Barbie

Do you guys have a joint birthday event? I am 1 month & 10 days older than Tim and we are soon to be 54. I think being a scorpio makes us stubborn, which for this time in our lives is a good thing.

Hi Barbie, not only do we grieve for our loved one but I know I grieve for my life that use to be. You are right we give of ourselves out of love but don't get anything in return. My husband is so miserable in his life. If you call it a life. He is on a vent, bedridden, peg and is having issues with speech. He is a prisoner in his body. You sound like me. Whenever I think about myself I become guilt ridden. I went out Friday for the first time in a month. I finally did something for me and as much as I hate to say it -it felt good. You and the other CALS that have done this job for so long are my heroes. How have you done this for so long? I'm exhausted both mentally and physically. I have a CNA that comes 2 hrs on Mon,wed and Fri. My sister comes over and helps me pull him up in the bed. Other than that I'm on my own.

Hey how r u today hope u had a good evening. I had a low grade fever but feel better today

My name is Debbie and I am also my husbands caregiver. I read one of your post and it really hit home. I also want this to end but can't imagine my life without him. I am so glad I found this site. There are so many people going through the same thing. So much caring and wisdom. I know this will be beneficial to me.

My mom doctor is referring her to hospice again to c if this time thwy will accept her. If they do they will come here. My mom is in pain and I give her tylenol with codine three times a day now. She doesnt have a dnr.

Hi can I ask u is ur husband on a vent does he speak. I started seeing a therapist I told her that I think im bipolar bit she doesnt agree I am extremely depressed my mom weighs about 60 pounds she is locked in no movement just eyes and sometimes she doesn't respond to questions. I think about death so much I fear my kids finding her dead in the morning. I used to think that my kids father was my best friend and even though we live in separate homes I really thought I could count on him but he got tired of this situation and I guess I cant blame him. I dony talk to my friends anymore since they dont understand what im living and I dont want to hear about their lives. I feel so much better hearing from people on this website lately this site is my only way of communication

Just wanted to let u know how much I appreciate u responding to my posts. I value your wisdom, experience, and empathy. I don't know how u have remained strong for so long. Thanks for caring, Trina

Hi there I read ur post about dental care and was curious did you find out an als patient can have dental care from a dentist in the home. I been curious and always forget to ask. How r u and ur family doing? As for me im ok started to c a therapist once a week I told her I think im bipolar and she says she thinks its just depression. My mom's condition is pretty bad I think this must be last stages als because I cant imagine it getting any worst.. im so glad I found this website and that I finally became a member. When ever I think I have it bad I read other caregivers who have less help then I do and I feel that I am blessed to have my children who help meanyway they can. I promise them one day im gonna take them on a wonderful vacation

Wow 1000 posts, quite a milestone.

Wanted to ask if the National Geographic Genome project test kit is worth the 200 bucks? Did you get good results?

Thanks,
BOB

Barbie, you have a beautiful family. Tim and I love the albums. I see there is a hot tub in the background of one, and wondered if your husband still uses it. I am thinking it would be something we would like to get, so that Tim can sit in the jets, and exercise what ever he can still move. The community pool is too cold, and there is neither a ramp or a lift to get him into it with.
Paulette

Barbie, I posted a thread 2 days ago about a fifty mile run for als awareness my nefew is doing in Dec so people could share it if they wished. I mean he is really running for all of us. It hasn't been posted?being moderated I guess but 2 days?? who do I contact? who is a mod around here? thanks meg

Thanks Barbie for the info. I'll check into it. I do have a regular counselor that I see about some other stuff and we also discuss dad having ALS. She understands a little about ALS since her next door neighbor has it. Take care, Kim

Thanks for your suggestions. He has a recliner that he loves to read in and his PWC is coming this week. PALS have to suffer so much all the time. Hope things are going well for you and thanks again.

Barbie, Jim said that he is noticing that it is getting harder to hold himself up when sitting at desk or dining table. His upper body is getting weaker. Is there anything that we can do to help him? between that and his back, he is pretty miserable. His PWC should be coming pretty soon.

Good to hear from you. Did you see the crap that Nicky left on my wall? Apparently, I'm wicked. Sigh. My favourites are Dr. Bluedog ( I gave him a title cuz he's earned it) and the Wimbledon kid! I needed a good laugh today.... One of those days. But tomorrow is a new day! Right?