We are all Essential: This photo I snapped... - PSP Association

PSP Association

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We are all Essential

bazooka111
bazooka111

This photo I snapped of my precious Momma this morning in a new shirt that a friend gifted. These have been some difficult days for us, and my Momma seems to decline a little everyday. Pics are deceiving, but she never fails to smile when I say “cheese” ... oh how I love her.

I pray that you all are searching for slivers of joy during these difficult times, and finding a smile along the way.

Keep moving forward ...

42 Replies
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❤️XxxX

The oddest thing about this disease is how well everyone looks as they decline.

Hiking13
Hiking13 in reply to Jeff166

That is so true I look at mine and Steve’s wedding photos taken just 2 months before he died and he looks so good.

bazooka111
bazooka111 in reply to Hiking13

((Hugs)) it’s hard to understand... your story breaks my heart

Artteach10
Artteach10 in reply to Jeff166

Isn’t that the truth. Healthy looking and yet can’t speak and just lay there.

It’s remarkable really - no one on the outside “gets it” ... or at least that’s my family ... they look at me and say —- she looks great ... as if to say ... with their facial expressions to me “it’s not as bad as you’re suggesting” .... follow up with questions like “are you getting enough exercise?” “Is she getting out much” ...... I could just scream!!! And mom just looks with a little blank smile ... mind boggling

Mottsie
Mottsie in reply to bazooka111

Been there... done that! Sending hugs of understanding... Granni B

Hear you. You are so right with words people say.

Cuttercat
Cuttercat in reply to Jeff166

Yes it’s true. Charles looked so young.

Cuttercat

journeyofjoy
journeyofjoy in reply to Jeff166

My husband looked good too, other than being too thin.

Mottsie
Mottsie in reply to journeyofjoy

Thank goodness for photos! Sending hugs... Granni B

Mottsie
Mottsie in reply to Jeff166

On the days l put makeup on mom.... folks said, oh she looks like she is feeling better today. Ugh!

bazooka111
bazooka111 in reply to Mottsie

Totally GET IT!! Happens all

The time —- I’m so exhausted from

Those statements!!!!

Mottsie
Mottsie in reply to bazooka111

I can tell you and mama are entering a new or should l say different stage of PSP. Keep your chin up! Exercise! Eat healthy... donuts are healthy in my book! I haven't seen your post on face book for about a week (they say my password is not my password Ugh!). I am hopeful our kids can help fix the misunderstanding. Sending Hugs Dear Friend... Granni B

Lovely photo, I have loved your photos on Facebook too. You are really good at capturing that beautiful smile.

Love Sarahxxx

Mottsie
Mottsie in reply to Hiking13

I totally agree!

bazooka111
bazooka111 in reply to Hiking13

Ha! Poor thing has to put up with me taking photos - although it’s nothing new, so she’s used to it. In fact, I have a folder titled “Moms Health” and I have captured inconspicuous videos and photos of her over the last couple of years, most she is not aware of —- for my eyes only to track progress. When you’re caring for someone every single day, you know the decline is happening, but not until you look back does it really show the significant change.

Just this time last year, when I couldn’t imagine what a year from now could look like ... it’s overwhelming, but I’m satisfied with the decision to catalog the progression as difficult it is to see.

Mottsie
Mottsie in reply to bazooka111

Very wise decision! I wish l had thought of that. I am sure it helps in many ways. Sending hugs... Granni B

Beautiful

Thank you!

I too note how well my husband looks ....

Your mum has a lovely smile xx

Beautiful smile x

That smile is so captivating 😘😘

Love her new gifted shirt and lovely smile. We are all definitely essential as we try to deal with our ever changing world. Sending hugs... Granni B

bazooka111
bazooka111 in reply to Mottsie

((Hugs back))

Lovely pic hugs Maggie x

bazooka111
bazooka111 in reply to fishponds

Hugs back Maggie! I hope you’re doing well.

Essentially... being Momma. Still love that smile.

Tim x

bazooka111
bazooka111 in reply to daddyt

Yes, Tim ... through it all, she is still able to express that beautiful smile. #blessed

I know so much what you mean about people not "getting it." I knew instinctively when things were not right with my Mom. Even with the hospice care folks, they were surprised when they would see her "doing so well." In January I confided to my wife I doubt if she would make until Valentine's Day, but she and most everyone thought we would have Mom with us at least into summertime. Mom passed away from PSP on February 12 this year.

Blessings to you on this hard journey that so few seem to understand...YOU are indeed essential!!

And how you love her. It is evident in all you do. You are an inspiration. Take care of both of you.

Cuttercat

Hi, so lovely...

You are essential for us too

Best wishes

Elena

bazooka111
bazooka111 in reply to wear1947

Thank you Elena! Xo

Breaks my heart when I look back at photos of Ben as his disease progressed. It didn’t take them as a record of his decline but it still shocks me when I look at him in those last few weeks. Your mum looks as if she has a happy disposition and I think that helps them and us cope. Lovely shot of her. Xx

bazooka111
bazooka111 in reply to Katiebow

My heart shreds when I look back at everything captured —I notice things that I forgot she did or didn’t do. Mom hAs a smile that seems to not fade — that pic is of her on the “stand assist” we bought - which was a God send and she loves being on it —- it’s our own amusement park ride! Oh, the little things 😉

Katiebow
Katiebow in reply to bazooka111

The stand assist makes it possible to keep them at home, I would have been lost without one. It doesn’t get any easier does it but somehow you keep on putting one foot in front of the other. Xx

Lovely smile lovely T-shirt

Completely agree a photo is a snapshot of that instant and dies not always reflect the reality. My hubby’s relatives always commented how well he looked ( he did) and despite my trying to prepare them they were always shocked when they came to stay and seeing the reality.

Sending you both big hugs and lots of love Tippy

bazooka111
bazooka111 in reply to Tippyleaf

The other day my moms sister came over - she had been asking for days, but for days Mom has been taking extra long naps, and I Have just stopped any visits in the afternoon from 1-4 —- because when I have compromised... my request of just an hour visit never happened —- she looks great (because I cleaned her up and struggled to even get her clothes on properly without a twist!) ... they would stay for hours. I know that sounds horrible, but the second they leave ...she’s in bed for 4 more hours —- completely over stimulated.

So, I sent my aunt a text and said if you come over now - mom is up having some tea.. but prepare yourself... she’s in the “raw” ... jammies, uncombed hair, no shower ... etc. completely different perspective. Oh the things we deal with, no one will ever understand. Forget the mile... walk a few steps in our shoes.

Sorry to hear things are progressing and getting harder. You can see the effort it takes now for her to smile but it's still a gorgeous smile.

Do you get any outside help? If not perhaps you need to, a little assistance can make a big difference.

bazooka111
bazooka111 in reply to AJK2001

I am feeling so much relief now with my helpers —- it’s amazing what a few hours will do for a break away. Re-charge is so important. Mom is sleeping on average 14-15 hours a day, most days. Some days she surprises me with small bursts of energy, but lots of mid-day naps. It is so hard to watch. We keep pushing forward.

Your posts always brighten my day. Your spirit is infectious, I can feel it in every post. I am grateful for your Moms smile and your dedication and spirit, even on the days that are bleak. The statements from well meaning friends and family about taking time for yourself are not realistic.. I often say, when its your reality the picture is clear, there is no time! Keep those photos and your wonderful posts coming!!! Which stand assist have you found to be helpful?

Thank you for your kind words, I’m smiling. We have purchased Lumex and are very happy with it — the cost of the Sara Steady was just too steep —- I bought one Lumex new via Amazon and used on Marketplace Facebook for 1/2 price — so I’m very happy.

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