Just curious ... Mom has been extremely tired, sleeping more and more during the day.
On average she is up around 7:30 am, napping around 1pm - 4pm (sometimes 5pm), back up eat some dinner, and then back down at 8:30 - 9:00 for the night.
Does this sound normal to most of you? I’m just feeling like she is requiring more and more sleep ... today she went to nap at noon, up to pee just now 2pm, and wanted to lay back down.
Things are changing ...
Hi
Yes, fatigue is a core part of it. Sadly it is the norm for it to continue to increase.
Sorry for the poor news.
Wishing you all the best
Kevin
Pretty much suspected, but needed some confirmation — thanks Kevin. It’s funny how I know what to expect, and yet when it’s happening, change that is .. I find myself questioning what I know. Almost like I’m trying to will it away ... hate this.
Hi Bazooka
It’s funny how I know what to expect, and yet when it’s happening, change that is .. I find myself questioning what I know. Almost like I’m trying to will it away ... hate this.
You, I and all of us.
It is made more more tricky because each person has a slightly different path through this illness.
Being a carer involves a lot of repeated heartbreaks and loss whilst we try to make the quality of life as best as we might for the one we love.
You have been a superb carer and daughter.
I take my hat off to you.
Warmly
Kevin
Thank you so much - I was hoping that we would have this summer to finish our bucket list, but I’m feeling like that may not happen. 😒
We are self quarantined this past week; hope you are staying healthy.
Thanks - We are healthy 
Your Mum's bucket list will change - go with it - In the end you being there and your love will be the only bucket list she will want and that will be the greatest gift tha anyone can give.
Be well
I totally agree with Kevin. As you know full well, a mother only wants her chicks healthy and happy. She knows thats what she has with you, what else does she need? Ask her, she will say "nothing!"
Please don't beat yourself up Kim, because you can't provide what YOU think your Mum wants. You are giving her what she wants every single day, yourself and your love. Who could ask for more.
Lots of love
Anne
Same with my husband for a couple of years.
Sounds very familiar Kim. I now realise how , at that stage, Chris lost energy and increasingly just needed his loved one's to be there.
You have been inspiring in energising your mother and now you may need to recognise she is at the next stage. Her world becomes smaller - and you have an enormous repertoire of memories to revisit with her. Well done.
Love Jean xxx
My husband started sleeping more this past fall. It seemed like he was retreating into his own little world. Where before when I got home from work, he would try to acknowledge that I was home by saying hey or at least glancing in my direction. It then progressed to the point where I wasn’t so sure he even registered who I was. I was so caught up in making sure he was cared for that I didn’t realize he was living in his end of days.
Your Mom’s progression is going to go as fast as it’s going to go. I have been in awe of all that you have done to keep her engaged and in the land of the living. We know you love your momma...but she has truly been blessed with you as her daughter. There’s no shame in your game, girl! I have enjoyed every memory that you’ve cared to share of your time with her. And if she’s in a decline, “To everything there is a season...” I am quite sure you will meet her where she’s at and find a way to show her the love. Prayers...
All of your words are like a healing balm to me tonight - thank you so very much! ❤️
I agree with everything that has already been said but just want you to know I am thinking of you both
Love Sarahxxx
Thank you Sarah
Yes. Ian spends a lot of the day, and fortunately the night sleeping or heavily dozing. When he is awake, he is always very dizzy, but because of his wonderful nature he never makes a fuss.
May our loved ones waking hours be filled with peace and contentment....especially at this time.
Much love to you, Kim.
Juliet x
Hi Kim, as other replies indicate, it is very common to sleep lots. My Liz was never one to sleep much but during her PSP journey it became a regular occurrence. You have created a beautiful environment for your Mum as well as so many amazing memories. I take my hat off to you Dear Lady. Keep smiling. God Bless you and your lovely Mum. ❤️❤️
Thank you so much ... processing all of this is so overwhelming. I’ve tried my very best to bring her pure joy ... thank you for your kind words. ❤️
We are experiencing the same thing with my sister. Sometimes she falls alsleep eating
How old is your sister? Things have changed overnight it seems this past 10 days ... She is so tired.
My sister is 75 years old. She doesn’t do anything for herself anymore. So sad because she is down alittle over 90 lbs & this disease is like a slow death sentence that is so heartbreaking to watch your loved one that was so active at one time
I think sleep is a blessing when they reach a certain stage of the disease, I was always happy to let Ben sleep as much as he wanted and not pester him into trying to do things, his energy levels became so low that I felt it kinder to just let him be.
Sending love
Kate xxx
Completely agree. She has renewed energy after her sleep time, but nap times have certainly increased ... and I let her sleep as much as she wants.
Dear Kim
So sorry that you Mom is now at this stage. Sleep is good, it relaxes the body, so just go with the flow and take each change as it comes. Be there, you've been a wonderful carer. Keep on keeping on.
Anne x
My dad was the same. The whole family started to think he was not aware of who we were and slept much more. He did surprise us and these were precious moments. He laughed at a memory; he wanted to be at the tea dance (in the care home) rather than have a physio assessment and grip your hand and held on tightly.
Love and hugs to you both - mx
Hi Kim.
I've been experiencing more lethargy, fatigue and down right sleepiness since late last year. I know PSP is damaging my brain and has given me the gift of Executive Function Dementia. Part of that is losing self control. On reflection I see two things that could be causing my extreme desire for sleep.
One, of course, is the destruction of my brain cells and neurons could be in an area that regulates sleep or triggers REM.
The other is even more speculative because it's a pattern I've been noticing in my own day to day. It seems that I feel really tired about an hour after a meal or even a snack. I give in to a lot of those impulses and nap after breakfast and lunch both. I don't nap after every meal and have recently observed that if I am even a little bit active that I can normally push past it. It only takes about 30 minutes of mental or physical activity to feel awake again. We have moved my exercise routine to about an hour past breakfast instead of before, as it had been. As I don't exercise every day I still fall back to sleepiness on my off days. We try various things after lunch but haven't settled on a routine. I can normally manage/struggle after the evening meal . However, once I push past at night, I'm then awake until 1-3 in the morning.
One thing of note; It has been increasing in frequency to at least once a week but I have periods where I'm overcome with the desire to sleep NOW. I HAVE to sleep right then and there within a few minutes. I only sleep during those episodes for 10-15 minutes and am right as rain. This is what leads me to my brain damage triggering REM.
Tony
I am so tired...
I know I’m not alone in this.
