Am I being unreasonable?

[Gordon Gekko]

Hi everyone.

OK here's the deal. I am 27-years-old and my mom has had ALS for probably three years or so (is still somewhat mobile and indepedent but has lost full functionality in one leg, another is going and there are slight weaknesses in both of her hands). My dad helps take me care of her and I have a slightly younger brother who comes in to help once a week or thereabouts.

I have had the flexibility with my job to work from home, which I do, while my dad works (his insurance is needed for her care) and am on-call for my mom if she needs any help. This, of course, can become very stressful (balancing work productivity+her needs) but she has been helpful and responsive to my concerns and tries not to come across like a burden.

The downside for me is that I spend too much time at home and not enough time building my own life. Oh sure, I do get away, but ultimately I return home out of a sense of responsibility and because I love my parents. Both of my parents have unrelated health issues and while neither are in imminent danger, I find myself being the first and sometimes only resource they have and do draw from. There are other family members scattered throughout the region, but no one to completely rely on in a pinch.

Anyway...here's the issue:

My brother decided to leave the area (2 1/2 hours away) with his girlfriend six months or so after my mom was diagnosed (he had no practical reason for leaving.. just up and left). I know this may sound childish, but I NEED his HELP if for no other reason than to have someone in the area so I do not have to constantly be on-call. I feel like any time I bring up the idea of moving back into the area for these reasons, he doesn't take me seriously and figures if he shows up every now and then, it's all good. I don't think he understands the stress that I am under and the worry that I experience, in-part because of what I am dealing with.

I am a little high strung and can get stressed out, but I feel so alone at times and that's the worst feeling. I am there for my mom and my dad as much as I can, but I still have a life to try to live. I feel like he's getting a free ride and is so spoiled with this lifestyle that he won't ever help me out. We have a good relationship otherwise, but this has led me to wonder whether or not I am being unreasonable to ask him to move back here to help. My parents would never ask him for any more help than he gives, but that could be because I am there. He uses this as a means to justify continuing the status-quo.

Any suggestions on what I should do ...or am I simply overreacting and should just deal with the reality of things.

Thanks!:-o

 

[Ellamay]

Gordon, Everyone deals with things differently and it is Very hard at times to accept. We found that we had a ton of family living close by and after my husabnds diagnosis everyone disappeared. Even family that lived in the same town. I was shocked and disappointed and often I heard. " I want to remember him as he was". You may find that there is a handful of people that will help some may not be family members.

Was I angry at times? Absolutely! But I had to shift my energies to Tony's care and leave those people behind that weren't going to help me.
Be up front, state your needs, honesty is the best thing with your brother... you can't do it all and neither can your Dad. Do you have anyother family that live close by? Any of Mom's close friends? You might be surprised where you might get help.

 

[indigosd]

Gordon, You sound like a loving, sensitive and wonderful young man! Your parents are soul blessed to have you in their lives. You must find a way to create time for you and your life. You are on the edge of caregiver burnout. Talk with your parents and ask if they could have a family conference that includes your Brother and any extended family so that you can join together to give your Mom the care she needs and deserves and so that it does not all fall on your shoulders. You are not being unreasonable and your frustration is understandable. Have your parents made any decisions about how they will manage when she needs care 24/7? Do you have a faith family or a ALSA in your area? Would it be possible for your brother to return, can he find a job? Is it possible for you to take a vacation and get away? You need to ask for help and you do have the right to have a life-that is the Momma in me and I am certain that your Momma would tell you the same :] hugs to you!

 

[Katie C]

Gonna through out a suggestion, because yeah, caregiver burnout is not a fun place to be. I love Kay Marie's idea of a family conference, but I would go in with a plan. Perhaps your brother could come stay with your folks one weekend a month. The hard part will be: YOU LEAVE for those couple of days. Go hang out with your buds. Go hit a club and stay with friends overnight.. 2 nights away would be even better. Just get in the car and do a mini road trip... wherever the road takes you. But put it on a schedule. Then, on those days when you're frustrated, you can say to yourself "ok.. only 10 more days and I get some me time" That way, your brother takes part of the burden, your parents are cared for, and you get a brain break, and all of it is scheduled and not at anyone's whim.

 

[brooksea]

I can completely understand where you are coming from, as I have a younger brother. We have a mother that I had to care for for reasons other than ALS. But, the issue was the same and he lives 15 minutes from me.

If your brother is truly a selfish person, it will be very difficult to get him to cooperate. Kay Marie's idea is great and I hope your parents are open to the idea and will implement it. If you can arrange his help, then please do what Katie suggested and do not worry while you are gone. Perhaps your brother will learn humility and compassion.

