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Ann Marie

New member
Joined
May 2, 2022
Messages
4
Reason
CALS
Diagnosis
02/2022
Country
US
State
MA
City
Waltham
Hi everyone- I need, for some stranger reason, to get an answer to a question about disappearing friends and family- too long in my own head trying to work this out so its open forum time. Husband has ALS, at home, has refused vent- G tube- and made me promise no hospice. So its him and me against the world. He has Bulbar ALS. BEFORE he even lost the ability to speak, everyone- except for one guy who calls once a month- has vanished. He has 1 brother- in Maine and the sister is back and forth from Bahamas or Florida. NEITHER have attempted anything more than a text since DX. They both said " just dont want to see him like that" verbatim! Obviously, they have talked and that the line they are going with.

Here's where it gets interesting.......that is- or a version thereof- what I get from friends! Just couldn't see him that way- too much for me to see him like that- dont want to remember him like that.........you get the picture! 2 different girlfriends, each stopped by one time. Last October of 22 and February of 23, not since. I feel like I am living on an island with nothing but miles of desert sand between us and a functioning world.

To round out the full rant- we have 2 kis, one married, no children- one single, not children- one is 5 miles away, the other probably 10 miles. Both late 30's............nope, dont see them either. Son, about every 10 days-2 weeks, he will call me on his ride home from work, a 10 min call- 20 min if there is traffic. Daughter, if she needs/wants or asks about something, 9 out of 10 its texts. Neither have any issues with finding time for long weekends, Florida,, visiting out of state friends...etc.

I have asked for help so many times and its never something they can manage at the time, I don't ask anymore- AT ALL nor do I text first, only reply. Both have an aversion to "seeing dad that way" and I'm supposed to understand. Also to clear the air, there is zero bad feelings, no words anywhere- just poof! People just vanished. No one wants to face the Bulbar ALS and everything else that goes with it, i.e. the work load, the heart break- isolation. Anybody out there gone/ going thru the same?
 
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Ann Marie.
I am so sorry you feel abandoned when you should be supported. I discovered that relationships within families have no influence on how much support PALS or CALS will receive. Compassion and the impetus to help come from within. Your rant is very valid. I am sorry that this is your experience. It may be best to forget expectations of other people, and put a care plan in place that meets needs.
How someone treats PALS is a statement about them, not about PALS.
People learn a lot about relationships, Friendships and family, when they are ill.

You are a new member and raise a lot of serious issues around PALS requirements for care and his resistance to care. I think you need someone to talk to him about ALS care, and the aspects that would help him. You may want to post this topic in the General Section. You can start a new topic over in "General " and tell us about your husband and hus diagnosis and issues.

With regard to how people support you and do not support you, your experience is common.
 
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Ann Marie.
My husband Tom has bulbar onset ALS. We are on a similar journey, although everyone is different. I encourage you to get help. You can reach out to ALSA in Massachusetts. Also Compassionate Care ALS. CCALS has helped me with a CALS (her husband had passed recently) I could talk to on the phone. ALSA NY has LCSW that I can call anytime.
I think if your husband could hear from other PALS he may be more receptive to different types of care that make the journey easier.

You cannot do this alone! You are on a very difficult journey and will need volunteer and paid help. If you do not have a care team in place please develop one.
 
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Hi Ann Marie,

I'm so sorry you are being ignored by friends and family. As Kathy said, it's a reflection on them and not on you or your husband. I have no family except an 86-year old brother who is in a VA nursing home. I supported him both physically and financially (and his wife) even after my diagnosis. Back then his health was good. He would never discuss my diagnosis and would leave the room if I brought it up.

My brother has two daughters close to my age (one is 60 and the other 57). I feel very sad that they don't call, text or visit. Every year the older one comes to Florida (she has several properties on the West coast). She does drive over to see her Mom and will invite me over there or drop by for an afternoon. We were very close and I paid for trips for all of her kids to visit me. I got them internships through the college where I taught. I'm very hurt but I have no regrets. they had a good role model in me and we had fun when they came.

I was also "dumped" by a Methodist congregation when the pastor left and was replaced by another one. I think that hurt more than anything else.

