Carer Fatigue
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In the real world where fewer and fewer people seem to be living these days the realities of life can be harsh. One of the realities of doing treatment (TX) is that it takes a toll on the carers, the partners and the family of the patient. Some marriages split up under the pressure of living with a suffering, moody and unpredictable individual. The wife/ husband, Mum/Dad can often change physically and mentally before the eyes of other family members.
That is not easy to cope with. The patient can become less competent, less tolerant then pressure mounts.
The home environment can become a pressure cooker from which there is no escape.
Marriages do split up during or after TX. There is suicide in the family, not just among patients who have reached the end of their limit.
Shocks build up over time and can overwhelm even the strongest of individuals. This needs to be faced.
My own nurse has had to face this. Two of her treatment patients have experienced failed marriages while on tx and blamed her for it.
That’s hard to take.
Its because of those marriage failures that she checks in on the family background before she offers tx. If a husband or wife never turn up for a session to support their spouse who is about to undergo treatment the chances are they wont get treatment.
We are not talking NHS guidelines here – we are talking reality, remember. The difference is often vast.
The severity of depression while on TX is seldom reported because of course there is a danger of treatment being stopped. Because of the “sue the bastards” mentality that is becoming prevalent over here every professional is covering their backs as far as possible.
No one is taking any chances.
However even though this is the case, there is still listed risk for suicide in the pharmaceutical literature.
This needs to be faced. A family who experiences this will be left to cope with the leftover guilt of: “Did we do enough”, etc.
Of course all this ends as soon an you complete treatment and you can return to normal life straightaway. After 48 weeks of injecting interferon and ingesting ribavirin and experiencing the never ending bewildering side effects they cause you can be safely assured that within 2 weeks you will return to normal.
That’s according to the Roche literature Pegassist Patient Support. In their booklet “Completing treatment what next”? They state,
“Once you stop taking the medication, it will take a few weeks to clear from the body. If you are still troubled by symptoms more than 2 weeks after treatment speak to your doctor about it”.
Wow, can’t you just smell the bullshit!!
We, the drug overlords are telling what will be. Don’t blame us if it isn’t true for you.
Why isn’t my Mummy or Daddy Husband/ wife getting better? They`ve taken their medicine. Whats wrong with them. The experts say they should be OK.
More pressure, more doubt just because corporations need to protect themselves against blame. Far better for misunderstandings to build up in the home and threaten family existence than for professionals to be bothered about it.
From the start my nurse told me it would take six months post treatment before I felt better.
An honest woman. A realist. An unusual person.
I like her.
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In the real world where fewer and fewer people seem to be living these days the realities of life can be harsh. One of the realities of doing treatment (TX) is that it takes a toll on the carers, the partners and the family of the patient. Some marriages split up under the pressure of living with a suffering, moody and unpredictable individual. The wife/ husband, Mum/Dad can often change physically and mentally before the eyes of other family members.
That is not easy to cope with. The patient can become less competent, less tolerant then pressure mounts.
The home environment can become a pressure cooker from which there is no escape.
Marriages do split up during or after TX. There is suicide in the family, not just among patients who have reached the end of their limit.
Shocks build up over time and can overwhelm even the strongest of individuals. This needs to be faced.
My own nurse has had to face this. Two of her treatment patients have experienced failed marriages while on tx and blamed her for it.
That’s hard to take.
Its because of those marriage failures that she checks in on the family background before she offers tx. If a husband or wife never turn up for a session to support their spouse who is about to undergo treatment the chances are they wont get treatment.
We are not talking NHS guidelines here – we are talking reality, remember. The difference is often vast.
The severity of depression while on TX is seldom reported because of course there is a danger of treatment being stopped. Because of the “sue the bastards” mentality that is becoming prevalent over here every professional is covering their backs as far as possible.
No one is taking any chances.
However even though this is the case, there is still listed risk for suicide in the pharmaceutical literature.
