Praying for Patience

Leni

Leni

New member
My 44 year old daughter who lives with us had a very rare brain cancer when she was 17. Up until then she was a straight A student. After the surgery she began to have memory problems. She married, divorced, and tried to make it on her own. Finally she asked if she could come home. That was 7 years ago. For a time she lived with my mother but when she passed Teresa came back home.

Her cognitive ability and memory have steadily deteriorated. She is now frunctioning at the level of a 10 year old. In addition to her memory problems and inability think things through her mind is now begining to play tricks on her. She finally won her social security disability appeal and now begins the search for supervised housing for her.

It is so difficult living with her. It's not her fault, poor thing, but its enough to drive us up a wall at times. Today she is tired and really non-functional. We lose patience with her. Any prayers will be gratefully accepted.
 
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Tough situation for sure. Good thoughts and prayers on the way.
 
All I can say Doc is thank God that I have a background in government adminstration. I worked for the State of California for 34 years dealing with the public before retiring. I had to file the claim for her and then after denial convince the attnys that she was in fact disabled and had funds to draw on. I didn't know that you could lose coverage so then I had to pursuade everyone that she was disabled before the loss of coverage date. Then I had to stay on top of everything both legally and medically. She cannot drive due to seizures and I wouldn't let her due to her lack of ability so guess who drives her 20 miles to her doctor appointments. She gets fantasic care because Olive View is the teaching hospital for UCLA.
 
Leni, you have a tough situation to deal with, for sure. I bet you often feel exhausted and frustrated and at your wit's end!

I'm glad you feel enough comfortable with us to vent - we can take it!

Positive thoughts and energies being sent to you, your daughter and your family!

Lee
 
Do you have a local brain injury association that can help with support? My sister-in-law works with folks here in our state, helping them with all kinds of issues from forms to appeals to respite care to housing... Having an advocate for her other than just you helps ease the emotional toll it can take on a person.
Take care...
 
So sorry, Leni. Sending good thoughts your way. Some resources that may help:

Apply for Access (Paratransit) They have a toll-free #
City Ride
IHSS - In Home Supportive Services
A+ personal care
SS may cover certain in home care/services
Jewish Family Services
Or senior centers, i.e. Bernardi

You're probably closer to Olive View than I, but that's a long drive. Perhaps Cedar Sinai would be closer.
 
Thanks everyone. It does help to be able to talk about it. The damage done by surgery and radiation has resulted in progressive brain atrophy. It's a long slow downhill process. Add in memory problems and the cognitve problems and the poor kid has been delt a very cruel blow. On the other hand pineal blastoma had no survivers at the time she was diagnosed. So far as we know she is the first.
 
You are in my prayers as well, Leni. I took care of may dad for several years toward the end for as long as I could. He became like a child again also so I know how trying it can be on your patience. God Bless you for being the wonderful parent that you are.
 
Leni, that is a tough situation and you get my respect for sticking by your daughter given the difficulty of the situation. I know my boss has a severely disabled late teen daughter at home only because he mentioned it in context of our company's dedication to working on supportive housing projects... he is very austere and it is rare for his shell to break but the honesty in his care about the issue was clear. Even though he and his wife care for their daughter at home he knows someday they won't be there. While I cannot claim to be able to really be able to put myself in your shoes I have been in the position where I needed "the system" to work for a loved one and do understand the struggle with things like insurance and assistance that many people often assume are available for those in need. On a separate note by cousin in her mid 20s was diagnosed with brain cancer last year. So far it seems the surgery was successful and she is now engaged to he BF who stuck with her through the ordeal. This took a large emotional toll on my family despite it's so far happy ending so I cannot imagine the challenges you face. Why some are so lucky and some are so challenged is something I will never understand. I myself was given a great pass yesterday when the ball joint on my car broke. While it is going to cost me $$$ I do not have to fix it is not lost on me that it happened on a local street just past a stop sign with no one behind me and that just minutes before I was crossing a bridge at high speed and if it had happened then injuries to myself or others would have been inevitable. I don't really know where I am going with this ramble other than to say there is no sense to what life throws at you but you daughter is blessed to have parents who care enough to worry about maintaining patience in this situation. My thoughts are with you.
 
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