How can I support my wife whose mother has ALS?

rhibs

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Hello, I have been lurking here for years now. First because of the diagnosis of my wonderful MIL and lately for my own purposes. My MIL was diagnosed over 2 years ago. I was away, playing outside, with my friend when my wife got the news. Like so many of you, there were countless misdiagnoses and tests along the way that I was simply not there when she got the news. There had been so many false starts. My partner was slumped over the sink crying by the time I was able to race home. I then held her as she cried on the floor, not knowing what to say. Unannounced a friend came over and we welcomed the distraction. Never, again did we discuss the issue in earnest. I never saw her cry again until 2 years later.

My wife never volunteered more than basic factual information about what was going on with her mom. I didn't want to poke and prod for more. I soon felt like the role she wanted me to play was one of a distraction. A reminder of normal life. So play that role I did... For a long time. Then one night we had a fight and in that fight, it came out that I wasn't adequately supporting her and that she didn't feel comfortable talking to me about her feelings and her mom's condition with me. I felt terrible. My entire life I have been good at talking people through difficult times, but somehow couldn't be there for my own wife, even though it turns out that she cries multiple times every single day. I have put more effort into tracking the appointments and asking questions after and how she is doing... She never tells me much. I still feel like I am failing. Her mom is now likely near the end and I don't know if I will figure out what she needs in time.

There are some exceptional difficulties in our case. My in-laws live a 14-hour flight away and we have a two-year-old. We've been going back as an entire family a couple of times a year since the diagnosis. She has taken our son solo another 2 times a year since then and just herself an additional 2 times a year. The location requires multiple flights to be caught and an additional 3-hour drive once you get to the final airport. It's a terrible trip, especially with a young child. At current prices, it cost over $3k for all of us to go. The money combined with terrible travel makes it hard for me to pretend to want to take the trip. Which is a big issue that I know I need to improve on. When I do go with them I spend the entirety of the time taking care of the kids (usually her sister has made the trip up as well with her two sons) in an environment that is completely not ideal for young children. No one is crushing it during these trips. However, there are moments. Short moments where the kids and my MIL interact positively and it's pure magic. That 20 minutes every other day is why I held a screaming child on an airplane I tell myself. It is all worth it. Then we fly home and it's ALWAYS the bigger shit show and I am back to never wanting to do it again. I simply can't help that feeling. It all seems to work best when I stay home with our son while she visits her mom and that's a difficult but important role I am more than happy to play. However, it robs her mom of those special moments and it's often not my wife's preference (even though she is always never wanting to do it again every time we fly back too, she just gets over it quickly).

I am looking forward to our Thanksgiving trip but really don't know how I am going to make a trip work before then that she also wants to do. We have 5 acres and farm animals, I also have a once-in-a-lifetime trip planned with my father in October... If her mother passes just before or during that trip I fear our relationship won't survive as my father and I have been talking and dreaming about this experience for 30 years and it's not something that can be postponed. It's a one-chance deal. I won't miss it... I feel guilty just typing that.

Additionally, I have had some health issues that have been very triggering for the both of us. The health issue has required all the same testing her mother went through. Just saying spinal and brain MRI's, CK, and most importantly EMG has been hard for us both. Going through testing to rule out ALS, is stressful for anyone, especially so when the last time this was done the outcome was so tragic. My wife seems disinterested in the issues to a degree and wasn't really excited about the recent positive news of fasciculations being the only abnormality found on the EMG. She has been through this before, the false hope of another diagnosis. She'd rather ignore the whole thing is happening. I don't blame her.

This has probably been longer than anyone will want to read but was therapeutic to put out into the world anyway. Ultimately, I wanted to give the scope of the situation and am hoping that someone who has been there can give me advice on the best way to support my wife. I'm sure there are many who both wanted to have their partners help more but who were also reluctant to talk about the trauma. Please, if you can, open up and let me know what would have made your life better and easier so I can try to do the same for my partner. She's the most wonderful person who carries the world's burdens on her shoulders. Thank you all.
 

Nuts

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I did not travel the road you are on--my husband was the PALS, but some painful experiences transcend their specific circumstances. I was not with my husband the day he got the diagnosis--it was his first trip to the neurologist, and who expects an answer on the initial visit? HIs GP was just that good and I was just that oblivious. I live with that years after his departure from this world. I don't feel guilt, because if I'd have asked to accompany him he'd have said no, but I do feel sorrowful that he had to make the two hour trip home to me by himself, trying to figure out how to tell me.

To be honest, I felt something was terribly wrong years before. His civilian PCP told him to drink pickle juice to deal with the fasciculations which, she said, were benign. I had a moment of clarity where I knew we were in terrible trouble, but I shut it down because his doctor said I could, and I was relieved. I'm still glad today that I did, because two additional years of knowing would only have been two more lost years--they would not have changed a thing. Please don't feel slighted that your wife seems disinterested in your current medical testing--she may just not be able to face the possibility that it presents. ALS taught me that there is NO point in worrying until you KNOW you need to worry (and then, sadly, worry won't help a damn thing).

