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KatieNBoyd

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An interesting occurrence has me reflecting on my day. I have been taught to make my amends promptly when I am in the wrong. But, I have also been taught not to have to bow down and be stepped all over. So, I am not sure how or if I will properly word this in order to make myself or my question clear but here it goes...

Also, I realize my PALS and I have not been on this journey nearly as long as some, though longer than others and I appreciate any opinions or comments you all have.

I am my PALS sole caregiver, as well as his spouse. I am, at fault, one of those "people pleasers" and always have been. I have noticed that I am aware of others feelings (good and bad, as well as happy or sad) particularly individuals who are in the immediate family (children (we have adult children with one teen at home), in laws, close relatives and such). I am well "aware" of what they are going through, as it were. I am supportive and caring when they are short sighted, forgetful, say hurtful or ignorant things and are even angry. I usually am able to just brush it off.

My PALS and I(and our teen) are living this ALS situation pretty well I must say all things considered. Having had the world that we knew change on us, he and I are doing good. We have not had any huge or terrible fights or meltdowns.

My question is why is it that I am not allowed to have a bad day? Why is it that I am not allowed to be or say hurtful things to others? Why am I not allowed to be forgetful?

In the past 10 months I have, on top of this ALS beast that we fight daily, remembered anniversaries, birthdays, picked out and wrapped every Christmas gift, mailed every birthday card, sent thank you notes, paid bills that no one else would pay, kept track of every bill and doctor appointment, met with insurance for the family, been the sole driver, house keeper, sole bread winner, cook and parent. But TWICE I have lost my temper with others (not my PALS or teen) and both times I was called on it immediately by family and told I was thoughtless, mean and hurtful. I was told "if you would only have talked it out first, everyone would have understood".

I don't get it. If there were just a nurse that came in and did her work to care for my sweet PALS would I as a spouse/mother/sister still be able to have my bad days and it would be alright?

I get some wonderful help from friends who make dinners, take my PALS out occasionally and I get I get time to myself. Our teenager is a true blessing getting herself together for school, sports and such while still being a great help.

I am just hurt and very sad. I also have a tendency to take things too personally. Thank you for listening/reading.
 

ShiftKicker

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Katie-
I have no idea the pressure you are under on a day to day basis. It is very likely too much to bear. I am saddened that there are those in your life who are unable to see your struggle or still require you to care for their emotional needs without giving in return.

I am a people pleaser too. It is a learned way of being. I learned it from an early age as a way to deflect negative attention from the selfish and unpredictable people around me (you can't pick the family you were born into!). I grew up thinking that I was a terrible person if I ever said "no" or didn't make things easier for the people around me. I realized there was an imbalance in expectations- but only when I was no longer able to care for others in the way they were accustomed. Family started getting a bit frustrated with me because patterns had changed and people didn't know how to respond. A couple family members still resent me because I can no longer put their needs ahead of my own. My counselor has helped me in this immensely by helping identify the issue (always guilty I wasnt doing enough) and allowing me to recognize that others' negative reactions may be out of their own selfishness and not at all my responsibility. While I hope you do not have the same type of people in your life, I hope, if you do, that you know it is not you, it's them.

You may have lost your temper, but you deserve understanding. Do the people in your life know, REALLY know, what you are going through? I don't know if you are able to talk it out, but it sounds like you need people to understand and not hold you to the same pattern and expectations as before. You are a caretaker in need of caretaking. You are doing the work of multiple people and are doing amazing.
 

Atsugi

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Katie, I've heard this problem from several CALS. I personally can't relate because I've never been sensitive to anybody. I just have a very low EQ, and can never tell what people are feeling, or how I might accidentally hurt someone.

But I did learn one thing that might help: When you bend over backward, you lose your balance.

Before you decide to tell your family "What about me? Can't I have a bad day?" you have to decide if you can keep the relationship healthy afterward.
 

lgelb

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Mike, I'm sure Katie was not intending to kvetch to her family or friends. Her question is rhetorical.

Katie, when someone hurts your feelings, you have the absolute right to say, "You hurt my feelings." You may choose not to say it in a family context, as to your teen or husband, but it remains your right and I believe they know when you omit it anyway, because they usually however deep down know what they did.

It sounds like it was someone else who hurt you recently, and if it is someone that needs to know that, to better support you in the future, again, you have every right to say that. A family member or friend who can't handle that won't be able to handle much of what's coming, so you might as well know now.

I'm sorry that so many people are so wrapped up in themselves that they can't see your vast, deep forest and instead snipe at tiny trees. I can tell from what you write that you are a wonderful wife, mother and caregiver. Some people in your circle may get clearer vision over time. You can only try.

Best,
Laurie
 

gooseberry

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Katie, The way I worked our journey was if it wasnt helpful or gave us joy we didnt want it around. I sent gifts for godchildren and that is it. Online services were used for others. The blowback I did hear was how impersonal things were. I told these people to come live my life for a week, then judge. Because if you come, I am leaving so you get it. No one offered to come around much.

Now my 80+ year old contingent did help and 2 family members from a 1k miles away.

