# Caregivers Support Group



## Jennifer

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.  :ghug:

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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## Jennifer

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.


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## Jennifer

Bumping this up for others to see. Moved it to the Support section instead of the subforum it was in.


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## Hope345

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.


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## Hope345

What is one of the biggest hurdles you face as a caregiver?


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## Jmrogers4

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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## Jennifer

Hope345 said:


> 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.


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## Hope345

*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.


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## Mehita

Hope345 said:


> 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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## lizbeth

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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## Jennifer

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!


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## lizbeth

Thank you means a lot. :ghug:


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## Hope345

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.


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## lizbeth

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.


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## thunderbear1

Hope345 said:


> 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.


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## 723crossroads

thunderbear1 said:


> 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.:ghug: I know this is probably not an issue, but just want to put it out there in case you do.


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## 723crossroads

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?


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## Jennifer

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.


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## lizbeth

thunderbear1 said:


> 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-anxiety-depression/Pages/Depression-help-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.:ghug::ghug:


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## 723crossroads

Jennifer said:


> 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!


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## Jennifer

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?


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## upsetmom

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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## Jennifer

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. :ghug:


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## upsetmom

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.


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## Jennifer

I'm sorry. D: Feel free to vent it all out here anytime.


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## 723crossroads

Jennifer said:


> 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.


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## 723crossroads

upsetmom said:


> 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!:heart:


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## thunderbear1

723crossroads said:


> 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.:ghug: 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).


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## 723crossroads

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.:ghug::heart::hug:


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## thunderbear1

lizbeth said:


> 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-anxiety-depression/Pages/Depression-help-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.:ghug::ghug:


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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## lizbeth

thunderbear1 said:


> 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).


I don't think any one here will judge you, we understand and want to help support you . 

Upsetmom...I'm glad you found this group, welcome and please feel free to vent away and know that we are here .

I had to call my dad's psychiatrist cos we think he's suffering a hepatic encepholopathic episode, thankfully I feel like we have finally been listed too and he is going to arrange a home visit which is amazing. Dad is convinced he is infested with bed bugs, that they are in his mouth, eyes and ears. There is nothing there but he can't accept that. It's really upsetting that we can do nothing to help him . I'm so glad his Dr is doing something, fingers crossed dad gets some help. This has been going on for months and countless gp visits have not helped. Dad is hard work but it's not right that he suffers like this.


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## 723crossroads

lizbeth said:


> I don't think any one here will judge you, we understand and want to help support you .
> 
> Upsetmom...I'm glad you found this group, welcome and please feel free to vent away and know that we are here .
> 
> I had to call my dad's psychiatrist cos we think he's suffering a hepatic encepholopathic episode, thankfully I feel like we have finally been listed too and he is going to arrange a home visit which is amazing. Dad is convinced he is infested with bed bugs, that they are in his mouth, eyes and ears. There is nothing there but he can't accept that. It's really upsetting that we can do nothing to help him . I'm so glad his Dr is doing something, fingers crossed dad gets some help. This has been going on for months and countless gp visits have not helped. Dad is hard work but it's not right that he suffers like this.


So sorry about your Dad! That is horrible. Has he ever had dementia? Hoping and praying they find out what is causing this and he can get back to normal.:thumleft:


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## thunderbear1

Lizabeth, I hope all goes well with your Dad! My papaw had dementia from Alzheimers and he had those kind of delusions also.... My thoughts are with you. It is truly hard to see that happening with your one of your parents xx


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## lizbeth

Thank you for your thoughts . The gp said it could be part of his personality disorder or the start of dementia? His psychiatrist seems quite concerned. Dad got his mattress taken away and fumigated and said he was told it's Australian spider beetles. He is still seeing and feeling them  but they are definitely not there.


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## thunderbear1

Poor guy! I have mental illness and delusions are unsettling but those kind must be terrifying for him! I hope its something the docs can treat easily. What personality disorder has your dad been dx with?


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## upsetmom

lizbeth said:


> Thank you for your thoughts . The gp said it could be part of his personality disorder or the start of dementia? His psychiatrist seems quite concerned. Dad got his mattress taken away and fumigated and said he was told it's Australian spider beetles. He is still seeing and feeling them  but they are definitely not there.


Your poor dad. I hope they can help him.


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## upsetmom

Does anyone know if this sounds like dementia.

My dad is 68 and lately he has become very forgetful...its mainly his short term memory. My mum will tell him where there're going and on the way there he'll ask where they where going. The other day i got a call from my mum saying he went shopping 3hrs ago and wasn't back. I found him in the carpark looking for his car...he had no idea where he had parked it...i found the car on the opposite side of the shopping centre...no where near where he had thought it was. And he seems to repeat stories all the time....sometimes within minutes.

