To the Pay “Pal”…
(I’m sorry. Don’t know that that was my place to say Thanks. I just thought it was really neat.)
Me too. I can send a few dollars your way.
F.Pu, I actually have had some dealings with NAMI. Not many, but back when we lived in Greenville (back around 2003 maybe), is I’d gone to a support group of theirs. It was small, but do was the town. I’m assuming now that we’re in the Dallas area, they’d probably be more prolific. So thank you. I’ll look into it.
Thank you BaneSidhe. We really appreciate you.
Wow Clockwork Jackal! What a generous offer. Despite what I wrote earlier, I still don’t know what to say. However, I will PM you and say thank you, so very much. What a big heart you have.
Sierra Indigo, I see what you are saying. I don’t know why it seems so hard for me to keep that at the fore front of my mind. I’ll try harder, especially if it helps Jaceson by keeping me from biting his head off.
And I promise that I will tell whoever I talk to straight out, just like I am here, what’s going on. I think I’m done, for the moment, putting on a brave face and I just don’t want to shoulder all this alone. So yeah, straight talk will be how it goes. No matter what.
That support group you listed for chronic pain sufferers sounds ideal and at least they’re free. I’ll see if they are still meeting and put them on the calendar. Thank you again.
Miss Violaceous, we briefly talked to the person at the Social Security office and it’s complicated. She said we’d need to be able to provide documentation concerning my conditions and, to be honest, I have no idea how we’d come up with most of it.
The only things I know for sure is where and when I’ve been hospitalized, the last medications I took and my most recent therapist. Who all I’d seen for most of the past fifteen years and what all medications I’ve tried (which are tremendous in both counts), are lost. My husband had changed jobs several times over those years, so we can’t even go back through insurance records to try and figure it out.
Regardless, since I’ve now figured out that bare minimum, I’ll revisit the issue on our next visit. Maybe it’s an option. Thank you for the suggestion.
Becky, I hope I don’t miss any of your questions. You were very thorough.
Check on Department of Children and Families. Hopefully that’ll hook me up with some other services too and be able to help me with any paperwork, like you said.
Check on the notebook. That’s a wonderful idea, if just for this thread alone!
We asked about Medicaid when we were at the Social Security office, and I could’ve sworn they said we didn’t qualify. However, I’ll double check again.
As to the computer, we’ll still have my husband’s old one, plus my phone which, for now, has the Internet. So I’m not to the point of doing completely without. A good thing though, if we did have to forego having any, our local senior citizen center has free use and they’re never crowded. So there’s that. Now on to the car; we’ll still have my husband’s truck. There’s no way we could get him to all his various doctor’s appointments without a vehicle, so we won’t be without one.
Check on United Way, Elder Care and AARP. You’re right that we’re too young, but as has been mentioned repeatedly, they may be able to help, so I’ll give them a call too.
I have dealt with Suicide Prevention before. It wasn’t a very positive experience, but I realize the experience is only as good as the person helping you. I wouldn’t hesitate to call them again, but so far I haven’t felt quite seriously suicidal yet. Only as a passing thought, which given my track record, is pretty benign. But thanks for the reminder.
Good advice in dealing with the husband. I know I need to be more firm, but I’ve been putting it off because this all seems so dehumanizing and demoralizing to him anyway. We’ve already gotten into fights about me treating him like I’m his mother. < heavy sigh > But your right and I just need to step up and be more insistent and not take it personally when he reacts negatively. It’s just so sad for someone once so vital. 
Check on the cane. He’s agreed, as of last night, to do that. Yay for small victories!
Ah, my mother. I wish it was as simple as just not talking to her, but she’s the kind that inserts herself into the situation any way she can whether she’s wanted or not. If I don’t answer the phone, she’ll drive up here and camp out on my doorstep until I deal with her. Sadly for my life, it’s easier to handle her sporadic outbursts and negative moralizing, then to try and cut her off completely. I really can’t deal with an intervention at this point, so I’ll just quit bitching and ignore her.
