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: 03-25-2003
Sun, 11-20-2005 - 5:57am

It broke my heart reading your post, as these are issues many of us face when we have a chronic illness when; year by year the decline becomes evident.

You should be proud of yourself for being a wonderful husband and father. I can understand the toll this is taking on you, it seems to me that you have "burn out" it is so hard to care for someone on a constant, continuing daily basis.

I would suggest you contact you local pallative care orgnisation ( I know your wife is not dying but...) these organizations have great networks, which support carers and are designed to assist families cope at home when they have a family member who is ill. They do things like assist in transport for appointments, washing, house cleaning, equipement and family/carer relief...which enable the carers to have a "break". They would also have support groups or information on them, It is not so much a support group for RA you need but a group for carers, and carers are all ages and care for someone they love, who can have any matter of disease, or disabiity.

I am certain if you contact the local group they will be able to assist you. If you are unable to find these in your local phone book ring your local hospital and ask to speak to a social worker or nursing sister attached to the medical/pallative care areas. Hospital staff can be a great starting base for collecting information, and finding out what is available. Another resourse would be community groups/organisations such as the Family Support Organisation or womens health centres. You may need to make a few phone calls but the assistance and support will be there.

Many carers often become sick themselves, so it really is important for you to tap into services available.

I can only speak for myself but I am well aware of the added responsibily I have placed on my family over the last few yrs, and often wonder at what cost my health, will be for my kids, as time goes by. My doctor gave me a bit of advice I have never forgotten when I first got sick..he said be careful how much you ask your kids to do because when they grow up they will run a mile.." (my hubby I dont worry about he is not running anywhere with 3 rupture disks often he is worse than me, we just support each other as best we can. And our future, well we cant fortell it and like you we are still financially and emotionally raising our kids 19 and 14. and at times I worry a bit and so does my husband)

please post here as often as you need too. I am more than happy to support you online. Often just saying what you feel is a relief in itself, and then you feel better for it.

I think you may also need to give yourself permission to be just "you" and do something for yourself. When you have networked in some support for your self at home, maybe you can take up a hobby that will give you that break once a week ...even if it is lawn bowls, or an orchid or rose growing club..or whatever, something just for you. Lell

iVillage Member
Registered: 03-25-2003
Sun, 11-20-2005 - 6:56am

PS....It is a bit hard to track down info for support for you since I am in another country...but here goes... I think I got your state right??( I am sure the others here will just have the exact info but since it is still the weekend there I thought I would have a go....)

http://chfs.ky.gov/dph/ach/arthritis.htm
(this was worth reading)
http://chfs.ky.gov/dhss/das/Programs.htm
http://chfs.ky.gov/dhss/das/familycaregiver.htm
http://chfs.ky.gov/dhss/

http://www.arthritis.org/communities/chapters/Chapter.asp?Chapid=65

I would add most services here are free, so I could be wrong, you all seem to pay so much for health care there, So I will say a little prayer for you tonight that the help you require is just one phone call away.
PS. If you have not already done so talk to your wife, let her know you are not coping and you are burnt out and you need to do something to make things easier, because I can tell you stress = heart attack/stroke even at 40, and I could read the fear and desperation in between the lines of your post. I wish there was something more I could do for you, but alas I cant. Maybe the other members here will have the exact numbers you can ring.
My advice really is yes find a support group to attend..but...
1. Find family at home support...via the medical networks
2. Go check out your local church...doesnt matter if you havent been there, the right person may be there just waiting for you to knock on the door.
3. Have time out even for just 2 days.
4. find a hobby that involves other people that is fun and you can particpate in every week for a few hours.
5. Give your wife & kids a kiss and a cuddle and tell them how much you love them, because the rule of life is whatever you give out you recieve back threefold, and love will help keep your cup full. Lell.

iVillage Member
Registered: 03-25-2003
Sun, 11-20-2005 - 4:55pm

First, let me say you sound like a great person.

Do you have a relationship with your wife's dr? Maybe he/she could recommend a support group? Or the local hospital? I could have sworn I saw a support group online for someone like you. I'm going to do some checking and will post back if I find it.

Please feel free to post here anytime! Does your wife belong to any support groups? What meds is she on now?

Wishing you the best,
Michele

iVillage Member
Registered: 03-25-2003
Sun, 11-20-2005 - 5:03pm
iVillage Member
Registered: 11-19-2005
Mon, 11-21-2005 - 5:44am
Thanks for the info I will give it a go as soon as I can. I'm at work now so I have to keep this brief. I am amazed at how quickly I recieved a response(2).
iVillage Member
Registered: 11-19-2005
Mon, 11-21-2005 - 5:50am
Thanks for the info I will give it a go as soon as I can. I'm at work now so I have to keep this brief. I am amazed at how quickly I recieved a response. You are so correct,it does make me feel some better just expressing myself.
iVillage Member
Registered: 11-03-2003
Mon, 11-21-2005 - 2:01pm

Hi Plesurebee

Molly

iVillage Member
Registered: 11-19-2005
Sun, 01-08-2006 - 11:45pm

Well Ladies I really appreciate all the information. I have tried all the links and checked with the local hospitals social services department. Seems like I am in such a small group that there really isn't a support group for me.

I have determined that unless you are caring for someone elderly or under 18 the state of KY doesn't consider you to be a caregiver. The local senior center is not a very good option for me either, as I am far younger than all the people there are.

I know from going to Dr. appointments with my wife over the years that most marriages don't last long when the wife becomes chronically ill at a young age. This really doesn't say much for men does it?

This leaves me with only one option. I need a mentor. A man that has been down this road before me to talk too. Please don't be offended ladies but I need a man that I can talk to about the things that concern a man. (Planing for the future, my own mortality and the effect it would have on my wife, sex or the lack of sex. (No I'm not looking for sex outside of my marriage).

So if any of you ladies know a man that I can openly discuss these kind of things without being judged or laughed at let me know.

21 years of care giving down and lots more to go, I hope. I’m 40 now and really do love my sweetie. I hope no one thinks I’m complaining about caring for her because I’m not. My complaint is the lack of a support group for younger people with chronically ill spouses.

Sincerely Thankful
Tony

Avatar for beviej
iVillage Member
Registered: 03-25-2003
Mon, 01-09-2006 - 7:09am
TONY WHAT A WONDERFUL MESSAGE. ALL I CAN DO IS WISH YOU LUCK AND PRAY YOU FIMD THAT MENTOR.JUST REMEMBER LIFE IS A JOURNEY FOR US ALL. WITH IT`S GOOD AND BAD. I WILL KEEP YOU AND YOUR SWEETIE IN MY PARYERS.
BEV
Avatar for cla3a
iVillage Member
Registered: 03-25-2003
Mon, 01-09-2006 - 10:29am

Hi Tony,


I think that you are wonderful for caring for your wife this long.
Have you tried the local Arthritis Foundation office? Maybe they have a list of other spouses that are in the same situation you are in. That is all I can come up with right now.
I will think about it some more,and if I come up with something else I will post it to you.
Hang in there. I hope you can find some help.
Hugs,

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