He saw a specialist who doesn't think he has dementia. Hes doing some blood tests at the moment.


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## Jennifer

My grandmother started doing things just like that during early stages of either Alzheimer's or dementia (I forget which came first but I know she had both). She would go for a walk and be gone for hours then my dad would get a call from the police saying that they had his mother and to come pick her up. She had gone for a walk to the little bread store quite a ways away and seemed to forget how to get home (I believe the cops picked her up because she was walking back and forth at a crosswalk in the street). Her symptoms got worse later on. She did repeat stories often yet later on she didn't really know who we were. She told me I was pretty a lot I remember which I got creeped out by when I was younger but thinking back on it she probably didn't remember telling me.


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## DustyKat

upsetmom said:


> Does anyone know if this sounds like dementia.
> 
> My dad is 68 and lately he has become very forgetful...its mainly his short term memory. My mum will tell him where there're going and on the way there he'll ask where they where going. The other day i got a call from my mum saying he went shopping 3hrs ago and wasn't back. I found him in the carpark looking for his car...he had no idea where he had parked it...i found the car on the opposite side of the shopping centre...no where near where he had thought it was. And he seems to repeat stories all the time....sometimes within minutes.
> 
> He saw a specialist who doesn't think he has dementia. Hes doing some blood tests at the moment.


On the surface it sounds like Dementia but like many diseases (Crohn's included it would seem!) it is something you would not like to label someone with without looking into other things first. 

The type of things that the doctor may like rule in or out first as they can mimic the symptoms of dementia may be things like: 

- Reactions to medication.
- Nutritional deficiencies.
- Infections. That may lead to a condition called delirium. 
- Metabolic disorders e.g. thyroid. 
- Cerebral disorders like tumours or haemorrhages. 
- Lung and heart conditions can cause hypoxia, a lack of oxygen that cause symptoms of confusion. 

Many of these conditions will show up with blood or urine tests.

Good luck hun. I hope it turns out that it is something easily fixed. :ghug: 

Dusty. xxx


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## thunderbear1

Hi all. I hope you guys are doing well. I just stopped in to vent a little. Hubby was doing better but then he lost his Flagyl and symproms started again. I just found it about an hour ago. Its been a few days since the med was lost so Im really hoping that it doesnt affect the effectiveness. He havingtrpuble eating, he says it feels like hes digesting glass :-( I feel so helpless. He really likes ice cream but lactose is on the bad list but I found some chcolate lactose free ice cream that has the same amount of calories as regular. So I started making him lactose free milkshakes with vanilla soy milk, a little coconut milk & 4 Tbs of pure local honey. The shakes have been a Godsend. He can drink them and not feel too full but get a good calorie boost plus the salicylate in the honey is great for inflammation. It beats Ensure! Im just feeling a little (a lot) overwhelmed. My psych thinks Im dissociating and I do too. Just from worry and hi stress/anxiety. I wish there was a magic pill to help hubby his weight back. I think hes is depressed about his thin appearence. Its really messing with his self esteem. I dont know how to handle that other than reassuring him. His family doesnt help cause theyre always telling him how "bad" or "tired" he looks. I almost want to say " Have you put on weight? Cause you look chunky" but Im chunky and that wouldnt be very nice. Im sure that stress is a huge contributing factor in this flare. He is under enormus stress. Financial, emotional and family relationship stress. His brothers girl friend has his whole family believing hubby is on drugs. So they are always questioning him and accusing him (we barely pay our bills Idk how they think we could afford to buy drugs). And theyre not nice about it at all. We live right next door to them, so its hbard to avoid them.....
Ugh. Its a mess! Sorry for rambling! Thanks for reading


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## upsetmom

I'm starting to get very worried about my dad.  I'm getting a call just about everyday that he has gone out and not returned...Today l went looking for him for an hour and never found him. He eventually showed up and didn't know where he had gone. I've told my mum not to let him go anywhere on his own but she still does...Thursday l take him back to see the DR hopefully he has some answers ... I have enough running around to do with my husband and daughter and now this..


