what if you have no support

tigerstunes,

If I understood your message correctly, you and your spouse are mobile with  wheelchairs and have to use public transportation.  I am so sorry for your husband's illness and also for the problems you are having with him. 

I'm wondering if finding a support group might be helpful for you.  It would give you someone to talk to and share your fears with since your husband appears not able to do that at this time.  You might try speaking with your minister or pastor, if you belong to a church.  Sometimes the hospitals have social workers or counselors that you might be able to talk with to alleviate some of your fears and concerns.

When people are ill, such as your husband is, they become unlike themselves because they are in fear of their lives.  He may also need someone to talk with so he can come to terms with his illness.  If he will listen to you, you might suggest that to him.

I hope you are able to find some peace in your life.  Good luck.

Joan L

On 10/14/2009 Joan l wrote:

tigerstunes,

If I understood your message correctly, you and your spouse are mobile with  wheelchairs and have to use public transportation.  I am so sorry for your husband's illness and also for the problems you are having with him. 

I'm wondering if finding a support group might be helpful for you.  It would give you someone to talk to and share your fears with since your husband appears not able to do that at this time.  You might try speaking with your minister or pastor, if you belong to a church.  Sometimes the hospitals have social workers or counselors that you might be able to talk with to alleviate some of your fears and concerns.

When people are ill, such as your husband is, they become unlike themselves because they are in fear of their lives.  He may also need someone to talk with so he can come to terms with his illness.  If he will listen to you, you might suggest that to him.

I hope you are able to find some peace in your life.  Good luck.

Joan L

 

thank you, for your note.

thee

One of the hardest things we deals with as the other half is our fear of what happens after. We have been battling cancer for 9 years now and I am afraid every moment of every day of what my life will be like after. We are getting much closer to the after now but as we do I find he is more at peace and I am scared to death. I have family friends and alot of support but I still feel very alone most of the time, this is a natural part of grief, I could kick myself for all the times I gave that speach as a nurse to a loved one now. I do know from my expirience that life will be very sad for as long as we need it to be but you will and can go on. There will be a time that it becomes important for him to know that. You need to know that it is ok to be scared and sad and cry. But you also need as you said to find the good times and spend those with him, every day every moment is a gift savor it enjoy as many as you can they will get you through this later. He needs to live as much as he can right now while he can, he's not doing this without you to be mean he's coping, he's trying not to have regrets, there will come a time for his questions when he's ready. If you have questions privately ask the nurse for information, read books about his disease, you can learn what you need without forcing him to before he's ready. I have found that as I needed information my DH didnt care to hear it, so I searched the net, sucked up alot from our cancer center and the library.

I have found something to help you in many ways it's a website that will assist you one on one www.inermanangels.org if you click on the link it should take you there. I pray you get what you need here please try.

P.S. It's ok to feel you need to

Milly

One area that might want to check on is your insurance company.  We have Anthem/Blue Cross and they have been wonderful.  I have a case worker that I have been working with for the past 18 months; right after my husbands diagnois.  We are now setup with a free program that is called Complex Care and have a nurse available 24/7 to answer any questions I may have.  I know that not everyone has this kind of coverage, but that is one area you could check on; also talk to your husbands DR's/nurses and they maybe able to offer suggestions for support.  There are alot of caring people out there who are willing to listen to not only issues with your husband, but also with what you as a caregiver have to deal with.  Best of luck.   Barb

I read your post, please seek group support.  Group support can be a blessing when times are troublesome.

Whats going on with you is not your fault, please take everthing one day at a time. Who knows what tomorrow holds for anyone, enjoy today! and your husband. Find the smallest of things that you guys can start enjoying together. If you have to speak to the doctor outside of your husband, do that. Take things slow, the ultimate goal is a harmonius environment, it's easier to come together without tension.

Support groups are fabulous, the people there have experienced what your going through if not more. They can help you work through what your feeling and positive ways to communicate it.  In addition, you may find out different services you and your husband are entitled to. Never forget you are not alone, and their are plenty of people in this world full of love; willing to help.

I have Sarcodosis of the lungs, talking to people who had the desease and hearing their stories, so similair if not exactly like mine. Gave me comfort, support, and ways to adjust faster. An illness can strip you of your happiness if you allow it to. The support you need, is a support group away. Check with your doctors or the nearest hospital for a suggested support group. If you make a decision to try a support group and your husband doesn't don't worry, it's ok.

Praying for You,