YOU ARE ALLOWED A BAD DAY. It is just hard to have when you have so much to be done. My sister recently came to see me. She couldnt believe what was done in a day. I told her this was nothing compared to before Steve passed. People, family, friends, have no idea unless they takeover and provide caee, cooking, cleaning, all the things we do daily. I would say if one person will help, let them. Someone needs to see.
 

Nuts

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I'm another pleaser who has worked hard at changing myself. It's NOT all my fault and it's not my job to care for everyone all the time. I have found that people get very upset when the caretaker among them steps out of the pleasing role and acts like they do. It's much more unsettling than having someone go off who does it all the time.

They just don't get it if they aren't there every day. My sister just spent two days with us and said she had only thought she understood. She noticed the many things I do that she never thought about needing to be done. Those people need to be brought into your world!

I can't advise on how to handle these people in your life, but know that I DO understand. Vent away!!!
 

KatieNBoyd

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You all are wonderful. I had to laugh out loud. You all have hit it on the head.

I wasn't able to see what was so "wrong". The key factor (I was told) was that I did not put something in a "positive way".

Our teen is suppose to go on a school trip in June (I am suppose to accompany her) She worked all last summer to pay for it and it was paid for and arranged well before my PALS diagnosis. I have asked his 3 adult children to let me know if they would be able to come an stay with him for the 9 days we are gone. Anyway, I brought up this topic several times (Thanksgiving, Christmas, Easter when they came by) I never got a response from anyone. I put it out on the line the other day plain and simple. Explaining, this is what we need, this is how things roll, this is what is expected.

Two children live and work within 45 minutes of our place, are in the medical field, and they drive right by our house on the way to visit, and spend time frequently with their mother as well as go on little trips, concerts, skiing with her. I did point out that things around here not as fun, but we do have a boat and a camper and maybe they all could do something with it.

I got a phone call yesterday saying that they had it covered. They didn't know that I needed to know anymore that that. I had an email from my PALS sibling saying I probably didn't word it nicely and I should have taken a better tone. Geezzz..

My not so nice beast in my head wants to take all the notes, form, lists, numbers, and other stuff that I use to make life for my PALS easier and hide them. Let them fend for themselves (after all they are adults) and then tell them "I didn't know they needed to actually have that kind of thing". Yes, my beast within my head is named Snarky. Then I look into those beautiful eyes and sole of my sweet PALS and know I could not do that to him.

The only thing that still gets me is, that they all continue to say, "Well, we were hoping to be able to remember these last times spent with our dad in a positive way when we do this in June". Well, were are they today, yesterday, on their days off? It is obvious on their FB, Snap chat, and phone calls that they are driving right by our house on the way to their mother's to do things! Can't they come or stop by and make those memories now too? WHAT are they waiting for!??

Thank you Shiftkicker, your input on changing for myself is a good thing.

Mike, Thank you. Yes, sometimes we bend and break too. I will be careful of my balance.

Laurie, your insight is wonderful, Thank you for your thoughts to redirect me.

Gooseberry, It is so nice of you to continue to help with all your things too.

Nuts, Yep I am going to bring them in. Yep, they are going to have to deal with this reality.

Thank you all again for holding me up. Love you all!
 

affected

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I'm late in this, but you have had great responses and you are climbing over the mountain they created. I love snarky! We all need an internal snarky and devise all the mean things snarky can come up with, knowing we would never actually do them. It's a healthy pressure release valve!

I had all the same issues with Chris's children. I was 'told' that if I could not be positive then a daughter wouldn't even come to his last birthday dinner. My 'negative' was my disappointment that she backed out of taking him out that day for his birthday, by text messaging me late the evening before, and particularly for my comment that he would not get in or out of a car much longer. That was 'negative' apparently. Of course it was plain truth.

I decided that I liked the motto - if you aren't going to part of my solution, you sure as hell aren't going to become part of my problem!

I'm glad they 'have it covered'. It will do them all a lot of good, regardless of how many instructions you have, you and all of us here know they are going to find it very hard to be left working through them. Won't matter if they never admit to you how hard your job is, or how awful the disease is or anything. Don't count on anything from any of them.

That said daughter above did come care for Chris just one day, many months earlier, when he was still walking. From 8am to 5pm she gave him one, yep one, peg feed, and went out for a few hours with her sister leaving him alone, and was asleep when I got home.

You stick to your own instincts. Yep try and word things well, but if you don't well they need to deal with it, you have more important things to deal with than their feelings!
 

Margesmn

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Katie,
From a PALS, thank you for all you do to take care of your husband. I watch my husband run, run, run 16+ hours a day, working (from home) and helping me, our teen at home and taking care of our home. It is exhausting. Many kudos to you.

It's tough with family, as everyone deals with the diagnosis differently. I have some who are kind, understanding and helpful, some who have stuck their heads in the sand and some who have just stayed away. You are only responsible for you and your actions. If you feel you owe an amends, make it-make it for you. :) Remember to be gentle with yourself and do things to take care of you. You are important too and deserve to be cared for.

Thank you and all of the CALS. You are all super heroes in my book.
 

gooseberry

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Katie, I hope things are better. One thing my brothers in law did was come for a weekend. Just an extra set of hands, and someone to stay up with my husband was priceless. It let me sleep, and have some help. My neighbors were great.
 
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