Thank you for all your help and suggestions. You’re very wise and I’m grateful for you sharing that with me. Your input has been invaluable.
Nava, I’m not sure what a NPO is, but I’ll google it. I’ll also at the Red Cross to the list though, and see if I can find anything under “caretaker relief” in our area. Thank you.
I think that’s everything this round. Thank you all again. You are wonderful people, who I absolutely adore. May whatever Higher Power you believe in bless you. And if you’re a non- believer, may the fates smile on you.
Love,
Kemi~
Sunspace, thank you so much. I’ll PM you here in minute. Just give me a second to catch up. Thank you again.
NPO: Non for Profit Organization.
If you live in Texas, start here:
I wish you were near me. It would be my pleasure to take you out for a special day while my husband keeps yours company for a few hours. But since I can’t do that, I’d be very happy to help with a small gift card at a grocery store or drug store if you prefer.
PM me with a mailing address if you would like to accept my offer **Faithfool. **
I’m sorry for your situation…
BMalion, I’m sorry for your situation as well. If there is ever anything an old lady in California can do to help, please don’t hesitate to ask.
Faithfool, I think you’re looking at this backwards. If he’s feeling helpless and infantalized, then allowing him to be nasty to you without consequences is just perpetuating that. Pain is exhausting and crabby-making, I know, but adults control their tempers or apologize for their lapses. Show him that you think of him as an adult.
Paradoxically, I suspect it would make him feel better to have to take more responsibility. He may not be able to do much, but it’s a far better feeling to get to the end of the day exhausted because you pushed your limits (however meager they may be) than exhausted because you spent the whole day watching TV on the couch. Also, forcing him to start making decisions about his own healthcare will probably reduce some of the helplessness and depression.
(Why is he not taking his meds? If he can sit in front of the TV, why can’t he sit in front of the computer and work on finding resources to help you both, or at least compare different types of canes/crutches/walkers to use?)
I’m not saying you shouldn’t help him - he obviously needs a lot of help right now - but let it come more from him. Wait for him to ask for help. You probably think it’s embarrassing for him to have to ask, but I’m willing to bet that it will feel better in the long run for him to ask a partner for a hand than for him to have passively allowed you to treat him like an ailing child.
Thank you! I used to live in Burbank, where are you?
Thanks Nava!
Wonderful, more to add to the list. Thank you Lurker!
not what you’d expect, I PM’d you (of course, with the wrong name attached – as I explained, I had multiple tabs open and was trying to keep everything straight, I just apparently sucked at it – I’m so sorry!) and wanted to tell you here how much I appreciate your offer. Every little bit helps and I’m extremely grateful that you’re thinking of us. Just like all the others, you rock.
mischievous, you’re right too. I just hadn’t thought of it that way and had been feeling so sorry for him that I couldn’t get past that. I’ll certainly try to not infantilize him. As for him not taking his meds, it’s only one prescription (the one that prevents the terrifying [to me anyway, he never remembers anything] Hepatic Encephalopathy) that he waffles on. Everything else is, thank God, like clockwork. And about sitting in the recliner? It’s the only thing that doesn’t seem to put pressure on the area of his back that’s killing him most (something about the Degenerative Disk Disease complicated by the fusion he had from the surgery), however, he definitely could be using the computer just as well as I even from that position. I think it’s time he started taking more control back and empowering himself. Thank you for that perspective. It may take me some work, but we’ll get him (us) there.
Last, I’d like to say that I’m sorry for my signature constantly popping up over and over again in this thread. Since I read and post on my phone, I don’t see it and had no idea it would automatically do that, as it gives no option for opt-in or out. So I just deleted the damn thing so everyone one have to keep looking at it. I’m absolutely amazed I haven’t been pitted for that thus far.
