Very upsetting day

[Servena03]

Hi my friends, it been a exhausting day urgent doctors appointment, then long call from our PSP specialists, then help assistance to make appointment, plus you will here from the hospice, thankfully my daughter's here with me, I am exhausted, shaking and scared, yes we know the inevitable, but John has only had severe constipation, a boil, nappy rash and infectious nail, all within weeks, I've been told his body is breaking down, but he is no different to me I can still care for him, what do I say to him he knows he has PSP but never told him the awful outcome, how do I explain what's happening, I will try and make this a Christmas to remember with our children and grand daughter, I can't stop hugging him, I feel sick, me and my daughter have cried in each other's arms, how can I sleep now, bless you for listening i know you're all going through it too, God gives us strength, love from Jean and family xxxx

[JodiP]

My heart aches for you. My father was diagnosed about a month ago. We have an appointment with the specialist to go over details of his disease. The thought of the doctor telling my dad all the details is gut wrenching. He has a few decisions he will need to make while he can still speak. Such as, does he want a feeding tube.

I will keep you in my prayers. Stay strong

[Dadshelper]

I am very sympathetic to your situation. You need to explain to him the outcome of PSP, even though his journey may differ slightly from other people. It's his life and in my opinion he should know so he can make appropriate decisions for his future care needs and what he doesn't want. If he makes his wishes known then there is no second guessing or wasted time when difficult decisions have to be made.

Ron

[rriddle]

Sorry to read this. Truth be told, you don't know when your dear husband's end will come. At least not right now. Try to stay "day to day" until the end is obvious. Then you will know when to say something to your husband and what to say.

[doglington]

Hello Jean

Try not to panic. I know how frightening it is.

I have read your last posts and see he was diagnosed in 2012 so he has suffered a long time.

I hope you have discussed things like having a PEG and " end of life " wishes ? He must realise the prognosis is poor.

My husband died a year ago. He never discussed the details of what would happen next. He just " fought " whatever happened next. He was 84 so we know we will die. We had conversations whilst he could still talk about his dying wishes.

You can only comfort and love him whilst PSP inevitably progresses.

We are here to support you,

lots of love from another Jean xx

[tlovins]

Boy, it’s been a rough week for our PSP “family”. I was told by dad’s hospice nurse this week that it is time to tell him it’s okay to let go. I struggled with this because I wasn’t sure of his understanding that PSP would eventually take his life. As his carer I could never bring myself to tell him. I tried to tell him as gently as possible this week and his eyes opened wide and he immediately started trying to communicate something to me. It was utterly heartbreaking to not be able to understand what he was saying, as I am certain it caused some fear in him. If there is one thing I could do different with dad, I would have made sure he understood while he could still talk. Prayers to you and your family this Christmas.

[AJK2001 in reply to tlovins]

Don't beat yourself up on this. I have explained to my Mum so many times that it's a progressive disease Mum, you are not going to get better, we can just do exercises and things to keep you as well as we can for as long as we can. Then the next visit to a health professional and she asks the same question "when will I get better". Some of them are good (our dear CM) and explain as I have, some are cowards and leave it to me to say. If the patient is in denial, there's not a lot you can do but support them the best you can along their journey.

[Katiebow]

It is a very frightening time but somehow we find the strength to do what we must do. My husband died 7 months ago but was aware of the prognosis from early on, although he never wanted to discuss it. He made his wishes known as to what interventions he wanted, which was basically non except to be kept comfortable and as painfree as possible. It is a difficult thing to watch the one you love being consumed by this awful disease, all you can do is be there for him I'm sure they feel that love and reassurance as they battle, it's all you can do unfortunately.

Sending warm wishes to you.

Love Kate.

[SewBears]

Dear Jean and family, I’m so sorry to hear that John’s body is shutting down. He probably understands more than you think he does. There’s no need to explain to him what is happening, somehow he knows. Making a Christmas to remember will be very special. I love that idea! You’re already giving him lots of love and hugs. As hard as it is I try to reassure my husband that I’m strong and that I’ll be okay when his time comes. Even though on the inside I’m breaking and shaking and hiding my fears. When I tell him that I’ll be okay he relaxes and calms, his eyes light up, and I know that he understands. I hope that what I’m saying makes sense because I haven’t slept much either. I feel like my gift to my husband will be to let him go. I’m hoping for more time, but I will not be selfish when it happens. He deserves peace, away from all of the needless suffering. It’s hard to grieve for someone while they’re right here, but their mind is not the person we know, nor is their body 😢

[SewBears in reply to SewBears]

Earlier I mentioned that explaining to a loved one about what is happening to their body might not be necessary because they probably have an understand of what is going on. What I meant by that is when the person is too far along with the disease that they might not respond, or they understand in the moment, but then they repeat the same question 5 minutes later... Sometimes it’s okay to communicate that they are loved because to explain the disease over and over again is exhausting. That’s what I was thinking in my earlier post.

[LuisRodicioRodicio]

Hi Serverna03!

During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to those who are in previous phases of this disease.

I can not improve the responses of my chat partners listed at this time as answers. Wishing the best for you and your family and if the document with experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail.

A big hug. Courage and luck.

Luis

[Hiking13]

My heart goes out to you I am sat in hospital with my husband he has been fighting PSP and has been in hospital since July I am desperate to get him home for Christmas (our first and last one as man and wife) we even had to get married in hospital as he wasn’t allowed out as too poorly it’s heartbreaking. Stay strong and keep loving him it is so hard and I can honestly feel and share your pain

Love Sarahxxx

[Marilyn_cbd12]

My heart goes out to you all. But I agree that it is his illness and he has certainly earned the right to know what his condition is. You can't sustain indefinitely the fiction that he is going to get better. As hard as it is, it seems kinder to let him be involved in decisions made about his care, his comforts and his leave-taking. It is possible that in sharing the truth, you all will be less stressed and closer than ever.

Marilyn