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05-20-2013, 11:36 PM   #1
Jennifer
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Caregivers Support Group

About this Support Group

This support group is for everyone who is a caregiver. Whether you're caring for someone with IBD or with another health condition this place is for you to share stories, vent your heart out and get support from other fellow caregivers.

Being a caregiver is no easy task and we applaud each and every one of you for taking on the role. Its extremely demanding and often times we forget to take care of ourselves. When did we eat last? Did I shower recently? Am I no longer enjoying the things I used to love? Depression is extremely common among caregivers so its important to have an outlet and learn to take care of yourself as well as the person you're caring for.

Someone came to help yet they are doing everything the wrong way. We feel that we have mastered the whole process of caring for someone else yet we need to learn to allow ourselves to have a break, to take a step back and allow people to help us.

Being a caregiver is extremely frustrating and sometimes you will feel some resentment for the person/s you're caring for. We understand these feelings and wont hold such thoughts against you. Feel free to vent your frustrations here.

Sometimes other friends, spouses and family members wont help us and we feel completely alone, overworked and under appreciated. We all understand what you're going through and may be able to help each other by sharing ideas and experiences that have worked for us.

Being a caregiver can also cause physical injury so please be careful at all times. Share your stories about that here as well.

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amnazaheer, busymom, ColinsMom, curlyqsmom, Dragon, dulouzz's Avatar dulouzz, Grumpy1's Avatar Grumpy1, hbonsky's Avatar hbonsky, HisWifeForLife, Jennifer's Avatar Jennifer, Jmrogers4's Avatar Jmrogers4, Leed2713's Avatar Leed2713, lizbeth's Avatar lizbeth, Notsoniceguy, SandraS's Avatar SandraS, SJ!, StrugglingMom&Wife, thunderbear1's Avatar thunderbear1, upsetmom's Avatar upsetmom, zab's Avatar zab
05-20-2013, 11:45 PM   #2
Jennifer
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My grandpa had a massive stroke back in 2010 and I've been one of his caregivers ever since. I made a thread about my experiences a while back and its been a really long road with more downs than ups I think. Feel free to read it if you like: http://www.crohnsforum.com/showthread.php?t=14931

I still do his physical therapy for him every Tuesday and Thursday. It took a long time to go from helping him 6 days a week (24hrs with a damn cow bell ringing 3-6 times a night) to a couple hours twice a week. Its still unknown how long this will last but I know that I'm burnt out and tired and have been for a long time.

Not just my mental well being has suffered but physically as well. I have 3 bulging disks in my back now from lifting him and my arthritis pain has gotten a lot worse all while I try to take care of myself in the process.

Since I also have Crohn's I've been both someone who's been cared for and who is a caregiver. And I'd like to let you all know that those of us who are being cared for do appreciate it even though we never say it.
05-23-2013, 12:35 AM   #3
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Bumping this up for others to see. Moved it to the Support section instead of the subforum it was in.
05-23-2013, 09:55 AM   #4
Hope345
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My heart was broken after our daughter was diagnosed with Crohns. I spent hours lying on her floor, beside her bed, doing the best I could to tend to her needs and try to help her through a lot of pain. I couldn't imagine being any where else. Lots of trips to the hospital and doctors offices for tests and treatments.

However, there were times I know I needed to take of myself. Caregivers are at their best if they get time for themselves and are able to take care of our own health as well.

I just started as a professional caregiver and that has another set of problems: You need to find a good balance of letting your client have some control while allowing you to help them.

I also want to give her spouse a chance to have some time to himself so he can be a better caregiver to his wife. He mentioned feeling like a prisoner in his own home.

I think all caregivers feel that way sometimes. That is when you know it is time to make arrangements to get out of the house for a while...... guilt free.

For some reason we have trouble saying, "Hey, I need to take a break." We dont have to say that to the one we take care of, just to ourselves. then make arrangements to do it. You will be a much better caregiver if you do this.
05-27-2013, 01:01 PM   #5
Hope345
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What is one of the biggest hurdles you face as a caregiver?
05-28-2013, 04:05 PM   #6
Jmrogers4
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I'm a caregiver to both my hubby and son with Crohn's, my husband was dx'd about 10 months before our wedding 20 years ago this October and while I have always been there to support him, hold his hand and yes even pack his abscess after surgery, he has always taken care of it himself. I don't have to remind him to take his medicine, make his doctors appts or tell him he shouldn't do/eat that (He is a grown up after all).

