When you don't have the words: Sometimes, I... - PSP Association

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When you don't have the words

daddyt profile image

Sometimes, I find it difficult how to encapsulate the breadth and depth of my loss of my forever love–Trish. I found them in a post someone shared. These are not my words–I wish they were; however, they are my feelings, and that of millions of others who have experienced the loss of a loved one.

You Don’t Just Lose Someone Once

You lose them over and over, sometimes many times a day.

When the loss, momentarily forgotten, creeps up and attacks you from behind.

Fresh waves of grief as the realisation hits home they are gone. Again.

You don’t just lose someone once; you lose them every time you open your eyes to a new dawn, and as you awaken, so does your memory, so does the jolting bolt of lightning that rips into your heart. They are gone. Again.

Losing someone is a journey, not a one-off.

There is no end to the loss, there is only a learned skill on how to stay afloat when it washes over.

Be kind to those who are sailing this stormy sea, they have a journey ahead of them, and a daily shock to the system each time they realise they are gone. Again.

You don’t just lose someone once; you lose them every day, for a lifetime.

Tim x

34 Replies

Says it so well Tim. It's still true for me after 4 years. The pandemic has made it much worse and my heart goes out to those caring for and losing their loved one in these difficult times. Big hug for you Tim - virtual hugs are still allowed. Love Jean

daddyt profile image
daddyt in reply to doglington

I'll take any hugs I can get. Real ones are a distant memory.

Tim x

Beautiful and so true ❤️

Well said and so true

These words are so true. I had a really bad day last Friday I was sat finishing a throw I made for my Granddaughter and the tears wouldn't stop flowing evry song that was playing brought different memories of Steve 😥.The sleepless nights are the worse when all you need is to cuddle them so here is a virtual hug Daddy T 🤗.Wishing you all a Merry Christmas and a Happy New Year 🎄.Remember be kind to yourself only you knows what you are going through 😘

Middle of the night, four and a half years on, and I still feel it. Those are true words

If we are lucky enough to have people to love, we risk the pain of surviving them, and life becomes an accumulating record of loss. So I guess we try to celebrate their lives and the love we carry along with the pain. We go on at least in part to spare those that love us. But it’s hard.

Thanks, Tim. Sending hugs. I am sorry for your terrible losses. Love, Sarah

daddyt profile image
daddyt in reply to easterncedar

It would be a wonderful to have her celebration of life. No service yet, Covid created more than a viral pandemic, it created a mutation of loss.

Tim x

easterncedar profile image
easterncedar in reply to daddyt

I was listening to an "On Being" podcast in the early hours today. Krista Tibbett is the host; it was a public radio show originally. She was speaking with a guest called Katherine May, who writes about "Wintering." It's beautiful and true and comforting. I recommend the podcast in general and this one particularly.

On Being is such a fantastic, comforting resource for anyone who is grieving or caregiving. YOu can even search for episodes using the search word grief or caregiver. onbeing.org/blog/tag/grief/

Thanks for that link!

Hi Tim!Beautiful words. They are true.

"You don't just lose someone once; you lose them every day, for a lifetime."

Words that contain sadness, full of satisfaction and gratitude, because they contain a story that was worth living.

With loving and proud sadness is neccessary to move on. There is work that remains to be done, that needs to be done, by those who remain on this side of the river.

In memory of Tris, a big hug.


Oh how true. Not a day goes by when I don’t think of John and loss seems worse this time of year . Pauline xox

Lots of big hugs Tim x

Sending you a huge hug Tim. Xx

Oh Tim

Thank you for sharing this. It is so true and especially those who are losing or have lost loved ones to PSP. The daily drip, drip as their lives seep away until they are no more is so painful, but you can't show that pain as you need to be strong for them.

I'm coming up to the second anniversary of Chris' death at Christmas, the day after Boxing Day and view the festivities with very mixed feelings. Christmas was always so joyous for us as our daughter was born on Christmas day, a double celebration. Her father-in-law died on the 27th Dec 2016 and then her father on the same day in 2019. Almost as though they hung on until after the festivities.

