Given this week's news I am sadly thinking "are we ever really ready?" Charles is slowly declining but the coughing with eating is becoming an issue that has resurfaced and I know I'm facing the next stage.
A "friend" (I wonder if that word can be used here) said "It's been five years!"
So what! Love isn't ever ready to say goodbye. And I promise everyone here, and I know you will all agree, it will take the rest of my life to "get over it" and then reunite with Charles again. My hope and my prayer.
I'm not ready today, will not be ready tomorrow and will not be ready when it happens. Time is all we've got and I treasure it like no other.
Thanks everyone for listening.
Cuttercat
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Cuttercat
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Hi there, no, love is never ready to say goodbye. I've just lost my dad and although I knew it had to happen & that it would be a relief for him it's still left a huge void in my life. Grief is all the love you still have to give. I'll never stop loving my dad. My thoughts are with you. Hope you have lots of friends around you to give you support. Xx
Oh Cuttercat such a sad post, so true your words. George is also coughing much more, but still enjoying his food, saying this afternoon that he was unwell, told him he must be tired. Sad time for us all, after the news from Katie about Ben, hard times for everyone. Yvonne xxxx
Yes, the Katie post has had me teary-eyed all day. Charles still enjoys his food but both pills and food seem to be an issue and I wonder if it's a temporary thing or portending the future. We just keep going.
I hope the days you have left together fill you with love - and even joy - that you had your wonderful man in your life and gave him so much love. I dont know how joy can make it through the anxiety, grief and anger, but I hope you can experience it because you deserve it!
Cc we are never really ready. However we do learn to get a sort of life again. I keep talking to G so he will be with me a while yet. It takes a while to come to terms with. Certainly not overnight. Does your 'friend' thing it's time for him to go after 5 years? I wonder if she would feel like that if it was somebody she loved. People can be so insensitive.
She hasn't had a relationship like ours, so can't identify. My future life will be based on memories and love. Thank goodness. And thank you for your kind words of support. I'll keep on as long as it takes.
NO Cuttercat you are never ready to lose the one you have deeply loved and spent many years with. It’s a total shock and a big hole is left in your heart as you try to adjust being one. Five months yesterday my hubby passed away and I still cannot believe he has gone and I miss him terribly and tears are never far away. Sending you a bear hug. Love Jxx
Mom is approaching the end stage of this horrible disease. I and my family are very sad in this situation. I understand you very well. I am only able to prayer for mom.
hi cuttercat, no I don't think we are ever ready. how do u willingly let go of something/someone who has made life so special. I hate the sadness this disease creates when u think back to what u miss but at least we have had such wonderful experiences. hold on to ur wonderful memories. the hurt is so deep because the relationship was and is so true xx
No matter how long this journey, and how much you grieve for the loss of your love one whilst they are still here, nothing can fully prepare you for the time when they are completely gone.
It's 4 weeks since my dad died and I just don't know what to do with myself, if this is me, I can only imagine what my poor mum is going through.
No I don't think we can be. Even when your head tells you it might be the
" right " time it doesn't make your heart accept it. Chris and I had a very close meeting of minds and I know how precious that is - and what a loss. Not everyone knows that.
Thinking of you cuttercat. Make the most of what you have.
How can any of us ever be fully ready for this path we are all walking , It seems to me the worst thing about this dammed PSP, is it keeps throwing in problems , which you cope with because you have to, what else can we do ,. When the inevitable happens , I hope I will feel strong enough to carry on and not crumble. I belive I will feel him around me when I need him.....Brenda xx
Yes, this PSP is ever changing with problems galore. We just keep coping but it gets harder and harder. I think, like you, we will be watched over always.
Hi Cuttercat, of course you won't be ready, who would be, to lose someone you love and have cared for, for so long. The question will you be able to cope afterwards? Well again, yes you will. Everyone on this site has that inner strength, either naturally or hard come by, that has and will get us through the hard journey we have all had to face.
PSP is an evil, evil disease, but don't under estimate the strength it is giving you, to be able to cope with the fall out.
I found saying goodbye the hardest thing to do but at what I thought was the right time, I told my darling husband I would always love him but it was OK to leave me and I’d be OK knowing we would meet again one day. I felt I needed to tell him to go as 6 years earlier he had said he wanted any medical intervention necessary as he didn’t want to leave me, “I want us to go together”. What was coming was inevitable. He had decided not to be PEG fed any longer so had received no food or drink for many days. I didn’t want him hanging on for me. He left me by just falling asleep that evening, with me asleep by his side. I’d dozed off for an hour only. It was the only time I had been without friends or family for over two weeks and they were returning later in the evening. He waited until we were alone. In life he was a very private, almost shy man and it was the way he wanted to go, no fuss or drama, just me and him.
That was October 2016 and since then I decided I was going to live life to the full. How long have I got left? Only God knows. In life he encouraged me to go out and enjoy time with friends so I do now, at every opportunity but he comes with me in my heart. Obviously during the 47 years I had known him (44 in marriage) we did so much together, but we also had our own interests. I talk to him a lot and when I’m struggling to do something he would normally have done, I’ll say things like, “I know you’re probably laughing at me as you’d have done it in 10 minuets”.
