the clock nurses but that became too expensive. While we would all rather her be in her home, she has done better than expected in the new center. She made a "boyfriend" quickly and they walk around holding hands and eat together. She also has found some new friends and though they don't know each other's names, they visit with each other often. My mom had to tell her that they were painting her condo to get her comfortable with the place. It's definitely heartbreaking.

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  12. You are unequivocally doing the right thing! Damn, it's hard - but, most important healthcare decisions are. I'll be praying for you all. Lean on those around you and hold on tight to your husband and family. Your mother is one lucky woman to have you

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  13. kATHARINE,

    I LOVE YOU ALL SO MUCH. THIS IS A HEARTBREAKING ROAD THAT YOU ARE TRAVELING AND MY OWN HEART IS ACHING FOR YOU AND MY PRECIOUS BEANO. I WILL BE PRAYING HARD FOR BARBARA AND YOU ALL.

    KISS YOUR BEAUTIFUL BABIES FOR ME. MUCH LOVE, KITTEN.

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  14. Katharine - that was so beautifully written. My heart breaks for you and your family. Your mom would be so proud of you - your writing, speeches, and just you being brave (and tough). All my love to you all. And if you are going to collapse, just remember you are always invited to come do it here. Xoxo

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  15. Parenting our parents, a lot earlier that we ever imagined we'd have to do, is so so difficult and emotional. Decisions we have to make, for their sake, and for ours, are harder than I'd ever imagined they would be. We lost my mom a year ago at 66 to metastatic melanoma to her brain, no one including her had any idea she had it until she had a sudden stroke-decisions about treatment, hospice versus home, etc. that my dad and I had to make were extremely difficult and I always felt like I was letting her down no matter which decision we made...I still feel like I have since she's gone. I'm certain you, your dad, and your mom's healthcare providers have analyzed this from her here to Heaven-now you just keep praying, I always felt like it was all I could do.

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