I haven't been active here as I am struggling being away from my mother with PSP in Italy and the guilt I have. I have a demanding job and tried to focus on doing what I need to do every day.
She currently have UTI and severe constipation. I wondered if you have any suggestions that I can communicate with my siblings and mum's carer.
She is also losing weight for no apparent reason and sleeping so much more than usual. Are these signs of her decline and getting near the end?
I am worried and I hate being faraway. I have a flight ticket for August and cannot wait to hug her!
With deep gratitude.
Antonella
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Zibo
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Please, please do not feel guilty, you are doing the best you can for your dear Mother. We all have to keep on keeping on doing what we have to do around this horrid disease.
With regard to the UTI, keep up the liquids, we've found cranberry juice helps and isn't too bad with thickeners. I've noticed that whenever Chris gets any form.of infection his symptoms get worse, sometimes they improve post infection but it often leads to a down turn, which is what we're experiencing now.
awww, that is so sweet, thank you! Thanks for the cranberry juice tip, definitely works for me and should be passed on. Also good tip to see if any link with an infection. Will explore. Thanks again!!!
Hopefully her doctors have her on antibiotics for the UTI. constipation can be handled with doctors help or over-the-counter meds that promote softening of the stool. Pushing more fluids should help with both the UTI and constipation. If she is complaining of stomach pain discuss with her doctor about checking for bowel blockage. As for the sleeping more and weight loss those are some symptoms of PSP that may get worse as the disease progresses. Does that mean she is getting to an "end stage", not really, it's just that she is progressing unfortunately. My father lost about 100 pounds of body mass during his fight with CBD.
It sounds like your mom is in the U S. If you don't have hospice involved in her care now, you should think about it. Some PSP patients, like my husband, suffer greatly from constipation throughout their illness. It can be a very serious problem. Hospice deals with this regularly and they are a great help with different ways to manage it. They are also a great support for those who are caring for your mom. We had hospice for almost 3 years for my husband and they were a godsend. They are not there just for 'end of life' care. When you have a progressive illness like PSP/CBD, Medicare covers their services as long as the patient's health is declining. Many people don't know this and wait far too long to seek their help.
Dear Pat, I am glad to hear you had good support with your husband and that the hospice provided the quality care that he deserved and needed. Unfortunately my mother is in Italy, Rome. Hospices are not good there; when we left her there for 10 days two years ago (as we did not think we could find a full-time carer who could hep her from home), it was the most heart-wrenching experience for us all. I really hope we don't have to bring her to a place like that. We don't have Medicare cover or similar. Thank you for passing by and your supportive message.
I can really relate to your guilt. I live in the UK but my mum (PSP for 3 years) and my Dad live in Australia. My brother lives in a different state so my parents have to rely on friends for help. Like you I try and visit as often as I can - being a teacher with good holidays help but it still doesn’t stop the guilt at both ends - either not being with my parents or not being with my husband. Be strong - hug your mum when you can and just keep telling her you love her.
Dear Mrm66, thank you for your empathy and understanding. It means a lot. I also work term time only (working with children but therapeutically) so I try to schedule my flying to Rome then. With much gratitude. Antonella
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