Have I got over it....I don’t know. I now remember him how he was when we were younger and PSP free, not how he was at the end. I can laugh with my old friends and family about funny things that happened when we were all together. I do know life is worth living to the full and every minute is precious. Every day I read the plaque I have hanging at the bottom of my stairs which I have quoted here several times, “ Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain”.
My thoughts and prayers are with you now Cuttercat. I know how hard it is seeing the one you love suffering, I know how hard it is to say goodbye. Charles is still eating so you may have quite a while to hug and kiss him, tell him you love him, make happy memories, you are doing the right thing treasuring each moment. Your friend doesn’t love him the same way you do. She probably just sees a lovely man suffering and wants him to be free. She doesn’t have the emotional attachment you do so keep her as a friend, you’ll need friends in the future.
Oh Nanna B...What a marvellous post..You are replying to Cutter but speak to all of us. I am so grateful for your and our other 'Tribal Elder's perspective and wisdom. You will never know how helpful you all are.
My mother, 4 or more decades ago, taught me that it was quite valid to pray for "a good death". I liked the blend of reality and faith and love in that idea. Your husband's death sounds as good as it gets in this PSP/CBD life.
I think it was Anne. I’m awaiting with interest the programme you mentioned earlier about carers being positive. As a child I heard Bing Crosby singing a happy song and asked my dad what it meant. He explained and after that whenever something went wrong in my life he would sing it to me, or when I was an adult, just say the first line. The words are:- Accentuate the positive, Eliminate the negative, latch on to the affirmative and don’t mess with Mister In between”. My dad was always positive and cheerful, nursing mum with Alzheimer’s for 15 years and even to the point of telling jokes to the paramedics as they tried to help him in his 97th year. Very annoying to a worried daughter but I have definitely taken after him and not my mum, given to long periods of being miserable (realised after it was probably depression). I sang those words many times during the PSP years and for me they definitely helped. Maybe because they reminded me of dad. My darling husband was also positive. Soon after diagnosis we were reading about it on the internet and he could see I was sad. His response was to put his arms round me and say he was 62 and had lived a happy life with a wife and 3 children he loved and still had time left to make memories. He then mentioned a 38 year old woman, the daughter of a friend who was brain damaged at birth and needed 24 hour care all her life. She has been PEG fed as a baby, can’t talk, walk etc. She is like Colin was nearing the end. She understands everything and communicates with facial expressions only. He said what would be happening to him in the future will only be for a short time, A will spend a lifetime like it. He told me he had no regrets.
I know that kept me positive during the illness. We would laugh about awful things we had to go through. Yes there were times I would cry and shout at God but all the time C could speak, he would say something to lift my spirits. He was never a joke teller, he could never remember the punchline but during those long hard years, he said some very funny things and we laughed every day.
There is a plaque that I now have on my desk that states "Be Here Now". It is to remind you of the important things in life and not be distracted by the unimportant. PSP takes our loved one so quickly and we're so caught up with the disease and all the exhausting caregiving, that we don't always take enough time to treasure the moments we have with our loved one nearly enough. Kim and I were married for 35 years and I lost her to PSP a little over 22 months ago. I would give my life savings to have her back for one more day. Just to hold her. To caress her. To tell her how much I love her and how much I miss her.
Treasure each and every moment. You'll be so glad you did.
Oh CC, how heartbreaking. I know the feeling of eminent loss and it's devastating.
I don't think you are ever ready to let go of someone you love and who has been such a huge part of your life. People who haven't been there just don't understand. It's not their fault, they just weren't as blessed or haven't had loss yet.
Your strength will come as needed as you are not alone. Bless you.
My heart goes out to you. My tears are the heartache we have suffered or will suffer with this horrible disease, but know that you are not alone and my love and prayers are sent to you. Nancy
Oh Cutterat, there will never be a time when we are ready. One year ago, I was still hoping that this was some kind of mistake, that my husband really doesn't have this awful disease. Now, I watch the slow, inevitable decline and struggle to be happy for the time we do have. The falls are more frequent, the choking more severe, the sleep disruptive. I understand your pain.
Yes, I have often thought the same way you do (I'm sure everyone here has) that there is a mistake, but alas we are all going down the same path. The bumps may vary but it's pretty much the outcome.
I hate the disease but am happy each day I have Charles. He is stable, once again, and today looks happy. I try not to cry each day but I do, if ony for a minute or two.
Thank you, Cuttercat. You were here for me when I first found this site, and I know you are a good soul. Please know my prayers for the both of you continue.
You are correct. I am never really ready for each loss of capability that occurs each month knowing that this ugly disease with ultimately take the life of my precious wife. I have gotten used to bathing her, feeding her, guiding her, and comforting her 24/7. Even though this is not the relationship I wanted, I don’t want her taken away.
This disease has reinforced with me that there is no hope in doctors or medical facilities. There is only hope in my creator God.
Prayers for you to have time with your beloved Charles as much as you can.
I don´t think we have to be ready for our love ones to pass way. Four years ago, my mother passed away and I was not ready, I still miss her. Four years ago, my husband started his neurological condition, I was not ready as none of us were. As much as it hurts to see my husband in this condition I don´t have the right to even think how long he will survive to it. I just leave day by day but as you I AM NOT READY... I am starting my fifties and I thought we would have time to travel and have fun... My son who is 22 knows the time is short with his Dad and has been a great support on affection. Receive my love, Patty
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Really annoyed & upset. 
We are at \"that\" stage 😢
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