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        Supporter's Corner >> Supporter's Corner >> Suggestions for the supporters
        
(Message started by: Lotus on Aug 2nd, 2007, 9:47am)
Title: Suggestions for the supporters
Post by Lotus on Aug 2nd, 2007, 9:47am
These points were written for supporters of all chronic, severe illnesses. I found many of the suggestions helpful to a supporter of a CHer too so I am sharing them here.


Chronic/Severe Illness in the Family - Anger. Frustration. Resentment. Helplessness. If someone in your family has chronic/severe illness, you may be feeling all of these things. What can you do to help yourself, and by doing so your loved one as well?

1- You cannot fix your spouse. There is nothing you can do to make him or her well, so don't feel compelled to try. What you can do is be supportive, loving and handling the everyday details and practical issues of life that he or she cannot cope with.

2- All members of the family have a responsibility to cope with the illness. Escape is not a helpful way of dealing with crisis. You all need each other.

3- The ill spouse must recognize and accept the illness, be willing to receive treatment, and if possible, learn to manage the illness. If the ill spouse is not willing to do these things, it may become impossible for the family to continue to support him or her. The family is not required to throw away their own lives for someone who refuses to cooperate. There are limits and they must be enforced without feelings of guilt.

4- Educate yourself concerning every aspect of the illness. Education brings compassion. Ignorance just encourages anger and fear.

5- Grieve your loss. It is a great loss. You need to allow yourself the time and energy to experience the entire process of grieving.

6- Get help for yourself to cope with this incredible challenge, either from your own counselor or a support group. You can't do it alone. Don't refuse to recognize your own need for help, just because the ill spouse is getting most of the attention.

7- Help your children understand the illness as much as their age allows. NO FAMILY SECRETS. Don't deny them the opportunity to learn about the illness, the unfair stigma attached to it, and developing their own skills in coping. It can be an incredible learning opportunity for them. If they need proof and help to understand it and their own feelings, get it for them.

8- Try to create a safe environment for the spouse to express himself/herself without feeling threatened, constrained or condemned. He or she desperately needs a nurturing, safe place to express the incredible frustration he or she is feeling about coping with the illness.

9- You and your children need to share your feelings, honestly and openly. It's okay to feel angry and cheated. At times you may feel embarrassed by the ill spouse's behavior, avoid trying to protect your spouse by not discussing the problem with family or friends. Don't require your children to conspire with you in a code of "family secrecy." Family secrets will only isolate you from others. Remember that small children, by their very nature, assume that they are responsible for anything in their environment that goes wrong.

10- Never put yourself or your children in physical danger. If you sense your spouse is becoming angry or abusive, you should leave and call for professional help. You should never tolerate abuse of you or your children. Trust your instincts and intuitions on this one. Say, "no way" and mean it.

11- Become your spouse's advocate with the medical professionals, assertively involved in his treatment and medications. If the medical professional or specialists won't cooperate with you, demand a different one! Treatment should involve the entire family, so find a professional who will work with the whole family. You know more about your spouse's illness than anyone else. Trust your instincts.

12- Coldly assess what your spouse can and cannot handle, the compensate assertively. Some people with severe illness cannot handle money, household chores, time commitments and too much stress. You must not do things for your spouse that he or she can do for themselves. Don't rob him or her of their dignity.

13- Maintain your own identity; resist becoming consumed with your spouse's illness. Life goes on. You have an obligation to yourself and your children to take care of yourself and meet your own needs. You all must continue to develop your own interests and talents. You are a valuable human being, so don't play the martyr role and sacrifice yourself. That's just self pity. "Get a life."

14- Always hope for healing. The medications do work and new ones are being developed. You may get your spouse back whole some day. If nothing else, the experience will broaden and deepen you in ways you never imagined. Or, you can choose to let it destroy you, your family and your marriage. It is your choice.

