We could kind of be taking a poll here! if enough people said yes we could submit these comments and suggestions to the proper companies?
What a great idea.
I used to think we should all go to some kind of sanitarium, like they used to have, a place in the country away from the general populace, for the duration.
Maybe with the new oral meds, the insanity will be a thing of the past?
Shutter Island, maybe??? OMgosh this brings back memories. Sometimes, if I was feeling gracious, I would just go lock myself in the bedroom just to spare my family from having to deal with me. Itchy and bitchy...yup, like a porcupine. With rabies, lol!!
Now that my daughter has started treatment, I vote Yes!!! I need something!! Anxiety and anger...arg.
Itchy and bitchy like a porcupine with rabies! GREAT stuff!
Oh my...you treated for hepc and now your daughter? Omg, are you your daughters care giver? I so feel for you!
I will google shutter island! I think inducing a nice little coma might work too!
If we could just get insurance to pay for a country stay!
As a caregiver to someone who did treatment for over two years, I'll be the first to admit there were some tremendously difficult times. Not the worse we've seen, but treatment can certainly put the ties of any relationship to the test. I don't believe treatment is such that everyone around someone treating needs to be stay away (though some did), but it certainly presents a dynamic into human interaction that takes adjustment on both sides.
Personally, I think as a society and as a medical community we rush to identify a symptom and then want to know what pill to take to make it go away. If situations demand that medication is the best solution there are certainly places its appropriate, but depending on the situation, it may be just a band-aid for a bigger underlying problem.
The idea of mental health support for caregivers who need it is wonderful, but I don't think just prescribing an anti-depressant is the best first step to healing. Counseling, group therapy, meditation, yoga... there are many other avenues a caregiver can take before deciding to add more pills to the medicine chest. Just my two cents :). ~eureka
PS. A happy Thanksgiving to all.
Though I hazard to say there may be folks around me who disagree and think I really need to take a chill pill.
I believe a class should be offered for caregivers as well,
Effectively administered Information is key...how's that?
Oh goodness, what a ride.
Under sides, they should have been a little more precise, like...the patient may have insanity type symptoms. This is a normal side effect, don't worry. These symptoms should diminish after tx, but not within a timely manner!
"insanity type symptoms"
My own barometer for insanity didn't raise alarms at my husband treatment behavior, but maybe therein lies my problem... :) .
Funny stuff, but true!
I don't know about a sanitarium though, I'm thinking more along the lines of an insanitarium :o)
I don't see the drug companies going for it though, unless they had something to cure that too.
I am Thankful that my family stuck with me through my Tx. I had my own bedroom where I could go (or be sent) to give ourselves a break.
On the funny side, like Jimmy Buffett says "if we couldn't laugh, we would all go insane"
Happy Thanksgiving All!
I am thankful for having found this site!
Be glad your husband wasn't on triple therapy, I hear it's even more of a buger than the standard SOC. If you have any to share...I would love to hear more stories from you as a caregiver. I may try get my husband on here to say a few words about me...if he dares!
I will say 24 hour caregiving is not for the feint-hearted. Despite the fact that SOC was grueling, I very much wish he had the chance to try triple therapy, but that's a discussion for another day. What I will say is that this forum and the Hep C community members through the years provided me with incredible resources and support and friendship, more than I ever imagined when I first signed on as a member.
The folks here are my 'mental health' support in so many ways... maybe if I were prescribed some good ADs I would stop OCD posting here and go away, though I think this forum is more cathartic :).
It's Thanksgiving Day... just give your husband a big hug, it's great he's by your side, and enjoy his presence and support. :) ~eureka
Maybe there just should be a "Hepc Caregivers Support" heading? A place where family and friends can go to discuss there "slayers" issues!
A place where our loved ones could vent and get support!
Hmmmmmm.....That might be like opening a can of worms!
Maybe that's not such a good idea!
I am definitely WHOOPING him on today! Doin all the cookin! He's a champ, my family has been amazing! I do hear of a lot of people that are having trouble with there spouses and boyfriends and girlfriends and family members sticking beside them.
I am so glad you have gotten support here through your husbands treatments. This forum has been a Godsent for me...Fo sure!
Oooops, I reported myself again, this iPad ***** to scroll with your fingers!! AAAAAAAHHH !!!!!
My husband really did lose it in the hospital during my transplant. My daughter almost stopped talking to him forever.
He just snapped after taking care of me through interferon treatment, watching me slipping away then when we thought things would ease up, well, the hospital in Taiwan was not like the ones here.
Instead of relaxing while the nurses took care of me, he had to do the shopping, marketing and cooking because family feeds the patients in the hospital there. Then they refused the food he brought me, because, well, it wasn't what they called food.
I could go on and on but that's another book.
But hey, we survived!
I think it would be a great idea for the doctors to include the caregivers (with patients permisiion gotta be PC) in all meetings. I don't feel the patients received enough information so I know the caregivers aren't even considered. I told my doc tht they need to have a phamplet from dx to tx to who to call in case something goes wrong. At times it seems many people are being taken care of piecemeal with these wonderful care givers filling in the gaps and they do the best they can but I bet they could do a lot better if they underwtood what was going on. Maybe there are docs out there who are doing thi, if so I have not heard of them. As a patiednt I have just about had to fight for every bit of information and support for side effects so I can't imagine a caregive with a very sick patient who doesn't have a clue what to do. Too bad we could not start ome kind of "information site" to really help people from diagnosis to end
Just a thought. While I am at it, I am still having these terrible blisers in on mouth and I am wondering does Incivek cause this? I hope so, tomorrow is my last day. I did not have these blisters during old SOC so am praying Incivek is either causing it or adding to it.
Thanks to all of you wonderful people. The last 12 weeks have been rough and without you all I do know if I would have made it. Especially now that I can't talk, I am sure there are lots of people happy that I can't talk :)
You are so funny! You reported yourself? I assume you are using a phone? Just checking, I can imagine with those small key pads it would be easy to hit a wrong button
Thank God I have my laptop or I never would have gotten started. I just now got a cell phone, haven't had one for two years since I lost my job so my son got me one
Have a great day
You are wonderful and have been such a support not only to your husband but to me and many many others. I think that she was just trying to see if we should have some support for the care givers and I agree, it is a tough job that no one would want to do it, especially unpaid. I can be a real riba raver, thank Goodness my hubby is laid back and rolls with the punches (so to speak, no physical violence occurred in the writing of this ms)
One more day of Incivek for me, will I get better? ha ha
My short answer is yes.
This said after my wife started her second treatment a month ago. Luckily for us, the hospital responsible for the treatment has given us this option. But I feel one big responsibility still lies on me: to learn about the treatment and what effects it might give.
"my hubby is laid back and rolls with the punches (so to speak, no physical violence occurred in the writing of this....
Thanks for the chuckle, that comment made me smile (reminds me of the disclaimers you hear on the home video shows). :)
"I think it would be a great idea for the doctors to include the caregivers (with patients permisiion gotta be PC) in all meetings"
You actually put it in a nutshell -- my view is getting involved and understanding is the first move for any caregiver. Maybe part my acceptance of my husband's condition is that I am at every visit with him -- I think that would be an important first step for caregivers, especially those who have the prime or sole responsibility... and that really goes for any chronic condition and difficult treatment.
Perhaps it's time to bow out of this thread now, as it's really not what a caregiver might think rather what treaters think their spouse might need :).