My mom :(


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My mom :(

Postby beanboo » Thu Dec 06, 2012 9:36 pm

My mother has been suffering for so long now it kills me that she has to suffer more. I know she is in the end stages f this disgusting horrible disease. She can no longer do anything but sit there stiff and non responsive. Words can not describe how I feel and how much I hurt. It is sad that I want God to have pity on her and lay her to rest. It kills me .....

Hospice doesn't say how long she has. No one can tell us !!!

I hate this disease and what it as done to my family. It has then someone from me I love so much!!!!
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Re: My mom :(

Postby eplowman » Fri Dec 07, 2012 2:08 am

It's okay to vent your anguish over what PSP is doing to your beloved mom. It shows that you love and care about her.

The best thing you can do for her is to express that love and care in practical ways bathed in understanding, patience, compassion, and consistency. Spend time talking to her, even if the conversation has to be one-sided (tell her you understand that). Recount favorite memories, even fun ones. Bring her abreast of positive family news. Speak slowly and simply enough for her to process the words and thoughts. Hug her, if that has been part of your past relationship. Those will be times she will treasure.

Take courage and be strong for her.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: My mom :(

Postby Robin » Fri Dec 07, 2012 12:34 pm

I'm glad you have the help of hospice. You might see if the hospice social worker can discuss your very-understandable feelings with you, privately.

You might try reading the book "Final Gifts." It will give you some ideas of things you can do and say to your mother at this time, or when it's more obvious death is around the corner.

There's also a good video about the signs of dying. It's by the author of the booklet "Gone From My Sight." I've posted notes from the 90-minute video here, in the Family Caregiver Resources section. You may have to scroll down to the posts near the bottom of the page to find it.

If your family intends to donate your mother's brain upon death, now is a good time to make those arrangements. Also, this would be a good time to make funeral arrangements as well.

Best wishes,
Robin
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Re: My mom :(

Postby gulfcoastpsp » Sat Dec 15, 2012 4:08 am

It is time you train hospice. Do what makes her happy although she is trapped in her body. Take her shopping and allow her to explore the isles and watch. Give your mom purpose everyday. Tell her to never give up. It is important
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Re: My mom :(

Postby beanboo » Fri Dec 28, 2012 7:43 pm

Thanks so much for responding. The holidays ave been pretty tough. Mom has had a fever and as of today has stopped eating. We got her to take in some baby food but other than that just Gatorade to drink.my dad is so frustrated and I know he is not ready for her to die . Just don't know how much longer she has......trying hard to be strong but it is hard.
beanboo
 
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Location: BURLINGTON MA

Re: My mom :(

Postby eplowman » Fri Dec 28, 2012 11:20 pm

A fever?

Might it be a UTI? Or, something respiratory? Is hospice treating it?

I'm sorry this is adding to your and your dad's concerns for your mom -- and just adds more to what she has to put up with from PSP. We hope and wish the best that can be for her.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
eplowman
 
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