listening

[jeannette1964]

mum is getting worse quite quickly, her walking is very bad at moment plus she has got a nasty uti, she goes from wanting to wee evry half hour to the complete oppisite sleeping and not weeing. the weeing is a ongoing issue and dont know if uti makes it worse . pallative got commode but need two people to sit her on it im here best part of day on my own and use commode so carers put tena pants but my mother is so stubborn she wont wee in them but tonight carers got her with great difficulty to get her in bed first time in ages they were so pleased 2 hours later i had to get her out for toilet she has tena pants but wont use them any help or suggestions her walking so slow and she is unstable im scared she will fall, plus she has lots of other health issues copd so it is such hard work for her to get to toilet i dont know what to do im sure she understands me but refuses to wee in pants help

[messier]

my mum had this problem first with pads and then further down the line with a catheter. It was about not acknowledging the deterioration in disease. She had to go into a nursing home because she needed help taking to the toilet every 30mins to 2 hours all through the night. Then when it needed two carers to take her the nurses had a conversation with her about catheters. She was very bothered about it being obvious and will only wear trousers so that she feels it can’t be seen (it can but she doesn’t know that!)

[LuisRodicioRodicio]

Hi jeannette1964!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests they self in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a physician.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.

Hug and luck.

Luis

[LFG3]

You may have to get an indwelling catheter placed for her. That's what we had to do for my husband.

[AJK2001]

My Mum was also very resistant to "using" pads but after a fall she ended up in a nursing home for 6 months which she hated. They couldn't deal with her night time toilet needs so put in a catheter, which she really hated. She was desperate to get back to her sheltered housing apartment and part of the deal was, she would use pads and not get up, out of her bed or chair, unless someone was there to help her. She wasn't happy with the idea but it was a better option than the nursing home and she reluctantly agreed. She still tried not to use the pads and would try to hold on until a carer or myself were there to take her to the toilet, which sometimes led to accidents on the way (pads are designed for low flow over time rather than a gush all at once) but we muddled through. Have you spoken to your Mum about the strain it puts on you and how you feel unable to cope and if she could just try using the pads (have you the nappy style?) it would be such a help to you?

With regard the UTI, Mum went through a period of UTI, antibiotic, UTI, antibiotic. Then she was put on a low dose antibiotic for 3 months and it cleared up completely.

Good luck xxx