It is completely different with your child as I find myself studying more about it, watching him closely for any little symptom, worrying about other people being sick around him. I find myself dangerously close to being a helicopter parent which I have never been nor ever wanted to be. It is hard to take a step back and let him make mistakes and be a teenager.
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-29-2013, 10:12 PM   #7
Jennifer
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What is one of the biggest hurdles you face as a caregiver?
First thing that came to mind was "caring." When there's always something wrong and you're at your wits end, it becomes harder and harder to care about them and yourself. Probably falls along the lines of depression. I do my best to take care of him but I've noticed that I don't care about him as much as I used to. That's the honest truth. Time away does help though.
05-29-2013, 10:54 PM   #8
Hope345
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Jennifer,

I think you hit the nail on the head. The caregiver must take time for themselves or that is what happens. Our minds and bodies can only take so much and then we need to give it a break so we can come back refreshed and ready to go. I am sure it is even more important when your own health is an issue.

I noticed that with the spouses of the elderly patients I take care of, their own health is fading and they are so tired. Maybe they could do it a week or two, but 3 years later, that is tough.

Jacqui: We are different with our children. I am too. I havent heard of the term helicopter parent but I am pretty sure I understand. You will know when it is time to step back more (I know my daughter makes it very clear-lol.) From all the comments I have read about your son, you are raising him to stand up for himself and face the world.
05-29-2013, 11:11 PM   #9
Mehita
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What is one of the biggest hurdles you face as a caregiver?
My biggest hurdle is wrapping my head around all these scary meds and then trying to pick the best one for DS, hoping he won't hold it against me later if he can't have children or develops cancer or even simply experiences a nasty side effect.

It's one thing to make decisions like this for yourself, but another entirely when you're doing it on someone else's behalf, especially when there are no studies or research to make good, solid decisions from.

Huge hurdle.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
05-30-2013, 01:07 AM   #10
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Hope it's ok to join in, I used to be a carer for my dad after my mum passed away 4 years ago, I live 60 miles away from him but would have driven up every weekend to stay with him, leaving work on a Friday, coming home Sunday night, going to work Monday morning and then starting all over again. He didn't cook so I would leave meals for him and my younger sister would make up the rest. We have an older sister who called to see him once a week, had a cup of tea then went home, leaving her cup for someone else to wash, never did anything for him and only lives ten minutes away!!! She's too busy enjoying her life to do anything, she fails to forget that my wee sister and I are both off work cos of multiple health issues but thinks we have the time to do everything. Sorry for complaining, she makes me so angry.I've seen me having to drive up 2 or 3 times a week cos my wee sister is really upset cos dad is hard work but my other sister does nothing to help.

My dad has Addisons Disease, COPD, Schlerosis of the liver, Liver cancer, Eye Problems, Hepatic Encephalopathy and personality disorder, the last issue is the hardest to deal with, it makes him mean, very selfish and incredibly horrible to us. He's also an alcoholic but but sober for 15 months.

In the last 4 years I have had swine flu, two surgeries within four months one big, one should have been small but wreaked my hand, discovered a lump on my Achilles (lipoma), diagnosed with diabetic maculopathy and had treatment, diagnosed with crohns and discovered I have arthritis in my lower back, knees and hands and have a disc bulging towards my spinal cord. He now reckons I'm off no use to him cos I don't go to him every week anymore.

Jennifer I know what you mean about not caring the same, I still love my dad but I don't like him much anymore, he has kicked me so many times that I just can't care the same it make me very sad, I miss the father he once was.

Sorry for going on so long, I don't have anyone to vent to about this, my husband is fed up of my dad's behaviour. Thank you for reading.
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05-30-2013, 02:29 AM   #11
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Wow Lizbeth, your situation does sound somewhat similar to mine. Hard person to care for, family members who don't help and live close (or have the money to pay for help but don't), arthritis, bulging disc (I have 3 now since I started lifting my grandpa), and my husband is also sick of it. You can vent to us anytime!
05-30-2013, 02:56 PM   #12
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Thank you means a lot.
05-30-2013, 08:22 PM   #13
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Mehita: I so agree. The meds have been a big issue with us as well. Lot's of praying, tears and continued hope that we have chosen the right path. Thank you for sharing.