15- Keep in mind that bad things happen to good people and you're no exception. You have not been singled out for a special persecution. Trying to make good choices in life won't protect you from misfortune. You haven't been "dumb" to "get yourself in this situation." It is not your fault. Life is not easy, we have to take what we get and make the best of it.
Title: Re: Suggestions for the supporters
Post by nani on Aug 2nd, 2007, 9:55am

on 08/02/07 at 09:47:47, Lotus wrote:
These points are written for supporters of all chronic, severe illnesses. I found many of the suggestions helpful to a supporter of a CHer too so I am sharing them here.


Chronic/Severe Illness in the Family - Anger. Frustration. Resentment. Helplessness. If someone in your family has mental illness, you may be feeling all of these things. What can you do to help yourself, and by doing so your loved one as well?

1- You cannot fix your spouse. There is nothing you can do to make him or her well, so don't feel compelled to try. What you can do is be supportive, loving and handling the everyday details and practical issues of life that he or she cannot cope with.

2- All members of the family have a responsibility to cope with the illness. Escape is not a helpful way of dealing with crisis. You all need each other.

3- The ill spouse must recognize and accept the illness, be willing to receive treatment, and if possible, learn to manage the illness. If the ill spouse is not willing to do these things, it may become impossible for the family to continue to support him or her. The family is not required to throw away their own lives for someone who refuses to cooperate. There are limits and they must be enforced without feelings of guilt.

4- Educate yourself concerning every aspect of the illness. Education brings compassion. Ignorance just encourages anger and fear.

5- Grieve your loss. It is a great loss. You need to allow yourself the time and energy to experience the entire process of grieving.

6- Get help for yourself to cope with this incredible challenge, either from your own counselor or a support group. You can't do it alone. Don't refuse to recognize your own need for help, just because the ill spouse is getting most of the attention.

7- Help your children understand the illness as much as their age allows. NO FAMILY SECRETS. Don't deny them the opportunity to learn about the illness, the unfair stigma attached to it, and developing their own skills in coping. It can be an incredible learning opportunity for them. If they need proof and help to understand it and their own feelings, get it for them.

8- Try to create a safe environment for the spouse to express himself/herself without feeling threatened, constrained or condemned. He or she desperately needs a nurturing, safe place to express the incredible frustration he or she is feeling about coping with mental illness.

9- You and your children need to share your feelings, honestly and openly. It's okay to feel angry and cheated. At times you may feel embarrassed by the ill spouse's behavior, avoid trying to protect your spouse by not discussing the problem with family or friends. Don't require your children to conspire with you in a code of "family secrecy." Family secrets will only isolate you from others. Remember that small children, by their very nature, assume that they are responsible for anything in their environment that goes wrong.

10- Never put yourself or your children in physical danger. If you sense your spouse is becoming angry or abusive, you should leave and call for professional help. You should never tolerate abuse of you or your children. Trust your instincts and intuitions on this one. Say, "no way" and mean it.

11- Become your spouse's advocate with the medical professionals, assertively involved in his treatment and medications. If the medical professional or specialists won't cooperate with you, demand a different one! Treatment should involve the entire family, so find a professional who will work with the whole family. You know more about your spouse's illness than anyone else. Trust your instincts.

12- Coldly assess what your spouse can and cannot handle, the compensate assertively. Some people with severe illness cannot handle money, some household chores, time commitments and too much stress. You must not do things for your spouse that he or she can do for themselves. Don't rob him or her of their dignity.

13- Maintain your own identity; resist becoming consumed with your spouse's illness. Life goes on. You have an obligation to yourself and your children to take care of yourself and meet your own needs. You all must continue to develop your own interests and talents. You are a valuable human being, so don't play the martyr role and sacrifice yourself. That's just self pity. "Get a life."

14- Always hope for healing. The medications do work and new ones are being developed. You may get your spouse back whole some day. If nothing else, the experience will broaden and deepen you in ways you never imagined. Or, you can choose to let it destroy you, your family and your marriage. It is your choice.

15- Keep in mind that bad things happen to good people and you're no exception. You have not been singled out for a special persecution. Trying to make good choices in life won't protect you from misfortune. You haven't been "dumb" to "get yourself in this situation." It is not your fault. Life is not easy, we have to take what we get and make the best of it.


