how to deal with family stress???

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Date Joined Feb 2008
Total Posts : 493
   Posted 8/13/2008 9:19 PM (GMT -7)   
I'm having a difficult time saying no and not taking on more family stress. Long story short, my mom is having some surgery done but hasn't let her extended family or friends know. Therefore, a lot of help is needed around her house and nothing is really lined up. This happened last October-April as well. I was in a huge flare and just wore myself to exhaustion driving an hour to and from to visit and help out. Don't even know how I drove home many nights. I don't blame the flare on this (I became allergic to 6mp) but I'm sure it didn't help. I also put myself into germ filled environments ---the hospital and rehab facility-- even though GI said not to.

So, here were are again. I just found out that my mom has no help lined up for my 93 year old Gram while she is in the hospital so I am to drive to and from another 2 hours and stay with her another 4 plus. There are a ton of people ready to help but my mom will not allow them to as she doesn't want to share the details of her surgery. I know this is her perogative but. . .

Do I pull the "I want to help but I have a chronic illness" card or can I handle this? The guilt eats me alive. I'm not planning on going to the hospital or rehab place this time b/c of humira. But how do I leave 93 year old Gram to fend for herself of hours on end?

Any advice/experience appreciated. This just isn't getting easier.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira

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Date Joined Jul 2006
Total Posts : 6927
   Posted 8/13/2008 9:30 PM (GMT -7)   
Tell you Mom what you can do, but explain you need help. You cannot do it without help, your Mom is just going to have to let go of the embarrassment(?) she feels that she will have if people find out about her surgery. Perhaps home health care, for your grandma? At that age I am sure she would qualify for it. Furthermore, I'd rather have a plan for me being in the hospital and not need it, then need it and not have one.  Good luck!

Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

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Date Joined Mar 2006
Total Posts : 2739
   Posted 8/13/2008 9:50 PM (GMT -7)   
I had this happen last August with my Mom. She was having episodes of sever abdominal pain, enough to that we had to call 911 twice in 2 weeks (one time she didn't even know I was there, she was so out of it). Ended up being her gallbladder. So she had her gallbladder out, I had to take care of her, AND my mentally disabled brother for about a week. I think my brother was more work then her, he can barely do anything for himself. Is about 6' 2" and over 200 pounds. But I was all that could help, her husband is pretty useless (that would drive me nuts). I ended up wearing myself down pretty quickly, and was so happy when she was on her feet again.

In your case I think she really needs to tell more people, so you can have more help! I'd explain this to her, like it's really a no choice situation (because for your sake and health it really is!). Good luck, I know family can be sooooo stressful! Just remember to take care of you!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 4mg now, Asacol, Questran, Toprol XL (for high blood pressure).

Regular Member

Date Joined Mar 2005
Total Posts : 79
   Posted 8/13/2008 10:02 PM (GMT -7)   
Wow Sammies - sounds like a hard place to be.
It sounds like your mom is in a bit of denial, but you dont need to be. I cant imagine trying to manage all that on my own. If your mom wont ask for help, can you? Do you have a support network you can count on?
It sounds like at this time you cant rely on your mom to help you out so I hope you can find ways to take care of yourself.
Keep in mind, you will no good to anyone if you end up in the hospital with a flare.
Good luck!
Dx/ed October 2003,
April 2004 - Surgery - 2ft of small bowel removed
Feb 2007 - Surgery again and a temporary ileostomy
Present - on Remicade waiting for surgery to reverse the ileostomy - Health Care System in Canada sucks - wait list is 6 12+ months.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 8/14/2008 5:49 AM (GMT -7)   
Your health is more important than preservation of feelings. Surely your mother could understand this if you explained it to her. The consequences of overexerting yourself could be irreversible unlike if your mother would simply come to terms with what happened and share it with someone else who can help her. I'm really sorry that you're going through this...I know the decision itself should go without saying, but I understand the complications when it comes to the individual and the family. I just hope it works out for you and your mother understands. I really hope she can find someone to help and realize that making you do this will only hurt you.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 8/14/2008 6:01 AM (GMT -7)   
Do you work? If not, rather than driving back and forth could you just stay at your grandmas for those days? Does she require a ton of help or just someone there to make sure she eats and takes her pills. If you do work could you check in with grandma by phone each time she should be doing something (like taking pills) and maybe order her take out delivery for dinner each night via phone? You can usually pay with a credit card over the phone so it would be paid for when it got to her.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Texan with Crohn's
Regular Member

Date Joined Dec 2007
Total Posts : 362
   Posted 8/14/2008 6:46 AM (GMT -7)   
I understand this. First, take care of yourself. Then where you can assist.

I myself am responsible for my 94-year-old grandmother and my mentally/phisically disabled, 40-year-old sister (who does not live close by and cannot do anything for herself), so I understand. Yes, it is very demanding on the body. I cannot do all the time. But both my parents' health is less than great. I let my family know that on the days where I am in full flare and cannot stand or move far from the bathroom that I am out of commission. During those times, I ask for help from other family members and from my close friends. Family is everything... BUT it can be a beast of a burden when you are not well.

Good luck to you. I probably did not help much. Just wanted you to know that you are not alone in this demanding area.