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## thunderbear1

I think Hubby lost the new GP today. He spent all day yesterday in the ER cause of shooting pain that went from his left side to the right. Its very bad. The ER didnt do anything for his pain they said his GP would. So he went to his GP to get relief and GP said that "abdominal pain" dont meet the new criteria for pain meds. So hubby got into an argument with him. And they both stormed out. Abdominal pain, yea right. I have abdominal pain what my hubby is having sounds like burning your skin off and rubbing sandpaper on the burn. Except its in his intestines and the sandpaper is food and stool. SMDH! I dont have CD nor am I a doctor and even I can see that it isnt just "abdominal pain"! Im so mad right now!! :angry-banghead:


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## thunderbear1

Well, hubby gained 3 lbs in a week! I know its not abig deal to most but yall get why it is! Hopefully itll continue


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## Jennifer

So we found out today that my grandpa might have pancreatic cancer. He had a ultrasound of his liver where they noticed something odd on the pancreas so went in for an ultrasound for the pancreas where they found and mass and his GP thinks it may be cancer. So now we're waiting for the insurance to approve a biopsy to find out for sure. Dunno when that's going to happen.

He just had a pacemaker put in on the 22nd of July so he could live longer yet if he has cancer then, well this just sucks.


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## upsetmom

Jennifer said:


> So we found out today that my grandpa might have pancreatic cancer. He had a ultrasound of his liver where they noticed something odd on the pancreas so went in for an ultrasound for the pancreas where they found and mass and his GP thinks it may be cancer. So now we're waiting for the insurance to approve a biopsy to find out for sure. Dunno when that's going to happen.
> 
> He just had a pacemaker put in on the 22nd of July so he could live longer yet if he has cancer then, well this just sucks.


:ghug:..I'm so sorry to hear this.


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## lizbeth

Jennifer said:


> So we found out today that my grandpa might have pancreatic cancer. He had a ultrasound of his liver where they noticed something odd on the pancreas so went in for an ultrasound for the pancreas where they found and mass and his GP thinks it may be cancer. So now we're waiting for the insurance to approve a biopsy to find out for sure. Dunno when that's going to happen.
> 
> He just had a pacemaker put in on the 22nd of July so he could live longer yet if he has cancer then, well this just sucks.


I'm so sorry Jennifer  really hoping it's not, good luck.


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## Moogle33

Hi there! :sign0144:

I am a caregiver for my mother and uncle. Both of them are diagnosed with schizophrenia. My mother is 64 and also has congestive hearth failure as well. I started looking after them since my grandfather passed in 2009.

Not too coincidentally, I've been diagnosed with IBS since 2009. My symptoms started a few years before, but got really bad after some food poisoning. In 2010 I was diagnosed with gastroparesis after a gastric emptying exam. I was tested for crohn's but it was negative. 

It's been challenging to care for my family and our house while dealing with the stomach issues. I'm doing OK though. I'm currently looking for p/t work because income is really tight. This is probably the best support group forum I've been on btw. I am really happy to be here!


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## upsetmom

Welcome Moogle33

I'm sorry to hear that your dealing with so much.:hug:

Remember looking after others can take a toll on your own health so please look after yourself as well. 

Take care xxx


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## Moogle33

Thanks upsetmom. I'm doing my best.  I saw your post above. Is your Dad doing ok?


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## upsetmom

No hes actually getting worse. 

He had a CT done the other day but we don't see the Psychiatrist till next month. He thinks its Alzheimer's Disease.


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## upsetmom

My dads Psychiatrist called me today. 
The CT showed excess fluid on the brain...he did tell me the name but l can't remember. 
Have to make an appointment on Monday to see the specialist. Hopefully it will be soon.


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## lizbeth

Upsetmom, gee that's not so good, i really sorry to hear your news.

Moogle, welcome , I've getting to know you on another thread and goodness you do have a lot on your plate .

I sometimes wonder how we keep going? I think we all deserve medals.


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## upsetmom

lizbeth said:


> Upsetmom, gee that's not so good, i really sorry to hear your news.
> e medals.


Actually it is good news.. I think..:confused2:

I remember the name..NPH Normal Pressure Hydrocephalus
If caught early the outcome is good. Just have to wait and see what the specialist says.


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## lizbeth

upsetmom said:


> Actually it is good news.. I think..:confused2:
> 
> I remember the name..NPH Normal Pressure Hydrocephalus
> If caught early the outcome is good. Just have to wait and see what the specialist says.


Well I hope you can get a quick appointment, good luck.


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## Moogle33

Hey, thanks Lizbeth! We all deserve medals and a lot of hugs! :ghug:


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## lizbeth

Yeah hugs are good too.


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## Moogle33

I thought today was going to be a good day. I woke up and tried questran to help with my D. It did help, but I ate some foods that made me feel bad anyways. I'm really stressed out about being a caregiver. I don't like being like my mom's parent. Because of her mental illness, she acts like a child. It's so awkward for me. We've been in this spot for about four years. I've tried to move out and get work out of town, but my health was degrading which forced me back home. 

Just needed to vent. Thanks for giving me this forum! I don't have much energy tonight. My stomach feels like hell. I just took a bentyl, can't wait for it to kick in. I'll take my amitriptyline in an hour and get ready for bed soon.