Sorry...but CH and mental illness are different. Perhaps a bit of editing would make this more applicable.  ::)
Title: Re: Suggestions for the supporters
Post by Lotus on Aug 2nd, 2007, 10:04am
Thanks Nani

Edited as suggested.
Title: Re: Suggestions for the supporters
Post by Jackie on Aug 2nd, 2007, 12:59pm
IMHO...supporting a clusterhead is extremely individual...as individual and unique as the condition is to each sufferer.

(Does that make sense...it does to me.... :P)

Jackie
Title: Re: Suggestions for the supporters
Post by Lotus on Aug 2nd, 2007, 6:44pm

Hi Jackie,

Of course its individual, because each CHer is different and each supporter is different. We are all different in how we cope with the condition and its associated problems.

However, after speaking to several other supporters here via PMs or emails, especially Margi, I could see that there are some common issues.

The suggestions above are merely that, suggestions. Its up to each person reading it to take away what he or she might find struck a chord with their particular situation and hence useful.

Title: Re: Suggestions for the supporters
Post by Jackie on Aug 2nd, 2007, 7:01pm

on 08/02/07 at 18:44:46, Lotus wrote:
Hi Jackie,

Of course its individual, because each CHer is different and each supporter is different.


Ummmmm....I could have sworn that is what I said.

I fully understand the purpose of your post, Lotus

Jackie

Edited because I'm trying to be nice....
Title: Re: Suggestions for the supporters
Post by Lotus on Aug 2nd, 2007, 7:42pm

Thanks Jackie for trying to be nice, much appreciated  :)
Title: Re: Suggestions for the supporters
Post by Maffumatt on Aug 2nd, 2007, 7:46pm
Looks like sound advice to me. Thanks Annette.
Title: Re: Suggestions for the supporters
Post by nani on Aug 2nd, 2007, 10:22pm
Given that we are all different, and that each person/family may feel differently, can I ask some questions, Annette? Just for my knowledge...how these apply to you and Daniel:

The family is not required to throw away their own lives for someone who refuses to cooperate. There are limits and they must be enforced without feelings of guilt.


Do you find yourselves "throwing away your lives" when Daniel is in cycle? I know when I was chronic, Bob and the kids felt hesitant to prod me into joining them at things they knew would trigger me, ie: amusement park trips, etc...but I'm not sure they felt they were stopping their lives. What kind of limits do you mean?

Grieve your loss. It is a great loss. You need to allow yourself the time and energy to experience the entire process of grieving.


Loss to whom? Daniel, for not having a "normal" brain? You, for not having a "normal" spouse?

Never put yourself or your children in physical danger. If you sense your spouse is becoming angry or abusive, you should leave and call for professional help. You should never tolerate abuse of you or your children. Trust your instincts and intuitions on this one. Say, "no way" and mean it.


While some of us may "act" violent, the violence is often aimed at our own heads. I've never really heard of any of us hurting a partner or child during an attack.

Some people with severe illness cannot handle money, household chores, time commitments and too much stress.

Sorry, but I don't get this at all. I can't balance a checkbook during an attack... but that's altogether different.

You have not been singled out for a special persecution. Trying to make good choices in life won't protect you from misfortune. You haven't been "dumb" to "get yourself in this situation."

Do you feel that way? God, I hope my hubby doesn't.
Just wondering...
Title: Re: Suggestions for the supporters
Post by Lotus on Aug 3rd, 2007, 12:53am

Nani

I know you dont like me and I know you think I am a fraud, that I am not a doctor and that my husband doesnt have CH, but that is your own view and I would prefer you keep your need to attack me off the Board, I am happy to answer whatever questions you want to ask privately.

Just so you know, since I have posted this thread, a few people have PMed me and told me they found the information correct and useful.

If you dont think these points applied to you, then simply dont read them. I assure you that many supporters would find some points ring true to home.