Talk to your wife. Explain what you've told us here. Ask her what she wants. She may not know, but she will (eventually if not today) appreciate that you really do want to support her.

Give her and your MIL all the time and opportunities that you can. It's miserable right now, but trust me, when she's gone you will be glad that you did. Guilt and grief are gifts that just keep giving, so knowing that you've done all that you can in the face of what this beast dishes out will pay dividends in the long run.

While you support your wife, you also need to nourish your relationship with your own father. Explain that this is a life long dream trip (and I assume you are not able to reschedule). Be honest. Share your pain. Can you imagine missing this opportunity and then, God forbid, losing your father before you can reschedule it? Her situation has probably made you even more aware of your own, and that's ok. Just talk about it.

Communication is the most powerful tool in your arsenal. Even if your wife can't respond to you clearly right now, the fact that you tried will stay with her.

I am so sorry that you are going through this. It is life-changing in more ways than one. I hope that you can make the trip with your father, that your mother-in-law has as peaceful a journey as possible, and that you find answers that are much easier to bear than a diagnosis of ALS. Mostly I hope that you and your wife find a way to become closer through all of this, rather than having it tear you apart.

Talk to her.
 

rhibs

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Thank you Nuts. Thank you for your thoughtful response and thank you for continuing to help others after losing your loved one. It means a lot to those of us going through it. It requires a lot of strength and compassion and I appreciate it immensely. I will talk to my wife when she returns. I will ask more directly what she needs and most importantly listen. I agree that any expense or time spent now will be worth it. My personal issue is usually that I feel like having the kids there is more harm than good but really that's ultimately up to my MIL to decide, not me, and I need to get that through my head.

You talking about fasciculations being the early symptom for your husband really shook me. I also know that there is no point worrying or affecting your life with something out of your control but as we both know that is easier said than done. I am happy that you were able to put it out of your mind for a couple of years and enjoy that time. I am trying to do the same as long as I can. With varying degrees of success. The recent onset of cramps has put me in a dark place. However, I still went out to a wonderful lake with my son and my dog and put him in the backpack and hiked around. In some ways, the uncertainty made it all the sweeter. I tried to soak in the moment as best I could. Hopefully, regardless of the outcome, I can keep it that way. Thanks again Nuts.
 

lgelb

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Sorry to hear about your MIL, R. Does your son do video calls with her in between trips? Maybe there could be more special moments to bank. You can record the video, too.

The reality is, though, you don't control when she dies, and neither does your wife (unless your MIL has a self-directed death and chooses to involve your wife or vice versa).

Maybe you could ask/share how you feel you could better support apart from physically traveling. But...

Since ALS is not known for good timing, in all likelihood, your MIL is going to die at a "bad time" -- not that there's a good one, but let's say for the sake of argument that it is during the trip with your dad. It sounds harsh, but you may have to stipulate in advance that your bucket list trip comes ahead of the (service?) for your MIL, if it really does.

Maybe restate that what your MIL means to your wife is analogous to how you and your dad relate, and if you both make your separate peace, you will both be stronger and have more to bring to your marriage and son. She may not totally want to hear that, but better to say it now than at the eleventh hour.

And as Becky said, apart from the trip that can't be changed, I would do everything in your power to do what's asked of you, including a trip before the one with your dad if that's what she wants, expense and farm-tending notwithstanding. As you say, she knows more about her mom's condition than you.

It's a show of good faith that she may need, it may be the last time you see your MIL, and if she has one good moment with your son, it will be a moment that your wife in particular will find nourishing for the rest of her own life.

You don't have to pretend to want to go. You just have to go and be your best self.

As for your own diagnostic "uncertainty," you haven't presented any. This isn't the spot to rehash that, and it doesn't sound like there's anything to rehash. But you sound squirrelly about it. If serious stuff has been ruled out, run with that, and don't look back -- there's enough going on. Becky's husband's situation was not the same as yours -- you've already had the tests that were used to deliver the news.

Best,
Laurie
 
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rmt

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So sorry about your MIL. I totally agree that the trip with your dad is something not to be missed or postponed. I'm sorry you are having to try to balance all of this.

When my husband started having symptoms and we talked to the family about it, I realized that I needed different things from different people.

My brother asked if I wanted to talk to him about it (we are very close), and I was surprised that the answer was no. What I wanted was to NOT talk to him about it, at least not all the time. I didn't want every phone call to be about my husband's health or how I was doing. And I didn't want to see his name on my phone and dread having to give him updates. He said great, that I could talk to him about it anytime I wanted, but that he understood where I was coming from. And I'm so glad that is how things are with him. I bring up my husband's health (and my mental health) sometimes, but mostly we talk about other things. And I love it.