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## lizbeth

Have you tried using heat when your tum is bad?  I use it daily and it really does help me.  It is such a fantastic thing having somewhere to go and talk or vent with understanding people.

I know what you mean about having to be the parent, my dad's behaviour is very childish, wants to be the centre of attention all the time.  For an example, this is a big weekend for me cos my youngest has left home for uni so today we have to go home and leave her, but it makes my dad jealous cos she and I will be getting a bit of attention that he isn't, so he suddenly starts having falls (which I believe are set up), his Dr checked him out and found nothing wrong so he took himself to casualty (where they found nothing either).  He just wanted the focus on him.  He behaves like a baby throwing his take out of the pain!! It's very hard being his carer when he has no regard for my health so I've started to think if he's not bothered about my health why should I care about his? Problem is I do .

Oops sorry for the vent....he just makes me mad.


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## Moogle33

lizbeth, yes! That is just like my mom. She isolates herself at home and gets depressed. As soon as I get a job and spend time with friends, she wants attention. Usually ending up with hospital stays and pain killer abuse. I manage her meds now, so I hide them. 

I've decided to pay the credit card off and put it away. I've fallen victim to the fallacy of the ease of use of credit. It's a silent killer from financial stress. It feels like I'm losing control sometimes. I've never really been in control since I've been a "caregiver". It is the biggest regret of my life, but I know that my mom and uncle don't have anyone else that would care about them. It's sad. I've done the best I can. Now all I can do is pray that the future will be brighter for all of us.


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## lizbeth

Yes Moogle, that's exactly the same! He's in and out of hospital all the time.

It took me a while to realise that I do NOT have to be the one who looks after dad, before mum died she left my two sisters and I a note to say`keep an eye on your dad` not `look after`. Dad expected me to leave my home and family to go and take care of him and told me I had nothing here to stop me moving to him.  He has absolutely no regard for anyone but himself. He has been so draining on my wee sister this weekend, he has no boundaries and says anything he wants no matter how cruel. 

Please don't put them first. I say this cos I put dad first, not intentionally, it just happened and my family got left out, my aunt reckons that's why I've gotten sick, running around after him, working ful time and trying to look after my family.  At one stage my daughter said I might as well be with my dad cos when I wasnt with him I was on the phone with him....and do you know she was right! It was the wake up call I needed, just wish my wee sister could get one she  needs a complete break from  him.


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## lizbeth

Happy New year everyone, I hope that 2014 is a better year than the last and that it brings you all good fortune.

How is everyone these days, Upsetmom how did the appointment about your dad go, what was the outcome of the scan?


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## upsetmom

lizbeth said:


> Happy New year everyone, I hope that 2014 is a better year than the last and that it brings you all good fortune.
> 
> How is everyone these days, Upsetmom how did the appointment about your dad go, what was the outcome of the scan?


Happy New Year!

My dad had a long wait to see the neurologist but things have moved quickly since then.. Hes going into hospital to get the fluid pressure checked....Hopefully before the end of the month.  The neurosurgeon wants to make sure his problems are caused by the fluid, if they are he'll be getting a shunt put in. In the meantime hes getting a lot worse and starting to drive my mum crazy.


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## lizbeth

I am sorry to hear that, I really hope the appointment comes quickly and he can get something done that will help you all. Oh I do feel for you and your poor mum, take care.


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## amnazaheer

nice discussion thanks this is very helpful for me


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## lizbeth

I'm sorry but I need to have a bit of a vent so you can switch off now, if not I thank you for reading.

 My dad is unwell with a variety of physical and mental conditions with mental conditions being the most difficult to deal with. He has always had these issues but they have gotten much worse since my mum passed away nearly 5 years ago (think she protected us from a lot of it). In this time I have done my best to do what I can for him, I'm named as his next of kin, I deal with all the healthcare providers and I have spent so much time with him that my own family said I should just move in with him cos I was never home .  I've also had to deal with my little sister sho has mental problems too. She has only within the last year or so got actively involved with his care, until then it was always left go me.

My gripe is that she keeps saying it's all left to her to do which is so untrue, when she says it I try really hard to say nothing so as not go upset her any more because I know she's not mentally well, but it makes me very important she says. I'm not wanting a medal for what I do but I also don't want to be made to feel I do nothing, that's the job of our older sister who really does nothing. 

I realise reading this back to myself that I sound unfair go her and that it shouldn't be as upsetting as it is. I just don't know what go do for the best anymore ........


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## upsetmom

My dads getting his procedure done on Wednesday. 
Finally we'll know if this is caused from the fluid or if something else is going on. In the meantime he is going downhill so fast.