Its been stressed here many times that only a CHer can fully understand how a CHer feel, on the same token, I would dare say only a sufferer knows in his/her heart what its like sometimes.

I suggest you PM Margi and ask her, she will be able to tell you, as she has told me, the many horror stories she had heard working directly with hundreds of supporters through the years.

I am sadden to see you feel the need to attack a supporter and downplaying how difficult or painful it is for supporters at times.



Title: Re: Suggestions for the supporters
Post by E-Double on Aug 3rd, 2007, 4:52am
Some seems to be quite sound as Matt said.
I think some pertains to us and others if you really edit might work.

On a different note.....

If you wouldn't haven't commented on the apparent dislike 4u then no one would have known by any specific  post on this thread.
Title: Re: Suggestions for the supporters
Post by Jackie on Aug 3rd, 2007, 5:39am
Ditto,  E....

I saw nothing confrontational either....merely opinions.

Love to you and your precious girls..... :-*

Jackie
Title: Re: Suggestions for the supporters
Post by Lotus on Aug 3rd, 2007, 5:44am

:'( :'( :'(
Title: Re: Suggestions for the supporters
Post by 1234 on Aug 3rd, 2007, 6:05am
The post appears to have been written for someone suffering from a severe mental illness and edited-interesting that CH (nor any other illness) is mentioned in the post.  My wife and friends have read this and laughed-they do not consider me to be a danger to them or myself when having an attack.  I can function and perform the tasks necessary for daily living, even plan for the future.  I would like to know the source of the post-it is obvious to me that it was written by someone else and is probably in a book or a guide to families of someone suffering from schizophrenia or other incurable mental illness, but then what do I know, I live in an igloo. :P

P.S. (pun not intended):  "Watch out where the huskies go, don't you eat that [b]yellow snow!"-[/b]ancient Yupik Eskimo wisdom, as interpreted by the late, great Frank Zappa.
Title: Re: Suggestions for the supporters
Post by vietvet2tours on Aug 3rd, 2007, 12:23pm

on 08/03/07 at 06:05:36, 1234 wrote:
The post appears to have been written for someone suffering from a severe mental illness and edited-interesting that CH (nor any other illness) is mentioned in the post.  My wife and friends have read this and laughed-they do not consider me to be a danger to them or myself when having an attack.  I can function and perform the tasks necessary for daily living, even plan for the future.  I would like to know the source of the post-it is obvious to me that it was written by someone else and is probably in a book or a guide to families of someone suffering from schizophrenia or other incurable mental illness, but then what do I know, I live in an igloo. :P

P.S. (pun not intended):  "Watch out where the huskies go, don't you eat that [b]yellow snow!"-[/b]ancient Yupik Eskimo wisdom, as interpreted by the late, great Frank Zappa.
Just another Troll type.
Title: Re: Suggestions for the supporters
Post by Jonny on Aug 7th, 2007, 9:14pm

on 08/03/07 at 12:23:17, vietvet2tours wrote:
Just another Troll type.


Yeah, you got that right, Potter!!!

Nani, are you still busting Annettes balls?

Whats the matter, is BobW to busy or has he lost his balls and is paying you?

1234, you will not last here and I will make sure of that!
Title: Re: Suggestions for the supporters
Post by cash5542 on Aug 7th, 2007, 11:05pm
I'm a bit afraid to jump into this but I have to comment. CH is relitively new to me, however I have been my daughters support for asthma for several years. When CH  came along, I just saw it as another challenge. Some of the comments in Annettes post hit the nail on the head and some don't. If the shoe fits wear it. I do grieve the loss my daughter and my family has experienced from CH as well as asthma. She barely got out of college, had no social life and was in pain more than she wasn't. This losss of care free days is real. It has made carreer goals very scary. On the other hand she has gained something her peers don't have, the challenge to attack adversity and come out shining as well as the friendship from all of you.   I have gone for counseling myself and it helps me to be strong.  The best words of advice I got was be there as much as you can when and however she needs you and back off when everything is calm. Just some thoughts. It's worked well for us.


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