Lizbeth: I have not had to care for an elderly parent, but I recently started working for a company that sends caregivers into the home to help out. It sounds like you have done an incredible job, but need to get some much needed help. Do they have anything like that where you live? There are several in just the town we live in.
05-31-2013, 05:57 AM   #14
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Hope.....Yeah they do but his behavior is so inappropriate that he has lost most of it and receives the minimum of someone making his breakfast and leaving him a sandwich for lunch. People don't like to be around him , it makes me very sad, even we don't like to be around him. The saddest thing for me is that underneath all the nastiness he really is a very kind man and sometimes we get glimpses of that. I would love for that dad to come back.

Last edited by lizbeth; 06-24-2013 at 07:36 AM.
06-23-2013, 01:02 PM   #15
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What is one of the biggest hurdles you face as a caregiver?
My biggest hurddle is taking care of my own lifelong mental illnesses. At 8 years old I was diagnosed with OCD. Then 10 years ago with Major Depressive Disorder, Ptsd with Dissociation & Obsessive Personality Disorder. My husband was diagnosed with CD 8 years ago. I find it hard when hes in a lot of pain and he gets mean. Not abusive but just kind of hateful. It triggers my Ptsd. Last week was really bad and I cant seem to shake the mental effect on me this time. My stress level is so bad, its affected my menstral cycle and my own BMs. I have times where I cant hold food down because when I get nervous, I get extremely nausous. My meds arent working. I know he doesnt mean to be so irritable that its the pain talking not him. But it still hurts. Im depressed. I.dont talk to him about it cause I dont want him feeling guilty about anything else. The anxiety that I have when hes sick is another big hurddle. All the doc visits & frustration cause the meds they wamt to give dont work anymore. I have no family to help me. His family just dont care. Its hard.
06-23-2013, 01:56 PM   #16
723crossroads
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My biggest hurddle is taking care of my own lifelong mental illnesses. At 8 years old I was diagnosed with OCD. Then 10 years ago with Major Depressive Disorder, Ptsd with Dissociation & Obsessive Personality Disorder. My husband was diagnosed with CD 8 years ago. I find it hard when hes in a lot of pain and he gets mean. Not abusive but just kind of hateful. It triggers my Ptsd. Last week was really bad and I cant seem to shake the mental effect on me this time. My stress level is so bad, its affected my menstral cycle and my own BMs. I have times where I cant hold food down because when I get nervous, I get extremely nausous. My meds arent working. I know he doesnt mean to be so irritable that its the pain talking not him. But it still hurts. Im depressed. I.dont talk to him about it cause I dont want him feeling guilty about anything else. The anxiety that I have when hes sick is another big hurddle. All the doc visits & frustration cause the meds they wamt to give dont work anymore. I have no family to help me. His family just dont care. Its hard.
So sorry for what you are going through. I really think you should seek some medical help now. Your meds need some tweaking it sounds like and you need to find a way to communicate with your husband how badly his anger is affecting you without it causing him to be more angry. You could try first really sympathizing with him and saying how sorry you are for all he's going through. But also you need his support right now too. Be very kind and to the point and then reiterate how much you know what he is going through affects him. But you can't be his outlet anymore because it is making you sick. Try it and let us know what happens. If you truly feel you are in danger, there are shelters you can go to. I know this is probably not an issue, but just want to put it out there in case you do.
06-23-2013, 02:09 PM   #17
723crossroads
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Can I just say that I am so pleased you thought of making this thread! We who are caring for others who have illnesses and for ourselves really appreciate it. I am not really a caregiver right now, but I live with my husband whom I love very much, but he has OCD very badly. He will not touch anything without using a tissue or paper towel. He went on meds, but it isn't helping. He was depressed and that seems better, but not the OCD. He also leaves papers in piles in our house. He has a recliner and beside it, it looks like someone dumped a bushel of papers. I ask him to please clean it up. It is bill stubs and paystubs and all the receipts from stores. He says he knows where everything is, so don't touch it. We have an office and a file cabinet, but he won't use them for that. I love a clean house and everything in order. I hate clutter. I have learned it's not worth fighting about all the time, but does anyone have any advice that might be helpful?
