Wednesday, July 19, 2017

Our Visit So Far

We arrived on Sunday and went to see my mom in the Memory Care unit of the Assisted Living facility. She was sitting in her recliner, resting. When she opened her eyes and saw us, she gave us the sweetest smile and warmest greeting. She remembered who we were. She had been having a bad day, the kind of day that worried the staff there.
Roger photographed my mom and me together. I was so happy to have my arm around her shoulders and our hands together like this. So much love, so much love.
I photographed Roger with her. It was a wonderfully playful moment. Roger pointed at the camera and told her to look there. She thought it would be funnier to just point with him. So good to laugh with her.

On Monday the phone rang at my sister's telling us that the facility thought my mother's behavior had changed so much before we arrived on Sunday that it warranted a trip to the ER. They told us, "If you don't take her, we'll call 911." Well alright, we said, we'll take her. And that's what we did.
We picked her up and spent the next 5 1/2 hours in the ER with her. Turns out Monday's are their busiest day, and the hospital we took her to is the local trauma unit. So, while we waited, people arrived in various stages of bloody messes, and others arrived via ambulances and helicopters. It was quite a scene. Eventually, we were put in a room that was also a bit of a storage room where staff came in to get hot blankets out of a large heater, and a giant cupboard full of hospital stuff. One nurse came in to check every item in that cupboard for expiration dates and toss to the floor all the things that were out of date. He was not on duty to be mom’s nurse, but he just couldn’t help himself, so he helped her use the commode twice. He brought Roger and me some food, and after my mom had her CT scan, he brought her pudding, apple juice, and Cheezits. He was THE BEST. We laughed with him and had a good time. That made a huge difference. She had the CT scan to see if she had had another stroke. Negative. So, we waited to be released and took her back to the facility. It was quite a day. 

On Tuesday we brought her to my sister's so she could spend a few hours with her great-grandson. It was adorable in every way. My mom laughed. The baby laughed. There was a lot of cooing and sweetness. What more could we ask for? Not much... except maybe to have my mom back with her full cognitive skills. She's so gone, farther than I thought possible. Still the love remains.

 


60 comments:

  1. Robin Andrea,
    "How heavy the empty heart,
    How light the heart that's full."
    --Beth Nielsen Chapman

    Your heart is probably both heavy and light. Such is the nature of dementia.
    It will be an accomplishment when facilities do not send a resident out to the ER just because their dementia is waxing and waning. Spending hours in an ER is horrible, although it sounds like you had a wonderful nurse who alleviated your troubles.
    I wish for you more special moments with your Mom...they may be fleeting, but oh so meaningful.
    Peace and love to you and your family.
    Cathy McDonald

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    1. Cathy-- Yes, it would be so much easier if the facility could just recognize the change in behavior as the waxing and waning that goes with dementia. The special moments both uplift and break our hearts.

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    2. And I have to wonder, what IF she had another stroke? What is anybody going to DO about it? Why put everyone through the trauma of 5 1/2 hours in the ER?

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    3. good point, I'm glad you said it, someone had to. Idea for a picture: next one, both give us the finger, but a different one.

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    4. Tara and Steve-- I think they may have just wanted information to see if she needed to be moved to a higher level of care in the facility. It was absurd to take her to ER. A doctor appointment would have sufficed.

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  2. What good photos! Even the hospital one! So good you had this time together.

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    1. Susannah-- We have one more day here in southern CA before we start the long drive home. Not sure how we're going to spend it, but sitting at her side is definite!

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  3. Can see the tears welling up in your eyes in the first photo. It is sad to see someone grow old and loose their memory like that. I remember my mum getting forgetful and people saying I should do something but what she just forgot a few things a but was fine otherwise. You did the right thing going to ER though I'm not sure what they would do over here. I do know both countries are the same on a Monday as I found out first hand. I ended up getting taken to hospital first thing after dropping a load of steel on my foot and breaking some bones. As the morning dragged on more and more people turned up with sports injury's. Nope Monday is not a good day. Hope things get better for your mum and more to the point you fell a bit happier

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    1. Bill-- That's quite a story about your ER experience. How long ago was that? My eyes are probably always filled with tears when I'm with my mom now. It's so sad to have her slip away like this while she is still here. Sigh.

