My Mom


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My Mom

Postby hope4mom » Thu Nov 20, 2014 1:00 pm

Hi everyone,

I have been looking for a place to talk about this for a long time. There aren't any PSP groups where I live so, it has been unnerving 2 think that my mother's was probably a rare case( even though our neurologist said that PSP cases aren't that rare ).

People feel bad when they see my mom's condition. She was diagnosed somewhere in Nov-Dec 2009. She used to be a very active home-maker, very helpful. She used to help me make the most wonderful school projects. I would talk to her everyday about everything. I still do, but it's a monologue. Her speech is extremely unclear. On good days, she can make a sentence and I feel connected to her again.

I get the sympathy that people feel, but it's the pity that hurts me sometimes. Because all we get is pity. Especially, the repeated questions from people about: what is wrong with her ? , how did this happen ?, isn't there a cure ?, you should show another doctor, hire a Help to take care of her.....

I feel angry on hearing everyone of these questions. Some are repeated by my relatives every time they visit. :|

My worst fear is that I am forgetting who my mother was pre-PSP. I wish they find a cure soon. I want to save my mother but I don't know how :cry:
hope4mom
 
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Joined: Sat Oct 25, 2014 1:48 pm

Re: My Mom

Postby Robin » Fri Nov 21, 2014 11:41 pm

Your sadness comes across, loud and clear. I'm sorry for what you and your family are going through.

Perhaps you could give some literature about PSP to those who ask questions? Maybe you could say "I hope you don't mind but I get tired of answering the same questions over and over again. If you are truly interested, please read this to educate yourself."

Or maybe you could ask them if they could do one specific thing to help your mom?

Good luck,
Robin
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Re: My Mom

Postby hope4mom » Fri Nov 28, 2014 12:30 pm

Hello Robin,

Thank you for your kind words. Feeling a bit better now. I will try out what u suggested, hope it works out.

Shared some ice-cream with mom today. She was happy and smiling. Made my day :D

I have read a few ideas on the forum about feeding patients, but can u suggest some home-made recipes which are effortless to swallow . My mom has lost a lot of weight. I am hoping to give her food which can make her healthy again. Nothing too sugary....
hope4mom
 
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Re: My Mom

Postby Robin » Fri Nov 28, 2014 10:45 pm

Here are some cookbooks recommended by Laura Purcell Verdun:

The Dysphagia Cookbook, 2003
Meals for Easy Swallowing, 2005. See: als-mda.org/publications/meals
Easy-to-Swallow Easy-to-Chew Cookbook, 2002
Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties, 2007.
I Can't Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders, 2003.

For more info, see:
viewtopic.php?f=2&t=8424
Robin
 
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Location: USA - Northern CA

Re: My Mom

Postby hope4mom » Sat Nov 29, 2014 10:03 am

Thank you :)
hope4mom
 
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