It is with a sad heart that I tell you that my darling husband Roy passed away at our home, on Friday 19th July 2019. 4.55 p.m.
We had been told more than once in the past 8 months , that he may not have too much longer with us but I wasn't always so sure and carried on as if everything was as it always was. I cared for Roy by myself and although It was obvious that he was deteriorating, he had been doing that since the first signs of CBD, which was back in 2009/2010. He was diagnosed in 2013.
I managed to take him away to Devon in May for a holiday and I am so glad that I did but while we were there, he had a few seizures, which he never had before.
I think this was the beginning of the very last decline which bought him to the date of his passing.
It was when he stopped eating and drinking hardly anything and sleeping more and more that I realised that things had definitely changed.
He only coughed a little on the intake of fluids and had no pneumonia but I think his body had had enough.
The last week of his life, we had many of his friends come to say goodbye, we laughed about old times and played all our favourite songs.
My son, daughter and myself were all at his side constantly, holding his hands and telling him how much we all loved him and that there was nothing to worry about anymore and that he could go when he was ready......
A week has gone by, I have ticked off most of the long list of things that have to be done when someone passes away.
The funeral has been arranged for a couple of weeks time and as I sit here writing this, to all you wonderful people, I feel a bit numb now.
I sat in the garden on one of the early warm mornings that we have had lately and I felt that Roy was telling me that my life will be easier now and that he is glad.
I don't think that the word 'Easier' was a word that I ever thought of, when imagining my future at this point but I think it will be in lots of ways, easier.
As carers, we do all we do for our loved ones because of the love we have for them and our lives are put on hold in many ways and now at some point, when my heart has healed, a little, I can live again for the both of us, as I know he will always be with me!
Bless you all for your advice and love that I have had over the years and love and strength to all who are on this journey with their loved ones.
Try to take each day as it comes.......❤️
Lots of love to all
Denise, wife of Roy 1956-2019
Written by
DenB
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So sorry Denise, you did an absolutely fantastic job of caring for and loving Roy and you will find comfort in that fact as you begin the grieving process. I am 15months down the line now and that numbness is still with me some of the time but you do have, at some point, to join the world again and tnings start to get a bit easier step by step. I still have a long way to go but know I'll reach a point when I can deal with my new life without that ache I feel in my heart and start to remember Ben pre PSP. I wish you well on this journey.
Denise thinking about you at this sad time, agree with all Kate has said, I am 9 months down the line to George passing away not a day goes by without thinking about him, grieve at your own pace, cry when you want, crying I feel makes you feel better. You looked after Ron so well, even taking him away, you have made lots of memories. Sending you loads of love 💕. We have been through the mill since George passed away, 4 deaths and about 5 weeks ago I lost my lovely sister, it’s been a very hard 9 months for me, very sad times. Big hugs Yvonne xxxxx
I am very lucky to have a wonderful daughter who has been by my side every day since Roy passed,helping and prompting me and I know she and my son and grandchildren will be helping me to move forward...
I’m so sorry for your loss. To be honest one of the reasons I’ve been silent lately on this site is because I had to take a step back from all of the grief. I have been on a rollercoaster and autopilot for about a decade now and I am so numb. I can’t imagine how much worse it can get when they are actually gone. This isn’t about me though, it’s about you and your darling Ron. You were both lucky to have found each other and to have memories to lean on as you process grief in your own way. From what I understand there is no right or wrong, there’s no time limit. Everyone is different so take as long as it takes and please know that you aren’t alone.
Not wanting to come to the end of the journey because we know what that will mean but somehow it's the not knowing when the end will come that can make it the hardest thing, especially as the years pass us by.
It's been said so many times about making the most of everyday and taking each day as it comes but I am so glad that I lived by those two mottos most of the time........ D X
I feel privileged to have been part of the family on this site, being able to talk to some on here, listening to advice and even being able to give advice myself.
I have learnt more here and have always praised the good people to everyone I have ever spoken to about my husband and the CBD which controlled our lives for 10 years.
Denise, I am so sorry your darling has left you but you know he is now free from this awful condition; and so are you. It is correct what you heard him say, life will be easier now, much easier and it is for living. We all grieve in different ways. My way was to get out there as soon as possible after I was finally left alone post funeral and have never regretted it but in your time and in your way you can start living again and hopefully, in the not too distant future you will be doing all the things I’m sure Roy would want you to do. He will always be in your heart so enjoy life again, think of him as he was at your happiest moments knowing that is what he wanted.
