mother in denial - tough choices

[peacecomesfromwithin]

My mother is single and I am her only child. She lives in the southwest and I live on the east coast and travel every month or two to Africa for my job, which I love. First, a little bit about me. My job is at a prestigious organization and I just received a promotion, and may soon be offered a job that would move me to Africa for several years - and it would be an absolutely amazing career opportunity. I have massive amounts of student loan debt that I am hoping to get partially forgiven after I work in public service for 10 years. It's only been 3 years so far. I am 30, single, pretty, and looking for love - although it can be hard to date as my job is so demanding.

Now, about her. My mother is fiercely independent, and always has been. She developed foot drop about 2 or 3 years ago, and started using a cane for balance 1 year ago. 10 months ago, she got really sick with food poisoning or something, didn't eat for weeks, and became severely dehydrated. She didn't tell me at the time, but sometime between this virus and 5 months ago, she transformed entirely. She started using her cane as a third leg and can't stand up without it, started to hunch over, took 10 minutes or more to drag herself up or down a flight of stairs, and would trip and fall constantly. When I first saw her in this state 5 months ago, I was absolutely horrified but did not think of MND/ALS. She was diagnosed with idiopathic peripheral polyneuropathy. BUT in the past 3 months she's developed problems with her speech - having to annunciate everything very slowly and clearly in order to get it out, and the quality of her voice as changed. She's had to start eating very slowly to avoid choking, which she denies. She fell and broke her hip 1 month ago, and since then we've also noticed a tremor in her tongue and spasms in her arms. Her thumb muscles have totally atrophied and she has limited dexterity in her hands now.

She was recently diagnosed with MND after visiting another neurologist, who had terrible bedside manner. She is in TOTAL DENIAL about this diagnosis and is highly into alternative medicine. After her hip break, I went to stay with her for a month, to take care of her and help things progress with doctors. Unfortunately the MND diagnosis happened right after I left, and since then she's rejected the neurologist and is going back to acupuncture and xyto testing, etc. I've pleaded with her to go to a specialist, and she won't. She's asking her GP for millions of other tests because she refuses to believe it's MND. She's already had MRIs of her whole body, all of the blood tests, the EMG test, etc.

I feel like a horrible person for pressing her to go to the specialist and keep bringing up MND, but I need to plan for it if it is! I am so scared about losing my amazing job opportunities and the prime years of my life being a primary caregiver, which I know is totally selfish. I don't want to move in with her, across the country, away from work and friends, but I also can't leave her alone. I also would hate to make her move to the east coast when she seems to get so much joy from nature. I love her so much and she has given me so much, so of course I want to help, but this whole situation is terrifying. Something has to give.

Any thoughts or words of encouragement are most welcome. Sorry for this long rant - but I am feeling so sad and fed up and frustrated and confused and at a loss!

 

[Diane H]

From your description of your mother's personality and progression, it really doesn't sound as though the diagnosis matters. She would likely refuse any other diagnosis anyway, though perhaps hearing it again from another doctor with a good bedside manner and the credentials of working at a large medical center with a neuromuscular specialty group would help. Maybe. But the diagnosis has been given if not accepted and the bottom line is that there is currently no treatment to stop or slow the disease unless it is a variant that has an identifiable autoimmune basis such as Multifocal Motor Neuropathy (MMN). If that has been ruled out by blood work, the treatment for ALS is simply addressing the problems as they come along. No need to invoke the letters ALS for that. It would be ideal to have her seen in an ALS clinic where she would be evaluated by a team of a doctor and several types of therapists all in one visit! But if you and her doctors can't get her that far, her GP can make appointments for a swallow study, respiratory function testing, wheelchair evaluation etc. as needed.
Your personal situation and decisions are yours to deal with. I have not been great about dealing with my own so have no wisdom to foist on you! : -)

 

[Atsugi]

By contrast, I am friggin' Solomon.

Let me note a couple things first.
- Mom is an independent adult capable of running her own life. She can do what she wants, even if you disagree.
- ALS usually has two victims. The person with ALS, and the surviving family, who might be devastated financially and emotionally. Sometimes, families break up as a result of this disease. We try to avoid that.
- People with ALS often feel very strongly that they don't want to be a burden to family. She might not want you to be a victim of the disease. Your mom probably raised you in the hopes of making you an independent successful adult.

I think that, deep inside, you want someone to give you permission to go to Africa and look for love. But you have to make that decision yourself.

When I was in the service, I had to make some huge decisions that would change other people's lives significantly: that was my responsibility. Doctors make life-and-death decisions every day: that's part of the job. Likewise, your mom runs her own life and has to live with the results.

Now it's your turn. Good luck.

 

[lgelb]

Peace,

The advantage of seeking a 2nd opinion and "accepting" the ALS dx would be Medicare/SSDI benefits if she is eligible for anything more than she currently receives, as well as any support offered by her local MDA, ALSA and senior/mobility agencies. We have a number of members who took some time to come to terms. The main concerns with seeking alternative tx are avoiding unnecessary expense, physical harm or acceleration of disease progression, e.g. through inappropriately strenuous physical therapy.

I would be sure of the dx and her approach to it, before considering future plans. Meanwhile, I would try to influence those by using "I" statements and breadcrumbs to objective information rather than attacking her present course.