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## lizbeth

upsetmom said:


> My dads getting his procedure done on Wednesday.
> Finally we'll know if this is caused from the fluid or if something else is going on. In the meantime he is going downhill so fast.


I'm so sorry to hear that , will you find out straight away or will u have to wait to find out?


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## upsetmom

lizbeth said:


> I'm so sorry to hear that , will you find out straight away or will u have to wait to find out?


The pressure will be monitored for 24hrs in some device. l don't know how they'll keep him in bed for that long, we're worried he might try get up and leave.

We go back to the Dr 3 days later for the results.


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## Jennifer

I'm sorry you're dealing with that lizbeth.  I know the feeling so you're definitely not alone and certainly not a bad person for feeling that way. I forget who said it to me, maybe my mother in law, but in the end you know how much work and effort you put in so try not to let what anyone else says affect you as they have no idea because they weren't there. 

I'm sorry you're going through this upsetmom. :hug:


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## lizbeth

upsetmom said:


> The pressure will be monitored for 24hrs in some device. l don't know how they'll keep him in bed for that long, we're worried he might try get up and leave.
> 
> We go back to the Dr 3 days later for the results.


How did it go at the hospital?

My dad's still in hospital, he rolled out of bed Friday night and gave himself 2 black eyes, since then he's not been right. I spent most of yesterday with him and went with him to ct cos he had been too agitated to have one in the early hours of Sunday. Seems he has a bleed on the brain which correlates with where he got hurt, Neuro don't think it's bad enough to cause how he is and probably an infection is partly to blame but it's still a bit of unknown atm. Going back to the hospital later and stay up for a couple of days.


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## upsetmom

lizbeth said:


> How did it go at the hospital?
> 
> My dad's still in hospital, he rolled out of bed Friday night and gave himself 2 black eyes, since then he's not been right. I spent most of yesterday with him and went with him to ct cos he had been too agitated to have one in the early hours of Sunday. Seems he has a bleed on the brain which correlates with where he got hurt, Neuro don't think it's bad enough to cause how he is and probably an infection is partly to blame but it's still a bit of unknown atm. Going back to the hospital later and stay up for a couple of days.


The hospital stay was a nightmare.
When he woke up he kept trying to pull everything off. This went on all day and night. I asked for him to be sedated but it wasn't an option as they had to keep him awake for 24hrs just in case of a bleed. They actually had a security guard sit with him all night. 

I'm glad its over. Appointment with the surgeon isn't till the 13th. We should have an answer then.

I'm sorry to hear about your dad..:ghug:


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## upsetmom

How's your dad lizbeth?

My dads going downhill by the day. Just before he went into hospital he started to hallucinate and its getting a lot worse. Yesterday he was hysterical,  he kept screaming, crying thinking someone was out to get him. It took all day to calm him down. I'm going to try getting in touch with his psychiatrist today. 
This has started to take a toll on all of us, its not easy to deal with.


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## lizbeth

upsetmom said:


> How's your dad lizbeth?
> 
> My dads going downhill by the day. Just before he went into hospital he started to hallucinate and its getting a lot worse. Yesterday he was hysterical,  he kept screaming, crying thinking someone was out to get him. It took all day to calm him down. I'm going to try getting in touch with his psychiatrist today.
> This has started to take a toll on all of us, its not easy to deal with.


I think when a parent becomes the vulnerable one it's very difficult to accept and to deal with, when you become the person that is the one saying "the bogey man isn't hiding in the closet" you know you have a problem.

Upsetmom I'm so sorry that your dad is going down so quickly, I pray that this is just a blip and that he gets over this episode. It's happened before with my dad and it seems to be that way again. He is still being looked after for all the same reasons but the hospital appear to be content with progress so far. He is to have a 3rd brain scan on Monday and we shall take it from there. I came home for a couple of days, it's my eldest daughter's birthday tomorrow , back up to Belfast on Sunday.


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## lizbeth

Update after today's scan is that bleed has got worse so dad is to be moved to another hospital to undergo brain surgery to drain the bleed. I was with him when he got the news and we were both rather shocked. It's kind of strange that he has said for years that he doesn't want to be alive yet he reacts badly when he gets bad news. I can't help but wonder too at a man of his age and poor health being put through this type of surgery?


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## upsetmom

:ghug:..I'm so sorry to hear about your dad. I hope everything goes well with his surgery.

My thoughts are with you.:ghug:


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## lizbeth

Thank you. Well be thinking about you on the 13th.


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## upsetmom

My dads been diagnosed with Normal Pressure Hydrocephalus. Surgery to get a shunt put in should be done within 3 months.

