PALS won't accept diagnosis

[sylviesonrisa]

Hi, I'm new here. My Mom (76) was diagnosed last June after a year or two of tests. She seems to be rather slow progressing at this point (can't move left foot at all, lots of weakness in legs, using braces/walker to get around), but is getting worse. Her and my father live together in quite a remote area, in a very challenging home. They are also completely anti-modern medicine (anti-vax, anti-dr, covid deniers, you name it). My mother still says "if it's ALS", and has refused any treatment other than nutritional or alternative treatment. They were both extremely sick for more than a month (no covid test), and she lost about 15 lbs in that time (she's down to 105 from 120), and she basically crawls up and down their 3 story house (which is extremely cluttered, as she is also a hoarder). While I fully respect her choices even though I whole-heartedly disagree with them, it is terrifying to me to think that she might fall down the stairs one day, or that she is spending her last good years depressed, suffering, and exhausted while not being properly cared for instead of enjoying time with her grandchildren and family (she exhausts herself getting around the house, and then doesn't have the energy to come to her granddaughter's 7th birthday party, for instance). I am trying to be respectful of her choices, but I feel sad for the rest of the family and I worry that she might regret these choices when she gets worse. Does anyone have any experience with this or suggestions? The drs recommended Ensure and anti-depressants to help her gain weight back after being so sick and to help with mood, but as far as she's concerned those are poison). Thank you for reading.

 

[Tomswife]

Sylvie. This is very difficult situation. You may want to consider getting support/counseling for yourself, because it is unlikely that she will change. You may need help dealing with her continuing refusal for help or treatment.
Remember- whatever happens, it is not your fault.
There is an old saying "you can't paddle someone else's canoe".

This is from the site Verywell:

"If you suspect that denial might be a coping mechanism that is preventing them from facing a problem, there are some things that you can do to help overcome it.

There is also the push vs pull. Can you have an expert on motor neuron disease (als) go to the house and talk to them. This removes you as the change agent.

Think about why they are afraid to face the problem.
Consider the consequences of not dealing with the problem.
Try having them talk to a close friend or loved one who may be able to offer some honest, more objective perspective.
Work on identifying the distorted thoughts that might be contributing to their anxiety...
Denial is a common way for people to deal with anxiety-provoking situations. Developing coping skills will allow them to face their fears in healthy and productive ways. If denial is causing problems or preventing them from dealing with a physical or mental health condition, consider talking to a professional or joining a support group.

If someone you love is in denial about a problem, focus on being supportive instead of trying to force them to get treatment. Being willing to listen or offering to go with them to talk to a professional may be more helpful."