Old 02-10-2011, 10:52 AM #1 (permalink)
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Default SCREAM! Frustrations with brothers

Hi---My mom was recently diagnosed with ALS. She is in Indiana and I am in Texas. I have two brothers in their 50's who live less than 30 minutes from Mom.

Brother #1 is a recluse and has not held down jobs and really is a nice person but not someone that you can count on for any type of support.

Brother #2 married, 2 grown kids: Mom and brother's wife had argument (very petty one as they usually are) that resulted in them not speaking for about 6 or so years putting my brother in the middle and causing a divide in the family. Brother did not call or see Mom but maybe 2 times a year. within the last 6 months brother has resurfaced in mom's life and takes her dr's appts and calls about once a week and most recently took her for lunch and the grocery store. during his visits he proclaims how broke they are and how busy they are and etc etc. His two kids both in their early 20's have not even called their grand-mother or stopped to see her. Both of my brothers think that because I make considerably more money than they do and "have things" that I will incur all the costs and responsibilites as well as emotional care-taking and physical care of my Mom. Although I have NO problem caring for my mother despite our challenged relationship; she does have two other sons!

i get so angry when Mom goes on and on about how wonderful her sons are.....what? I can barely stomach a conversation with her about how wonderful they are to have picked her up and taken her to lunch.

I emailed brother #2 asking for his help to move Mom from Indiana to Texas and it was a very nice, loving, kind email and his response was "We will see"

Okay fine, I'll deal with that too.

Then Mom calls me and says my brothers can't afford to fly to HOuston to see her when she moves and can I pay for the tickets for all of them.....ummm my answer is a firm "NO"

I have barely had a realtionship with my brothers our whole lives (partly due to age difference, I am 36 and they are 51 and 52 and partly because of family dynamics) and now I don't want anything to do with them and I doubt I will speak to or see them after my Mom passes.

For now, she keeps asking me to get along with my brothers....excuse me? I am not the one with the problems; they are? Why isn't she telling them to get along with me?

Mom just makes excuses for them over and over again.....they don't have as much money, they are boys, they are busy with their own lives?

Ummmmmm, I have a full-time career and a full-time life but I still manage to be a normal, kind, respectful daughter/

All I try to do is just say "yes, I iwll get along with them" but I get so burned up everytime this discussion arises which is almost every day now.

I am so sorry to ramble on and on and on and on and on but I figure that the rant forum was as good a place as any.


Thanks for listening...
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Old 02-10-2011, 12:26 PM #2 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Unfortunately what you have described is fairly standard in most families. Don't be concerned about your brothers, do what you can do so you will not have any regrets later.

We are here to be a support for you however we can.
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Old 02-10-2011, 01:32 PM #3 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Joel is right - it happens in a lot of ALS-affected families.... ours too. My late husband's siblings were not of much help either. They live out of town - one just 2 hours away and only came to visit 2 or 3 times in the 3 1/2 years of his illness - one 6 hours away and would stop in every 2 or 3 months (often with less than a day's notice). They would empty a catheter bag once then act like I couldn't get by without them.

Even now after his passing, I am still so very angry with them.... I remind myself every day to "take the high road". It wasn't so during the last 18 months of his illness when he was completely incapacitated. I often let my husband know exactly how I felt about his family. The hardest part was that he too felt that they were the best thing going. I was existing on little sleep, trying to work, take care of the house, 2 kids, coordinate his care, etc. I seemed to get little or no credit from anyone - including him. My siblings weren't of much help either. At least they didn't try to pretend to be.

So many of us caregivers on the forums could go on and on about our own horror stories with relatives.

My advice is the same as Joel's. Take the high road. Do what you feel you need to do. I wish I had done more to keep my emotions out of it during those months. It's very hard to do. I may have to have contact with them one or two more times to distribute some of his belongings - after that - nothing I hope. Trying to live well for the sake of my sons is the best I can do now.
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Old 02-10-2011, 02:03 PM #4 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Good advice. Advice I need to take. It is so hard to keep my emotions in check. I'm afraid to take anything, because I might not be able to handle my husband physically. This disease is just so hard on everyone.
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Old 02-10-2011, 03:38 PM #5 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Do you or your PALS have any close friends who would help you? Not visit, but real help. Friends who live nearby can be worth their weight in gold.
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Old 02-11-2011, 07:32 AM #6 (permalink)
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Default Re: SCREAM! Frustrations with brothers

My mom wants to move to Houston which I support bc that is what she wants but I am growing increasingly concernced bc she does not have friends here and her only family in Texas is me.

I have friends but my very close friends are scattered around the US and some of my friends here have checked out of the situation for whatever reason.

I do not want to discourage my Mom from moving here bc I am happy to look after her and take care of her and support her and we have a certified ALS clinic here but I worry for her day to day emotional support bc I work full-time in a high pressure career and have an established life.

I don't want to talk to her about it because I don't want her to think that I don't want her to move here.

I also find it odd that she wants to move here bc our relationship is "challenged" at best and it has been this way for over 15 years but as I think about ----- our relationship is better than the relationship with her sons....sad really
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Old 02-11-2011, 09:56 PM #7 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Can you or she pay for home health care? The reason I ask, is because eventually she will need it, unless you quit your job. Unless you are willing to give up your career, you need to think long and hard about all of this! At 36 I would be hesitant to derail an established reputation, knowing your older brothers could really step up. I'm sure your brothers have told her they can't take care of her and to call you. Then again, my mother has been the same way (she doesn't have ALS). My younger brother can do no wrong and is in charge of her affairs. I've been in charge of her caregiving. That ended last year. Now little bro has to step up, if he can.

