Radical acceptance

[Nikki J]

This was a new term for me although I try to practice it. It is related to mindfulness and the main theme is not fighting what we can not change or as the saying goes accepting it is what it is. It doesn’t mean you have to give up. If you want to try a supplement or a trial or whatever it isn’t inconsistent with the idea. It is more like the why me and denial issues which can take energy and cause more distress. I think this is particularly hard in the period around diagnosis understandably because of the grief process and somewhat unavoidable. Still working on radical acceptance will free you up to enjoy the abilities you still have and not sap too much energy with things you can’t change.

Of course the concept works for CALS too. It would also help our Cihals visitors. If you are interested there are plenty of links on google

 

[KimT]

Every time someone new gets diagnosed, it seems like I re-live the experience again. It's hard to be an extreme empath and not feel hopeless for fellow PALS.

As for myself, I lived a healthy life until I was diagnosed at 60 so I just look at it like I know what I'm going to die from.....although it's not a guarantee, especially since losing younger friends to Covid.

It's a good topic. For me, grief comes and goes. My only close relative is a brother who has advanced Alzheimer's. He is in a VA nursing home and has to transfer by Hoyer when they decide to shower him. It breaks my heart but, at least, he forgot I have ALS.

 

[Nikki J]

it isn’t always easy for sure. Your brother’s situation is an example of where mindfulness intersects this. when you visit I am sure it is very hard to see him like that and would be all too easy to spend time thinking of the sadness and unfairness but radical acceptance emphasizes living the moment so cherishing the visit and whatever happens. It is hard work . I am a work in progress definitely

 

[affected]

I've always talked about acceptance, and how important it was for me as a CALS so that I made the most of what we had while we had it and prepared for all to come.
Yet it is a moving target and something you practice and work at. It isn't a place you arrive at and 'oh good now that's done'.
But understanding that aspect of it means that when stuff hits, you know you can move back to that place and start being mindful again.

 

[KimT]

One of the things that gets me out of my head is meditation. I do some every night and, sometimes, during the day. I even meditate while swimming in the pool if I'm alone. The time flies by and I stay in the present.

I also find socialization helps me stay in the present as long as it doesn't drag on. I try to schedule visits and events that are no longer than two hours.

Nikki, every time I visit my brother we end up laughing hysterically. I have no clue if he understands why we're laughing but he always grasps my hand like a vice and we just start laughing. We always laughed a lot when we were together so I do think he knows who I am.

 

[Nikki J]

That is wonderful Kim

 

[Tomswife]

I accept this day as a fragile gift. I try not to think about the future. I hope for easy slow ALS. A silly hope since there is no such thing. The DME planning forces me to plan but i tend to distance myself. I will need this equipment soon. We will need this help soon. But these concepts are abstract now. I dont think of Tom failing to that point of need. Or I try not to. Right now I am his only caregiver. I don't want to pass the torch, but I know I will need to. So I live in the present. That's all I can handle.
The ramp was installed today. It takes up most of the front lawn. Our grandchildren had fun running up and down.
Tom can no longer speak. I miss his voice. And I know very little of what he is thinking and feeling. He says he is ok. Lets hope so.

 

[affected]

I think, for a CALS, that acceptance really helps to get good at anticipatory planning and preventing crises.
Tomswife, some equipment can take days, weeks, even months to organise. Muscles can fail one at a time and suddenly tipping points are reached and overnight something becomes impossible. These are the kinds of crises we can help avert by having things ready in advance.
This also can help to go into the state of mindfulness and acceptance, and allow you to live more in the day, knowing that you have some things in place. We can't know anything that is ahead really, but what we can allow for can really help.

For PALS this very thing can look quite different. I think when both PALS and CALS are in this kind of place, they are able to make the most of every day.

Kim it must be wonderful moments of joy to feel your brothers grip and laugh together. Beautiful escape for you both. (or are those the real moments in life... )

 

[Marieb425]

My PALS had radical acceptance at a pretty early stage, but I don’t think he knew the term and I didn’t either. We were talking to a therapist about our children and she said how my husband described having ALS is radical acceptance. It’s taken me longer and I guess I’ve accepted it (I know I’m not angry anymore), but also I guess I sometimes feel hopeful in a way that might not be realistic. I don’t know if that makes sense, I’m tired today. I just go one day at a time.

 

[Mary2]

Marie, I can see how you would be tired, working, worrying about your husband and caring for the children. That is a lot to accept at once and a lot to have on your plate.

 

[MJT]

Marie, I can't imagine having young children to care for besides my PALS. Tomswife, why do you think you will need to pass the torch? Maybe I'm being unrealistic to think I can do this until the end. Sigh. As far as radical acceptance, I have gratitude. That helps.

KimT, your description of time with your brother is magical.

 

[MJT]

Also, Nikki what is a Cihals?

 

[Nikki J]

Could I have ALS Formerly called DIHALS Do I have ALS. those who post in that subforum

Marie I believe you can have radical acceptance and hope. Sometimes people spend all their time and money chasing “cures”. They probably don’t have radical acceptance. But if you hope his meds help, maybe hope he gets into a promising trial ,hope things in trials now will be approved all that is very reasonable. Along with hoping for slow progression and that you can have many happy times ahead.

 

[Tomswife]

I just meant i have no help now. I am realizing i should have help showering him. And when needed night time help. Now he has a buzzer that rings upstairs in our bedroom. I will always be his caregiver.
I meant like a relay torch.

 

[Mary2]

MJT ...if you have enough family around or hands on friends you might be able to do it until the end.
Also if you start the evening routine early enough and get into bed early enough yourself. My son is 2 hours away, our friends are older, and the rest of the family is up North. I wouldn't be able to leave the house if I didn't have paid help.