Also, I’m sorry I no longer bold usernames. I know this isn’t a big deal to some folks, but I always liked doing it and felt it was my way of showing respect. Sadly, I haven’t figured out a way to do that on my phone yet, so for at least the time being (and since my laptop will be going away) that’s how I’ll have to do it. 
I hope I got everyone when I was sending out PMs. If I missed you somehow, or haven’t gotten back in touch with you yet, I will. It’s just we have to catch up on some stuff around the house before the interminable amount of doctor’s visits and phone calls must start next week. I promise I will get to everyone over the next couple of days. Thanks to all who wrote and thank you to those who sent me PMs who haven’t posted in this thread. All of you are special to me and I am grateful for each and every one of you. The money is wonderful, and a lifesaver, but it’s the offers of help, support, sacrifice, love and support that means the most. You guys are the absolute best.
Thank you again.
Love,
Kemi and Jaceson
I do it manually on my phone - type [ b ] to start the bold and [ /b ] to end it, without the spaces in there.
He doesn’t like taking his lactulose I’m guessing? A lot of people dislike that one because the way it works is by causing a lot of diarrhea. Might be a good idea to talk to the doctor who prescribed it about that and see if they think it might be worthwhile to try a decreased dose so he’ll at least take it, rather than none at all, or if they have ideas on how to cope with the diarrhea.
We are in El Dorado. East of Sacramento. Very small town. I could not handle LA or Burbank, I don’t think. Those freeways scare me half to death!
My goodness! Why didn’t I think of that? Thank you so much. I’ve even already put it into use.
Yes, it’s Lactulose (or actually, it’s generic equivalent, Generlac) and for exactly the reason you said, plus bloating and cramping. However, I have good news to report. Since we’d had another discussion about it, he’s agreed to take it no matter what. We’ll be talking to the doctor this week about at least cutting down on the regularity with which he has to take it. So thank you.
I remember when you told us it looked like you had MS. Did things get so bad, so quickly that they had to let you go? Did they “fire” you so you could collect unemployment?
Didn’t realize you are alone. Please, you and/or failfool, PM me anytime you may want. Don’t have to, just if you want. I know how much it means to me to come to the Dope and whether I’m being “talky” or not it feels like a group of old friends.
I am sorry to hear your news. Nothing I can say will make it better, so I’ll just say that you are in my thoughts.
.
Me too! whenever I visit my old friends, when we drive somewhere I’m scared half to death. I ain’t missing the traffic.
Yes, they fired me right before I was diagnosed. I’m dealing with it.
faithfool (I tried to Bold your name, just like in my reply to BMalion, but it didn’t work then. Maybe now.)
Anyway, about the Medicaid. Since we’re in the FL panhandle and you’re in Texas things might be different. But my brother was 53 years old when he got it. (After a lifetime of being alright.) Can’t remember which came first…the Disability or the Medicaid. And his coverage was called something snappy like “Easy Pass or Quick Pay.” Vernacular like that. And I talked to a young woman in her 20s who got Medicaid…so maybe there’s a way? Maybe not, but if you add checking on it once again to your list of many things to do, it might work out.
I was wondering if your husband has slight dementia, like from a build-up of toxins? My brother had it and took 10mg of Aricept. They said it was for memory. Whatever it was I could really tell a difference the few times we couldn’t get it refilled immediately.
Good about the cane!
Please PM me IF you want. I hesitate to say that; you’re swamped right now and I don’t want you to feel obligated. But I’m around if you ever get the urge. Hang in there.
Hugz
faithfool, I can’t even imagine what you and Jaceson are going through right now. I know if my normally loving husband turned into Mr. Hyde, I would be very hurt, resentful, angry, and probably hostile right back.
I’ve been following your story here on the boards and just want to help a little.
You’ve gotten a lot of good advice in this thread and I can’t add to the fray. However, I would like to make a contribution to the “cause”. Please send me your Paypal info via PM.