Hello everyone. Thought it would be ages before I would be writing this but no.Last Friday morning an angel came and took my darling husband John by the hand and led him away.
He's now at peace and no longer suffering.
I am in pieces. Living in a parallel universe, it seems.
I hate PSP. Hate what it did to my husband. Hate that it stripped him of who he was. The thing I hate most is the fact that it took away his ability to speak. He tried to communicate but couldn't. I tried to understand but was unable to make out his slurred, whispered words.
I hate that more than seeing him losing so much weight and struggling to eat.
I'll be fine, I know, one day in the future, but for now it's so hard.
If you could offer a thought or a prayer for us both, I know it will help.
Thanks to you all for your help and advice since I came to this forum only 5 months ago. This community is ace.
Much love and strength to you all as you continue on your path.
xxx
Written by
Leosta
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Dear Leosta, I am so sorry for your loss, your post has brought a tear to my eye, not only for the passing of your husband but I relate so much to what you have said about communication, it hurts me so much not knowing what my wife is thinking or saying and her Apathy just makes this worse. My thoughts and prayers are with you. 🫂
Thank you Zerachiel. My heart goes out to you that your dear wife is also in the same "silent" phase as was my John. It's not easy, it's heartbreaking but keep strong and keep talking to her. She hears you.Many hugs 🫂 xx
Dear Leosta, so sorry you lost your beloved husband. My prayers are with you. My husband is also frustrated he can't talk to his friends. He doesn't mind not being able to walk much but can't bear his speech not being understood. I have tried teaching him sign language from YouTube videos but he is not getting involved.
Dear Leosta, My thoughts and prayers are with you at this time. I am so glad that this forum was able to help you since you joined this 'family'. It is so understandable that you should feel anger at what happened to him and it is good to express this anger on a safe forum like this. You may have seen this poem that I wrote about my husband dying. I now feel so at peace believing what I wrote. Take care of yourself now. Love AliBee x
His wicked sense of humour will have now come to the fore
His love of birds and insects will have now returned once more.
His ability to answer each and every quiz will once more be in place,
and his laughing eyes and lovely smile will now be on his face.
He is no longer crippled by his horrible disease.
His legs will now obey him so he can Morris dance with ease.
His voice and speech are better so he can raise his voice in glee.
He can sing and laugh with angels as his spirit is now free.
We cannot help but miss him and feel sad that he has gone,
but we can’t be sad he’s been released from his body which went wrong.
He did believe in heaven and life beyond the grave,
so let’s give thanks we knew him and thanks we know he’s safe.
Dear Alibee1, Thank you. You understand what it's like. Your poem is beautiful and touched me immensely as the words are so meaningful to John and I too. It's the first time I've read it so thank you for sharing it with me.Love and prayers xx 💟
so so sorry but he’s not suffering any more. My husband was diagnosed in August and so we have just started on this terrible journey. Who knows how long it will last. All I know is that the quick progression is frightening. Grieve as much as you want and need - you are indeed living in a nightmare for the time being but stay strong 🥲😘
Thank you for your kind words. So sorry for you and your husband. It's not an easy path to tread but you'll find you get closer together and see what is important in life and what is not. Keep strong for him and for yourself.Sending love and hugs 💟🫂xx
Sending you love and light ❤️ So sorry for the loss of your husband, peace for him at last released from this wretched illness. My mum is on the same journey and I agree, the loss of speech is utterly dreadful.
I feel your pain and feel exactly as you do Leosta.I write rarely, find it too painful but am compelled to respond to you, give you a hug and tell you I am in the same place.
PSP took my precious Mum away, years before the angel.
Losing her speech was the ultimate cruelty and I still struggle with that "for" her and myself , her grandchildren and friends.
Your husband is at peace and he was loved - hang on to those two things and allow yourself time.
You've experienced this loss too. You understand how PSP takes them away before they've physically gone. I said to the doctor that I was now alone and he replied " You've been on your own for sometime". So true.Thank you for your support.
