My mother-in-law has ALS and narcissistic tendencies

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New member
May 29, 2021
Loved one DX
Hi all,

I'd like to apologise in advance if this is rather long.

My MIL has ALS, and is in the mid to late stages. She requires assistance with all aspects of daily living. I live with my in-laws, and the journey has been nothing short of tension filled and anxiety inducing.

Her primary caregiver is her husband, who works a full time job. All members of the household, except myself in recent months, have been employed full time, with the nature of their job preventing them from working from home, even during COVID. As such, caregiving is usually only available in the evening since that is when her husband returns from work. While her children assisted in caregiving when more severe onset such as nearly full body paralysis set in, she would curse and call them names when they showered or fed her because they couldn't do it like their dad could. She would regularly berate them for failing to understand her when her speech began to slur more severely, calling them stupid or useless. She would insist on ways to assert control over the situation, such as refusing to drink water unless a specific mug was used, refusing food because it was too hot, then too cold, and etc, as well as keeping family members awake till 3-4am with requests or demands to sit with her as she watched television. These instances were just the beginning.

When her needs for care became more intense and as the family began to burn out, the family decided to hire a helper to assist in her care. This is fairly common practice where I am from. However, all 3 helpers they hired quit as she became more demanding, such as refusing to be showered or eat until 1-2 am. She also expected them to clean the house and would claim they were only pretending to do so when the helpers did as instructed.

Her husband then became the only person who was willing to endure this treatment. since he was also the only member of the family who was able to get some leniency from his job to start late and end early due to my MIL's failing health. After years of being the sole caretaker, he is beyond burnt out. However, every attempt to have others come in and assist has ended in failure.

In recent months, my MIL has decided she would move in with her sister and her family. It seems her demanding nature has ceased in their presence, and resumes whenever her husband and her are alone. This was proven in video evidence that her family threatened to release to social media - naturally, only her husbands words are intelligible. I'll acknowledge how this may appear to outsiders, but I've heard what my MIL says to him and treats him (in terms of co-operation) when she thought I wasn't home. When my husband and his brother had finally reached a stage in which they were helping with her care once again, her brother in law suddenly and without explanation barred them from entering his home, permitting only my father in law entry to care for her, and exponentially increasing his burn out by requiring him to leave the home in order to be her sole care taker.

The family has come to resent her, not for the capabilities that her ALS has robbed her of, but for the sheer lack of co-operation when out of the eyes of outsiders. They are frustrated, angry, burnt out and void of hope. They have tried everything, only to be painted as abusers or uncaring, heartless people for not allowing themselves to be treated in ways that disrespect them, or may affect their livelihoods.

We are hiring a new helper, who will be coming in 2 weeks. As I'm not currently working. I've been tasked to keep an eye on things due to the documented difficulties my mother in law has with them. I don't know how it's going to go, since COVID measures have banned gatherings and eating out. The helper will likely be forced to stay in, even on her days off, without a break from the environment, and I feel bad for her. I've also been struggling immensely with my own mental health, and being surrounded with this situation, hasn't made things any easier.

If you've made it to the end, thank you. Any advice, words of wisdom, or constructive criticisms are welcome.
I'm so sorry you are going through this.
I would ask - was she always like this before ALS?
Do you know there is a disease called Front-temporal Dementia, with a behavioural variant? Do you know if she has been diagnosed with this? It is common for PALS to also have FTD which is a terminal disease in itself.
Would like to add: this situation is extremely jarring for me as my MIL has been nothing short of kind to me. However, I have witnessed first hand how she is with family and do not understand this disconnect. Family has tried speaking to her about her behavior, but it's been years and nothing has changed.
Hi Tillie,

Yes, her behavior was usually not the kind that left the warm and fuzzies. Her children all have strained or detached relationships with her as a result, which they tried to put aside to no avail. As far as we know, she has not been diagnosed with FTD, her last visit to hospital was in January, and she was fully co-operative and fully aware of what is going on.

Thank you regardless for the helpful suggestion.
My husband had FTD and could turn his behaviour towards people on and off. However, for him, before FTD he was the kindest, most generous, and empathetic person I have known.

If she is just a nasty person, it is truly difficult.
I asked because when it is FTD the strategies are totally different.

If this is just what she is like, then there may need to be honest discussions with her, with everyone present regarding her care moving forwards and boundaries. If she is full capacitated then a discussion regarding consequences of behaviours is totally appropriate.
Tillie, thanks so much for your responses!

I'm really not sure how to go about this, as it is my understanding that the family has tried speaking to her in the past, resulting in changed behaviour for a short period, then it's back to business as usual.

If you know of any particular areas to touch on, or any resource I could draw upon for dealing with this sort of behaviour, I would truly appreciate it. I've only just started using this forum but so far its the first time I've felt seen and heard as I read through the posts.

Thanks so much for all you and every other regular poster does!
What you describe sounds like a dysfunctional family at this point, beyond one difficult person. Whether the PALS agrees to participate or not, group and/or individual counseling might benefit the others that are struggling to cope with the situation. It's very good of you to try to do what you can.

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I certainly don't want to make any kind of judgments on either your MIL or any of the family members.
And I'm no expert, far from it. What I would suggest is everyone else get together first and find out if you all agree on how to approach the situation, what boundaries are appropriate and some 'if then' responses that have to be stuck to.
To be honest, this kind of thing is never solved by a single conversation, but by everyone working on it continuously, and being will to move on consequences of actions.

Counselling may help, but I would at least start by finding out if all involved in her care are willing to act together for the same goals and use the same strategies. If not, I think you are caught in a situation that is not likely to be resolved.

If she changed in the past, then reverted, that indicates that boundaries were not enforced. Going forwards, if she agrees to any boundaries, abides by them, then begins to revert, immediately it has to be acted on. One can't set boundaries, then ignore when they get trampled.
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