My husband Roy, loved to sit in the garden with the sun on his face and in any season. if the sun was shining, I would bundle him up with layers and we would sit in the garden, with me feeding him a hot choccy' (chocolate) and hear him expressing his delight, "mmmmmm! "As the aroma of the hot chocolate, spiralled up his nose before he tasted it and I would smile knowing he was enjoying those moments...
And as we'd sit there.....all seemed well in our world!
It was always the little things that meant the most......
I am sorry for your loss Denise. His battle is over and he is at peace. You too will have time to rest and reflect on that battle you shared, and fought valiantly beside him and on his behalf.
In time will come peace for you too. Meanwhile learn to grieve with your family and remember the real man, father, husband, that CBD took from you. May he rest in peace!
That is a beautiful, poignant post. You did well. Your family did well. I admire and appreciate your loving and uplifting attitude - very comforting to me. Thank you. Love and peace, ec
I sit here reading your beautiful post with tears in my eyes. I’m sorry for you loss, but based on my experience there are no words anyone can say that will really comfort you.
The memories of the last week, like yours, are so vividly etched on my mind even though they were just over a year ago. My children, her brothers, her nieces and nephews, and I by her side. Saying goodbye to a life lived well. I think that week helps me to see that I would not want to prolong her in that state for any longer than she did, although I miss her terribly.
I pray strength, comfort, fond memories, and rest for you and your family as you walk this difficult time in your lives.
Thank you Bobby, I am truly lucky to have wonderful memories of our life together, before CBD changed our lives forever and some very fond memories made during the time Roy was ill too.
The missing him is the hardest thing right now.....
It's 18 months since Chris died and there are difficult times to come for you but I can tell from your post that you will survive.
I hope you will draw comfort from knowing you did your best in the most trying circumstances. Your memories and family and friends will enable you to make a life again. Allow yourself time to grieve as you need.
Dear Denise, no words can make up for your loss. Take comfort from all the good people who have supported you, me and each other on this forum. They are also family. Sending love and hugs.💕
Oh Denise i am so so sorry Bless you for your generosity in sharing your sad news and Thankyou , Words dont really seem adequate but I send you loads of love XXX
So very sorry for your loss. You were amazing. - please remember all you did rather than all you didn’t .
Please take care of yourself , we all deal with grief differently. 13 weeks since my hubby died and something still makes me cry everyday a memory a sound, a smell. A lifetime together is hard to adjust to the change. This site was a life saver for us whilst living with PSP and I have found the warmth and love here just has helpful in adjusting to this new life.
Sending you lots of love and hugs as you embark on this new life
Dear Denise, what can I say that hasn’t already been said, except I am so sorry hear that Roy has passed away. May he rest in peace, finally free from this evil disease.
There is only one way to face grief and that is YOUR way. Cling on to that wonderful numb bubble you are in at the moment. Life won’t be easier, just different. Rest as much as possible, grieving is just as tiring as caring. Use those hard learnt caring skills on yourself.
We are still here for you, knowing and understanding exactly how you feel.
It feels as though time might have stood still for a bit, as I don't seem to have felt or seen the passing of days. It just seems like one very long day since Roy passed.
Of course I have been busy, out most days and with being out everyday, my life is already changing.
Thank you for all your lovely words of encouragement and warmth.
Love and hugs embrace you through this time of sadness. It has only been 2 months since I lost my husband Kurt to PSP. Grief travels a winding road and the emptiness we feel is heart wrenching; but every time the tears come it does not take long for me to acknowledge how much I miss him and say I could never wish him still here suffering continued decline. I didn't post often through our journey but I was and am so grateful to those that did. The support I felt just knowing I was Not struggling through this alone was so important. I haven't read so often these last few weeks but has been a comfort knowing there is a wonderful group of people on this site that truly understand and care. Wishing you peace as you regain your sense of balance in life taking care of you. Kathy 💕💫❤
You write so eloquently especially at such a sad time for you and your family but your words speak volumes of the great love that you had for Ron. That love will get you through the ups and downs ahead without a doubt even though it may not feel like it in the early days.
It's not my intention to make this post about me but reading through your responses to others who posted brought tears to my eyes as I realised that I was reading a page from my own story. The similarities are just bizarre.
