I'm not sure if I am sending this correctly, there is certainly a lot to navigate here and I am not tech. savvy! I don't even have a facebook account Anyway, although I am not happy why I am here, I am very glad that I am able to talk with people going through the same thing. My husband is wonderful but it's his mother who has ALS and he can't talk as openly about these things.
If you ever want to just call me, you can. I don't know if that is kind of against forum rules or not, but these are big things to share and sometimes it is just as easy to talk about via phone. I know that I wish I had more people to talk to. If you decide that would be a good idea, I will give you my phone number.
I want to let you know the nursing home was a disaster. We had mom in one for 2 weeks. She was force fed through a bolus, which she can't anymore because of the slowed digestion. They held her down b/c she was trying with her one good arm to stop them and they told her that she was going to make them spill the food. So then she started kicking. They held her legs. They treated her like she was out of it. She went into he hospital b/c no BM for two weeks and not peeing for 2 days. She refused to return. I agreed. We got Hospice on board thinking they would be able to help. But they can only do so much. We put her in a different nursing home last week.Disaster. She is just left to drool on herself. We meet with Hospice tomorrow to discuss how she can return home with more help. I have spent the last three weeks more stressed out and running on empty than I did when she was at home. I don't know what other feedback has been but this has been horrible.
Nice pictures! Very nice gardens and cute pets. Nothing like an animal to take your mind off your troubles, if just for a while. You girls are so young, it's too bad that you're having to go through this....again!
I see you have 17 posts in now. That gives you enough to request PMing. If you don't see how to do it in your User CP, you can send David (our administrator) a visitors message and ask for privileges.
I've been reading your posts and I can feel your pain. This is so hard for everyone involved, especially the caregivers. I used to think the PALS had it worse, but I'm not sure about anymore.
Take Barbie's advice and get some help. Not only outside help for him, but also help for yourself. I followed her suggestion and started taking some anti-depressants, and OMG! The difference is incredible, believe me! Do it, and do it soon, you'll be so glad you did, I promise.
Thank you, I think you and your sister have angel wings too . Its nice to know (although sad you have to go through it) that there are younger people caregiving too, who understand. I am so happy you have a decent aid. These days it seems like people become less and less personable! You will have to be very assertive in order to get your stepfather what he needs. This is draining but he must be so grateful to have you. I hope you get some time for yourself and please keep me updated!
Thanks, we did ditch her and got a new aid so the situation has been resolved but clearly I am still bitter about it and needed to get the experience off my chest lol. I hope things are going along okay for you and your brother, you are about my age, I am 29 and my sister is 20, we split caregiving duties for my stepfather as well, I don't imagine it is easy at any age but still tough as a young person to put your whole life on hold to care for someone else, you both have angel wings in my book
Thanks for your comment. I was so hurt for you all by your experience with your aid. She sounds terrible. I would call and report what is going on and request someone else (who is not seriously lacking compassion) to come over instead. My mom often cancels showers with her aid and instead of acting annoyed she asks if she can do anything else or if she would prefer a quick sponge bath/ wash up. This person is coming into YOUR HOME, they need to be respectful. Do not be afraid to call, if they aren't a good fit it is on the company not you. Thats the last thing you need! I hope things get better. I am sending positive thoughts! Please update me!