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trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
313
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
I am having a difficult time dealing with my anger. My DH was DX 8/07. With the exception of his sister who lives in another state, we have had absolutely no family support whatsoever. Both his adult son and his brother live an hour away. I have asked for their help in a very clear manner. The brother told me he has a bad back & will tell the son to help. The son won't even return a phone call or email.

I am so disgusted! The son calls once every 4 months or so & the brother never calls. This is of course, very hurtful to my DH. :-(

My own father, who lives 3 blocks away never calls and stops by every 3 months or so for 10 minutes at best. In all this time he has NEVER asked me if there is anything he can do to help.:x I think he is mad at me because I have refused to have anything to do with my mother for the past 2&1/2 years. I am no doctor, but I would just about bet my bottom dollar that she has Bipolar disorder. Which wouldn't even be an issue if she would get some help! But as it stands now, she is just too unpredictable, nasty and abusive. I have enough to deal with without that!:roll:

I am on antidepressants, seeing a therapist, and getting out and walking for exercise, as well as journaling when I can find time. I just want to scream sometimes. What the h*ll is WRONG with these people?!:twisted:

I know there are other CALS dealing with this also. Any suggestions are welcome. Thanks for letting me vent.
 
Linda,

I'm sorry you are having to deal with what a lot of pALS/cALS go thru!

You can't make them understand or help.

I've given up on my husband's family and if they would like to know about their brother or son they can call or come over. I'm not going to call them for help, as it seems it is too much of a burden for them.

I'm so very sorry you have to go thru this. It really hurts, I know.

Just know that we cALS are all in this together and thinking about each other.

When I read about pALS that have such caring and giving friends and family, I wonder what world I'm living in.
 
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Thanks CJ. I know what you mean. (sigh) I sometimes wonder what planet I'm on too. The thing is, once it is too late, there will be nothing they can do, and they will have to live with their decisions. Well, to heck with them all! The three of us are going to our annual church picnic tomorrow (catered!) and we will have a great time!
 
I hear you!

Linda,

My brother is pretty callous, too, as far as I'm concerned. He can never just hang out with my dad. If he comes for 20 minutes once a month and we aren't exactly in sync with his schedule, he gets put out. They've always gotten along, there's no reason for it. No one expects him to DO anything. I can't DO anything (physical) either, but I go to meals and feed him, talk to him, help him drink, talk about old times, his books, whatever. My dad is the most cordial, pleasant guy in the world. I want to scream, yes, it's sad, but #**@ grow up! It's not about you, it's about him! He needs you! You live 3 minutes away from him and he's not going to be around much longer! :roll:

Try not to lose your health over it, Debbie
 
Dear Linda,

I hope you begin to feel better getting some help for "you". We put soooo much time and energy and LOVE in taking care of our husbands and their needs that we tend to put ourselves last. Do we have a choice? You have people ALL the time saying to take care of your yourself, "you need to get rest", but what are they really doing to help?

I know how you feel but we cannot change them. I have learned to change "how I
react to them". Most of the time, I ignore comments but the ones that stick I pray about! I pray alot! That seems to be the only thing that helps "me".

Just know that we are blessed to come on this site and voice our frustrations, ask for suggestions and get some great ideas from the most wonderful people. We are all dealing with the worst possible disease and just need some Love.

Take care Linda,

Patty
 
Linda,

I feel for you, I would be frustrated too! Do they all truly understand this horrible disease.
Asking for help doesn't always mean doing physical things... And you shouldn't always have to
ask they should just want to do it and don't let them give you that s**t about it is hard seeing him like this.
Remember what goes around comes around.

hang in there,
 
Hi Linda

I echo the words of Crystal - my Mum has 4 children and has been there for us through our childhood and adulthood but only 2 of us are supporting her now.

I do believe , like Crystal , what goes around comes around but sometimes it seems a long time to do so.

I think what puts it all into perspective is that you can live with yourself , knowing you have done your very best. Maybe you need to stop trying to get them involved , for a little while at least so that you can focus on yourself and the person you are caring for.

There is nothing like a good rant , to let off steam !

kind regards

Flowerpot;)
 
Hi Linda,

I know you understand that your anger towards your family is not really helping you. But sometimes it helps to be reminded. It was said a couple of times in here, we cannot change other people. You also know that a time will come when you will be very happy and at peace that you did all you could. That is a lot to be thankful for.

