Why move forward? Non Western treatments?

[Cary1340]

I have always been fiercely independent, I was just diagnosed with ALS, I fought it every step of the way. Was sure it was something else.

I don't know how I feel, I've never been impressed with life in my 64 years but I know I have had fun. I've lost six significant others to various diseases and finally found one who makes my heart happier than I've ever been. Everyone who sees us together, even strangers say they can see how much he loves me. He is a singer songwriter and should be famous, but he has a severe mental health issue which prevents him from being able to make serious money at it, so he has always been very poor living on a thread of disability. I retired early and he moved in with me, the original plan was to travel and make music all around the country. I own my home but there is very little music here in this small county so we were also planned to move closer to where he can have an opportunity to thrive.

I had to take my son off life support in February and my brother passed away in September. Extended family is not really in my life for the most part though they do try to provide advice which only applies to their circumstances. I have no one to leave my limited assets to except my boyfriend and his mental illness is overwhelming for him taking care of me, it is a serious invisible illness.

I feel as if I am rapidly deteriorating and my BF is doing the best he can but it is clearly difficult on him trying to take care of me, he is suggesting that I get a live in caregiver to take care of me and he will visit when he can. Honestly that is so far from what I need and it makes me just want to stop everything in life , what is the point, I don't want to just be here with people I don't like or care about who just are being paid to take care of me.

I will leave everything I have to my BF because no one else in my life needs them and even if he does leave, I want him to be taken care of.

I do want to try some non traditional, non western therapies, that my few limited friends I did let into my life know about, they have their own lives and can't really take care of me but I am not sure that is even worth it since the only thing good in my life can't handle being in my life.

THIS SUCKS

Thanks for letting me vent.

 

[JohnnyMags]

You sound so dejected and I am sort of experiencing that myself.

First and foremost I hope you are not entertaining thoughts of hurting yourself. I know it's hard but you have to try to find positive things that are worth living for. My wife tends to ignore what's best for her ... Don't do that. You need to share what is troubling you and follow the advice you get whether it be from friends or medical professionals. Your boy friend sounds like a good guy and that's a positive right there. Don't concern yourself with feeling what he is doing is too much for him. I think he will tell you if it's too much. My wife often tells me she's a burden because I am doing so much but the fact is we do it out of love and it provides a sense of helping when we are feeling like we can't do enough.
I hope you get additional support from friends and people on this forum. We were all dealt a bad hand of cards but don't you let this beat you.

 

[lgelb]

Cary, I'm sorry to hear of the diagnosis that has added to all your recent trauma. I would be cautious about supplements and nontraditional therapies, as some do more harm than good. If you ever want to post anything you are considering here, we can usually point you to whatever evidence there is for or against.

I wouldn't jump to the conclusion that paid caregivers would be people that you don't like or care about. There is a large pool of people out there, many of whom are, well, real people. Though not to the extent that you may need, we used a lot of pre-nursing students for extra help/social contact, most of whom had zero prior experience so they were not jaded pros. (Nothing wrong with pros, but you see where I'm going here). If you start with one, you can build up to a pool and more hours that they can swap among themselves.

Given your circumstances, I would advise hiring yourself, rather than through an agency, if possible.

Your boyfriend is, I'm sure, still coming to terms with the reality as best he can. He may come around to being more around when he has a chance to process. Or he may be in and out. But it's too soon to know for sure.

If you are still able to move to the kind of place you envisioned, you may still be able to do that? That might give your boyfriend more peace/space to create? It might be something to discuss. A wheelchair-accessible home or apartment in an area large enough to have a pool of potential caregivers in commuting distance, and resources for your boyfriend, would be the goal anywhere anyway. It is not unusual to move soon after diagnosis. We moved to the opposite coast.

You're right -- it sucks. But there is life after diagnosis, though often a moving target, day by day. There are probably some things you want to accomplish, like solidifying an "afterwards" safety net for your boyfriend whether you move or not. Like any other goal, the more time you can put against it, the more you will leave behind.