Emotional day. I look for the JOY every single day, and try very hard to bring that joy to the surface for my sweet Momma as best I can. I was watching her this morning, eating her breakfast, and as I wipe the milk off her chin -- she looked into my eyes, and said, "I love you". My heart melted, and I tried my best to keep it together - she said those three words with volume and clarity --- we take so much for granted.
Today as been a day of reflection for me; remembering my Momma and the days gone by -- oh how she has changed. Three years ago, she was dancing with my father at her surprise 70th birthday party --- laughing and smiling. How precious life is, and how quickly it can change. Three years later, and my father has passed away, and sweet Momma is 80% in a wheelchair.
My Momma asks me randomly if I think her legs will ever work again? Sometimes, out of nowhere, she will say, "If only I could just walk again" --- it breaks my heart.
Somedays her voice is so very soft ... I have been sitting and chatting with her the last few days, and actually recording our conversations, only because I know what the future holds. OH this disease is brutal, and today it has really zapped my happiness -- tomorrow is another day, and I will rebound with determination to fight for the joys of the day, but this evening --- I say thank you to everyone that is on this forum, because truly, I have come to realize not even my closest family members/ friends understand this journey. Blessings to you and yours. xo
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bazooka111
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My heart is with you Kim you still have lots of time together Im sure.
Your post has made me cry this morning as i remember so well these stages. You doi so much to bring happiness to your mom and she loves you for it. But sometimes its these special moments when its just the two of you together like being there to wipe the milk of her chin that show how much she appreciates that she is safe and loved in your care .
It was so unexpected Lynda ... and maybe that is exactly what I needed to hear. I mean, I know she loves me, but it has been a long time that she expressed her love for me without a response to me saying I love you first --- I am cherishing these moments for sure. I hope you're well.
Your post has bought tears to my eyes as it brings back so many memories. It’s so good you have recorded her voice. I regret never thinking about doing that. Somewhere amongst all the stuff in my attic I have a couple of old DVDs showing my darling giving a speech at our silver wedding celebration and in the garden with the boys. I have kept a very ancient TV as it has a DVD player so one day I’ll get round to finding them. Oh how I wished we labelled them properly. This site kept me going as well and in some ways still does. When I see what a wonderful job you are doing with your mum and the love you share it reminds me that our loved ones never really leave us if we have our memories and you always remind me of our happy times. The not so good times fade but you won’t forget in the future all the great things you can still do together now.
Thank you for bringing back happy memories.
❤️XxxX
PS. I have just read Lynda’s post. I could have just put ditto 😊 XxxX
All smiles ... I try not to do too much, but maybe just enough to keep her going ... good stimulation. I am learning that her window of activity is shorter, and Im having to abide by that -- she is now going to bed sooner at night --- so, we adjust as we move forward. ((hugs))
Sending huge big group hug. ((((((Xxx))))))Those of us the other side, hold on to the precious memories you have described. Like Bev has said, the unpleasant ones will fade into the background. You are right, nobody really understands what we go through on a day to day basis. Just know, that we do and from the bottom of my heart, you are doing a fantastic job of caring for your Mum, be very proud of yourself.
Thank you Anne! I truly have to come to realize, no one understands this journey -- I am surrounded by people, but no one truly gets it. You know what I mean --- short 30 minute visits are sweet, but once they leave ... reality is, she is 100% dependent on me now. Mom looked beautiful today -- Saturday afternoon luncheon with a few friends, and yet -- no one knows what it took to achieve that. I honor my Mother, and I know there will never be a moment that I will regret these days of our lives. ((hugs))
I fortunately have a number of videos of Chris talking and of us dancing at his 80th birthday - just after his diagnosis. They are very precious. I just chanced on a video I made of my parents laughing ( and they died 20 years ago) . It made my heart stop.
I feel I know your mother from your pictures. You're doing a grand job and it's good to hear you get your rewards from her.
I, too have dvd / VHS tapes, and I am looking forward to the day I feel my Mom is ready to watch the ones with my Dad -- Im waiting a little longer, but I believe one day it will be therapeutic!
The isolating pain of as you say “not even my closest family members/friends understand this journey” is so true as a care giver to a CBD/PSP loved one, but this site has shown us that we are not alone. You are not alone and I am glad you are here. The emotional and mental support from friends that I dont really know, has been incredible.
Prayers of JOY, strength, patience, and love, covering you today. Blessings,
Those breakfast type moments are the ones to cherish not the random questions about her condition. You are doing a remarkable job taking care of you mom, keep up the excellent work!
Thank you Ron! I feel so blind sometimes to the needs that seem to change every other week ... but, I am proud to say she hasn't had a fall since June 2nd!!! Praise God!
I had several phone messages from my son on my answering machine. One was when he was well and chuckling, others as he progressed, the last was totally undecipherable. One day,awhile ago, when I went to delete a message from someone else....I must have hit the wrong button because ALL THE MESSAGES ON MY MACHINE WERE DELETED. The only way I could deal with it was to interpret it as GOD DOING FOR ME what I don't think I could ever do myself.
I think you are wise to record your mom's voice on a separate device. I have the CD of Jeff when he did moot court at Boalt (UC Berkeley). He was sooooooooooo young.
Agree with so many who replied to you before me. Oh I wished I had recorded my hubby’s voice in recent years. Thankfully I do have some old DVD’s with him making wedding speeches etc.
You are doing such an amazing job. How wonderful your mom was able to articulate her feelings today - she clearly adores and recognises all of your efforts.
God bless you and your sweet momma. My eyes sting with tears for you. My baby sister died of PSP July 19, 2018. I remember how it was. How I felt sitting in the chair next to her bed as you may do with your mother. It's wonderful that you think to record your conversations. I have an iPad, and I used it to not only play music for my sis but also to record music therapy sessions in her room (she was in a care center at this time).
How wonderful that she said, "I love you" clearly to you. Treasure this. I had some special moments that surprised me when Diane spoke up a phrase after mostly silence and low mumbling. You are both on a hard journey as are all family and friends who come close and see the ravages of this terrible illness. My prayers are for you, for comfort, strength, endurance, and healing. One mysterious day my sister (unable to walk without assistance) did get up from bed on her own and walked about 5 feet. It was a shock! She had forgotten to remember she couldn't walk and just did it, trying to head to the bathroom (I was in the other room).
May tomorrow be better for you and your mother. Hold onto the joys.
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All smiles ... I try not to do too much, but maybe just enough to keep her going ... good stimulation. I am learning that her window of activity is shorter, and Im having to abide by that -- she is now going to bed sooner at night --- so, we adjust as we move forward. ((hugs)) 
Love and tender touch is important. 
How meaningful can you make your loved one's memory?