I worked for a long time in a state state institution for young people with emotional impairments. We had a couple of sayings that sometimes helped us get by: "She/he are no better than they ought to be." Meaning they are doing the best they can even if they're driving us crazy. Another one was, "Can you imagine what it must like to be like him/her." Our purpose was to build as much empathy for those people who were difficult to understand and whose behavior was hard to accept. We did the best we could to help them as individuals, but in order to deal with them on a daily basis we could not "own" their behavior and had to let it go.

I hate to see you loose your peace with the anger that they can create in you. I have to remind myself several times a day not to be angry with my sister as she is so self-absorbed that in two years since my original diagnosis she has never me how I feel. She is a cancer survivor and has many issues to deal within her own family but at times it really hurts my feelings.

I know your situation is different because you do need help on a day-to-day basis. I am wondering if you could contact a church, University or other institution that has volunteers. Many students in medical fields need to spend time volunteering. Others are just looking for places where they may be needed. I hope and pray you soon get the help you need. God bless you, Peg B
 
Thanks Peg, for the insight!

I'll go with the "Can you imagine what it must like to be like him/her." LOL
 
Hi Linda,
Your post caught my eye. I'm not a PAL or a CAL (just a "here and scared' person) so I hope you don't feel I'm out of place, but I do have a somewhat similar feeling.....albeit in an entirely different sense. Here is the very short version . . .I hope it helps even a little bit:

When my son was an infant, my husband had a job that required about 70% travel. One time I got pneumonia and was very sick for >2 weeks. In another later instance, I had emergency abdominal surgery, and again was greatly incapacitated. ALL of my family lives within no more than 30 minutes of my house, including my own mother. Do you know who came to help me? NOT ONE OF THEM. And the most frustating part? We all get along! It's not like we had any family-fueds going on, they just wouldn't / couldn't help, even after I got to my breaking point and specifically called to (beg?) for assistance. Nope! I have to say it has changed my relationship with them forever.

Someone said to me years, and years ago, "People are where they want to be". It's so simple, and yet so true. If they wanted to be there, they would. (personally I find it completely unacceptable to not help you and your husband, sickening really). My best advice? Easier said than done, but let it go. If you stop hoping that they'll help and just pretend that they live on the other side of the Earth and can't, then you'll be better off for it. I don't know a lot about the care system in your area, but maybe if you lean on that system, paid caregivers or respite folks, or even just a cleaning lady, SOME type of relief for you that you can count on 100%, you'll be better off. That's what I did.

I just wanted to let you know that I do have a window into how you feel, and it is so HURTFUL to be in that position, you probably just get the urge to go and kick down their doors screaming at the top of your lungs, "WHAT THE HE! IS WRONG WITH YOU PEOPLE AND WHY DON"T YOU CARE?!?!?!" But believe me, it would only make you feel worse. They're acting very calous, and cruel, and I don't know why....but I too believe that what goes around comes around.

I hope you're having a better day today -
Take care,
Suzann
 
Thank you

Thank you everyone for your replies. I am doing better today.:smile: I don't usually let the relatives get to me, but I think it was just that yesterday morning I was driving up the street to take my daughter to an appointment. We saw my father walking back from the convenience store (he walks just about past my house every Sat. morning when he goes to buy his lottery tickets) and he saw us & just waived like he had seen us yesterday. When in fact, the last time he stopped by was in June!

My hubby, daughter & I went to our annual church picnic today & had a great time.:smile:

The one good relative, Lenny's sister, called yesterday afternoon (divine timing!) and she & her family will be coming over from MI on the fourth & we are all going apple picking.
Should be a great day.

I really thought I was past the anger issues, but I guess every once in a while it still rears it's ugly head.:shock: I am working on getting to the place where I can feel sad for them since they are the ones missing out on whatever precious time is left.