I, too, took Rod on a last holiday to Devon (North) before he died (10 October 2018). We spent our honeymoon there in 1972 and when the children came along I have so many wonderful memories of holidays with them there, something we often chat about. Even when they flew the nest and Rod and I enjoyed travelling abroad, we always went back once a year to North Devon. The week before last, with my adult children and 2 year old granddaughter, we went back and scattered his ashes in a place very dear to us. I have asked them to take me there to be with him when my time comes.
Now to the hot chocolate - that was Rod's preference summer or winter. When we walked in Richmond Park and stopped at a kiosk for refreshments, I would cool off with water, he would demolish a hot chocolate. Sitting on the patio in the sun was his love and even in the winter when it was too chilly to sit out I'd open the patio doors, turn his chair around to face the sun and he'd doze contented. I'd make him a hot chocolate and giving him a tissue to wipe his lips after he'd finished, he'd say "I'm saving that for later, it was so delicious". We'd sit and have a good chuckle. Thank you for reminding me how such simple things are so precious - it's so easy to forget the little things that were actually such a big part of who we were as a couple.
Best wishes to your and your family - it sounds like you are very close and will look out for each other, which is key to finding your way through the bereavement maze.
That was such a lovely reply, teardrops sprung to my eyes as I realised the similarities to your story and my own.
My darling Roy's birthday was on 10th October. The day on which your sweetheart passed and I too would turn Roy towards the sun with the patio doors open and he would contentedly doze.
It always made me feel happy that he looked so cosy and peaceful with the sun warming his body.....he did love the sun and hot sunny holidays especially.
I too am asking my family to scatter my ashes with Roy's when the time comes, in a place that we both loved to sit for hours and enjoy the view of the sea and the sky.
I will now wind and twist through the bereavement maze in the hope that I will eventually find my way out at some point!
It will take as long as it takes, Denise, just go with it in whichever way works for you. Ten months in to losing Rod I am finding that grief and the joys of life can co exist. I'm not saying it's easy but I've left that bubble behind and my world does seem to be opening up again.
I hope you will dip in and out of the site if and when you feel ready and let us know how you are doing. There are some very inspirational, supportive people on here who have lifted my spirits on many occasions.
Dear DenB So sorry for your loss I think it’s a day that we all dread and never think is going to come please take comfort in all the good times which we all need to do bless you for all you did and Roy was at home you must be one amazing person now it’s your time xxx💕
Thank you so much Kathy, the people on this site are truly wonderful indeed and it makes my heart feel warm and comforted that there are so many of you sending these lovely words out to me at this time.......
Dear Denise I am so sorry for the pain you are now suffering. No matter what you looked after Roy and I am sure he loved that.
Please take care of yourself as you begin to come to terms with this loss. It will take time, I lost my husband in November 2017 and I am still struggling.
Life goes on some people say but not the life you and so many others here knew.
I am so sad to hear about Roy. Sad that he has left you but he left you with good memories too. I know how much you must have loved him and I am sure that you are glad his suffering is over at last, despite the loss you feel.
You are lucky to have had two kind and helpful children to help you at the end.
Roy will watch over you now. This grieving is a very hard process though. You were an amazing carer but I bet you feel so tired. Take care of yourself.
Denise I am sure he is watching over you now. He will be waiting when your time comes. I firmly believe that. If Garry is not there for me he will get such a telling off when I find him! X
Hugs to you. Thinking of you as this is all so difficult. Sleep a bit if you can.
Denise, what a beautiful reminiscence on your life together, his illness and your time of caring for him - thank you for that. 2013 was also the time of my husband's CBD diagnosis, though, like you, we both saw signs of it years earlier. I am seeing a decline, too, but it is so hard to know just how long each of these stages will last. You have handled the whole progression lovingly and more than anything else, love really is what we remember best. Peace...
Dear Denise, I'm so very sorry for the loss of your beloved husband.
You were one of rhe first I followed when joining up here as you too were navigating life with CBD.
I know we are all relieved when our loved ones are freed at last, but it is heartachingly hard to let them go. Even though you have suffered the loss of the full "him" for years, it is devastatingly empty to have him truly gone.
I admire your attitude and hope you find joy despite this great loss.
It is hard to think that we may find joy again when such a void is left in our lives but I hope that as I journey forward into this new life, I will look for it again or maybe it will find me.......
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Frank now at peace & free
My heart is heavy. My guy is resting in peace.