Regular Member

Date Joined Jun 2008
Total Posts : 28
   Posted 8/14/2008 8:45 AM (GMT -7)   

I was surprised to see how many of us have mothers we have to take care of.  Sammies, my mom often needs help and instead of reaching out to others for assistance, she just lets me swoop in and save the day for her.  She even expects it and acts as though I'm neglecting her if I'm not willing to sacrafice of myself to help her.  And I would feel guilty if I didn't!  It took a very long time for me to realize that this was a pattern and that I was letting my mother let me take of her.  It's hard to say no to your mom because she brought you into this world and took care of you herself, but you have a disease that you need to deal with and your mom is going to have to step up to the plate and take care of her own obligations.  Give yourself permission not to fix her problems and put the responsibility back on her to set up help for herself and your grandmother.  She won't change the behavior until she has to, and she doesn't have to as long as you're taking care of things for her.

I hope that didn't sound preachy.  I just really feel for you because I think we have the same mom. :) I am constantly having to ask myself if I'm being supportive of my mom, or letting her take advantage of my sense of obligation to fix what needs fixing.  I know she doesn't do so intentionally, but it's a pattern she fell into that I had to recognize for her.

Do your best, then to hell with it.

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 8/14/2008 9:13 AM (GMT -7)   
Many years ago I recognized that the needs of others are infinite but my capacity to give is not. I have had to learn how to internalize my sense of self and not constantly seek external confirmation that I am a good mother, wife, sister, daughter etc. by always being there and by always doing whatever it is that others think needs doing.

I spent a lot of my life being the conscientious worker, the compliant patient, the good daughter, the perfect wife, mother and friend. All the while hiding my illness and my resentment and living with the expectation that my doctors would somehow see how sick i was even though I never complained, that my family would see how tired I was, even though I was always there. I think I was always waiting for someone to take the burdens off me.

In retrospect, I think my behavior was emotionally immature and not really fair to everyone in my life. Why should I have expected the people in my life to get it? It really wasn't fair to expect anyone to rescue me. I had to rescue myself.

For me it has become about setting boundaries, doing what I have the capacity to do, and doing it eagerly and with love. Doing what I am able to do, when I am able to do it is enough for me. I know I am a good person, a loving friend, wife, mother and daughter. I will never meet all the needs of everyone in my life. It is often less than perfect, less than might have been expected, but for me now, "less than is good enough".

30+ years living with Crohn's.

Regular Member

Date Joined Jun 2008
Total Posts : 28
   Posted 8/14/2008 4:12 PM (GMT -7)   
Wow, belleenstein, that was one of the most eloquent postings I've ever read!  I think I'm in the discovery phase of my emotional immaturity, and everything you said spoke right to my head and heart.  Thank you for your words, they were hugely helpful!

Do your best, then to hell with it.

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 8/14/2008 4:36 PM (GMT -7)   
Belle - You made me teary eyed as I read your reply - I felt like you were talking about me for a moment.
Sammie - please try not to make yourself sick by doing too much. I agree with everyone, that you should speak with your mother and tell her how hard it is for you to be 'everywhere' at once. As a mother myself I would be glad that you had mentioned this, as we sometimes take our childrens help for granted. Take care Sammie.

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 8/14/2008 6:34 PM (GMT -7)   
I am overwhelmed by and so thankful for the responses here. THANK YOU!!!! I had your words in my brain as I emailed two family members for help. I stuck to my plan today and stayed with Gram from 1015-230. Even she noticed I was really tired and sent me away. I came home and crashed.

Thank you all for the wisdom and help. My mother has been in serious denial for years and years. She is my strength in so many ways yet she plays this role of the invalid (in some ways she is a 95 years old 60 year old) and does not look at how her decisions effect those around her.

People tell me how strong I am. I don't feel strong. Especially lately. Sometimes I feel like I am hanging by on a thread. There I was completely shivering and shaking the other night and I don't think a soul noticed.

I often wonder if we are hypersensitive to interpersonal relationships b/c of our disease.

I am going to reread all the responses several times. Thank you!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira

Veteran Member

Date Joined May 2007
Total Posts : 589
   Posted 8/15/2008 9:32 AM (GMT -7)   
Strength is relative. What many of us shrug off as "just another day.." would make most other people cry. My GI, when I was diagnosed, was absolutely shocked that I wasn't curled up in a fetal position, writhing in agony.

I think it's not so much that we're hyper-sensitive about relationships, its that our condition brings out extremes in people. Either we're "that poor guy with the disease that cripples him" or "that whiny guy that blames everything on that disease." Only once they get used to us, or someone else with crohn's, are people able to find a middle ground, where they know us for our true selves, and understand that, while Crohn's is a huge influence on our actions, it doesn't define us.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 8/16/2008 7:48 PM (GMT -7)   

I really REALLY feel for you. =( It may be hard, but I think that you need to put yourself first and take care of YOU. Trust me, I KNOW how hard this is. I was a BIG people pleaser for awhile but finally decided that in the end it's me that has to deal with my symptoms and decided to put myself first. I can't tell you how liberating it has been. I know it's hard, and sometimes you do have to put yourself second, but in my opinion I think that your mom should reach out and ask for help. It's not your fault that she won't ask for help, so don't feel bad by saying no to her. This is something she needs to get over and ask for help with. You need to take care of you! Again, this is just my opinion. Please take care of yourself and put YOU first! I could understand if she had absolutely nobody to help, but because she is unwilling to ask for help I would say don't feel bad saying no. Best of Luck!

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