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06-25-2014, 03:14 PM   #91
upsetmom
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Location: New South Wales, Australia

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..I understand how hard it is.

I'm the carer of my daughter who has crohn's, my husband who has some brain damage due to having a few brain tumor operations, and also my dad who has been in hospital for the last 4 months. So there's always Dr's appointments, hospital visits and not to mention all the work at home.

Most days l'm run off my feet so l don't really get to stop and think about everything . But there are some days when l feel so down and l wonder why l was thrown in the position l'm in.

I try and go see friends at least once a week. Usually that's enough to give me that little bit of break that l need.

Do you have family that can help to give you a break for a few hours? You really need to look after yourself as well.

Hopefully your husband starts feeling better soon and things settle down..
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



06-25-2014, 03:18 PM   #92
busymom
 
Join Date: Jun 2014
Location: guelph, Ontario

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I have one that I hang out with occasionally. My moms lives out of town but she takes two of the kids every other weekend for a slight break. Other than that I'm on my own. My father passed in may and I haven't grieved because there's simply no time even with being a stay at home mom.
06-27-2014, 10:00 PM   #93
Jennifer
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I'm sorry you're going through this busymom. It's no fun and you're constantly doing something, nothing you really want to be doing either. As far as food goes, you could do the low residue diet and buy foods that are low residue. You can make just any any meal low residue. My mom prepared all my meals for me. At some point you'll just have to make something and hope that he likes and can tolerate it but if it's low residue he should be able to tolerate it (hopefully). You'll have to do some experimenting. The kids can eat the same thing too if they're old enough to eat normal foods. Baked lemon chicken breast with rice or mashed potatoes and canned peaches was always my favorite dish.

Hope he goes into remission soon so he can start helping you more. Depression also comes with the territory for those with IBD so he may need treatment for that as well. Keep us posted.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-01-2014, 06:14 PM   #94
lizbeth
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My father passed in may and I haven't grieved because there's simply no time even with being a stay at home mom.
I'm so truly sorry for your loss and for everything your going through. My dad also passed away in May, 5 years and 1 hour after my mum, when mum passed I became a care giver for my dad and wasn't able to grieve either as he consumed all of my energy,, the grieving will come in its own time at a time when your more able to deal with it, that's how I felt about me. You will be in my thoughts and prayers,, best wishes and big hugs.
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07-03-2014, 08:07 PM   #95
busymom
 
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Thanks guys I really appreciate it. My dad was only 57 he died on his birthday. He and his father were born and died in the same month 3 years apart. I'm afraid grieving will hit at the wrong time and hard. At this point I can't afford to break down. I can't even speak about it out loud or talk about losing anyone in general.
Does anyone have any suggestions on how to get my hubby to realize he needs to care for himself properly, that I can only do so much.
I've tried being nice, being mean, bring direct and indirect, treating him like an adult and a child it just doesn't seem to matter to him.

Last edited by busymom; 07-03-2014 at 10:36 PM.
07-29-2014, 03:57 PM   #96
Grumpy1
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Location: Victoria, British Columbia

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Hey all, not sure I fall under the guidelines but I hope I do. I am sole care provider for my 86 year old mother who has Alzheimer's. She was diagnosed 9 years ago shortly after my oldest brother passed away and progressed slowly until the last couple of years and has been getting worse a little quicker. She is an identical twin and her twin was diagnosed with Dementia and Vascular Alzheimer's 5 years ago and has progressed much more rapidly than my mom. I work full time and take care of her full time because she lives with me and I was diagnosed with Acute Crohn's in 2013. If this is the right place it would be nice to have a place to come to and maybe talk sometimes because I don't have that support here my brother and sister can't handle the disease, my sister hasn't seen my mom for well over 2 years and my brother will visit once every 3 or 4 months for 15 minutes usually until my mom repeats something 3 or 4 times and then he leaves. I won't say much more but I think that having someplace to go for a caregiver is a great thought.

Last edited by Grumpy1; 07-29-2014 at 03:58 PM. Reason: typing error
07-29-2014, 07:30 PM   #97
lizbeth
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Hello and welcome Grumpy1, you see definitely in the right place , Ihave found the sort here wonderful and Ihope you do too.

I'm so sorry that you are dealing with these issues on top of your own and I can appreciate how frustrating it is when siblings don't pull their weight, I also had problems with my older sister not doing enough though now that dad has passed away I don't expect to hear from her anymore. I accepted long ago that I only had 1 sister, that way I wouldn't get disjointed or expect anything from my older sister. Anyway, sorry I didn't mean to ramble about me.

Please feel free to chat away and hopefully we will be able to help you.

