Who looks for a 35+ year old man who has no redeeming quality?
J., you know I think very highly of you ... but ... this statement ... it makes me wanna smack you in the back of the head.
Believe me, I know how dark and desolate life can look from within a depression, and why someone as generous, thoughtful, decent, eloquent, funny, and, yes, loving, as you might make a statement like this. I really do understand where it's coming from.
But it's categorically false and if I do need to smack you upside the head to convince you of it ... well, then ...
*smack*
(and *hugs* because while I've not had to deal with what you're dealing with, I've known the abject feelings of hopelessness your statement conveys, and I know that, no matter how irrational I knew those thoughts and feelings to be - I just couldn't help having them. You certainly deserve better and I truly hope - and believe - that, one day, you *will* find your redemption).
Thank you. *hugs*
I know I tend to be very hard on myself, I always have been. Nothing was ever good enough. I still feel the same way today, but I'm too exhausted to chastise myself.
I don't know where it came from, though. I used to have these feelings, when I was little, that I didn't deserve to eat, or that having a warm blanket was something that someone like me shouldn't have had. Maybe it was because we were so poor, and at times homeless, that I just didn't understand why anyone would want to spend any of their resources on someone like me. It wasn't something that my parents said or did, it's just something I believed, and still do to an extent.
I'll try the shame approach, I will. That said, I expect nothing of it, because my family doesn't possess the quality of having shame. Still, it's worth a shot.
So when I take calls, we have this model that we follow but I think that it works well in other situations as well. We ask questions about options and come up with them, which we've done a bit in this thread. Do you think you want to try any of them? What do your next steps look like?
Kes, I'll answer your question with
teacake's below, as to keep the answer all in one place.
Have you looked at the state run assisted care facilities? People are almost universally negative when initially presented with the idea of moving a loved one out of their home and into fulltime care. But we don't always see the positives and I'm not talking about to the caregivers but to the patient. Once you are in the system a lot of programs become available, often onsite, that are expensive and difficult to access as an individual. Here's some things off the top of my head, I'm sure people who work in the field can chime in.
Physiotherapy. If you are in a care facility this is going to be provided as a part of the care. Sure it would be better to have private physiotherapy and you might say "but someone just comes by once a week, doesn't seem very effective.." but it's still a part of baseline care that you will get in the most basic care facility.
Outings. I have known people whose lives have been amazingly changed to get to go on outings and it's all because a care facility has wheelchair vans and programs to take people places. This would be prohibitively expensive to do as an individual but you get a care facility with a couple vans and a recreation program and suddenly a homebound person can go out and do things. I don't know if your mom gets to go out much but since you say you are home almost 24 hours a day I assume not. It can be very important for a person's overall physical and mental health to have outings to look forward to every month.
Meals. If you haven't got a lot of money even care facility food can be an improvement. Sometimes people really enjoy the change too and of course nothing is stopping family from bringing in favorite meals when they want to.
Access to medical care and specialists as needed. The crisis that can happen when a homebound person suddenly gets much worse or even ends up with a regular flu or gastro is removed from your shoulders when that person is already in a care facility. It's peace of mind, you know that not just one but many medically trained professionals will be monitoring your loved ones condition.
Social life. Can't emphasize this enough. Being homebound is terrible for anyone and even if you have regular visitors of friends and relatives (which it seems is not your situation) your world becomes very small. In a care facility there are other patients to take you out of yourself, chat to, there are visitors and programs being run with recreation people coming in, there's a whole wider world. This is just plain good for people and something that many folk don't realize is needed until they have access to it and their world is suddenly more stimulating.
**
You say that if she went into such a place "the final indignity would kill her". It doesn't have to be an indignity, and it doesn't help if other people present it that way to her (not saying you would be doing this). Resistance to leaving the home when elderly or disabled is pretty much universal. And it's a painful and difficult thing to do, but what's not often seen until you get there is the benefits and how it can improve one's life.
And the thing is everything you do for your mom would still be doable, maybe even more doable, in the situation of her being in a care facility. You could sit with her every single day, bring her food, watch tv with her.. you could be as attentive as you wished. But you could also say goodnight and know she was in good hands, go off to whatever aspect of life you had planned for the evening for yourself. In a care facility if you wanted to take your mom out for a walk you'd have other people to help get her ready, you'd have some grounds to walk around in if it wasn't practical to go far. You'd have access to wheelchairs. In other words it would be easier to do things with your mom, and if you had your own life you would be enthused, refreshed and being able to give to her would be much less of a burden.
Please don't write this option off without really investigating it. People believe a lot of stuff about how bad it is to go "into a home" because that's a meme we hear all the time, but it's not based on the full picture.
I'm damned if I do, damned if I don't, and doubly damned the longer I take to decide, so I just keep doing. It's a good plan, on your part, it really is, but it relies on our family giving a damn, and they just don't. That's why I'm still here after all of these years. It's killing me, but the alternative is that it kills her, and that's just unacceptable. I realize I can't win in such a situation, but if I'm going down, I'm doing it with my principles intact.
I really think there is no need for it to be all or nothing. ALL you or DEATH may be how it seems in your mind because that's the way it's been for so long but the time has come to demand and explore alternatives. Whether that's an assisted care facility or some way of nailing down relatives or begging for volunteers a couple days a week through charities or church groups it is in the best interests of both your mom and yourself to say that things are now going to change.
I did contact my family, and stopped being nice about it. I put everything in it, explained exactly why I need the help, and that out of sight, out of mind was no excuse to abandon their sister/aunt. I reminded them of all the things she has done for them in the past, and even what I had done for them in the past, in an effort to flat out shame them for their selfishness regarding her health. I didn't sugarcoat anything, and I told them I didn't just need help, that it was the difference between life and death for her, and that I simply could not keep doing it, that it was killing me.
So far the responses have ranged from silence, to "I'd help if I could, but see...", which is what I expected from them, though I haven't heard back from everyone yet. I'm hoping it got through to some of them.
Regarding the nursing home benefits, I agree with the concept behind it all, and the knowledge that she would get good care, but she won't go, and dad has already promised (and I did too, years ago, before this ever got to the point it is now) that he would never put her in a nursing care facility, even if she could get in.
My preferred option is to get her into a PT rehab center, where people go in, stay a number of weeks, and the rehab people get her up and walking, which would solve just about everything in one fell swoop. Of course, they're more expensive, and it's harder to get insurance to cover them (especially mom and dad's insurance), but that's where I have been aiming. She's receptive to that, but a nursing home? When I said the indignity would kill her, I meant that she would lose all hope and will. She has some
serious issues with nursing homes, ones involving what happened to her father and her mother, so on nursing homes I have no room to budge. She would flat out refuse, and I can't blame her. The ones around here have some very sketchy to downright awful track records.
So unless the family comes through, I've got the rest of my chips on these rehab centers, hoping that I can finally get her into one. Of course, this has been ongoing for some time, and I have tried many times with no positive result, but I keep trying. One of these days, our insurance provider will have an acid trip, or an aneurysm, and approve her application for one of these facilities, and she'll finally get the PT/OT therapy she desperately needs.
This would have been so much easier under a single payer system. She would have had her therapy years ago, and I would have been living my life. Go USA.
I guess I just don't understand why my family has to be full of self-serving assholes. They could have got together, and helped her into such a PT/OT facility, or they could have come over every week and helped me cook and clean. They could have given her the support she needed to get back on her feet, but they didn't. Selfish family, mom's under the age to where she can receive help from the state/federal government, and we just don't have the money. It feels like a perfect storm for a shitty situation.