My J: Sorry all that I have not posted in a... - PSP Association

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My J


Sorry all that I have not posted in a while. J was admitted into hospital last Sunday as he became unresponsive whilst trying to wake him from sleep. The week has been hectic up and down to visit twice a day. We have been told he is in end stages and that he has been fast tracked for CHC funding for a palliative package of care to get him back home. They think it might take yet another week to get this all in place. The house (flat) is empty without him and I just feel griefed and empty and alone. Has anyone else been in the same boat???

13 Replies

So sad to read this Escada! What an absolutely dreadful time for you both! Sending hugs and strength for the coming days x

So sorry, it's a tough time for you and J. Ben didn't have to go into hospital and already had funding when he passed away in May. I do hope you get everything in place for him to get home where you can be in the comfort of your own home at this difficult time.

Sending live snd big hugs

Kate xxx

Yes. I felt and still feel that way with home feeling empty and me alone but that is my reality today. Michael was in the nursing home for 8 months before he passed and I was with him everyday, all day. It's so difficult to bounce back and forth between home and visits.

I sincerely hope you are able to take him home soon. That should take some of the loneliness away. I'm so sorry you both are going through this. It just stinks!

Many hugs and prayers,


Hi Escada29, right now I am on exactly the same page as you. My husband went into hospital 2 weeks ago following 2 weeks of hell quite honestly, with his unresponsiveness coupled with periods of aggression and barely eating or drinking. I was almost on my knees begging for help from our medical team but felt totally abandoned, and it was a rapid response nurse who came to our rescue and I will be for ever indebted to that man. R is now in end of life care, at this moment I am not sure whether he will be moved to a hospice or stay in hospital - the lack of support I have had gives me no confidence whatsoever that I can have him home for his final days/weeks. Like you, I am back and forth to hospital, which fortunately is close by, but on top of the last few months I am totally drained. The house is deafening by its silence. Hard to relax even though the main pressure has been taken off me for the past 2 weeks. I will keep you in my thoughts as I too continue to the end of this horrible journey. Stay strong. HilsandR

I left a reply but it didn't appear.

I had Chris home from hospital with palliative care and the team from our hospice were brilliant. It was as good as it could be.

If it can be arranged it is easier for everyone.

My thoughts are with you.

Love Jean xx

I’m so sorry. Many here can understand and commiserate with you. For me the difficult part is that there is just no good answer. To have him home when you feel anxious, overwhelmed and are not properly supported is a nightmare for both of you. To have him in hospital or a care facility is lonely, sad, and sometimes even brings feelings of guilt. Traveling to be with him each day, and just spending your day there can be grueling also.

Can you spend a little time with friends or family? You’ve been doing a great job with J and you deserve a little love and support for yourself. I too feel anxiou and alone. My amazing man just looks at me. Very little response, yet he seems to understand. My heart breaks for him too.

Do they say why J was unresponsive ?

It is so hard. Sending hugs and positive thoughts your way. 💜

Karyn thanks for your reply you have hit the nail on the head with all of your comments its just so hard anyway you look at it. I am so sorry for you and your husband it is not really the best way for people to have to live . Yes I do know why J became unresponsive or so they have told me. Previously we had been to see the Parkinsons Nurse, had'nt seen or heard from him in years but as things were progressing I thought it about time someone helped him . I was telling him how I thought J taking Madophar was not working anymore and swallowing issues etc so he came up with the idea of Rotigotine Patch to use instead of pills as he said we could'nt cut out because J would by now be addicted to Madophar. So this particular Sunday I placed one of these patches onto J although it said 2 patches I only placed 1 on him was worried what 2 might do to him. J went back to bed before lunch and after 8pm he was still soundly asleep that is when alarm bells starting ringing I dialled 111 for advice and an ambulance was called.

Thanks for your reply. Please keep us posted. This is all so horrible. My husband seems to enjoy eating and looks at telvision soon, but his quality of life is not great. I pray he is not in pain, as he rarely speaks and cannot tell us. We just judge by facial expressions. I hate bing stuck in the house, and late bring so dependent on others . We are both missing out on so much of life.

Escada I am so sad to read your news. I hope he goes peacefully. Hugs to you.

Marie x

So sorry to hear this - sending prayers and hugs.

Tim xx

So sorry xxxxx

I am so sorry to hear what you are going through and I can fully sympathise with what you say. My fiancé has been in hospital since the end of July and I spend every day there with him and it is exhausting and then I also understand what you say about coming home it is so quiet and lonely. I am trying to get Steve home, he needs 24 hour care as he has a tracheostomy and needs nebulisers and suction at least every 2 hours. I really hope something gets sorted for you as at least having them home saves the constant journeys to and from hospital. I will be thinking of you and sending big hugs Sarahxx

Escada29 in reply to Hiking13

Thanks so much Sarah xx

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