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  4. It was so good that you were able to bring her to the hospital. It surely would have been extremely disorienting for her to be taken by ambulance.
    And what a wonderful visit you've had. It's ever so hard to watch dementia take someone you love, but as long as they are happy, that is something to be grateful for. When there's no chance of going back, we can only hope that the journey to the great transition is as pain-free and gentle as possible.

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    1. CCorax-- I'm glad that Roger and I were here to do the ER trip with her. My sister has done it many, many times. I love what you write about no chance of going back, so hoping that the journey is pain-free and gentle as possible. Yes, that's where we are now. Do go gently into that good night.

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  5. I'm sure it was a great help to your mom to be with her at ER. As it happens, that's where we also ended up on the weekend and mom is back in the hospital (argh!). Such hard times for all of us, but it does help when we can all be together and don't have to face these events alone. Take care and my best wishes to your mom.

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    1. bev-- I'm so sorry that your mom ended up in ER and is now back in the hospital. Yes, such tough times for all of us. Sigh. Hope your mom recovers as soon as possible and gets to come home. Take care there and our best wishes to your mom too.

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  6. I think you have it right, cherish your mother as she remains. We're not the people we once were either.

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    1. Harold-- Yes, so true, we're not the people we once were either. Ah, aging.

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    2. True, and beautifully said.

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  7. I wish you many more of those sweet and happy moments with your dear mother. It's a long hard road but there are bright spots now and then.

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    1. Miz S-- Thank you for that. Makes me wonder how your mom is doing. My mom's decline has been a whirlwind of a downward spiral.

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  8. Oh, Robin, having been there with my beloved father, I know the joy and sorrow of those visits. You and Roger are on my mind and in my heart. XO

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    1. YT-- Oh yes, the joy and sorrow. So happy to be at her side, so sad to see the hollowed out person who once was so full of life.

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  9. I love that sweet picture of you and your Mom plus the playful one with Roger. It was a shame your Mom had to spend so long waiting for the CT scan by glad it was negative. That nurse sounds like a wonderful guy and I am so glad he made the ordeal almost pleasant.

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    1. Patti-- The sweet moments are absolutely the best. Otherwise, it is pretty sad to watch someone spiral down like this. Heartbreaking in every way. That nurse made all the difference in the world.

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  10. Physically your mom looks really well. Dementia is a rough ride for both, those who have it and the family dealing with it. Your mom is lucky to have you two.

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    1. Dave-- Thank you for that. My mom is going to 92 in September and she does look really well! My sister lives closest to my mom, so much of the work falls to her. We drove 700 miles to get here and pitch in while we can.

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  11. thank you for this post. I was wondering what was up. I have no words of comfort, my dear, as this is just plain shitty. But it is SO sweet that she remembered you when you arrived. A beautiful moment. Hold on to those moments. I love ALL of you.

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    1. Tara-- We just went to visit with her and found her playing cards in the dining area. That made us so happy. Tonight we're going to have dinner with her. It's a sadness without measure.

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  12. Gandhi was right. Love is the most subtle power in the universe. As you wrote, "So much love, so much love." Your photos move me.

    "The moon has a face
    And it smiles on the lake
    And causes the ripples in Time
    I'm lucky to be here
    With someone I love
    Who maketh my spirit to shine."

    (from Warren Zevon's song "Don't Let Us Get Sick" -- I changed "like" to "love)

    Love always from your friend,
    am

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    1. am-- Thank you for sharing such kind words, lyrics, and love. So much appreciated.

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  13. My heart aches for you. Sending positive energy your way, corny as that may sound.

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    1. isabelita-- It doesn't sound corny at all. Positive energy is the kindest gift. Thank you for that.

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  14. Robin, cherish these moments, every one. How wonderful that your Mom knew you, and that you have this time together. I know how hard it is to live so far, and to see this loss of her self-ness when you've been away. Wishing you peace and love and joy. Sending hugs.

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    1. Linda-- Cherish is so much the right word. My heart is breaking already just thinking about leaving tomorrow. Tonight though we'll celebrate with love. Thank you for your good wishes and hugs.

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  15. I'm glad they ruled out stroke and she can still interact in a positive way. A day in the ER is never fun!

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    1. Steve-- We were so relieved that she hadn't had another stroke. Just the sad and relentless decline into dementia.