Leosta sorry for the loss of your darling husband. I can relate to what you say so much. Karol has the problem of communication and it’s so hard. Sending hugs 🤗 from Bonnie Scotland 💜💜
I lost my wife three years ago. The hole he has left in my life and in that of our family, nothing and no one can fill it and his spirit, his advice, his support, are still present while life goes on.
Your experience after so many years can be useful to people who continue to be plagued by this unknown disease. It is time to recover old friendships, old hobbies, new stimuli that make us grow as people. At first one finds oneself empty and disoriented, it is natural after so much time focused on the patient. It is difficult to return to social activities, one finds oneself somewhat "rusty" and "dented", but there is no better way. It is time "returning to the self" is now the goal.
PSP patients and caregivers are a constant in my prayers.
Thank you for your wise and kind words Luis. You were a great support to me when I first joined this forum. Your reply today is a huge support and I thank you for taking the time to reply.Sending you love and hugs x 💟🫂
I’m so sorry. The stolen speech is by far the cruelest aspect of this brutal disease. The words spoken but not comprehended still haunt me. I’m so sorry.
I am really sorry for you loss and send you a billion hugs and a trillion flowers. I salute you for you bravery and your compassion. You deserve a medal of honour for the love you showered on your husband John, am writing this while holding back my river of tears.
Dear Leosta, I'm so sorry to hear of your loss, the poem that Alibee1 sent is so lovely and comforting . My mum was diagnosed just over a month ago and she's rapidly deteriorating, she can't do anything for herself and the last couple of weeks her voice comes and goes. We hadn't heard of PSP and Im so glad I found this site although wish we weren't dealing with this horrendous illness. Sending love and hugs.
We all wish we weren't dealing with PSP, but here we are. So sorry your Mum is going through this. Sorry for you that you have to witness the deterioration. You'll find this site a source of information and of comfort.Take care xx
Like you I found this forum worth it's weight in GOLD. I've learned such a lot from carers on this site about this dreadful disease which as helped me to prepare for what may come. All the best to you in your time of need. I will say a prayer for your husband. God bless us all.
Praying for strength, peace, and patience for you Leosta. Thank you for sharing. It is so helpful to know that others understand how psp has changed our lives so much. I find it so comforting to think about all the things that psp took will be returned by the grace of God. Big hug to you.
I wonder if where he is now he's looking down and saying: What's all the fuss about? I'm fine now. I hope so. 🙏Thank you for your message and prayers. Will remember all the wonderful people who have taken time out to reply to me.
So very sorry for your loss. Please try to find some comfort in knowing that your dear John is no longer struggling with this horrid disease, just as Alibee's beautiful poem reminds us. Sending big hugs, Purrlie
I'm so sorry. I wish I could bring peace to your heart and mind. My husband is showing so many signs, and I worry about how I will feel when he starts into the worst stages. My husband is talking very low now. He gets aggravated because he has to repeat himself. I hate watching the debilitating disease take it course.
Sorry to hear your sad news Leosta. I'm sure you know that you did all you could to make John's life comfortable by being there holding his hand through it all. Thinking of you and saying a prayer 🙏God Bless.
Bless you Loveispatient23. I've always thought your blog name was beautiful.Yes, I've had it confirmed by the doctor and loads of friends that I did all I could, but just wish I could've been there at the very end holding his hand. I was selfish and needed to sleep. I'll have to get over that.
Oh Leosta, I'm so sorry, I hope I haven't offended you. With this illness Love is patient comes into its own, although I know it can be hard sometimes. I really hope you can come to terms with this and know that you always went above and beyond. Your husband appreciated that. Please be kind to yourself and take care. Trust in ✝️🙏xx
Listen, you haven't offended me. Please don't think that. You're right that with this disease you have to love and be patient and at times it could try the holiest saint.I wrote what I did to you because of all the wonderful messages of love and support I've received from this family and it's "opened" me to express how I feel. This "opening up" has been cathartic , it really has.
He will understand now why I wasn't there. Maybe, as someone has said, he didn't want me to be. He knew I loved him and did my best. That has to be enough.
