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My best friend's mother was recently diagnosed with ALS. She is 86 and had been having difficulties with speech and gait for several years before they were finally given a diagnosis. She is wearing herself out working 2 jobs, handling her mother's finances and trying to schedule caregivers around the clock. She gets very little assistance or support from her 3 siblings. She lost her dad 8 months ago.


She has always been very close to her mom, who is a wonderful lady. Her mom worked in nursing homes for about 40 years - another reason my friend hesitates to place her. I have given her as much support and advice as I dare. Most of the time I just listen, hug, and try to distract her with some outside activities. My own mother is in fairly good health except for the dementia/Alzheimer's, although her condition is worsening. We weren't as close as she and her mother are either.


I believe that as her mother's condition deteriorates, it is going to be difficult, if not dangerous, to have people lifting her onto and off a commode and trying to feed her when she is bound to have swallowing/choking issues. From what little I know of ALS (another friend has it), I believe there will eventually be breathing issues as well. This leads me to think she'd be better off in a care facility - maybe hospice - where her needs can be met through the disease's progression.

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I'm sure you're right about suggesting a hospice evaluation. There should also be a specific support group for ALS which may be a really good resource for her - I'll have a look.

Yes - I hope there'll be something for her here:

go:http://webuny.alsa.org/site/PageNavigator/UNY_8_SupportGroups.html
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lablover64 Aug 2019
At my urging, she took her mom to the same geriatric specialist that oversees my mom's care. They immediately insisted on a neuro work up and that's how they came up with the ALS diagnosis. They also put her in touch with the ALS foundation and she did say that they were very kind and supportive, helping her research ways for her mother to communicate via keyboard, giving her information about available resources, etc. I will pass along this information as well, thank you!
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I appreciate the input. It's so hard to stand by and watch her get so tired and stressed. We've been friends for 40+years and seen each other through a lot of heartbreak. I totally understand why she doesn't want to put her mom in a nursing home and I haven't even suggested it to her. She told me a couple of days ago that, given the rate at which her mom was deteriorating, she was afraid it was inevitable. I didn't want to influence her decision either way but simply told her I was sorry for her and her mom that it had come to that. I have offered to sit with her mom, but she needs help with toileting and she is very sensitive about it and not comfortable with anyone but family and her regular caregivers. It's also difficult because she is losing the ability to speak clearly and it is very difficult to understand her. I'm guessing at this point the best thing I can do is just to be there for my friend and help her keep it together.
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If she has expressed her thought about this decision to you, then feel free to discuss it with her. If she has NOT I don't feel you should say or do anything. It will add confusion and upset to something already confusing and upsetting enough. She and her mother have almost certainly discussed the options for her end of life choices, care, palliative, hospice, need of placement and etc. I agree with cwillie that the best thing you can do now is to spell her some respite time when she needs it, to listen and to support her; if she mentions the coming options try not to give your opinion (esp as I always do, hee hee), but rather help her with open ending questions such as "Have you and Mom discussed this?" "Do you know her wishes regarding hospice or palliative care eventually?" and so on. If she expresses guilt try to help her comb out normal grief and normal wishing you were saintly and totally adequate and had a magic want versus being a real person who could never be expected to do this, and is not. It is fair and right to grieve these dreadful decisions, but guilt is another thing altogether, and has no place in the thinking of someone who is doing such a heroic thing as long as she is able.
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Well, ALS doesn't cause dementia so your friend's mother is going to have to be part of the care plan. I imagine they both want her to be able to do as much as possible for as long as possible, I think as a friend you can help her identify what will be the line in the sand and when she has crossed it.
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It's difficult to stand by and watch the train wreck. But the support you are giving her is wonderful! Maybe you can bless her by offering to watch her mom for an hour or 2 while she gets a break, if you're comfortable doing that. Also make sure you let her know you found a wonderful resource called AgingCare.com where she can get really great support and advice wink wink :-)
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At this point all you can do is support your friend and perhaps occasionally point out or inquire about a new hurdle and hope that she eventually comes to the realization on her own. Even your best bosom buddy from HS who knows all your secrets and never told your husband about that fling two days before the wedding won't take kindly to being told "you need to stick your mom in a home". I would lend an ear whenever she wants to vent, cry with her when she needs to cry, and gently intervene when you see that she's close to the ledge. Let her know that sometimes decisions are made for us and back away when she insists she'll never do that to her mom. She'll eventually realize she can't go on and she'll need you more than ever then. Remaining her best friend is the best thing you can do for her.
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NeedHelpWithMom Aug 2019
What a sweet answer...
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