Thanks so much you guys for understanding. :-D
 
hI lINDA,

I READ ALL OF THESE POSTS PERTAINING TO YOUR SITUATION, AND I'D SAY ABOUT 85%
OF US THAT POST IN THIS FORUM HAVE THE SAME SITUATION. MY HUSBAND'S FAMILY
DROVE ME NUTS WHEN HE WAS FIRST DX BEC. THEY ALL TRIED TO TELL ME HOW TO
TO TAKE CARE OF HIM; YET NONE OF THEM BOTHERED TO COME HELP. ALSO, OUR
BEST FRIENDS ACROSS THE STREET, THE WIFE BEING HIS FIRST COUSIN, GOT ANGRY
AT US FOR SOMETHING OVER A YEAR AGO, AND ALTHO WE APOLOGIZED, NOT KNOWING
WHAT WE HAD DONE OR SAID, JUST WANTING TO HAVE PEACE IN THE FAMILY, THEY
STILL DO NOT CALL OR WALK ACROSS THE STREET TO SEE HIM. THIS HAS HURT HIM SO
BADLY, BUT NOTHING WE CAN DO. SO, I DECIDED TO TAKE MY POWER BACK, AND NOT
NNOT ALLOW SELFISH, THOUGHTLESS PEOPLE LIKE THAT, TO HAVE THE POWER TO
DECIDE WHETHER I WOULD HAVE A GOOD DAY, BE ANGRY OR UPSET. THEY DO NOT'
MATTER TO ME ANYMORE, NOR DO OTHER'S ADVICE, BECAUSE WWHEN HE IS GONE
FROM THIS EARTH TO BE WITH OUR LORD, I WILL HAVE NO REGRETS, AND IF THEY
CAN LIVE WITH THEMSELVES AFTER BEING NEGLECTFUL OF FAMILY MEMBERS WITH
ALS, THEN NOTHING WE CAN DO EXCEPT PITY THEM.

YOU HAVE US, LINDA, AND ALTHO WE CANNOT PHYSICALLY HELP YOU, WE ARE HERE
FOR YOU AND WE UNDERSTAND.

JACKIEMAX
 
All I can say to this is ditto.......my family does not have much to do with us either.....I think alot of it is racial or at least from the beginning..........Now they all feel so GUILTY, but you know what I am a big believer in Karma................and boy is that a *****..........HHHMMM, just go with what you know..............You got us:mrgreen::mrgreen:

hugs,
netty

by the way Freddie is adopted and his son is also a musician and I don't think he can look at his Dad this way........He comes by for a few minutes once in awhile and lives maybe 15 minutes away Will go to band practice around the corner and not even stop by, the bad part is that Freddie knows this:x.........On the other hand his daughter turning 12 in December has taken care of him from the time of onset.......5 years ago.....She wants to learn trach stuff but I feel she is just to young for all that..........But she would.........Wonderful girl
 
I have to say I am kind of guilty of that "passing by" thing myself. I have a Sister in Law who lives several towns away and I reached out more to her when she needed me than my BIL when he was recuperating from surgery. He lives alone and I drove past there lots of times, like I do every day. It is easier to put it off when they are right next door, for some reason.
 
i TOO HAVE BEEN THO'TLESS AND NOT VISITED SICK FRIENDS AND FAMILY AS I
SHOULD, NOR TAKEN MEALS WHEN I KNEW SOME WERE NEEDED, BUT THIS HAS
OPENED MY EYES. OUR CHURCH LADIES TAKE TURNS BRINING THREE HOT MEALS
A WEEK, AND HE RECEIVES DOZENS AND DOZENS OF CARDS FROM SCHOOL FRIENDS (YES, FRIENDS FROM OUR GRADUATING CLASS OF '54) WHO HAVE LEARNED OF HIS
DISEASE AND CARE.

EVERY TIME HIS DAUGHTERS OR SON FROM CA. WOULD FLY DOWN TO SEE HIM,
WE WOULD REIMBURSE THEM FOR THEIR PLANE FARE, BUT WE ARE ON A FIXED
INCOME TOO, BOTH RETIRED, AND I FINALLY TOLD HIM, NO MORE. IF THEY CAN'T
PUT ASIDE ENOUGH TO COME SEE THEIR OWN DAD, THEY'D JUST HAVE TO NOT
COME. THEY NEVER SEND CARDS AND ONLY OCCASIONALLY COME, BUT WE HAVE
SOME DEAR FRIENDS HERE WHO LOVE HIM AND SHOW IT.

WE ALL KNOW THAT SOMETIMES FRIENDS TREAT US BETTER THAN FAMILY. YES,
I KNOW WATCHING A LOVED ONE GROW THIN AND WEAK, HELPLESS, ETC., BUT
WE ALL NEED TO JUST SUCK IT UP AND PUT THE PATIENT'S FEELINGS AHEAD OF
OURS. THEY NEED TO KNOW PEOPLE AND FAMILY STILL CARE.

JACKIEMAX
 
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