At least, all being well, I will be able to spend this Christmas with my son and his family in Derbyshire. The Covid restrictions made that impossible last year for us and so many more.

So thank you again Tim for sharing this with us and sending you a huge cyber hug.

Anne xxx 🤗

My mother died December 26 two years ago. My sweetheart died the day after his daughter's birthday. Folks do hold on.

Big hugs Tim x

Hugs to you Tim. Words that are so true. You actually start to lose them before they pass. I am starting to dream more of how Mike was about 6yrs ago and beyond. Now, no more hugs from him....very little words. I see him every day but it is less and less the Mike I knew. Sometimes when I awaken in the night I feel he is beside me; but he is not, he is in a hospital bed just outside my door.You don't just lose someone once....this horrible disease makes you lose them continuously, every day, and then forever and ever....

God Bless all who have endured and are enduring the loss of their love one. Our lives will never be the same.....

yes, true, the loss begins early with this terrible disease and those like it. So sorry for what you are going through. I regret every chance for a hug I didn't take and am grateful for the memories of every one I had.

Ugh, I feel this so acutely. I'm still getting hugs, or taking hugs, from my husband, but the speaking is gone, leaving a big hole and a giant full stop to our conversational relationship. He's currently in a hospice bed waiting to come home if and when we can get some extra caregivers, and a hospital bed, in place. I feel like busting him out sometimes and driving away into the sunset or clear up to Scotland, his favorite place, just me and him, but I know the care involved would burn me out quickly and my brain is clouded with romantic, magical thinking. He is suffering. And the past is really all we have left to cling to. I'm saying goodbye every day.

Hugs to you. Don't let go of those romantic and magical thoughts. Consider them as respite and a distraction from the ugly reality.


easterncedar profile image
easterncedar in reply to daddyt

wisely said, Tim.

Hugs to you Tim xxx

Tim, Sorry man. As if you did not have enough to deal with.....


Hi Tim, you really know how to hit the nail on the head, don’t you! In the nicest possible way. It five years for me on the 28th. So December is always pretty bad, going back what was happening, this time 5 years ago. The pain never goes away. Yes, I have lost Steve a millions times this month alone. Even though life has found a new meaning for me, I still lose him every day. I suppose the thing I would like to add, each morning I put my swimming arm bands on and learn to swim all over again. It takes less time these days before I can swim alone, some days I can even do a bit of doggy paddle straight away. Others, I am still capable of drowning come midnight, but I have learnt, that it is possible to survive.

Sending a very big hug and much love

Lots of love


P.S. it’s been lovely to see that others from my dark days are still here reading. Love to you all.

easterncedar profile image
easterncedar in reply to Heady

Love to you, too, Anne, dear.

Thank you Tim for sharing. The words encapsulate my feelings. The 1st anniversary of my wife Rosalind's passing approaches, but in truth every day is an "anniverary". Waking in the night, as others experience unable to get back to sleep, is still too common. Covid, without family near, increases the isolation & sadness.

daddyt profile image
daddyt in reply to David750

Covid has exacerbated the sorrow. I haven't had a genuine hug from children and especially my grandchildren in nearly two years.

Tim x

Tim, That is beautiful. Thank you. More big hugs coming your way.

BIG HUG!!! May today be a day of joyful reflection as you feel the love of virtual hugs . Yours is a double whammy-your lose of the love of your life and coping with your own disorder. I hope you have family and friends to support you in person.

Sending gentle hugs... Granni B

The words are so true Tim. My husband Will passed away 2 years now on 7 Dec and I miss him every single day. The tears still comes when a memory creeps up from behind unexpectedly but I’m glad we made those memories together.

Sending you a big hug Tim ( ) and lots of love, Nanny857xx

Hi Tim, I don’t often post here now but your message really resonated with me. Grief never leaves but changes, you never get over losing some one you loved but get through it day by day. Grief is love and the feeling the emotion of not having that special someone anymore. Sending love. Kate xxx

Thank you Kate. Grief is never easy. I find Christmas especially hard. The damndemic exacerbates the loss when you can't hug or hold on to someone you love.

Tim x

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