A newcomer - Mum with PSP

[MissTR]

Hi, I have been following posts on here for a while, but I wanted to say hi.

My mum has PSP - diagnosed 3 years but early signs 5 years ago. She is 67 and now lives in a care home and has a PEG. She takes no liquids orally but still is on a fork mashed diet. She can't walk but she can transfer from wheelchair to seat / car. She can talk a little some days but other days it is just more like sign language. She is incontinent at times (this has improved) and wears a pad full time. She suffers with regular UTIs. She spends a lot of time with her eyes closed and she can see very little now. Life has certainly changed!

Fortunately, my sister and I live close and we both work part time. My mum has always loved being out, so even now we take her out 4 times a week - to town, to the beach, to the supermarket or to our houses. We have 3 young children between us so she has a lot of life going on around her. The care home believe that all the interaction is helping her to stay stronger for longer.

Inevitably, it is getting tougher and she is going downhill ( we tend to have big drops and then plateau for a bit) and I am nervous for the year ahead as I can't see where else we can go....

Thanks to everyone who comments on this page, I find it really comforting that others are, sadly, in such similar situations. And that having deep down feelings of great sadness paired with anger is normal!

Tracie, Jersey

[kenh1]

Looks like you are doing the best for your mum. My wife is fed by ng tube, a sitter who was looking after my wife started giving her 60ml of water through the tube every hour. I followed her example. We haven't had a UTI since. God bless you in your caring.

[MissTR in reply to kenh1]

Thanks - I will suggest that to the home.

[Hidden]

Good Morning Miss TR,

Sounds like you & your sister are doing your best to keep mom active & involved as much as possible. Keep doing what you are doing as long as possible.

Sending Hugs... Granni B

[Dadshelper]

Welcome to the site. Sounds like you and your sister are doing the best you can. Keep getting your mom out and visit often, I personally believe it does help. If you have any questions just post them and someone will answer soon.

Ron

[enjoysalud]

I think you are doing exactly what is needed. The interaction, the outings, the PEG, the mashed fork food.

It is difficult to lose someone you love to this unimaginable PSP. My son was 52 when the first symptoms appeared (Double vision, fatigue, and slurred speech). He died at 55. He had no UTIs but suffered two bouts of aspiration pneumonia. He too was nearly blind when he died. Enjoy your mom.

[DunyaNews]

Very sad to hear about your Mom! May she recover soon to be her own! I fully understand , it is a very difficult time. May GOD bless you and your sister with good health and real happiness always!

Nothing more to say!

Regards

Dunya Newd

[Bhakthan]

Congratulations that you're able to take her out regularly! More the socialisation, more the relief for the patient. Regarding the UTI, may I suggest the following:

Four tablespoons of turmeric powder ground from the root, one tablespoon of black pepper powder, 1/2 teaspoon cinnamon powder, 1/2 teaspoon of Fenugreek powder mixed well. Taken with one tablespoon of pressed coconut oil and 1/2 spoon honey thrice daily after food. This should get rid of the infection and prevent colds, coughs and fevers! It would even keep sugar levels under control!

Reflexology on the soles of the feet would help in muscle loosening and movement of her bowels.

Try! At least no harm could come, but benefits could come!

[NHGrace]

Keep on keeping on! She’s lucky to have such devoted daughters and some grand babies around to lighten the mood!

[Dickwin]

TR

you are doing all the right things. Hang in there and know your Mom appreciates everything you are doing. She is lucky to have such caring children.

Good luck and stay strong.

Dick

[LuisRodicioRodicio]

Hi MissTR!

During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers.

e.

I can not improve the responses of my chat partners listed at this time as answers. Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.

Courage and luck.

Luis

[bevricas in reply to LuisRodicioRodicio]

Please send me you document---I would really appreciate it. My husband has PSP.