So Momma and I have spent this past week at the lake house, enjoying summer-like weather. Beautiful blue skies, the sound of birds singing, along with porch time that brings on some wonderful moments of relaxation. These have been some stressful days; Momma has experienced some significant spasms in her right foot from dystonia -- medication adjustment (Baclofen), and it really effected her in the way of drowsiness. She is sleeping more these days, and is voicing the inability to use her right hand .... the bittersweet part of this disease, is being fully aware of what is happening.
Our recent discovery has been afternoon music time. I had asked Mom some of the memories she has enjoyed over the years ... one of the top three things she stated was the many days, when I lived at home, and we would all sit around the piano and sing some of our favorite tunes. I will admit that it took me by surprise, so .... I pulled out the keyboard from storage, and we are now spending afternoons with me playing the piano again and singing tunes. The best part: Mom and I are playing "Name That Tune" --- I will play familiar songs, and she will try to guess them --- the most amazing moment for me, is to look up and see her mouthing the lyrics of "You are my sunshine, my only sunshine" ... with a smile on her face.
Its the little things that make the difference --- making memories is all we've got.
Finding the slivers of joy in a world of chaos can be challenging, but I am a believer in that music is a universal language .... and OH how it stimulates in a positive way!
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bazooka111
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Hey Jen! It's not always easy to find those moments of joy, but it sure is refreshing when we do. As you know each day brings on a new challenge, but creating moments that bring a smile to her face is worth it all when it happens. My grandmother had a framed quote on her table that I remember as a young girl, "Sometimes your joy is the source of your smile, but sometimes you smile can be the source of your joy" ... love that!
No matter what gets lost (movement, speech, thinking..) music can reach a person, can’t it? Lovely that your Mom voiced that memory and wish, and lovely that you brought it to life 😊💖
Anne you are so right! Music can bring back the memories of our past like nothing else I have learned. I sat with Mom, engaging in one on one, uninterrupted simple chat -- It may take her a while to express her thought, but I continue to say, "Take your time ... the words will come" ... sometimes they do, sometimes they don't, but the rhythm that she and I have, I can almost always figure out what she is wanting to say --- I know that will not always be the case, but for now -- it is working, and she was able to express some of her favorite memories and things to do, so it has put me in action --- if she wants to sing, then we shall sing! (hugs) Kim
What a lovely place to get away to. I can imagine the effort it took to get there but it’s so good to make happy memories. Well done you for making your mum smile and may she continue to do so often.
Hey NannaB! It is a gift to be able to go up to the lake house to getaway -- We have managed to have a great set up there for Mom -- from the bathroom to the bedroom, so it is a home away from home with all the conveniences. Mom absolutely loves to sit out on the porch and watch the happenings of the marina -- that can be funny. You know "funniest videos" television show -- how funny it is to watch people do some of the crazy things?? .... well, that is what we watch from a distance -- the things that people do loading and unloading their boats -- we could film and have the perfect blooper show! Mom just laughs --- and I laugh along with her. xxx Kim
Have to search for the rays of sunshine on these cloudy days ... and when the world seems like a disaster ... finding the things in life that I should be grateful for brings me back to center almost always. Hugs to you my friend on this Saturday ... Kim
Try to forget about what’s going on in the world, Kim, you’ve got your own world to worry about right now and nothing else matters - it’s hard, I know watching your lovely mom decline. Never forget that you are doing a pretty fine job caring for her.
Music was my a David’s last remaining joy certainly in the last year of the illness.
Obviously he couldn’t operate a stereo or computer tablet by this time, so I got a small mini stereo, that had a USB port, and could do random play. I then converted his favourite CDs into MP3s and loaded 999 onto the USB memory drive which was the most that particular stereo could handle, and left instructions next to the stereo so that if David asked the carers during the day for music, they could follow the instructions and get it onto random play for him.
It worked well, and only cost about 75 quid for the small stereo and a USB stick.
What a wonderful wonderful thing to do -- PERFECTO! I love it! Music is the backdrop of our lives ... I believe it can help reduce anxiety, stress, depression, and I believe there have been studies specifically for Parkinson's and Alzheimer's disease. SO .. I say Music Therapy is a miracle therapy" ... it is for my Momma.
re: the baclofen ...are u thinking that the spasms and sleepiness happened after the dosage adjustment? may i ask the dosage before and after the changes
Hello Boyce - this is all so new to me, and with every change I’m learning. She’s had spasms for a while, and they just started to increase to the point nothing I gave her helped (I.e, over the counter pain relievers). I ended up calling the PC Doc and he started her on Baclofen 10 mg twice a day at bedtime. That resulted in her becoming lethargic .... we spoke to Neurologist and he backed her off to only 10mg and then cutting that back to 5mg slowly - to see how she tolerated it. Right now she is only getting 5mg at bedtime and no spasms, and I can go up to 10mg if they start up again. So far, so good and she seems back to our “new normal” ... meaning an afternoon nap refreshes her for the rest of the day.
There was lots of music in Johns nursing home which he always loved and they had entertainers in frequently. You are really giving your mother the best care anyone could receive. Is your lakeside home far from your main residence? xx
Thank you for your kind words, I am reminded daily how incredibly blessed I have been throughout my life to be loved by her in so many ways, and to call her Mom - so, I have decided that it is Mother’s Day everyday. 😉 I have many years ahead of me that I know I’m not going to have her with me —- my heart can’t seem to grasp that, even now, knowing what I know. I can’t imagine my life without her ... it’s so hard to watch her slowly decline. We live in the state of Ohio, on the Great Lakes - Lake Erie bordering Canada, and we drive about an hour away from our main residence to the lake house. It’s an easy drive, and she especially likes it on the days that we can pull the convertible top back. 😊
Simply... wonderful Kim. Music is the magic that seems to transcend all issues. As you mentioned, it makes the connection to the past and... sometimes the present for many dementia patients. It can also create a kinesia paradox for many people affected by PD - how liberating this must be. I say LET THE MUSIC PLAY.
You have amazing strength and grace . You are a blessing to your Mom and to me with your beautiful posts and positive thoughts!!! I still love "sometimes you just need cake"!!!! Have a beautiful day!!
Last night I turned off the TV. Took hubby’s glasses off of his face, reclined his bed and tucked him in. Then the puppies (two grown ten year old dogs and I still call them puppies). I put them together inside of their crate and said my good nights. All is quiet inside of our house except for the fans running for background noise. I heard music. It wasn’t hubby’s headset, it wasn’t a phone or an iPad, the music was only inside of my head. I think my house sings to me! Either I’m losing it, or I was in a happy place. Whatever it is, I loved it. Music makes the world go round!
How I love to read your posts...they make me smile ... and seeing the smile on your mom's face says it all...You are a blessing to your mom as I am sure she is to you too....funnily enough my grand daughter is at University taking 'Music Therapy'...it seems to be the way that connects us all...Enjoy your time making memories with your mom....Liz
Hey Liz! I am thrilled to hear that your granddaughter is studying Music Therapy! I am truly blessed, and my Mom has been my best friend —- through the good times and the bad, she has always been there for me. She is my superhero. ((Hugs)) Kim
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Mom just laughs --- and I laugh along with her. xxx Kim
Traumatized by psp!!!!
