We've had a tough few days due to a care crisis, which for now is sorted short term.
Mum has deteriorated quite a lot since beginning of year and not much seems to be being done to help make life easier for her...another battle as ever.
The reason I'm putting down my thoughts is that I rushed to get some food shopping in half hour care call this week and I was stopped in my tracks quite unexpectedly.
In front of me was a lady who looked the spit of my Mum rushing around the shop, with the same sprightly graceful trot she had. I just started crying in the middle of Aldi, the pain of how unfair this evil disease is on my beautiful Mum and her suffering. That should still be her doing normal everyday life errands.....
Mum was sick in her sleep again last night...what will today bring her. 😖😢
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Spiralsparkle
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We get so absorbed in looking after our loved ones and their new ‘normal’ it is such a horrible shock when the stark reality hits us. Can so relate to this upsetting incident, last year I was out shopping and saw lovely pair of trousers and thought perfect for R, then promptly burst into tears knowing he will never wear zipper trousers again. The enormity of our loss hits us in the everyday things. I believe it is called anticipatory grief - I think it is just pain and sadness and the awfulness of PSP!!
Hope last night was a better night and today a day with a little sunshine for you both.
It definitely felt like grief, as you have said. I've had that before when someone has passed and you think you see them somewhere.
Yes zips are even denied them and everything has to be easy to wear and get in and off. It is one of the important things to look nice for Mum so I try to find the best jazzy comfy clothes I can for her. We have that many tracksuit/jogging bottoms is an array of patterns lol.
The sun has poked out today so it doesn't feel as doom and gloom.
Hope today is a happy one too
Hi Spiral you are not alone..
I feel exactly the same. Sometimes I am ok with it and battle on, then out of the blue a huge wave of grief overwhelms me and it comes from nowhere and without warning. Sometimes it the little things that can trigger it..on Thursday it was a slight twinkle in my Mums eye and a glimpse of her old self. It led to a very teary Friday off and on all day. This is such a horrid disease and we can only battle on with it.
Hope you have a better day today, at least the weather is better!
Dear spiral sparkle your post made me cry similar experience over last few weeks as Mum too is deteriorating so quickly . Let your tears fall I sometimes think it helps release some of that frustration and stress we all have around these horrible diseases . I feel your pain I know it’s easy to say keep smiling but that helps too x x 😊
Hugs to you. The overwhelming sadness and stress just build up. Sadness for today, and worry for what will be next. Mums are so special. 💜 . You’ve been amazing .
Hi Spiral; Sad to hear of your day, but oh so very familiar. Watching an intelligent, vital, engaging person deteriorate into a blank shuffling falling incontinent shell of themselves - like a bad zombie horror movie.
..And while you didnt discuss it, I noted the comment about not enough being done by the care people..As if the syress and grief wasnt enough..you have to use your precious energy to fight!
I needed to ad up while I cry after reading your posts.
I think the hardest part of this struggle is thinking about the before, you see something at a store that'll be great for them and you remember it's no longer practical... you try something delicious and you wish they could try it too, then you think no way to make that dish safe for them to have... you go somewhere nice and you want to be able to take them there. Then you start thinking how am I going to take her chair up those stairs? Is she going to be uncomfortable here?
The happiest and saddest dream I have sometimes, involves my mom walking around the kitchen helping me cook or doing the dishes while we talk. All things she can't do anymore.
As everyone has said, the hardest thing about Psp is how much it robs you... How it takes away your normal and forces you to try and build a new normal, just for something else to change and you have to start over and over again.
Not fair guys.
My love to you all, keep the smiles a plenty and the sadness away
I have had that exact same feeling. I will catch myself seeing a women the same age as my wife and being amazed that she is able to manage by herself. I know that’s actually normal, but it is not my normal. I just thought it was me thinking strange thoughts
The one thing that this disease has taught me is that I really don’t know what a stranger is going through when I cross paths with them. I put on a brave face every day, hiding the pain of seeing my beloved loosing capabilities daily. So most people don’t know that pain I am going through. I realize that the stranger is probably facing hardships that I can’t even imagine. I need to treat them with the care and compassion as if they are hurting like me.
Thanks for posting. Hoping for you strength and better carers for your mom.
As much as this illness robs us and our loved ones, it changes our hearts to be more understanding to others because we realize that an illness we never heard of before has happened to us, and the same or something worst could be happening to others. It inevitably changes you
Big hugs. It is horrid when it hits you like that unexpectedly and knocks you off your finally controlled balanced way of coping. Lots of love Ali B xx
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A little overwhelming