With my parents and my husband's sisters, we discuss his progression and how things are going. We also talk about lots of other things. It can be hard to find a balance but we try.

Does your wife have other people in her support system? Do she and her sister support each other emotionally? I wonder if she is having trouble balancing opening up to you, but not having your entire relationship consumed by your MIL's ALS. I can see that being an impossible thing to manage, especially as her mom gets closer to end of life. I'm sure it is going to be the only thing she can focus on as her mom progresses and what she needs from you may change constantly. But hopefully you two can open a dialogue about how you can best support her. For me, it means so much when people want to know how best to support me. I don't always know the answer, but it is nice to know the support is there.
 

Nuts

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Thanks to Laurie for pointing out that my husband's situation and yours are very different. I should have stressed that. Fasciculations ARE normally benign, and there was no reason to do neurological testing until the weakness presented itself.

The good news is that you HAVE had that testing and are cleared from the really really bad stuff. That God for that.
 

Whispa

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Hi rhibs,
I’m not sure how much help I can be but I will try. I was recently the carer of my own mother who passed from ALS, although we didn’t get a definite diagnosis until 10 days before she passed. A mix of covid, closed minded doctors and my mums weight, symptoms and stubbornness had them confused as even tho she could not speak for 1.5 years, she could still do everything else, just extremely slowly and weak. However it was in the back of our minds but we were all in strong denial but nonetheless she was unwell so I was caring for her for almost 2 years travelling daily from my house to hers 40 mins away. My partner was amazing. He wasn’t home a huge amount as his company is full on so he wasn’t much help with the kids, so firstly your doing great being so hands on with your son. But emotionally, my partner was just calm, open to hearing me whenever I needed to vent and even tho it was hard with me going there every day and our house and yard suffering, he never complained, he just kept saying I need to do whatever I need to do. He was also in denial as he’d lost a friend to als and my mum to him seemed completely different, but he just completely understood that life was on hold til things sorted out one way or another. It seems like such a long hard battle at the time but now looking back time was far too short so I’m so thankful he encouraged me to spend as much time with her as possible. And he asked me every single day how she was, that was a important part for me. I’m sorry your wife hasn’t seemed to want to hear very much about your tests, although I do imagine that’s from emotional exhaustion or fear. At the same time my mother was unwell, my brother had 2 mini strokes and my dad had bowel cancer and I know I wasn’t as supportive to them as I should have been as my mind was so exhausted and scared for mum, I couldn’t process anything else unless I had to. And now my MIL is going through a lot of tests that are either the same as mum had, or are tests that mum needed but was never given due to her not being taken seriously, so I’m really struggling to even hear my MIL talk about it. She’s also an extreme hypochondriac though so that’s a little different to your situation. I imagine your wife is just brain fried and terrified, and sounds like you two really need to have a deep kind talk about it all, and clear the air, particularly about how things can be managed if the timing is around the same time as your trip. Maybe you could really plan for someone to care for the animals so that if your away, your wife is free to be able to stay with her mum and dad for the duration, it would be very hard for her being home alone taking care of animals during that time, best place for her would be with her family. My partner went away for 3 weeks and left me with a bunch of baby calves, mum passed 2 weeks after he came home so I say this part from experience, even tho we didn’t know at that time mum was dying, that was extremely hard. You guys know the time is near so have the slight benefit of organising some things. Basically just be there, be open and do whatever you can to take pressure off your wife because losing someone to MND is a hell no one should ever have to glimpse. Sorry if this makes no sense but hope it helps slightly
 

rhibs

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Thank you all. Sorry, it took me so long to respond. As a new forum member, there were limitations on my posting. You are all so incredibly wonderful. My wife had a relatively good trip home and I survived two weeks alone with a two-year-old.. I would almost say thrived, but the housework took a major hit. Luckily, upon returning my wife has been much more willing to talk to me about everything that is going on and how she is feeling. I think I really got some insight into the role she wants me to play. I think just being more observant after hearing your stories helped. We have been doing really well since and even enjoyed a leisure day! Also, my wife is fine with me focusing on my side of the family for the next couple of months.

My dad's horse was tragically killed and my horse was injured. They were key pieces to the planned trip with my dad. We are still going but my dad will need a lot more help leading up to it. To top it all off my grandmother was diagnosed with lung cancer after passing out last week. So I am headed home a couple of times in September and October. Then we will plan on spending some time with her mother in November and December if possible. I told my wife she can head back anytime she needs to and we will figure it out. We have a plan in place should something come up while I am out of service. I also bought a satellite communicator to help put her mind at ease.

Again, thank you so much for everything. This has helped us immensely.
 
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