roberta Posted November 30, 2009 Report Share Posted November 30, 2009 Hi everyone, I just came accross this challenge from Quilters Dream. http://www.quiltersdreambatting.com/HD/ALS.htm I thought I would post it here because you are all such a loving group of quilters. Also because this cause is very close to my heart. My mom has ALS. She started having symptoms June 2008 and was diagnosed in December. In that short amount of time she has lost the ability to speak and eat and has lost 80 lbs. She is now almost completely paralyzed and I am having to make the horrible decision to put her in a nursing home. One reason I am not that active and don't have alot of time to quilt is because I manage the care of her and my dad. It is such a devasting and heartbreaking disease. One that has no treatment and one I can't do anything about.. but maybe this . What a wonderful way to raise awareness and bring a little warmth and love to those who are suffering. Thanks for taking a look. Link to comment Share on other sites More sharing options...
appr216 Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta, So sorry to hear about your Mom. ALS is a heart breaking disease. Thoughts and prayers for you and your family. Link to comment Share on other sites More sharing options...
Bonnie Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta...so good to hear from you again. You have been on my mind and have wondered where you were with this. Blessings to you and your parents. AND yes, I will get something together and play...a small quilt like they are asking for in an easy do and will see if I can't even get a few of my own family members who quilt to also join in. ALS runs in my DH's family and I fear that someday I too will be where you are, and if there is a chance to do anything to help others, I am all over it. Hugs to you and your mom.... Link to comment Share on other sites More sharing options...
quiltermidwife Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta I was saddened to hear of you and your family's struggle with ALS. What more worthy cause for quilt making. I hope it proves to be fruitful and raises plenty for this obviously needy cause. Link to comment Share on other sites More sharing options...
Primitive1 Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta, Your family will be in my thoughts and prayers during this difficult time... Link to comment Share on other sites More sharing options...
Quilting Heidi Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta I'm so sorry about your mom's condition and I'm sure it is heart breaking. Just know that if you choose to put her in a nursing home you should not beat yourself up. You are protecting her from herself and they know how to deal with people in this situtation. It is not a reflection of your lack of caring or love! (((((((((((((((((((((hugs))))))))))))))) to you and know that we are always here if you just need to vent! Praying for a cure! Link to comment Share on other sites More sharing options...
JudyLynn Posted November 30, 2009 Report Share Posted November 30, 2009 Roberta, I am so sorry to hear about your mom. I helped take care of an older lady who had ALS. She was able to stay in her own home. I was lucky, she kept her sense of humor, and she actually was a joy to check on. Somedays it was 4=5 times. She would call in the middle of the night, altho she could not speak, she would let me know she was having a problem. I would run over to her house and see what she was worried about. When she decided she did not want to be here any longer, she took her oxygen off and was gone within an hour. She was fully aware of what she was doing. She made her choices. She was a very strong willed lady. She had a ton of money and a house full of antiques and a family that showed up after she passed away- they lived 4 hours away, they were here in 5. Did not visit her. I have a few words for them==you can guess what they are. Anyway with all that she had, I never took a dime from her. I feel there are just some things you do because you are suppose to. Before she passed, she gave me her most prized possesions--her many, many cookbooks. Still have them all. her family would have just thrown them away. The time I spent with her are memories that I hold very dear, I learned alot from her. I admire you for what you are doing. I know how much work it is. I hope you have some help because you still need to take time for you. You will be in my thoughts and prayers. And will check out this website. Also we have a man here where I live just diagnoised with ALS. His mother is someone I just love. I would like to help somehow and since quilting is my thing, that is what I will do to help. Link to comment Share on other sites More sharing options...
roberta Posted November 30, 2009 Author Report Share Posted November 30, 2009 Thank you everyone! Your are all so kind and supportive!!! Bonnie - I hope you never have to be in my shoes! I am hoping that someday they might find something that can help people with this disease. If Lord forbid, you are ever in my shoes, you know I will be here for you to help you in any way I can. Heidi - thank you. Now how did you know what I was thinking? I have been doing everything humanly possible to avoid nursing homes. I have the unfortunate situation where I can't hire professional home health care because my mom has a feeding tube and the state regulates against it. I do have private people who are helping me but a couple of them are becoming unreliable and I am afraid of falls and such. I might have already taken her to a nursing home but because she can't communicate or move her fingers to push a button I have even worse fears. I will keep your words in mind because they really help. JudyLynn - you are a special person and your friend was very lucky to have you! A gem you are. I hope your recently diagnosed friend has a slow progression and help is found in time. I know they are doing some interesting stem cell research in Europe. --- I have to say that I thought this a terrific thing for Quilters Dream to do. It makes me feel like I can do a little something and it will get me into my sewing room again which is really good therapy. Maybe I should finally take the time to learn my EQ6 software so I can even design a quilt, now wouldn't that be fun. Link to comment Share on other sites More sharing options...
RitaR Posted December 1, 2009 Report Share Posted December 1, 2009 Roberta, hearing your Mother has ALS just makes my heart Hurt. Prayers for your strength, peace of mind and heart, and may your Mom and Dad understand your decision. It often comes to be, whether we want it or not. Prayers and hugs will go up as long as needed... rita$R Link to comment Share on other sites More sharing options...