06-23-2013, 07:27 PM   #18
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It honestly sounds like your husband may be hoarding 723crossroads. Hoarding is listed as a possible symptom of OCD. http://www.mayoclinic.com/health/hoarding/DS00966 Best treatment to start out with would be therapy honestly from someone who specializes in hoarding (for him and for both of you if you feel its needed because if we start getting mad at the person who has a problem that needs help, then that just causes more problems). My parents were both hoarders so the house got pretty bad when we were kids. That doesn't mean your house is ever going to be a disaster though. Its very possible that he will only hoard in that one section that he feels he's allowed to.
06-24-2013, 10:20 AM   #19
lizbeth
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My biggest hurddle is taking care of my own lifelong mental illnesses. At 8 years old I was diagnosed with OCD. Then 10 years ago with Major Depressive Disorder, Ptsd with Dissociation & Obsessive Personality Disorder. My husband was diagnosed with CD 8 years ago. I find it hard when hes in a lot of pain and he gets mean. Not abusive but just kind of hateful. It triggers my Ptsd. Last week was really bad and I cant seem to shake the mental effect on me this time. My stress level is so bad, its affected my menstral cycle and my own BMs. I have times where I cant hold food down because when I get nervous, I get extremely nausous. My meds arent working. I know he doesnt mean to be so irritable that its the pain talking not him. But it still hurts. Im depressed. I.dont talk to him about it cause I dont want him feeling guilty about anything else. The anxiety that I have when hes sick is another big hurddle. All the doc visits & frustration cause the meds they wamt to give dont work anymore. I have no family to help me. His family just dont care. Its hard.
I am sorry that you are living through so much difficulty, it seems that life never just throws one thing at us at a time but many issues to deal with. Do you have any support groups or charities that would be able to offer some form of support? Over here we have an organization called 'aware defeat depression' http://www.aware-ni.org.uk/ I used to be involved with them and found them to be very helpful. Hope it's ok to mention them?
http://www.nhs.uk/Conditions/stress-...lp-groups.aspx this is a link to an NHS web-page that might help a little, I'm sorry I can't do any more for you so I'm sending you a big big hug so you know you are not alone, take care.
06-24-2013, 10:58 AM   #20
723crossroads
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It honestly sounds like your husband may be hoarding 723crossroads. Hoarding is listed as a possible symptom of OCD. http://www.mayoclinic.com/health/hoarding/DS00966 Best treatment to start out with would be therapy honestly from someone who specializes in hoarding (for him and for both of you if you feel its needed because if we start getting mad at the person who has a problem that needs help, then that just causes more problems). My parents were both hoarders so the house got pretty bad when we were kids. That doesn't mean your house is ever going to be a disaster though. Its very possible that he will only hoard in that one section that he feels he's allowed to.
His Mother was a hoarder. When she died we threw away papers from the last 20 yrs she saved"Just in case". She also hoarded clothes, tons that she never wore once, shoes too and purses. Also groceries and she would not let us throw away outdated foods. So we had to sneak and do it. She would eat it if we didn't. She had enough pasta and jello and canned goods to feed the community for a week! It was obvious there was a problem. So he takes after her. His pile is just by his chair. He tries to start new ones and i just put it over with his chair. He promised he is cleaning it up last night. We'll see. I don't get as angry as I used to, I have learned it isn't worth the fight. But I do insist he clean it up every few months unless we are getting company. Then he has to do it!
06-24-2013, 11:35 PM   #21
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So he is able to clean it then? That's a start. Has he ever considered therapy for it or for the OCD or is it just not that big of an issue at the moment?
06-25-2013, 12:24 AM   #22
upsetmom
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Hi everyone....l just found this support group.

I'm a caregiver to both my husband and daughter.

