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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.

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Tell her that while she waits for her miracle, that you need her cooperation in getting whatever durable medical equipment and small renovations done so that you can help her without injuring yourself. Period. If she refuses then tell her that you will help her find a nursing home where she can continue to be in denial. Her needs are only going to increase and it will consume your life. You deserve better.
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JakeyJake May 9, 2021
In my book what you said is under "brutal", but it helped me a lot to hear that, thank you.
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Tough love? It's going to be hard to set firm boundaries when she lays on the fear, obligation and guilt, but if she won't change then you have to. Tell her the changes are for you, not for her. And then if she still won't allow them let her live with the consequences; don't continue to care for her in any way that you find physically compromising. And please arrange to have outside caregivers to give you some respite as well, your mental health is just as important as your physical health.
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JakeyJake May 9, 2021
Thank you. Yes, I actually was hoping for this answer, but I was always afraid that my "tough love" will be considered basically flipping her off, but I now start to see that it may be just the opposite. Thank you again. 🙂
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You have to set up boundaries to protect your mental and emotional self. Maybe those boundaries include deferring the caregiving to someone else, a hired aid? If she doesn't like this thought then you have a negotiating tool for her to make changes in her home that make providing care by you easier for YOU and your grandmother (who, I'm assuming will eventually need someone to care for her as well).

As far as her spiritual belief that having "enough faith" is the only precursor to divine healing: ask her why Paul the Apostle was allowed to suffer with the "thorn in his side" (from some sort of illness or disease) all the while he was evangelizing and discipling? And not to mention all the physical persecutions he endured (like whippings, etc.)? Is she saying even he didn't have enough faith? If so then there's no hope for the rest of us believers.

2 Cor 12:7-10 (Paul writing to the church in Corinth)
"Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh... Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

I hope this helps. Welcome to the forum!
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JakeyJake May 9, 2021
The thing with her healing is that she was recommended some "Christian healer" on YouTube, who basically says that illness is Satan's and healing is God's, so it's absurd at times. I didn't know what she was watching and when I realized it was a bit too late... That said, I appreciate your advice and I'll definitely remember those verses.
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ALS is a very difficult disease to live with and very difficult for the caregiver to witness. My grandfather died of ALS in 1952 at the age of 62, and although he and g'ma were very religious, no divine intervention. To this day there's been no progress in a preventative or cure for ALS. It's sad that those so young, and 57 is young, are afflicted with this and so many other non curable diseases.

It's unfortunate, but religion often times gets in the way of proper patient care and a patient's acceptance of their fate. I would think that they would welcome death and look forward to a glorious after life in His presence. Maybe you could even use that approach with your mom. She is not surrendering to the disease, but to the will of God and the relief of pain and suffering she will experience in the afterlife.

You have already been offered good advice in previous posts. As for yourself, make the changes you need to make for your sake. Building a handicap ramp, for example, is not for the patient's benefit, but for the caregiver's. You can do nothing for your mom at this stage, so do what you must for your benefit. As for you, Jakey, and other caregivers whose LOs are in an advanced stage of a disease, your focus should now be on you and your well being.
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cweissp May 10, 2021
My thoughts exactly about the will of God. I know from reading NT that Jesus often healed the sick/injured by saying your sins are forgiven. Maybe she should read the Book of Job from the OT where all sorts of ills were visited on Job who was considered a righteous man.

So many good posts

I also agree you should have POAs for both your mother and GM that include financial and health car.; setting boundaries to protect your physical and mental health; getting in other aids to assist you for your mother and GM.

Best wishes to you and your family as you all journey down this world.
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We find ourselves in this same situation with my MIL. I say 'we' but it's just my DH. I won't/can't DO for her anymore.

She is not sick at all--just aging, almost 91 and living alone. The covid shutdown took her from 'cranky' to 'impossible'.

She won't leave the house. She won't let anyone in. She really CAN'T take care of herself and wants SIL to do everything she can and DH to do the rest. He doesn't even do anything at OUR HOUSE!

My guess that along with age related issues, she's really, at the core, very angry and unsure of how to handle that. Being very angry all the time is exhausting. It does, however, keep people away.

My MIL wants DH to put 'grab bars' all sound her house so she can skitter around w/o using a walker (which she NEEDS, but won't use). He has refused, mutiple times as they really are not the appropriate thing to have.

Trying to set boundaries with someone who is petulant, angry and mean is next to impossible. Keep trying, tho. She blew through MY boundaries and I walked out the door a year ago. I support SIL and DH distantly, but will never set foot on her property again. Sometimes people never accept them.

I'd get your poor mom out of the CG situation as fast as I could. Good heavens--does she expect her 90 yo mom to lift her? Bathe her? I'm BAFFLED by this. My 91 yo mom cannot even make a phone call w/o help.

