The Lonely Burden of Not Dumping In.

[Thomas933]

Hello Everyone: This is how I basically handle most crisis in my life:

How not to say the wrong thing - latimes The gist is, draw a small circle and write the person at the center of the current crisis in the center ring, then draw another ring and write the names of the people most affected in this ring...keep going until you have each layer of people. Close family closer to the center, casual friends towards the outside. This is the rule: you can complain, rant, vent, cry and wail all you want...but only to people in an outer ring . If someone is in a smaller ring, you can only support. Support in, dump out. It's a great thing to share with people, too.

I am struggling sometimes with this one. My husband was diagnosed in early Dec. and we are doing okay. We are managing it all as well as can be expected in my opinion. But, I am so sad for him and it breaks my heart to see him suffer. He is trying to be brave and keep it all together. It guts me to see him struggle. All is want to do is take his mental and emotional pain away. But, I cannot justify "dumping" my sadness on him. So, I suppose what I feel is lonely.

I am lonely in it even though I have wonderful friends who would listen for hours to me cry and wail. But, I feel like he is the only person who can understand the depth of my fear and grief at all of this. But, I'm not going to put it on him...he is dealing with enough.

So, this is a dump, I guess and a question: How do you guys deal with the loneliness of this?

 

[Katalin]

Wow Thomas, this came at just the write time: I'm reading your post through a veil of tears. I'm breaking down right now with sadness for my PALS, the loss of my dear sister, and feeling overwhelmed about BiPap settings, the start of wee pressure sores on the tops of my Mum's toes, the fact that she's having trouble with her food, the homemade Slippery Sally sewing experiment went pear-shaped and doesn't work, and in general, I feel like I'm overwhelmed. For the moment.

I love your idea of keeping things out of the inner ring, moving it up to the outer ring. I agree. Its a good visual reminder...Thanks for sharing this. You ask how do we deal with it? It is lonely. It does feel like it's most on my head. If I share it with someone else, I just feel like I'm droning on about a laundry list of heart-aches, and it doesn't really help me to relive all the details, and I think it's hard on the listener: they can't help too much. I'm also careful of going on in detail to people younger than me...do they really need to hear about the grisly details of looking after a loved one with some hard disease? Maybe they can stay light and breezy for a while. And talking about this with some outer-ring friends at dinner last night, it's a real wet blanket...and it didn't make me feel any better. I think in future, I'll just keep it vague.

It's a great thing to have this forum. I think the answer is, I have a great husband who supports me by making me dinners and looking after some of the household things for me, I have a good doctor I can talk to, she's in reserve. The rest is the good people on the forum, who I can say anything to, and know it's okay.

 

[KarenNWendyn]

Great topic, Thomas. Several thoughts from my perspective as a PALS ...

The model of “support in, dump out” is interesting. But I see the situation as being more dynamic. You and your loved one are going through this journey together, though each in a different way. There are times where you’ll be caregiver/patient and the model of support in, dump out will apply. Then there will be other times where you’ll be loving partners and soulmates who will feel comfortable sharing everything with one another. And then there’s everything in between.

My advice would be to acknowledge that this pendulum swings back and forth and all around, and to see it as fluid rather than absolute, taking some comfort in knowing there are times when it’s easier to share more equally and intimately and times when it’s not.

During those times when you don’t feel it’s appropriate to share your frustrations with your PALS, it’s good to have support groups (including this forum), close friends, and maybe a counselor, where it is safe to dump/ vent/ rant.

Then there is the lonely burden of not dumping out.

I think everyone is at the center of their own grief circle. When I told family, friends, and colleagues about my ALS diagnosis, it occurred to me that each person who got the news had to process it their own way, whether they were immediate family or an acquaintance. I found myself needing to be sensitive to their processing and the nature of their relationship with me.

Sometimes I don’t feel like burdening my CALS and others with all the details of my misery and concerns for fear it will burn out my CALS (who has her own sh&t to deal with) and drive my friends away. So that’s the lonely burden of not dumping out.

 

[dldugan]

We have a great Chaplin at the ALS Clinic in Indianapolis. I am not a religious person, but this Jewish Rabbi also gives CALS/PALS relationship advice. His advice is to discuss the problems, differences and other feelings. My CAL is not quite able to do this yet and it is sometimes a problem. My advice is to be open and honest about your feelings and your relationship. Things hidden can fester.

