My mother will turn 75 years old and has been battling with PSP for probably 7 years. She has had pneumonia twice and can barely be understood when she tries to speak. It is painful for me to even be near her as she is such a shadow of her former self. We are living in Mexico where she has wonderful caretakers and is living in her own home but I am afraid she is going to need palliative care and they do not give it here. She can not cough to clear her throat and I am afraid it is a matter of time before her pneumonia comes back and she can not get rid of it. I am just worried about how things will unfold with no hospice....and what i can do at home.
I want her to be comfortable and not suffer.....and some days I see her and she has her eyes wide open and seems to be more aware than others, and other days she has her eyes open but nobody is home.
This is such a terrible disease...really I have never seen anyone as bad as my mother and it is tearing me apart inside to see someone I love so much living with this.
Written by
mperlman
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Some times all that is needed by you is just to be there. My mom passed away 25 years ago and she battled cancer for 12 years. It was hard but even though you think she can not hear you, she can. My mom was just like your mom and I would talk too her just saying things that we had done anything, like going to the mall, and she would look at me and I knew she knew what I was talking about. So just hang in there. I do believe in the power of prayer 🙏🏼 so your on my list.
My mum is in the same state, no palliative care. We do everything in-house now, with trained nurses. Sometimes the care they get at home is better than hospice or palliative care, it is more personal.
The fact you are there for your mum during this time, by her side is what counts. It's hard to look into those lost eyes, I do the same, but remember she is still there listening to your voice. I see the little glimmer in my mum's eyes when I talk about the past, trust me she can hear you. As SSDW1958 said the power of prayer is profound. Take care.
I know its so painful. What you can do is cuddle them and tell them you love them. Talk about shared memories, especially of long ago. She will hear some, I believe.
I, like you, am taking care of Charles at home. Right not he has a UTI and with the antibiotics he is lucid occasionally. I'm gratified. She can hear you and just having you nearby is the most important thing. It is so difficult and I'm barely able to hang on myself.
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A newcomer - Mum with PSP
Mom is at her wits end.
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