I am only 65 and already making HUGE changes to my living situation (New house, NO stairs! No lawn, or just minimal! I had cancer a couple years ago and while I came 'back' I did not 'come back' 100%. I'm running at about 60% of normal and that's the best I can do. accepting limitations and planning for the future so I'm NOT a burden is what people DO--doesn't she get that?

As sorry as I am for the dx of ALS, we all die sometime. She can choose to go gracefully or angrily.
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Jake,

Yes. Giving these truths to your Mom will be “brutal”. But, ya know what else will be brutal? You throwing out your back and being stuck in bed yourself.

Being on muscle relaxers and pain killers can take the most hearty of us out of the game, and will certainly take YOU out of caregiving.

As people here told me, “Put on your own oxygen mask, FIRST.” If you’re laying on the ground, you’re no help to anyone else.

Best wishes to you!
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I am going to make light of this only to get my point across... there is a joke I am going to try to recall...
Torrential rains, a man in his house and the house is flooding. the police come by in a boat and tell the man to get in, he says.."No! God is going to save me.
The rains continue, the man is on the second floor of his house now. And the police come by again in the boat and tell him to get in, he says.."No! God is going to save me.
the rains continue, the man is now on the roof of his house and a helicopter hovers over head and a police man lowers a harness and tells the man to put it on, the man said "NO, God is going to save me".
The man drowns and upon arrival at the pearly gates he says.."God, you let me down, I thought you were going to save me" God replies "What did you want, I sent 2 boats and a helicopter and you did not accept the help I offered"

The items that will make caring for your mom are not meant for her to "give up" they are TOOLS that will enable you to care for her better, safer that in turn will help keep her safe and will enable her to "fight" longer.

I am fully aware that you mom would not accept Hospice in order to help her live a safer life BUT Palliative care might be an option. If she would accept that if you can get a Chaplain in that could talk to her. If that is not an option if you can get her Spiritual advisor to talk to her that might help.

But you need to protect yourself and keep yourself safe when caring for her. Ask her what she wants to be done if you get hurt caring for her and you can no longer do what needs to be done. Ask her who she wants to come in and help or where she wants to be placed when you can no longer care for her.,
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jacobsonbob May 13, 2021
That is a SUPER way of illustrating the situation--thanks for sharing this incredibly-applicable "joke" that's worth remembering for a lifetime! (I've already copied it down in a file I keep for such words of wisdom, many of which I've gained from this forum--and I think THIS one gets the gold star!)
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Remind her God only helps those who help themselves
and using you (and her 90 yo mother?!?!) as crutch isn't what God had in mind.
Not to say that the miracle wont happen, but while it's on hold, why not make use of some gadgetry to make everyone's life a little easier: such as a power lift recliner, strategically placed grab bars, a bed assist handle, and toilet seat riser with handles-just to name a few.
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Isthisrealyreal May 13, 2021
Not scripture, it tells us that Gods helps those that can not help themselves.
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It feels a lot more justified to be emotionally abusive when a person can play the 'poor dying victim' card. That's not to say your mother isn't suffering and/or dying, just that the victim card/guilt card is EASIER to use on you now more freely, because you feel even more indebted to her and wanting to help her than ever before. If you don't feel the word 'abuse' is accurate, then use whatever word you like to describe how she's making you feel. But, at the end of the day, you're feeling badly and that's not a good thing. How do you change these dynamics?

I think NYDaughterInLaw hit the nail on the head, personally. Why do YOU have to bleed in order to help HER? What good does that accomplish? When she dies and you're left with a broken back and a crushed soul as a result of her antics, then what? Do what you need to do NOW to ensure that won't happen down the road.

I seriously doubt your mother will agree to hospice, if she's anything like my mother, who'd rather suffer agony than 'have her slip show' by admitting she's approaching the end of her life and needs hospice help. "What would others think?" That's her main concern; that she has to Look Good no matter what, never mind that she's in a wheelchair full time and can't even sit up straight in that wheelchair for having lost core strength from her refusal to do physical therapy. Anyway, that's a subject for another day.

If your mother wants you to need a chiropractor and a back surgeon as a result of caring for HER, that's selfish. Period. Don't allow it. Do what you can and nothing more. Hire in home help, get the renovations under way, buy the medical equipment she needs and when she balks, she can go into Skilled Nursing for her care moving forward.

We all have choices in life and in death. I'm sorry your mother has such an awful disease as ALS and I'm sorry that you are being made to pay the price for it. I hope she gets her miracle, too, but if not, I hope you can do what's required to save your own health and sanity during her end of life journey. Best of luck.
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Reply to lealonnie1
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I think in this case acknowledge her views and concerns so she feels validated. But then YOU must set boundaries that if you are taking care of her and it is affecting your body, then YOU must have the items that she needs so YOU can handle it more easily. Explain you have a bad back or other problems and these items are necessary so you can take care of her better. If she rants and raves, just ignore her and go get them. I don't see ny other option unless putting her somewhere.
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