My husband has a benign brain tumor that seems to keep growing back. His latest MRI shows that it has slightly grown and there is more damage from the radiation he had done....he was already depressed.....but lately he has also become suicidal..... His psychiatrist has increased his medication which seems to have helped a bit. This has put so much pressure on me....l seem to panic all the time and jump at the slightest noise....Life's very hard l don't known how i cope some days.
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06-25-2013, 12:42 AM   #23
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That's really rough upsetmom. I'm so sorry you're going through this and that he's suffering so. Is it inoperable? We're all here for you.
06-25-2013, 01:11 AM   #24
upsetmom
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Hes had 4 operations in the last 5 years. Its attached to his brain stem so they can't remove the whole thing...This type of tumor isn't supposed to grow back for for a long time if ever.
06-25-2013, 02:19 AM   #25
Jennifer
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I'm sorry. D: Feel free to vent it all out here anytime.
06-25-2013, 10:54 AM   #26
723crossroads
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So he is able to clean it then? That's a start. Has he ever considered therapy for it or for the OCD or is it just not that big of an issue at the moment?
He doesn't acknowledge that it is a problem. He would never go to therapy, god forbid he talk to someone about it!!! he loves the show MONK! I think it is hilarious! It's not that big and issue. I used to get embarrassed about him using tissues to open doors, etc... I talked to our Dr. about it and he said, it is a good practice to do that with all that is out there!!! So, I just ignore it now! The papers by his chair are my biggest challenge! But I have learned seriously, not to keep harping unless it gets really bad, like now.
06-25-2013, 10:57 AM   #27
723crossroads
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Hi everyone....l just found this support group.

I'm a caregiver to both my husband and daughter.

My husband has a benign brain tumor that seems to keep growing back. His latest MRI shows that it has slightly grown and there is more damage from the radiation he had done....he was already depressed.....but lately he has also become suicidal..... His psychiatrist has increased his medication which seems to have helped a bit. This has put so much pressure on me....l seem to panic all the time and jump at the slightest noise....Life's very hard l don't known how i cope some days.
So very sorry for what you are going through hon! I have been to the mode you are in with the panic attacks and it's no fun. Make sure you reach out to us as often as necessary because I used to keep it bottled up and became very ill myself. You need an outlet where you can feel a release of some sort.
I will keep you in prayer!
06-25-2013, 10:36 PM   #28
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So sorry for what you are going through. I really think you should seek some medical help now. Your meds need some tweaking it sounds like and you need to find a way to communicate with your husband how badly his anger is affecting you without it causing him to be more angry. You could try first really sympathizing with him and saying how sorry you are for all he's going through. But also you need his support right now too. Be very kind and to the point and then reiterate how much you know what he is going through affects him. But you can't be his outlet anymore because it is making you sick. Try it and let us know what happens. If you truly feel you are in danger, there are shelters you can go to. I know this is probably not an issue, but just want to put it out there in case you do.
Thank you 723,,,
Tomarrow I have an appointment with my psychatrist he doesnt know about this last thing with my husband (Last Monday he tried to commit suicide but I stopped him). So Im going to see if my psych can switch my Ssri & up my benzo. Ive been on so many psych meds that I may just be burned out on the Ssri's. My husband hasnt been hateful for the last three days (due in part to the pot I gave him. No jugdement. It really helps his symptoms).
06-25-2013, 10:44 PM   #29
723crossroads
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I understand about the pot. I used to use it too years ago. I hope everything works out for you. More drugs may not be the whole answer though for you. It is he who needs the help with counseling, not you.But if you do need it, there are alot of churches that have support groups that are free and private and very helpful. When my kids were on drugs, I went to one and it saved my life because their addiction about killed me. Just as his illness and being angry is so hard on you. I hope you can find someone nearby or a group so you have people to help when this happens.

Last edited by 723crossroads; 06-26-2013 at 02:28 PM.
06-25-2013, 10:44 PM   #30
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I am sorry that you are living through so much difficulty, it seems that life never just throws one thing at us at a time but many issues to deal with. Do you have any support groups or charities that would be able to offer some form of support? Over here we have an organization called 'aware defeat depression' http://www.aware-ni.org.uk/ I used to be involved with them and found them to be very helpful. Hope it's ok to mention them?
http://www.nhs.uk/Conditions/stress-...lp-groups.aspx this is a link to an NHS web-page that might help a little, I'm sorry I can't do any more for you so I'm sending you a big big hug so you know you are not alone, take care.
Thanks Lizbeth...
I live in a really small rural town. The closest big city is 30 miles away. My small city has a support group, but its more for dual diagnosis mental issues. Hopefully, my doctor tomarrow will help. Im going to see if he knows of any support groups for me and/or my husband. We both need it, really. And hugs back to you
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