When I was in my 30s, I was caregiver to both my Mom and Dad. They never had to go in nursing homes (not that that's a bad thing) and I felt honored to care for them. I still worked full time and helped pay for their home care. They didn't have ALS but they had horrible diseases that were "hard to be around." Some nights, after I put my mother to bed, I'd cry for hours. When I look back, I'm so glad I did it.

Now, I'm alone with a housemate who shares expenses. I'll need carers. I'm afraid of outlasting my money but will just have to cross that bridge when I come to it.

We must allow PALS to make decisions but you might want to let you husband know that a feeding tube will help you as much as it will help him.
 
Hi, Thank you for taking what little time you have to read my rant.
Believe it or not, other than hubby and his writing board, your the only one I talked to today. This is not my first Rodeo, by a long shot, but I will tell you for dam sure, it is my last.
 
The issue with "a feeding tube will help you [the CALS] as much as him [the PALS]," for me is that I don't think we should guilt PALS over pretty much anything (except abuse, of course).

If he knows what's entailed, has seen the videos, understands the consequences of refusal, you might reconfirm it occasionally in a way that allows him to U-turn without losing face, but otherwise, that's that.

Same for BiPAP and anything else he doesn't want, though for most PALS, it is a lot easier to die in comfort without a feeding tube than a BiPAP so that might be a useful factoid, along with the proviso that it might be worth trying for a few minutes -- it's not a commitment.

I am sorry your friends and family have wandered off. Many of us have experienced pretty much the same. If you can frame one of your calls to the kids as an invitation to come over and do something specific together, like an excursion to the park (or meeting there) or watching a movie, while reminding the other person that things only go downhill from here, maybe there's a shot. It sounds backwards and is, for you to pursue them, but this is not a fair world.

Or for starters, if they see him even in a brief Facetime call, they might get the idea that things are not as dire as they imagine -- not some Gothic novel. Or you could send a video of the two of you, or him, enjoying the birds or whatever. It can be easy for 30-somethings to take the low road, but that doesn't mean you can't stress-test their lane.

Best,
Laurie
 
Anne Marie, it's terrible you've been so abandoned by friends and family, I'm really sorry. I think Laurie's idea is a good one - if you invite them for something specific for a couple hours, something where there are things to focus on other than specifically "how is PALS doing," they can show up and not spend the entire time thinking "I don't know what to say, I don't know where to look!"

I think many people are scared or intimidated by another person's disability and feel completely incapable of knowing how to respond. It doesn't excuse their disappointing behavior but if that's part of what's going on, maybe having a way for them to interact that doesn't make them feel awkward would be an initial step and then they could take more steps after that. Come over, say hi and then watch a movie together; go to the zoo together (if your PALS is mobile) and look at the animals; watch a free concert in the park; whatever.

I do wonder if your kids in particular won't end up with some long-term regrets if they look back after losing their dad and realize they missed out on time with him, as well as undoubtedly disappointing him.

And I agree with Kathy, if you aren't getting any support from friends or family it's even more imperative to line up other support. These forums do help, but you really can't get through this without actual in-person assistance. Wishing you success in creating a team around you.
 
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Anne Marie,

I'm praying for you. I know how hard that is when friends disappear. Mine did too. One thing that helped me was getting some counseling/therapy. You can to it on-line, facetime. It is totally worth it.

Hugs
 
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Anne Marie, I am sorry this is your experience. I'd add to Laurie's excellent advice, start by asking friends and kids for one small, specific, non-threatening thing. "Can you pick up some toilet paper for me next week? Text me when you are in the driveway, and I'll come out." Or ask for a visit with parameters. They might feel more comfortable with details in place. "Dad is awake from 11:00- 3:00. Can you pick up lunch and join us for 20 minutes? If you are only able to drop it off, I understand."

My favorite line from a (good?) friend was, "I don't do wheelchairs." It still makes me laugh. Hope that works out for her!
 
I asked my husband's brother and wife SIL to bring up the gifts at funeral mass. They said no.
"We dont handle funerals well." So I brought up the gifts (bread and wine up to the altar) with our daughter. In my view this is just selfish immaturity. But, i was not surprised they said no. It's all about them.
 
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