caring for spouse w RA 4 21yrs im tired

iVillage Member
Registered: 11-19-2005
caring for spouse w RA 4 21yrs im tired
13
Sat, 11-19-2005 - 7:48pm

My wife has had RA for 21 years and it has been a slow but steady downhill ride for both of us. I was 18 at the time (yes we married young but were from Ky so its ok)and have tried to be a good husband and caregiver as well as father, breadwinner,chief cook and bottle washer. We have had some periods of relative calm but mostly surgery after surgery or other illnesses that I'm sure are the results of taking so many meds for so long.

We have managed to raise 2 kids ages 21/15 and I have tried to make thier lives as normal as possible. You might be wondering why a man is posting here? I have tried to find a caregivers support group and have had no luck so I'm appealling to the ladies for help.

After 21 years I'm tired,frustrated,lonely and worried. I,m almost 40 now and stay stressed with managing life paying bills keeping appointments and trying to keep my wife comfortable and sane. I worry about her health and well being if something should happen to me. Her family is and has never been any help and mine is not much better. Our church family has been our best support but we moved this year and haven't been able to attend church here enough to where they even know our names.

Currently my sweety is battling back problems and can barely walk through the house without help. I don't know what I will do if she gets to were she can't do that. I can't afford to hire help due to ever increasing health care cost.

Well thats my story. I will appreciate any advice or tips you can give me and if anybody knows of a caregiver support group I would love to know when and were it meets. I sure could use someone to talk to that knows what my life is like. We live in Central Ky




Edited 11/19/2005 7:59 pm ET by plesurebee

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iVillage Member
Registered: 11-03-2003
Mon, 01-09-2006 - 1:36pm

Hi again, Tony!

Molly

iVillage Member
Registered: 03-25-2003
Tue, 01-10-2006 - 4:34am

Dear Tony,

I can understand your need to speak to another man and probably on a more private basis,as an open forum such as this we tend to limit what we post, but tony your posts are important because they present problems which are not always addressed
your post mirrors many of my own and my husbands past & present thoughts.

Planning for our future is hard and we were both in a bit of a panic for awhile, I cant see into the future it is only a guess, finance is our major concern, but we left it all way too late, we would have to have made plans 20 yrs ago when we were both healthy.And it is in the too late too hard basket at the moment.

You raise sexual intimacy as one issue. I also raised this when I was in a flare for so long, we also faced challenges, because when your hips hurt, your knees ache and wont bend and your hands are just a mess, it makes it all very hard and painful, our mind & desires want what we had, but our bodies just dont do the old one-two-somersault anymore. I had a hard time in this area personally as our sex life just went out the door ( my husband has 3 ruptured disks in his back)...but we found a way. I am 42 and we have been married for 20 yrs. I think we have a normal sex life,( if only a lesser basis than a few yrs ago) We make allowances for joints that are sore and bad backs. I dont actually ask other couples how often they have sex, how long it takes or what they do, but I am perfectly comfortable in posting about sex as an issue with RA and relationships, because it is important. Maybe if I was 102 yrs old I wouldnt care so much, but I love my husband and he loves me.

Tony you state....My complaint is the lack of a support group for younger people with chronically ill spouses...... and how many couples are in the same situation ? heaps and heaps. And just maybe they are wanting another man to talk too also.

Why dont you consider starting your own support group, something only ever happens when someone actually takes charge to make changes. If you consider this an option and you live in an area that has a larger population, it would be so easy to set up. ( If this appeals to you just re post and I will give you some tips on how to get a group going..I have done group leadership training etc etc ...may moons ago.. we got a few groups up and running in areas for community support mainly postnatal support group/grief & breavement for miscarriages and neonatal deaths ( for my work) )

Anyway short of no support available to you at your age in your own community, your options are online support, or create your own support group in your own area. Have a think about it........because I can tell you for a fact, all the community support available now for families living with cancer, or the elderly only came about because carers needed the help and it is cheaper for the medical system to have sick people cared for at home than in hospital.

So it looks like your area needs a support group for young men who are carers of a partner with a disability. Maybe you can start it. Lell.

iVillage Member
Registered: 11-03-2003
Tue, 01-10-2006 - 1:36pm
(((((((((((((((( Lell ))))))))))))))))))), you are such a treasure.

Molly

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