 

[Narrowminded]

Thomas I walked the road of CALS for 14 years. Some of those decent years, some extremely hard. During that time I found that never expressing to my PALS how I felt wasn’t always the best approach. You have to remember that the entire immediate family and some friends, but especially the main CAL is dealing with ALS even though it’s their PAL with the DX. I had to explain that to my DH. Yes, he was the one in the bed, on the vent with the DX, but didn’t mean that it didn’t feel like I didn’t have that exact same DX. However, I also told him, that while it was impossible for me to know exactly how he was feeling, it was also impossible for him to know what I was feeling. And just because I wasn’t in the bed, it didn’t mean I didn’t hurt or my life was all sunshine and roses.

Trust me, as this disease moves forward, your husband will probably become more and more self centered and if you don’t let him know it’s bothering you, he won’t even consider that a possibility. While I didn’t do it often, I did break down in tears. Mostly when I felt like he thought I wasn’t doing enough or doing things right. I also had times when I hollered as well. You need to be honest with him.

Hugs as you muddle through

 

[diagnosed2016]

This is an interesting concept. Personally, I have found that is a refreshing relief to have an outer ring of acquaintances who don’t even know of our situation. It’s nice to feel “normal” because once everyone knows I feel like it’s always on people’s minds when they see me. I might just feel like that because it’s always on my mind, who knows? With my PALS, I think it’s important to continue our relationship in the same way as it was before- if something is bothering me I talk to him about it. I’m not going to walk on eggshells, that insults him as an adult and also devalues me as the partner.

 

[lgelb]

I don't see it as "dumping" sadness, but rather acknowledging it, whether to the inner or outer ring, or your PALS. You may not disclose everything to everyone (same as always), just like even pre-ALS, you didn't tell a stranger on the bus about your marriage, but you should always give yourself permission to disclose whatever makes you feel better, that someone else is willing and able to receive. A good deal of the time, that will include your PALS.

Otherwise, you are consigning your relationship to "caregiver/patient," which is far more lonely, to your point. For those here whose PALS have been affected by FTD, for example, there is no choice in that status shift, but as long as there is, nourish both facets of your bond.

Best,
Laurie

 

[Thomas933]

I agree that I shouldn't keep things hidden and I need to find a way to express what's going on with me and be honest with him about how scared I am, how sad I am and how much the thought of losing him hurts me to my core.

As with any relationship, it's complicated -- we will have the same fights we have had since we got together. It's just trickier to navigate. But, I hear you guys -- thank you.

I hope that everyone here (including PALS) knows they get to dump in to others -- I hope you have that support and I hope to be a support for some of you sometimes.

 

[wishmobbing]

Interesting visual rule. I myself am not much of a fan of it. Marriage/long partnership is about being there for each other in every scenario. My PALS caught a lot of my grief and I don't regret dumping it on him. He was afraid of not being much use to me as a boyfriend early on and my reassurance to the opposite included him listening to me and keeping my feet warm.
Thomas, I hope you find a way of dealing with this that leaves you less lonely. And maybe being open yourself you'll allow your husband to not be brave all the time. That is lonely business, too.

 

[Thomas933]

I'm so sorry for you -- its a lot.

 

[Thomas933]

Just want to say thank you and I did share a bit more last night with my husband. We have prided ourselves on being self-reliant in our lives so this is a new role.

The comment about not being just patient/caregiver hit home -- I don't want that. I still want a marriage and your comments made it clear that we could be headed in that direction if I only provide him support but do not ask or expect it back.

Kaitlin - I'm sorry you were having such a tough day. Hope today is better!

 

[KarenNWendyn]

I think one of the things that makes this so hard for both PALS and CALS is that these are uncharted waters. The model of being in an equal relationship of partners/ spouses is established, and couples need only put their own spin on it.

However going back and forth between being equal partners of a couple and being caregiver/ patient is much less defined and raises so many more variables. We create the rules as we go, and they don’t always work.

How much do we share, when are we allowed to complain, do we risk offending or alienating the other person? These are all difficult questions.

For many conditions which are not as overwhelming and comprehensive as ALS, it may work best if the daughter can just be the daughter or the spouse can just be the spouse, and hire someone else to do the caregiving. But since ALS eventually overtakes every aspect of a person’s function, it’s not so clear cut.

I hear you Thomas. We’re all swimming these waters together. I guess we each have to wing it and figure it out as we go. Lots to think about.

 

[ThisPresentMoment]

As a family, (Mom CALS, Dad PALS, daughter me), we try to bear one another's burdens. Each of us has both good and bad days. Each of us grieves and comes to accept things in different ways. We try to help each other through. Of course, we all lose patience, get frustrated, end up in tears at different times. That's OK. There are times that Dad needs to hear that caring for him will never be a burden. There are times that Mom needs to hear that she is a wonderful caregiver. I try to watch for those things and say them out loud. There are times when I have to say, "I'm doing the best that I can." and accept that.