Sorry about your situation! Just think about all the future scenarios that could unfold if she moves and how you would deal with those. Then just be honest with your mom.
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Old 02-12-2011, 06:34 AM #8 (permalink)
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Default Re: SCREAM! Frustrations with brothers

i understand both sides and the care that will be required for your mom is most likely more than you think .. you would be wise to think like brooksea has suggested ... some people may love a person but , that does not mean they will be a good caregiver and their maybe things your brother's can't afford and you can . right now he is helping her but , may not be the kind of caretaker she will need and then he may be but , his wife i would worry about if they have not gotten along for a while .. my family do not get along with each other but , the one thing i can say is everyone of us loved my mother some of us were there as caretakers and some gave money to help with her needs or something as a present just to put a smile on her face .. maybe she go's on about your brothers because she wants you to see the good side of them .. i can also say that in my family we all at one time or another felt like the black sheep of the family and other times we felt we were the favorite .. we all took our own path in life some of us lived well and some of us lived day to day and now i am in my moms shoes i have 4 grown kids and i can now see my mother love us all no one more than the other and no one less than the other ... so all any of you's can do is the best you can for her .. you all have something or someway one can help different than the other and all of it together will be all she needs as she is the one in need now . just do your best is all that she would want from each of you's
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Old 02-12-2011, 08:32 PM #9 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Hi everyone.....I have thought about home healthcare but I just don't think I can do it (does this make me an awful daughter?) I am thinking about private medical care facility for when symptoms worsen....I am moving her into a +55 senior community for now because she is still able to do the majority of things with some aid....I will need to have a nurse come in to assist her bathing and she is learning to use tools to help her with getting dressed....I am hoping she still can remain relatively independent for a few months or so in order to adjust to everything the best she can before she requires round the clock medical care.

I guess my thing with my brothers is that money is not what I am upset about. I have and make more money then both of my brothers and I am able to supplement my mom's medical bills without concern and I totally understand that they are not in the financial position to do that and I would never make them feel bad for that but they could help her with things that do not cost money...take her to the grocery, visit with her and have a cup of tea, watch a football game with her, help her pack, help her clean her house, take her outside for some fresh air, call her on the phone to see how she is, send her an email.....

I think it is right that Mom wants to see the good in her sons...I mean they are her kids and she loves me them despite their emotional short-comings and I don't have any place to get angry with everything she is going through but I just can't stop myself right now.

My life is just so upside down right now and I just don't know how I am going to get through this emotionally.

It just breaks my heart...
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Old 02-12-2011, 08:50 PM #10 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Sounds like you have thought this out and have a plan in place that may work well!

As for the brothers visiting, if they really wanted to, they would find a way and that should not be put on your shoulders; neither should you be manipulated to do so.
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Old 02-12-2011, 08:58 PM #11 (permalink)
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Default Re: SCREAM! Frustrations with brothers

In times of crisis you quickly learn who you can count on. It is quite unfortunate that your Brothers have chosen to respond this way, just control what you can control and do what you know is right.
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Old 02-12-2011, 09:14 PM #12 (permalink)
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Default Re: SCREAM! Frustrations with brothers

I hope that my plan works out but I have found that there are always bumps in the road! I just wish that in times of crisis that people would remember that it is not about them; it is about the person in crisis and you have to overcome your self in order to help people.

I am not a natural care-giver so I have to make the effort; it has never been a question to me about being a care-taker for my mom....I mean she is my mom.

If only I could pray, hope and NOT worry....what would I do with my time if I did not worry?

I am on and off crying sitting here tonight....it is supposed to close to 70 degrees tomorrow so I am going to take the beagles for a long walk so I can clear my head for a few moments and get some air.
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Old 02-12-2011, 10:53 PM #13 (permalink)
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Default Re: SCREAM! Frustrations with brothers

If you have a trusted GP, you may want to see him/her and explain your situation. You may needs some anti-depressants or anti-anxiety meds to help you transition through this emotional time.

We are not super heroes, neither are you! So, don't expect yourself to be one. You will do a slow burn and fizzle out.

This is all new to you and it will take time to adjust.
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Old 02-13-2011, 12:10 AM #14 (permalink)
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Default Re: SCREAM! Frustrations with brothers

Please think long and hard about moving her. It is not easy to make new friends, in my experience it is impossible if you have ALS. The stress of the move will also set her back and escalate symptoms. I talk from experience and it was the worst thing I have ever let my kids talk me into.
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Old 02-13-2011, 02:16 AM #15 (permalink)
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Default Re: SCREAM! Frustrations with brothers

you have every right to be crying it is not easy to adjust to this , and to make decisions just take a few days it dont have to happen tomorrow , i would think more assisted living than a 55 couminty but , they are very expensive some places medicade will help pay for but , not all . if you are not a natural care giver this may be too hard on you and will not be good for either one of you . you can have aids come in and over see them and have quailty time with your mom thier are many options for you take your time and think them thur ... wishing the best for you and your mom
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