His Dr said we should see a 90% improvement .....so there might be light at the end of this tunnel.


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## lizbeth

That at least sounds more positive especially as they have a plan on how to move forward, I really hope the surgery is dinner rather than later .

My dad has finally been moved to neurosurgery, well is being moved right now, so hopefully tomorrow night tell us what is likely to happen next......yipee.


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## upsetmom

Dads been in hospital for nearly 2 weeks now as he was very disorientated and agitated. Surgeon has decided to operate tomorrow. 

I won't be here as l have to take my daughter to see the Endocrinoligist and the GI. I was going to change the appointments but an ultrasound  for delayed periods showed no uterus...I'm obviously worried sick over this and need some answers. 

How's your dad going lizbeth?


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## upsetmom

Surgery's been postponed. He started getting a lot of pain under his right ribs, blood test showed elevated white cells and abnormal liver function so they're doing an MRI tomorrow to check the gallbladder.


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## Jennifer

Life is crap lately. Grandpa is talking about wanting to get a knife for "protection" against his own son (my uncle who had to move back in with them because he's disabled, physically not mentally). Since my grandpa does have brain damage I do think that he would stab my uncle or try to if he got a hold of a knife. 

My grandma is hard of hearing so my uncle has to raise his voice so she can hear but it gets frustrating so sometimes you do yell a bit but all my grandpa hears is raised voices and yells at my uncle to stop yelling at my grandma. Plus my grandma makes up stories to get sympathy or create drama in the family, to give her something to do I guess since she hasn't left the house in the past 30 years or so. This family is just deteriorating.

I started taking Klonopin twice a day again and it has helped but sometimes everything is just too much. The housework can wait in my opinion. I'm on SSI and ever since I got married Social Security started taking out money based off of my husband's part time job. In a way I do work by doing my best to keep the forum running, researching, tech support, problem solving and so much more. I thought about getting off of disability and try working but then both my husband and I would make too much money and would both lose Medicaid. We need the insurance cause we're both fucked up. Plus I need to stay disabled for another year and a half at least to wipe my student loan slate clean. I honestly don't know if I could handle working anyway but the extra 40 bucks for working twice a month by helping out my grandparents isn't cutting it (my dad was laid off a while back and he took my job basically). 

Thanks for letting me get this off my chest. Crohn's wise, still in a flare and tired as hell.

Good news is that Medicaid is bringing back the dental plan May 1st so I'm gonna have so much work done you wouldn't believe. Also on the 21st this month I'm getting my eyes checked to get a new prescription for my glasses since my eyes are getting blurry again. 

I've also been looking for doctors for my mom to help with her diabetes (I just found out that the doctor she sees is an Osteopath, the fuck, she didn't even know or knew what one was). She told me to not go changing doctors on her without her permission. The fuck? She's been hanging around my grandma too much. I also make doctor appointments for my husband cause he's too busy with work.

I guess I'm just letting you all know that I'm really busy. Thank you for all of your help guys. I really do appreciate it. 

Also today is my 16th day without a real cigarette. I switched to an e-cig. Still has nicotine but I can mix the liquids and make the dose higher or lower depending on how I'm doing and I have a second one with about 3mg of nicotine (the other has a little over 12mg) so I can eventually start tapering. It's cheaper in the long run too. I couldn't afford cigarettes anymore in the first place and my husband felt bad so with the little money he has from his part time job (and I think from his tax return), he bought them for me. I also joined an e-cig forum to get help with any details and support in that department. So far so good.  With all this going on, I can't stop the nicotine just yet.


----------



## Jennifer

I posted this in my other thread about my Grandpa's stroke and all that I've been through from that but thought I should mention it here as well since this support group is for caregivers, not just about who they are caring for but how it's affecting them both physically and mentally.

Grandparents are still alive. They fight often (yelling usually) or the lovely one about not being able to see the urinal and being so upset that my grandpa threatened to throw himself onto the floor and did so right after. If I were still living there, things wouldn't be as bad for them but my life would be complete crap so fuck that.

As for me, I can no longer do any minor lifting at all. Last time was last Friday on my Grandma's birthday, we took them out to eat. At most now I'll clip his fingernails but that's it. It's possible that I may need back surgery at this point because something is pressing on a nerve so badly that my left leg goes completely numb in the night and when I wake up and move, it feels like I'm being branded with a hot poker on the surface of my thigh so I wake up my husband by screaming in pain. It also goes numb while standing, sitting, walking, any position but laying on my right side (which makes my back go numb, no winning here). Once my left leg has gone numb long enough it leaves lasting pain like some sort of welt in my thigh (it's doing it right now).