Stagecl Posted December 1, 2009 Report Share Posted December 1, 2009 Roberta, My thoughts and prayers are with you and your family. Link to comment Share on other sites More sharing options...
MarieBrewer Posted December 1, 2009 Report Share Posted December 1, 2009 Roberta, my DML has been diagnosed w/ ALS and also has Parkinsons. The progression is beginning to be more rapid. She is so crabby now because she knows she can't remember things. She is especially mean to DFL who is pretty good. We were told to put her on the list for assisted living. Dad is managing her care right now but is getting tired of being beaten down. I know the road can be long but I pray that the Lord will take her b/4 all of her dignity is gone. She is a proper lady!! Link to comment Share on other sites More sharing options...
roberta Posted December 1, 2009 Author Report Share Posted December 1, 2009 Thanks again everyone! For now I have worked it out so she can still stay home, but that may change at any moment. Its a day by day thing. Marie, I feel for you and your family and totally understand how you and your il's feel. Sometimes it is better to go sooner than later. My dad has had parkinsons for over 10 years and has been progressing this year. It is tragic to have 2 people with such awful neurolical diseases at the same time. Even more tragic for one person to have both at the same time. My prayers and thoughts are with you all. Link to comment Share on other sites More sharing options...
jclark Posted December 1, 2009 Report Share Posted December 1, 2009 Roberta: My thoughts and prayers are with you and your family. A young woman (40) here in our community that my husband considers his stepdaughter although he is no longer married to her mother has ALS. She was diagnosed last winter and the disease is progressing rapidly--she can no longer walk unassisted and her speech is very hard to understand. She has two young children and my heart breaks for her. I will be thinking of you as you make these difficult decisions. Link to comment Share on other sites More sharing options...
Sandra Darlington Posted December 2, 2009 Report Share Posted December 2, 2009 I am so sorry, too. I will say prayers for your continued strength and prayers for your Mom and Dad. I had a girlfriend who passed away about a year ago from ALS. How horrible to see someone go from a vibrant, energetic person, to the death that followed less than a year from her diagnosis. Link to comment Share on other sites More sharing options...
fabric007 Posted December 2, 2009 Report Share Posted December 2, 2009 My dad passed away 3 years ago from als....the nursing home was our only choice...my mom was haaving triple heart by pass so its what we did...If you can find a hospice place you would be better off..nursing homes in our area are not equipped to deal with the things they need..things as simple as a call light...another thing for anyone out there is .if you were in the service at anytime and have gotten this disease...you are due from the government..or in our case our mom is getting a monthly benefit from them.....the best to you and your family Link to comment Share on other sites More sharing options...
roberta Posted December 2, 2009 Author Report Share Posted December 2, 2009 Als is a terrible disease. I am continually surprised by how many people have been touched by it. I am sorry to hear how many of you have lost someone to this disease. Thank you for your thoughts and advice. I appreciate it. I am meeting with the hospice admittance nurse tomorrow at my parents house. I am crossing my fingers that they will be able to help. Like Fabric007, our nursing homes aren't equiped either. My mom wouldn't even be able to push a button to call for help, so hopefully we can keep her home. We don't have places of hospice here, they go to you. I think I have my pattern picked out for the quilt. I will post pictures when I get it completed. It probably won't be until spring though. Link to comment Share on other sites More sharing options...
Quilting Heidi Posted December 3, 2009 Report Share Posted December 3, 2009 Roberta, I'll say an extra prayer for you tonight! Hugs to you and I know this is such a difficult thing to go through. (((((((((((((((((hugs))))))))))))))))))))))))))))) Link to comment Share on other sites More sharing options...
Linda G. Craig Posted December 3, 2009 Report Share Posted December 3, 2009 Oh Roberta, I'm so sorry to hear of your parents illnesses. How devastating for you and your family. It doesn't matter how old our parents are, they just aren't supposed get sick, are they. Please know that my heart goes out to you and your family and I will most certainly send prayers your way. I agree 100% with Heidi, you do what you have to do, and there is absolutely no reason to beat yourself up over it. I know it's a hard decision and I know how upsetting it will be, but you have to look after yourself too in order to look after your mom and dad. If you are worn down to a frazzle you won't be able to do what you want to do for them. Take a breath, feel all the hugs from here, and know you can come back here for love and encouragement any time of the day or night. Prayers Always............ Link to comment Share on other sites More sharing options...
VictoriaG Posted December 4, 2009 Report Share Posted December 4, 2009 Roberta, I will keep you and your family in my prayers. My father had ALS and it is difficult for the one who has it along with the family. We found hospice to be a great resource for information. Victoria G Link to comment Share on other sites More sharing options...
LinneaMarie Posted December 4, 2009 Report Share Posted December 4, 2009 I am so sorry! Hugs and loves and prayers and good vibes comin to ya! Kiss, kiss, hug, hug Link to comment Share on other sites More sharing options...
roberta Posted December 5, 2009 Author Report Share Posted December 5, 2009 Thanks for all your good thoughts, prayers, well wishes, kisses, hugs, and advice. Much appreciated! I was able to get my mom on hospice today so I am hoping she will be alot more comfortable and we can keep her at home. Thanks again. You guys rock! Link to comment Share on other sites More sharing options...
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