I realise that I am no longer a care giver for my dad but I hope it's ok to continue being part of this group? It has meant a lot to me being able to come here for support.
07-29-2014, 08:17 PM   #98
busymom
 
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Welcome grumpy1 that seems like quite the battle and I'm so sorry you have to face it all yourself. I am also a caregiver of my spouse who has UC and refuses to care for himself . Also have 4 kids to care for and suffer from severe depression. Your frustration and loneliness is definitely felt here. I don't know how much help I'll be because I honestly do not know how to handle all this myself. But I'll do my best to give opinions and be here to listen.
07-29-2014, 09:51 PM   #99
Grumpy1
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Thanks, and I'm sure that there are times that I'll vent and times that perhaps I'll whine but most of the time I'll try to be that support that I needed and still need for everyone else as well.

Busymom, I read your posts and I'm truly sorry that you are having such a difficult time. This diagnosis knocks the stuffing out of you literally and figuratively speaking - I'm female and I'm 53 and I have faced serious illness before, I was diagnosed with a benign cell change when I was 29 (cervical, ovarian & uteran) - had 7 major surgeries and lived happily until 2.5 years ago when I got sick again. It changes you and I can honestly say that without having to take care of my mom I would probably be curled up under a blanket telling the world to go away. I'm sure that your husband will come around it may not be today but he will get it together depression is horrible, in the meantime you need to look after yourself as well. Your kids need you, he needs you but most of all - you need you. You need to be able to look at yourself in the mirror and know that your okay so if means counselling, a bubble bath, a good book, a bottle of wine, a long walk with a friend, a movie, a rant on here you do whatever it takes to make you healthy because your going to be the mortar that holds that home together for a little while.

Sometimes the little things we do are the most important. On top of taking care of my mom, my daughter is terminally ill but that's another story for another time.

Thanks for welcoming me and I hope that I can give as good as I get.
07-30-2014, 12:54 AM   #100
Dragon
 
Join Date: Nov 2013

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Wandering in to say I to my fellow caregivers. Lately, I haven't been doing so great, but I am working through my depression/anxiety issues. I am the pprimary care givers to my 2 boys, G and A. G,19, is diagnosed with High Functioning Autism,ADHD, Anxiety, Epilepsy and Crohn's. A, 16, has moderate Autism, Anxiety, behvioral issues, Sleep disorders, and undiagosed GI issues. Hubby had spinal fusion surgery in 8/13, and has been in disabled due to chronic pain since 6/13. He is filing for LTD and SSDI. Between caring for everyone and financial issues, things have been piling up on me. To all my fellow care givers, get some rest and hang in there!
09-29-2017, 07:11 PM   #101
StrugglingMom&Wife
 
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Location: Elkhart, Indiana

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i am 26yrs old and i have a 3yr old daughter who has a genetic disorder called 15q11.2 microdeletion. shes missing a part of chromosome 15 and as a result of that she has a seizure disorder, severe anxiety, adhd, an arachanoid cyst in her brain, acid reflux, congenital ptosis of the eye(which shes had surgery on twice so far), an eating disorder that causes her to have chronic constipation, sensory processing disorder, sensory overload disorder, developmental delays, and ptsd when it comes to doctors and hospitals. about a year ago my fiance of 5 1/2 yrs was diagnosed with diverticulitis. he was hospitalized for a week because he had an abscess in his stomach that was extremely close to bursting open. he also has anxiety, depression, add, ocd and about 2weeks ago he was diagnosed with ulcerative colitis and has since been doing blood tests and getting no results from his doctor. i was diagnosed with ocd, severe anxiety, bipolar depression, rapid changing bipolar disorder, chronic headaches and migraines, chronic constipation, chronic urinary tract infections, muscle spasms that affect my back, knees and hips, cirrhosis of the liver, adhd, and ptsd. i have way way more on my plate than i can handle. i am extremely stressed out with everything thats going on. i have no family to help me and no friends either. my fiances family are all either way too busy or just cant afford to help us. he cant work because of his UC and my daughter gets disability but its nowhere near enough to cover our bills and necessities. im trying to find a job but nobody will hire me because of my bipolar disorder and my fiance needs me at home to help him and to take care of our daughter as he is not physically able to watch her. hes in constant pain and discomfort and can hardly make it to the bathroom let alone chase a 3yr old around all day. i just dont know what to do. his doctors just keep doing bloodwork on him and wont do any other tests. the meds they give him dont do anything and everytime he makes an appointment to see his doctor the office either doesnt put his appointment in their system or his doctor has some stupid excuse as to why he cant see him. the emergency rooms dont do anything for him except put him in more pain. its an endless cycle of nothingness. we are forced to do our own research online to try to find relief and more info on his conditions and all that does is worsen both of our anxieties and cause me extreme emotional distress to where im almost having panic attacks. we just need answers. i dont know how much more i can handle. im exhausted emotionally, physically and mentally. i wish we had some help.
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