Without my faith I don't know how I wouldn't be managing all of this.
My sympathy to you Leosta. My husband is on hospice as of last night. I just met the nurse for the first time an hour ago. This disease is so horrible. I like you also have watched my husband loose 40 pds over the last 6 months or so, not be able to communicate and now not being able to eat or drink without aspirating. The hardest was watching him today as the hospice nurse was talking to him about what was going on. I don’t know how much longer he’ll be with us before his angel takes him away but I do know that I hate PSP also and no one should have to suffer like this.
I’m so sorry that you’ve lost your beloved husband…my heart really goes out to you.
I’ve never posted on here but I read all the posts so I can try to understand this awful disease.
My mum has PSP and no one I talk to understands so this group is such a blessing for me.
My mum can’t talk at all now and can’t do anything for herself and it’s so heartbreaking.
I’m sending you so much love and many hugs. Take all the time you need to grieve and hold on to all the good memories you and your husband made together. As you say he is now at peace and I hope you find peace too in the future.
Thank you so much for your message Kimmy.It's true that even the medical professionals don't truly understand. They pop in and pop out but don't know what it's like to live 24/7 with a PSP sufferer.
You know the difficulties that your Mum now has. You know how hard it is to witness that.
I'm sending you love and hugs and a prayer in reply. Take care.
So sorry to hear your news. I've heard others on this forum who have had to do all the caring talk about the importance of resting. Not only have you been on your own in many ways for some time, but you have been giving so much. Take care of yourself.
From the beginning to the end of the difficult journey you do what you have to do to care for your loved one. And you forget to take care of yourself. Now I have to rectify that.Thank you messier. 💟
Dear Leosta ,Love to you and many condolences. Such a sad sad happening . Very grateful that John had you by his side ! I'm sure that made everything much more bearable for him. The loss is monumental but PSP isn't powerful enough to extinguish years of love and togetherness . I feel the same way as you about the frequent loss of ability to communicate that can afflict many who have PSP. My sister has been in my care for over 10 years and during this last year, her verbalizing or responding verbally is now rare. Such a heartfelt and frustrating symptom for everyone involved ! A huge loss before the biggest loss. I think that both my sister and I would be in much better spirits if she was still able to get her thoughts out and we could relate to each other as we used to ! The conquering of neuro illnesses like PSP , CBD , FTD , Parkinson's , Alzheimer's , ....... will happen I believe, but in the meantime we keep on doing the best that we can do under many different and demanding circumstances ! PSP may be relentless , but so are we ! And helping people who need it is a great thing !! All of our losses are deeply personal , but everyone who makes a positive difference out there and not only that , finds solace or has an idea or shares their experiences on this site or others , well that's amazing ! The people dealing with their illnesses who make the effort to inform , educate , and keep going also keep us carers going . And no illness can really win over that.
You be well and get well in spirit soon ! We're all thinking of John and you and sending warm wishes and hugs !
Thank you so much for such kind and positive words. And your wishes and hugs. It's the funeral today so that will be tough.So sorry for you and your sister taking this difficult journey. Love will shine through even if words don't.
I feel your grief and your pain Leosta.Time will allow you to remember the happier times too, but for now, remember the love that you shared and be kind to yourself .
Allow yourself to grieve and to talk about the person you love and have lost.
Grief is the price you pay for love and having had a great love is worth having the grief.
Leosta, I am so sorry for your loss, this disease robs so many of years together that we’re not promised but yet expected. My husband and I will be celebrating our 41st anniversary in a week and my heart aches for seeing his smile, hearing his voice and receiving a twinkle from his eye. He was diagnosed 2 1/2 years ago and the rapid progression and differences day to day are hard to watch.
I hope like you I can use this forum for support and understanding.
Thank you so much for your kind words. It's a month today that John was taken from me and it's his smile and his voice that I miss so much, even though he had lost them before he passed. You know what I'm saying. It is so very hard to see your husband slowly disappearing before your eyes, knowing you've lost the essence of them already. My heart goes out to you.Love and strength to you xx
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