Thank you to all

[CJFreckles]

Dear all

Just to say thank you to this forum regarding all help and advice. My dad passed Sunday 3rd November. I am grateful it was quick as we believed he had an infection that the doctor didn't check for (even though we made them do a home visit on the Tuesday before he passed)

Dad's swallow stopped compltley on the Friday as well as his speech. He was given morphine by the district nurse and the EOL drugs started on the Saturday. There was talk to put in the driver from hospice on the sunday but he passed sunday morning. I imagine he had had enough.

I do have a meeting with his doctors next week. I have discovered they never passed on the PEG feeding tube referral as requested by the dietician in July. A UTI check was not done on the Tuesday before he passed as we requested when we noticed he wasn't passing a lot of urine in spite of drinking a lot. We also have had several issues throughout dad's disease, I think largely due to ignorance or practitioners being unwilling to listen to us that something was very wrong.

the kicker is we just got accepted for the CHC funding. Though even then, they still hadn't made up their mind about how they were going to handle the package of care for dad. I believe that because of this they have to compensate myself for any care I paid for from the agreed eligiblity date.

If anyone needs any advice re CHC I am more then happy to explain our experieince, or anything with the disease. I only managed to get dad formally diagnosed with Corticobasal in feb 24, and he has had symptoms for 3 and a half years we believe.

Sending love and thanks to you all again

Chloe xx

[Bergenser]

Dear CJFreckles. I am sorry to hear of your loss, sending large virtual hugs. Thank you for sharing your experience with us. 💜🫂

[bichonbear1]

My thoughts are with you, take care.

[Kelmisty]

I’m sorry for your loss, your Dad is free of his battles now.

Xxx

[messier]

Thinking of you and I hope that dealing with these issues about past care help you to cope.

[Bertieandpiper]

Dear Chloe

Sorry to hear of the loss of your dad. Sending thoughts and hugs x

[GeorgeMMXVI]

So sorry to hear this, sending love ❤️ xx

[45purple]

So sorry on the passing of your dad. 💜

[LittleOllie]

I'm so sorry for your loss, it sounds very similar to my mom who passed away from PSP in April. She got accepted for part funding at the very end and it was too late. Her swallowing stopped and her jaw clamped shut which let to the fast decline at the end. A lot of questions still go through my mind wondering if we did everything we could, her GP didn't really help and just said to my dad ' what do you want me to do'. In the end the cause of death was listed as PSP but we're still uncertain as to whether it was really PSP or that she passed from dehydration. She didn't want the peg tube so we had to respect that. There's not enough awareness of this awful disease and how it affects the patient and all the people around them who are so desperate for help with this. Take care

[Golden63]

So sorry for your loss . May he rest in peace x

[naz01]

Sorry to hear of your loss. Your loved one is in my thoughts and prayers.

[Leosta]

I am so very sorry for your loss. Unfortunately I'm sure most of us who have lost loved ones have stories to tell about lack of care, interest, knowledge on the part of the medical professionals which made the whole journey even more difficult. I doubt that PEG feeding or a test on a possible UTI would've made any difference given your Father's rapid decline. As you say he had had enough.

Focus on the fact he is no longer suffering

and he's at peace now.

Take care and good luck with your meeting. 💟

[Milocorn1]

Sending love and hugs x

[LuisRodicioRodicio]

A big hug.

Luis

[Lukade]

So sorry for your loss,take care of yourself x