As Kay Marie pointed out, this is going to be a long term, deteriorating situation. Your mother is going to need constant care. I would encourage you to reach out to neighbors or any group your parents belong to and ask for a little help from each. Also, has your mother registered with the local ALS Association? They may have volunteers that can stay with her while you take a break. Some chapters offer a once a year respite so you can truly get away.

I wish you luck young man! I hope my son will be as caring when he is your age!

 

[Just J]

Gordon, everyone has posted excellent recommendations. I too am a caregiver to my husband. He does not need 24/7. For instance, I can leave him alone (for now) while I go to work. I have to spend some time in the morning setting him up for the day so that he can manage easily while I am gone. To your point however, we are about 1 hr from most family but only 20 minutes from my stepdaughter. She has not really offered much assistance (she is a mother of 3 young children). I don't blame her, as Ellamay alluded to...I think she just doesn't want to deal with what her father is going through. Its hard to digest and everyone handles these things differently. Anyway, I am not making excuses for my stepdaughter. All I am saying is everyone handles things differently. Perhaps you brother just doesn't "get it". You are a young man and you have a life to live too. And you should not feel selfish for wanting to live a bit of your own life. I definitely like Katie's suggestion of asking your bother to do one weekend a month. Surely after one weekend he will understand more fully what is on your plate and perhaps offer to be there more. Take care and keep us posted.

 

[gloria]

hi its a little differant for me but my boyfriends son lives over 3 hours away but now his dad needs someone here full time hes comes every weekend to give me a break and his daugher is staying with us for the summer i think you should let him know how your feeling this is a family matter he might be having a hard time accepting it so a talk might do you both good

 

[Jellycat]

Hi there, really like Katie's suggestion. Could it work for you?

I really identified with that alone feeling. The pits isn't it. I am looking after my mother who was diagnosed with bulbar onset November last. This time last year we were dealing with a slur in her voice. Now she has no speech, very limited swallow and is unable to walk. Her life has changed totally and so has mine. I was in full time work-now no longer possible. I have no siblings and my father died a couple of years back. I want to be with her and do what I can for her but there are times when it is just so hard. If it wasn't for the support of friends & hospice I would have gone bananas by now.

..... all this to say, get the help wherever you can. You need it and it is not unreasonable.

Keep well,
Avril

 

[Mick n Ang]

Hi Gordon,

It broke my heart reading your post we only have one son and we would never want him to feel as you do, we handle it so differently and try our best not to let this illness encroach on his life as Mick will not be a burden. But our wonderful, beautiful son visits every day as he says he doesn't want to miss a moment of his Dad. It is hard as ellamay said everyone seems to disappear when they hear what you have and it can be at times a very lonely place, but I know when or if we need our son for anything he'd be there in a flash although we would never let ALS take over his life. We do alldeal with it differently and cope the best way we can. You need to take some time out for you, your such a kind, considerate and devoted son your parents must be so proud. Bless you all xx

 

[handinhand]

Hi Gordon, I really feel bad for you.. I was thinking about my daughter who just came to live in our guest house. I told her I am very functional . I don't need assistance... I wanted her to come to be able to have some fun Days together while I still can...I don't want to be a burden on my kids or my husband... I hope you can get some help . You need to get away and have some down time...please get on the phone and look into what help is available in your town...I get the feeling from your message that brother may not be helpful? I hope I am wrong, but u need a back up....hugs , Linda

 

[superkate]

I know just what you are going through. But I would not try to push too hard. I tried very hard to get my brothers and their spoused to help more and it ended up so badly that I havent spoken to my older borther and his family for 8 months now this has torn my life apart and if i had to do it again i would let them continue on ignoring the problem and their lives and still be able to help my mom who can not do anything on her own now.I miss most my mom who has bulbar ALS who is not the same mom I knew but also communicating with my brothers. I hope that you family is different and can understand you need help but I truely believe now that you must let people deal with what they can in their own way.
katie

 

[tifferlynn]

no your not crazy or wrong, my mom alos has als and there are 6 kids but yet my sister and i are the main caregivers, my mom lives with my sister in st.louis mo and i live in il. about an hour and 1/2 away. i also have a good job that has been very flexable. i work mon, tues, wes and then at my sister to help with my mom thrus thru sunday. 1 brother that comes every other weekend. the other 3 pretty much never to be seen. i know with them they just dont get it since there never there long enough to really understand what we are dealing with. You need to talk to him and really explain what it is you do and honsetly tell him to visit this site and just read some posts, they my help him relize how much work it is and that your not just overreacting, that all caregivers are stuggling and feeling like you. also one of the best things i have read that truly expresses in words what both you and your mom are feeling and dealing with, ask him to read it. its called THE ATTIC this is the website where to find it. ALS: The Attic