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PamB

Member
Joined
Nov 10, 2006
Messages
10
Reason
PALS
Country
US
State
Medina
City
991 Bayberry Dr
Hi, my name is PamB and I have a sister is who has ALS. I was her only care giver for the past 100 days and now she is visiting her two daughters in California. I have been visiting the site for a couple of months and now I have just gotten the time to write to all of you. You have given me support even though I haven't been able to express what I have been feeling and I have gotten some very good ideas on how to help my sister. She was diagnosised about in Oct of last year and at that time she just had weakness in one of her arms, now a year later she has no use of either arm and has lost most of the use of her legs in the past month. I have a wheel chair on order and it should be delieved to her in CA, which I feel will be not a moment too soon. She will see new specialists out there for the time being. I live in Ohio and she lives in Conn. So I have been away from my family for quite a while this summer and fall. I miss her terribly, but she wanted to go to see her new grandbaby and daughters that live out there and so she is wanting to stay for the winter. I hope and pray she gets her wish to stay for the holidays.

I would just like to say to all of you that you all have great courage. I would not trade a moment of time that I was with my sister, we laughed and cried and just spent time. Please know that it is so easy to care for someone that you truely love. I am not saying that one doesn't get stress or tired, but I would do it all over in a minute. ( and I probably will when she goes back to Conn) She is on Hospice now in California, they put her on it right away. I was really surprised, but the extra services are wonderful for my neices. And my sister seems ok with it. Her voice was getting very labored when she was at home and now even more so. She sounds very tired, and it is so hard for me to listen and not be there to help. My neices are doing the best they can but they have 3 kids in the house ( two under the age of 1) and a 6 year old. I am so worried that they will not have enough energy for all concerned. But I feel it is so important that she be with them to share this time, I am just hoping that it is valued as it should be. I am rambling, but I love them all, especially my sister who is my very best friend.

Anyway, I have great support here in Ohio, Connecticut seem to have great services, I couldn't say enough about the VNA that came once a week and we had a wonder woman who helped 5 days a week at the end of Oct.

God Bless all of you
PamB
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pam and welcome to the site. It is so nice to hear a story of love and complete giving from a family such as yours. Your sister is a very lucky lady having you all. Don't be afraid to ramble here. This is a support group and we each have good days and bad days and days where we just need to get things off our chest. We live it so we understand. Take care. AL.
 
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