My husband is not as directly involved in caring for my Dad. He has really been amazing in supporting me, in agreeing to leave our home for now, etc. He gets the largest portion of what I dump.

Friends are great support, but I want to hear about what's going on in their lives too. The day by day fight with ALS is so all consuming, (and it has been fast for us - one year since diagnosis), I want to hear about the world outside of this bubble.

 

[Turtals]

Hi Thomas,
Though we received my husband’s diagnosis two years before yours, every time I read one of your posts, they hit so close to home and touch on exactly what I have felt or been feeling.

Shortly after my husband's diagnosis, his cousin shared the same Ring Theory article (also this one, an interview with Sheryl Sandburg on building resilience).

Though it very much resonated with me, as your post has highlighted, it needs some wiggle room, especially when the spouse is the center ring.

My PALS is my husband, my soulmate, my parenting partner, my go-to person for everything from the mundane to the major. He knows me better than anyone and I know him better than anyone. So, as others have said, I think it is fair to “dump” in…at least within reason. And I've also felt the loneliness of dumping out and, though its great to have such amazing friends to listen, I hate feeling like a person who is always complaining out.

In addition to the challenge of where to “dump” fear/grief/sadness, two other “dumping in” challenges encountered as we have travelled this journey:

Putting aside all the ALS-related crap we are all facing, there is all the “normal” life stuff that is still happens and which can also really suck at times…teenagers to raise with all the drama and parenting challenges they present, extended family issues and dynamics, household maintenance (he used to do all the work around the house or at least know how to get it done, now its all me…though I had a good teacher!), etc.

I’ve had well-meaning friends tell me not to burden my PALS with day-to-day issues / complaints, “don’t upset him; he is sick and should not have to worry about that”. But my PALS has always been an involved husband, father, son, etc and he has always been my/the whole family’s go-to person for everything. If I don’t go to him, it ALL falls on me which is unfair both to me and to him - it undermines him as a partner and, takes away who he is as a person.

He may no longer be able to walk or talk or move but for as long as he is alive, I want him to be able to be the spouse and parent and son and friend he always has been.

The other big challenge is when people “dump in” to me. This can range from friends who struggle with his diagnosis and need to process it by telling me how awful it is to see this happening to him, the nicest guy, and how it is so much worse than X or Y disease.

Or, at the extreme end, are issues with his family who are obviously distraught but really don’t have any idea about what we have going through, but they fill in the blanks by misinterpreting things and then attack me. Puts me in an awkward position since I understand their pain and need to find a place to put it but don’t deserve to be their punching bag….my only options are to either “dump in” to my PALS or suck it up.

 

[Thomas933]

So much of what you wrote hits home with me too. When PALS is a co-parent, I think it poses different challenges. My husband and I are truly partners and have lived that way since we started dating. I have a difficult family and we decided long ago that I (we) didn't need them because he is my person and I am his person. He is my family....we had a deal. And now, well, I am most likely going to lose him 20-30 years before I thought I was. That is a hard reality for me and also, as I have said, breaks my heart. And, I am so sad for him as he deals with his reality that he is not going to be here for a future we have worked so hard to build. I am working on being strong for him when he needs it -- he needs me to be strong right now. And, I will be... but there does need to be a time for us to mourn what we know we are losing. We are both realists which is good and bad.

Putting aside all the ALS-related crap we are all facing, there is all the “normal” life stuff that is still happens and which can also really suck at times…teenagers to raise with all the drama and parenting challenges they present, extended family issues and dynamics, household maintenance...

-- I completely agree with this too.

But my PALS has always been an involved husband, father, son, etc and he has always been my/the whole family’s go-to person for everything. If I don’t go to him, it ALL falls on me which is unfair both to me and to him - it undermines him as a partner and, takes away who he is as a person.

-- This is good to remember...

He may no longer be able to walk or talk or move but for as long as he is alive, I want him to be able to be the spouse and parent and son and friend he always has been.

-- This is my goal too.

The other big challenge is when people “dump in” to me. This can range from friends who struggle with his diagnosis and need to process it by telling me how awful it is to see this happening to him, the nicest guy, and how it is so much worse than X or Y disease.

-- This is where the ring theory has to come in -- No one should dump into you...you are in the center ring, too....

Or, at the extreme end, are issues with his family who are obviously distraught but really don’t have any idea about what we have going through, but they fill in the blanks by misinterpreting things and then attack me.

-- Awesome, just what you need -- I'm so sorry.

Puts me in an awkward position since I understand their pain and need to find a place to put it but don’t deserve to be their punching bag….my only options are to either “dump in” to my PALS or suck it up.

-- Yes, you do understand their pain but geesh, you do not deserve this, at all.