I'll be having an MRI on both my lumbar spine and my pelvis to see if they can find the cause. If nothing of note shows up in the MRI then I'll request another MRI for the middle of my back (since it also hurts and goes numb there, I've had an MRI there in the past which showed two bulging discs touching my spinal cord) because I do not want to just be sent to pain management. I don't want permanent nerve damage from this and hope that I don't already. So pain management or referral to Neuro surgeon depending on the MRI results. I'll let you know when I have the MRIs done or when they are.


----------



## lizbeth

upsetmom said:


> Dads been in hospital for nearly 2 weeks now as he was very disorientated and agitated. Surgeon has decided to operate tomorrow.
> 
> I won't be here as l have to take my daughter to see the Endocrinoligist and the GI. I was going to change the appointments but an ultrasound  for delayed periods showed no uterus...I'm obviously worried sick over this and need some answers.
> 
> How's your dad going lizbeth?


As if you didn't have enough to worry about!! I hope everything is ok with your daughter.

Jennifer it sounds like you could do with a break to give your body and mind a chance to rest, I'm sorry that life is so crazy. May I ask what kind of brain damage your grandpa has?

Update on my dad.....he is still in hospital, 10 weeks now, he had his brain surgery and recovered extremely well, we thought, he got moved back to his first hospital to the same ward he had been on, then got moved to a medical ward 2 nights later and then it all went downhill from there.  Having had concerned calls from my sisters that he wasn't right I called the hospital on a number of occasions to express our concern and was totally dismissed by an Indian nurse (apologies here I don't intend to be ignorant and I most def an not racist), we had a definite language barrier right from the start, she made it very difficult to speak to her and when I did she laughed in my face at what I was telling her. I basically had to have a tantrum in the corridor for her to get me a Dr. 5 days after expressing our concerns dad was diagnosed with delirium caused by his brain injury and surgery, it took me to call his psychiatrist who arranged for his colleague to see dad asap who made the diagnosis.

These last few weeks have been hell, dad believes that a "Mr Stewart" is trying to kill him and is petrified, especially at night, he thinks he's trying to shoot him or take lumps off his face with a cut throat razor. He thinks the staff are all out to hurt him so doesn't tell them much so they keep telling me he's settled, I no longer call the hospital cos it's not true. I arrived one night, having been told he's settled, to find him trying to hide from the men that were throwing stones at him and he was trying to push the stones off his bed . He was absolutely convinced. There have been so many things like that, it's awful seeing him so scared. We have been told we may need to consider that it might not be a temporary state. He's too be moved to a rehab unit for further assessment.

I'm exhausted, driving up and down, no routine, no way of cooking properly and I'm living on my safe foods which are carbs so I'm piling on the pounds cos of the carbs and extra insulin. I'm staying in my dad's flat cos I can't afford to stay in the guest room and it's costing me a fortune driving so much. And I didn't intend for this to be a big rant but it seems to have turned out that way so I'm really sorry.

To finish on something good, as you will know from earlier posts my dad is not a very nice man and in normal life finds pleasure in being cruel and hurtful to people, especially me, but weirdly since the brain injury his personality has changed and he's lovely.  We've actually been able to have lots of nice visiting with him. Apparently the area of the brain that was injured does not relate to personality?? Strange  

Thanks for reading and being here. I haven't been on in ages so you all got months worth of stuff.


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## Jennifer

That's a lot to go through with your dad lizbeth. I'm so sorry. We all need rest and so do you so do your best to take care of yourself too. 

I don't know what kind of brain damage he has exactly. He had a massive stroke back in 2010 and it took them almost 4 hours to give him the medication to clear the blood clot. Dunno why it took so long but it was a 50/50 chance that it would either help or kill him. Either way he hasn't been the same since. Sometimes he acts like a bratty child not getting his way. Other times he seems somewhat normal yet he talks about women in a dirty way now and he would have never done that before. He also get angry easily and has hurt others and himself over minor things and deals with depression as well. Some days are worse than others with all these changes.


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## lizbeth

:ylol2:





Jennifer said:


> That's a lot to go through with your dad lizbeth. I'm so sorry. We all need rest and so do you so do your best to take care of yourself too.
> 
> I don't know what kind of brain damage he has exactly. He had a massive stroke back in 2010 and it took them almost 4 hours to give him the medication to clear the blood clot. Dunno why it took so long but it was a 50/50 chance that it would either help or kill him. Either way he hasn't been the same since. Sometimes he acts like a bratty child not getting his way. Other times he seems somewhat normal yet he talks about women in a dirty way now and he would have never done that before. He also get angry easily and has hurt others and himself over minor things and deals with depression as well. Some days are worse than others with all these changes.


