Hi everyone, this is my first post, I hope I'll be able to contribute here, but I'll start with looking for help.
So my mother has lumbar onset ALS, pretty advanced now, she's basically complete dependent on other people. Those people are me, and her 90 yo mother.
My mom also has depression and few other health issues, but the ALS is obviously the most impactful. She, however (and understandably) doesn't want to die, to the point of not wanting to make any changes to the house, like some small remodeling, getting a nice electric bed, or anything like that. She believes that getting such items is "succumbing to the illness" and as she's heavily religious, she considers that to be proof of not believing in the miracle that obviously will happen any day now (sorry for cynicism).
The problem is that the current arrangement isn't the friendliest to my back, and basically no outside help will agree to replace me (at home) - I'm a large and strong guy and I sometimes struggle.
Whenever I bring out this topic I get a temper tantrum, and I usually hear that I don't really care for her, I just want her to day, or in better days, that I don't believe that she'll be healed hard enough (which is another topic anyway).
She always was somewhat "emotionally abusive", I realized that not long before the illness, that she was basically blackmailing me with her love/hate throughout my life. I've dealt with that a bit, but the mechanisms are still there and it's not easy to deal with them everyday.
I wonder if anyone here is/was in similar situation, and what are your suggestions? I'd appreciate any help or even a nice word (I'll just happily commiserate too), as I'm at my wit's end.
Explain that you truly do not want to destroy your mom's faith. She is probably happier thinking she will be healed.
Explain that your are having troubles with caring for her while she waits for her miracle (which may only come after she is in heaven).
Tell her exactly what you need to be able to "help" and allow others to "help". If she balks at "buying" items, most equipment and supplies could be "rented and returned" or "sold" when she no longer needs them. Then, you have the items you need to care for her without undermining her belief system.
It makes it clear that ALS is progressive. Of course religion allows for ‘miracles’, but they aren’t very common these days. Have you talked to her Church people? Could you get them to help along the lines of ‘Hope for the best, prepare for the worst’? Actually depending on a miracle isn’t religious at all. ‘God helps those who help themselves.’ You can’t force God to give you a miracle.
You have to stop ‘enabling’ this behavior. If you damage your back, you, your mother and her own mother are in dire straits. I doubt that your 90 year old grandmother will be able to cope. Your mother will of necessity go straight to a nursing home, because that’s the level of care she needs. Whether you get a temper tantrum or not, you simply have to change what is going on.
In fact, a massive temper tantrum might be useful. If her behavior is bad enough, you and grandmother walk away. From the sound of it, even a day would then be enough to make it impossible for her to cope. You make it quite clear to her the conditions under which you are willing for her to stay at home with you safely. I’d suggest that you bring in an appropriate medico to tell you exactly what (if anything) would be necessary for this to happen.
Most of us start on this site first by reading, then by asking about our own problem. Helping others comes later. Thanks for having the courage to set it all out. Now use your courage to stand up for yourself and for common sense. Love, Margaret
Getting angry about the doctor's first reaction is not enough, you need to keep going on the issue. Just that might make a big change!
Welcome to the forum. I am so sorry that your mom is in this situation and that your family is struggling to cope.
It made me sad to read that your mom seems irrational concerning her faith. Faith is comforting to those who believe and I certainly respect her belief in God. It doesn’t serve her well by taking God for granted. A miracle is a gift. We can ask God for a miracle but we can’t demand or even feel as if we deserve a gift. You could tell her that we can’t forget the words of Jesus, “Thy will be done.” We don’t always get what we ask for.
I personally believe that God gives us a brain to reason with, regardless of any beliefs in miracles. You are rational and it’s a shame that she doesn’t take a page from your book. You have tried numerous approaches but she won’t accept any of them.
I hate to make this comparison but I will in order to make my point. Her situation reminds me of a documentary that I watched on television once. A backwoods preacher held services with snakes. The congregation was instructed to handle the snakes to show faith that God would protect those who believe in Him. Well, needless to say, his congregation got smaller and smaller! Why? Because of snake bites! It was totally irrational!
I understand that you are at your wit’s end. I would be too. This is a sad situation all around and I truly hope that one day your mom will come to her senses and take some responsibility for herself, or at least become humble enough to make the changes you have suggested so she is able to have a better quality of life for the remainder of her days in this world.
You can’t ‘fix’ this for her. It really is hard to understand why some people think of God as a big slot machine or Santa Clause in the sky and feel that through faith we will get everything that our hearts desire. Life simply doesn’t work that way. Unfortunately, there are tough situations that we are faced with and acceptance is a very hard lesson to learn.
Wishing you peace during this difficult period in your life.