This needs to be faced. A family who experiences this will be left to cope with the leftover guilt of: “Did we do enough”, etc.
Of course all this ends as soon an you complete treatment and you can return to normal life straightaway. After 48 weeks of injecting interferon and ingesting ribavirin and experiencing the never ending bewildering side effects they cause you can be safely assured that within 2 weeks you will return to normal.
That’s according to the Roche literature Pegassist Patient Support. In their booklet “Completing treatment what next”? They state,
“Once you stop taking the medication, it will take a few weeks to clear from the body. If you are still troubled by symptoms more than 2 weeks after treatment speak to your doctor about it”.
Wow, can’t you just smell the bullshit!!
We, the drug overlords are telling what will be. Don’t blame us if it isn’t true for you.
Why isn’t my Mummy or Daddy Husband/ wife getting better? They`ve taken their medicine. Whats wrong with them. The experts say they should be OK.
More pressure, more doubt just because corporations need to protect themselves against blame. Far better for misunderstandings to build up in the home and threaten family existence than for professionals to be bothered about it.
From the start my nurse told me it would take six months post treatment before I felt better.
An honest woman. A realist. An unusual person.
I like her.
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posted by Paul | 12:44 PM
3 Comments:
Hi Paul,
I'm not a rocket scientist but I still figured out based on how ravaged my body was during treatment that it was going to be an undetermined amount of time before I felt well again. This is the sort of stuff that drives me balistic, from a moderated chat, this time with a nurse:
Question:
I JUST COMPLETED 48 WEEKS OF TX BEEN OFF FOR A WEEK NOW. MY JOINTS HAVE BEEN KILLING ME FOR THE PAST 3 DAYS. IS THAT NORMAL?
Nurse answer:
No you should follow up with your doc usually the joints feel better when you stop tx.
Now when I read that sort of thing it just makes me even more want to get some accuracy out there. The truth is that sometimes after some months the joints may start hurting even worse, etc. etc. Not sure how related this is to your post, but when carers or family are concerned that didn't involve my situation. Post treatment recovery did though. The only thing I got from my doctor was that at my 3 month labs I probably wouldn't feel 100%. At that point I was maybe 20% better that's all.
I could have done with some support outside family and all. But like I said before I didn't have a full body cast with flowing blood so my words didn't mean much to people on the outside. Once I saw a woman at church and was too sick to talk to her. Later she told me she talked to her dad about how a friend had just dumped her. I tried to explain that I was doing my best just to be at church, but she didn't get it. I think you do though and others who have been very sick with treatment.
Thanks for the very relevant post Paul. Hi to your beautiful wife.
nadine
Hi Paul,
You raise some important points here about recovery.
My nurse also told me to expect a 6 months recovery period after 48 weeks of treatment. However none of the medics are saying anything now when I try to find out 4 months since a 2 week attempt at treatment, why I feel so dreadful.
I think recovery times are as individual as the side effects of treatment appear to be for different people. Then there is the depression that many, including myself, are not prepared for.
I agree that far more support is needed for those undergoing treatment and for their carers in terms of accurate information, counselling and a whole lot more besides. I am still trying to pick up the pieces with some family and friend relationships, simply because these people were unable to cope with the extent of my need on treatment.
The treatment is great when it works how it is supposed to, but if you present problems, then from my own experience I found you are truely on your own.
Fortunately for us God is great.
Good wishes
Miss Poppy
Ahh,MissPoppy you always make me smile. So down to earth, uncomplicated and straight to the point.
Meeting people like you has been one of the massive plus factors in treatment.
Paul.
Nadine, I really dont know what I would have done without Sarah.
I dont think i could have done tx alone like you have.
Going it alone must definatly make the long journey a lot tougher.
This is why it is so hard to make sweeping judgemants as to what is gong to hapen to a person on tx.
there are so many factors involved.
I think doing tx in prison must be utter, utter hell on earth. Yet some people do.
Paul.
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