You've practically described my dad before the brain injury occurred! He has lost home help services because of his inappropriate comments and has been known to get himself intentionally hurt, especially if someone else is getting attention eg, when I found out I needed surgery very strangely ten mins later dad rang to say he was on his way to hospital cos he had "dropped" a shelf on his leg and needed stitches, he was always doing things like that.

He's taken another bad turn and yet again is taken too many days for hospital staff to acknowledge our concerns, and he has an infection brewing? I think.

I'm so exhausted and tired of having to be away from home. My sisters
 are complaining about the disruption but at least they get to go home and sleep in their own beds and cook proper food, I'm the one who has to sleep in a stinky flat and make do with salads or microwave food,, not the best for a crohns tum .  I'm sorry for the moan, it just got the better of me.......

How is everyone else doing?


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## upsetmom

:ghug: lizbeth l'm so sorry your going through so much. I know how exhausting it is but try to take care of yourself. 

My dads been in hospital for 5 weeks. He had his gallbladder removed and there were a lot of complications. When they went to operate they found the gallbladder had gangrene and it erupted. So they had to cut him open to clean everything and in the process they cut the bile duct so he just had another op to repair the duct.. And now on top of everything hes got pneumonia. Its never ending.


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## lizbeth

upsetmom said:


> :ghug: lizbeth l'm so sorry your going through so much. I know how exhausting it is but try to take care of yourself.
> 
> My dads been in hospital for 5 weeks. He had his gallbladder removed and there were a lot of complications. When they went to operate they found the gallbladder had gangrene and it erupted. So they had to cut him open to clean everything and in the process they cut the bile duct so he just had another op to repair the duct.. And now on top of everything hes got pneumonia. Its never ending.


It's been a while since I've been here, how are things with you?

My update. Sadly I am no longer a caregiver, my dad passed away 2 weeks ago on May 8th exactly 5 years and 1 hour after my mum. Even up to the day before the drs couldn't explain why he was in the condition he was but we knew it was because he had given up and couldn't take anymore of this life without mum.  He slipped away with us by his bed and me standing stroking his hair telling him I loved him. He had made his peace with me a few months back and from then I had my loving father back who smiled at things and appreciated me again, for that I am truly thankful.  The last few years of hateful behaviour was wiped clean and doesn't matter any more and I loved him very much, if I'm honest more than I realised but I believe he knew I loved him. I take a bit of comfort that he is back with mum where he always wanted to be.


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## upsetmom

lizbeth l am so sorry to hear about your dad. :ghug:..Know that you are in my thoughts and prayers.

Dads still in hospital. He got an infection where the GB cavity was and they just can't get rid of the infection.


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## lizbeth

Thank you, please know that means a lot.

I really do hope the hospital can get your dad sorted out, take care.


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## busymom

I'm new here been trying to find something like this for awhile and finally came across. Hoping to get some good opinions from people who understand what i'm dealing with. 

My spouse had a colonoscopy beginning of march and everything went down hill from there. He was diagnosed with severe UC spent 15 days in the hospital. Went from 165lbs to 113lbs. Since march he has had 5 Remicade infusions and goes monthly now. He's also on prednisone daily along with an anti heartburn medicine. He also goes for blood and iron infusions regularly. In April he relied on me for everything including getting out of bed and showering. May was a great month seemed he was in remission and things were looking up. We have 4 young children and I'm currently a stay home mom, thank god.June hit and everything went downhill again. I try so hard to be understanding. One day I can wait on him hand and foot and be okay and others I'm sick of taking care of a 5th child who doesn't want to take care of himself. He does nothing but sit in bed and sleep, doesn't maintain his hygiene or help with the kids or house maintenance. He won't even make a list of meals he can or wants to eat so I can go shopping for them.I get "I don't know". Dr has been pushing since day one for him to go for surgery but he doesn't want to be stuck with an ostomey bag the rest his life. As far as I'm concerned that seems like a better life then what we currently have. I'm no longer his spouse I'm now a caregiver. There's no physical touching I'm lucky if he holds my hand.  I was diagnosed with severe depression in 2013 apparently was around long before i had realized it. So trying to stay sane and take care of myself when i\m use to putting everyone else before me is quite difficult

I feel horrible for not always being compassionate and understanding but I'm so frustrated. Any thoughts, suggestions, opinions are welcome.


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## upsetmom

:ghug:..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..:ghug:


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## busymom

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.


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## Jennifer

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.


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## lizbeth

busymom said:


> 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:ghug:.


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## busymom

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.


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## Grumpy1

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.


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## lizbeth

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.:redface:

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.


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## busymom

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.


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## Grumpy1

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.


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## Dragon

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!


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## StrugglingMom&Wife

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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