Thank you

[Meringue261]

I just want to say thank you to all the contributors, past and present, to this forum.

I am with my dad tonight wondering how he is feeling, how to make him more comfortable, afraid to take my eyes off him.

Thanks for sharing your experiences which are a comfort in this dark time. I know we’re not alone.

Wishing you all courage x x

[pmcdonough1]

Sending you love and prayers of comfort. Communicating with someone with advanced PSP can be challenging. You are a Ioving support for your dad. The following may not apply to you but in order to show my husband love when he was not talking were to comb his hair, swab his mouth with a barely wet swab, apply lip balm on his lips, squeeze his hand and tell him I loved him. I would remind him to rub his lips together and he would, so I knew he could hear me. We had a system of communicating where I would tell him to squeeze my hand if the answer is yes. Then I would ask him a question that only had a yes answer so when he squeezed my hand I knew the answer was yes. For instance: "are you comfortable" and if he squeezed my hand I would know he was ok. If I thought he might be in pain I would ask: "are you in pain"? If he squeezed my hand then I would ask him: "are you in pain in your head"? If he was in pain in his head he would squeeze my hand and I would get him medical care. Being a caregiver for someone with PSP I found I needed to be a bit of a detective. I carried around a small spiral notebook and documented what was happening each day so that I might identify a need my husband had and bring it to the attention of the nurses and the doctors. I wish you and your father peace and comfort.

[Meringue261 in reply to pmcdonough1]

Thank you so much for your reply and sharing your own experience with me. I’m sorry you went through that. It sounds like you had a system of communication that worked between you and your husband! My dad can’t squeeze my hand, but I am watching him closely, and as you say, talking to him and touching his head and hands so he knows I am here. He’s just opened his eyes for a minute which is wonderful. All the very best to you. X

[ChocolateFaceTeddy]

Thank you for your kind words big hugs & love for you & your Dad xx

[45purple]

Sorry about your dad this will be really hard for you. Hold his hand and talk to him he will know you’re there with him. Sending hugs 💜💜

[Eaton7]

God bless you, you are doing really well. Keep up the loving care, he knows you are with him. ❤️

[Leosta]

You're not alone. The angels are with you at this difficult time supporting you both. How fortunate your dad is to have such a loving, caring daughter.Sending you hugs and prayers xx

[Kelmisty]

How are you? X

[Meringue261]

Hello again. My dad died at 3am this morning. I was with him at the very last moment. Nothing could have prepared me for these last few days, they were hardest of my life. It was a difficult way to go and agony to watch. But it was the only way to escape this disease. He was diagnosed in 2018, stopped walking in 2020 and almost completely unable to speak for about 6 to 9 months. Eventually his swallow deteriorated but the final stage was fast and we didn’t expect it to come when it did. We had decided in advance that he should be nursed in his care home at the end of his life. It was a hard choice but it meant his suffering was not prolonged. But there is no right way or good way, I’m sure. I know that we are all free of this disease now which took up residence in our lives for so long. He didn’t deserve it, no one does. Wishing you all peace and courage, and good nursing. Thank you for your comments and support x x

[pmcdonough1 in reply to Meringue261]

Sending you love and compassion. Your commitment to your dad was a blessing to him. Having lost my husband last month I know the anguish and loss you must feel. You are correct that nothing prepares you for this loss. I am wishing you peace, courage and hope.