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  16. Robin, I understand so much of what you share after living through this with each of my parents. I was so glad Mother always knew me, but braced myself for the day when she may not. I felt nervous each time I arrived wondering if that would be the day. I spoke to her on the phone daily from WA. She seemed more aware and more communicative on the phone than she did in person. I wondered if there was just too much happening face to face that distracted her. I asked her once where she went when she was quiet and stared straight ahead. She looked at me and never responded to the qt. I want to hug you, Robin, and tell you that there are so many of us daughters of mothers/fathers who seem to have become lost in some unreachable place. Never forget that there are tiny coves, even on the worst of days, when she has glimpses of her life as you remember it to be, too. Of that I am sure. I have imagined it to be like a train ride with the countryside flying past us or like watching a movie in fast-forward motion. My father re-lived his very early adulthood days during the last 6 months of his life. Every night he dreamed he walked to the city where he had lived, and he'd tell me how tired he was when he woke. Then he'd tell me everything he did while he was there. He had no memory of the 2 homes he'd lived in the past 60 yrs of his life. He remembered my mother who had been dead 4 yrs by then and his mother who had been dead 23 yrs. Memory is complex, isn't it? From the outside it looked like his life had turned into fragmented vignettes of his earlier days with a very small amount of his later years mixed in. It is so hard watching the years shift into a dusty remnant of what they once had been. I hope I don't have this disease but wonder every time a word, phrase,or memory escapes recollection. My DNA seems fragile with 2 parents having had it. Sending you love and wishes for continued shared moments of laughter, love, and joy with your precious mom. I love the pictures you shared, and the one of Roger and your mom is adorable! <3

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    1. Sky-- Thank you so much for sharing these stories. It really helps to know the paths people take through this winding brain trail of dementia. I also wonder whenever I can't remember a word, or if I've taken my vitamins, if I'm on the path to Alzheimer's. Truly scary stuff. So glad you liked that photo of Roger and my mom. We love it too!

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  17. Your mother (and you both as well!) looks so lovely and well in these pictures. I understand that this is not the reality you experience and that her life is so much more precarious at the moment. I hope you can fully cherish the time with her and find happiness and joy being together no matter what.

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    1. Sabine-- We love every minute with her, even the confusing and complicated ones. She does look good, and we love telling her that. It makes her so happy!

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  18. We travelled that long goodbye road with my Dad, so I feel everything in this post. We just make the best if it, grab those precious happy moments, and deal with the harder, heartbreaking times. I feel you guys, thinking of you all.

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    1. RPowers-- The long goodbye is really the toughest. We are leaving today for the first leg of the journey home. We told her many times last night at dinner that we were heading back. When we finally said our good byes, she said, "See you tomorrow." Sigh. Thank you for your kind words.

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  19. I'm happy you had this time with her, and there was love and laughter.

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    1. Colette-- Thank you for that, yes to love and laughter!

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  20. Difficult times for you, maybe more than her as she may be less aware. One way or the other, it comes to us all. Sometimes ways are easier than others

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    1. Rain-- Yes, that's what we think as we watch this unfold. My siblings and I feel a sense of relief that she is not anxious or fearful.

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  21. We're thinking about you all, too.

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  22. Such beautiful photos and words, and such difficult times! I wonder whether going to the wrong by ambulance would have gotten her more immediate care? And how are you supposed to know what to do? I send you so much love -- and also want to cyber- introduce you to a Canadian writer friend of mine who is dealing with this with his mum all on his own. I tagged you on FB. But if you'd rather not deal with someone else's pain right now, I understand and apologize.

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    1. Maryanne-- I wondered the same thing about my mom's ER care, had she been transported by ambulance. There's no way of knowing, and truly my mom's condition did not warrant an ER visit. We should have been able to take her to her doctor instead. Ah well. I would like to read your friend's Facebook posts. Thank you for that.

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  23. I listened to a Ted Talk by Jill Bolte Taylor yesterday and thought of you. She is a neuroanatomist who experienced a massive stroke and has lived to tell of her experience. It's brain talk. Interesting. Worth Googling. Made me wonder more about the La-La Land side of things and hoping that's where your mom is sometimes. Sounded lovely. Kim in PA

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    1. Kim-- Thank you so much for letting us know about this Ted Talk. I will definitely find it and watch. And thank you so much for thinking of us and commenting. I can't tell you how much I appreciate that.

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    1. phann son-- Absolutely true. We will all shuffle off this mortal coil...

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  25. So beautiful the photo of you and your Mother together, with your arm around her shoulders and your hands together!
    Yes, so much Love!

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    1. sonia-- Thank you for that. Yes, so much love.

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