rhibs
New member
- Joined
- Aug 12, 2021
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 12/2018
- Country
- US
- State
- OR
- City
- Redmond
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.
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.