Best,
Laurie

 

[Gambatte]

Hi Peace -

I work in a similar field and before my sister moved in with me almost a year ago, traveled frequently, mostly to Africa. I had to make a personal choice about what I would regret more - helping and time with my sister or work opportunities. I pass no judgment on whatever decision you make as there is no easy decision. I must confess that the balance is all but impossible but we get through every day. I miss being able to immerse myself in work, but then I miss not being able to do more for my sister. There are no simple choices. You just have to do what you feel is right for you. I'd be happy to offer more if I could. I wish you and your mother the best.

 

[peacecomesfromwithin]

Oh goodness. Laurie, she has already done two zyto scans! This latest one has thyroid coming up at the top of the list - of course this was after she told the doctor (I think he's actually a chiropractor...) that her cervical spine MRI showed some masses on thyroid. Snake oil, anyone? She also has a physical therapist who has helped her "graduate" to two canes from a walker, for when she wants to get out of the house. She went on her first solo excursion to the grocery store yesterday, despite my trying-to-be-subtle-and-not-bug-her suggestions about asking a friend to come along. She made it, but had to take a long rest afterwards. Does unnecessary physical activity make the disease progress faster? She absolutely won't tell me if she's getting worse, so I am considering enlisting the cleaning lady to keep me updated. I tried to get her friends to check in on her, but she'll often cancel and not pick up the phone. Communication by text/email only (where it's easier to say no, by the way). The last time I was there visiting and a friend was as well, after the friend left she said that she didn't talk much because she didn't want the friend to judge her speaking or voice...

More questions for all of you: I can get away with a certain amount of time teleworking from New Mexico, where she lives, but I'm not sure how much. In terms of getting her diagnosed and getting appropriate treatment, do you think that it would be helpful to have me out there moving things forward now or in a few months from now? When I'm actually there, she is much more likely to do things. Currently, after long discussions about her going to an ALS specialist (total rejection on her part), she has decided to get as many additional tests and alternative therapies as possible. I was planning to go back in April and hopefully gather the results and end up at a specialist. But, Laurie - your discussion of unnecessary expense has me worried. My mother is definitely not a frugal person and is still working... which is probably part of the reason why she's so reluctant to accept the diagnosis.

All - thank you for your comments and support. It really sucks that there is no right answer! I think I will be regretful and resentful no matter what. I just wish I was calmer and happier and had more positive energy to pull from and give right now.

 

[lgelb]

Well, yes, as you saw, the zyto is a ripoff and probably leads to unneeded and possibly dangerous chiro treatment (fake chiro can be risky even before we consider ALS). I realize you can't be in 2 places at once, and you need an on-site ally who can help save her from hope's worst outcomes. Can any of her friends or professionals be enlisted, even if they have to drop by unannounced, food she can eat in hand? Does she have an accountant, attorney, someone who can point out that there are deadlines for some of the things she needs to file for?

As to physical exertion, it depends on the level, but too much too long in too concentrated form can accelerate progression, yes. Basically, if someone charges past their limits. And, of course, people do choke and get aspiration pneumonia if they try to eat or drink what they can't.

If/when she accepts the diagnosis, the ALSA or MDA in New Mexico might be able to suggest someone who can keep an eye out, and she can certainly pay for help, if she has the resources (any disability benefit she has at work might help too, which would require filing for it...) but more formally, there are also eldercare advocates who do that kind of thing. Once she is classified by a clinic as eligible for home services (this requires her getting to one, I know), she can get in-home PT and OT and get set up with equipment as she needs it.

Now might also be the time to explore grocery delivery, etc.

I know in this case, positive energy may seem far away, but at some point your and her understanding of her disease will overlap, she will be glad for your help and you will be glad that you are in a position to provide it. As to when/how that will happen, I can't say, but meanwhile, just try to exert "positive forward pressure" toward that shared understanding. Your relationship, however long or short from here on in, will ultimately be the stronger for it.

 

[Nuts]

Peace, none of this is easy, and the timing is certainly bad for you. Our eldest daughter has put her plans on hold for taking a transfer to Europe, something her dad verbalized his objection to, but it's good to know she's nearby and can spend quality time with dad while it's possible.

As you're going to hear over and over again, there's no right or wrong answer that works for everyone. If your mom has no one else, then she's going to need you or someone you hire or arrange to be her primary caregiver. You cannot set her up with a home health agency and leave things on autopilot, as I'm sure you've realized.

At the same time, Mike is right about her making her own decisions as long as she is mentally competent. Have you tired expressing to her what you've shared with us? Perhaps if you explain that in the event that she's right, you need to know that from the appropriate specialist so that you can relax and get on with your plans? Maybe she will agree to the second opinion (at an ALS clinic, please) for your sake.

I have a friend, someone who used to be active here but isn't now, who lives by himself with ALS. He is also fiercely independent. I don't know how long he'll be able to remain at home alone, but suspect that he hopes to end his days like that.

I wish there was an easy way out. This sucks.

One last thing to consider is that if you go to Africa, your mom might not be here when you return if she has ALS. If she is, communication and/or activity with her might be limited or impossible. Only you can decide what her and your greatest needs are.

No matter what you decide, we'll be here. We try to remain judgement free, even if that means some well meaning reminders to each other now and then. After all, we know better than most what you and your mom are facing.

Becky