Establish a Support System
Having a good support system is essential for any family dealing with chronic illness, and I wish I could say that we had one. Today is another one of those days when I have to take a day off of work to get my wife into the doctor. She is going into her fourth week of dealing with pneumonia-like symptoms, and in my opinion, the doctor’s treatment has been less than adequate. Last night, I was actually afraid that she had died, just because I realized I hadn’t heard her cough for a while. I am seriously so stressed out right now, I could… well, nothing, because if I break down the whole house breaks down, so I keep going.
I’m lucky to have a position now that allows me to be somewhat flexible with sick days. I would say that 9 out of 10 sick days in the last couple of years have been to care for my wife. I usually just go to work sick.
I know one of the things I need to do to keep my sanity is to develop a strong network of support. However, I have a few roadblocks I have to get past before I can do this.
- I have no extended family. My parents, grandparents, aunts, uncles, and so on have passed away. I am an island.
- Up until recently, my wife did everything she could to hide her illness from friends, and to some extent, her family. The idea that lupus is a serious illness has not really settled in yet.
- All of our current friends also have small children, and it’s difficult for them to help sometimes.
The last few days have been particularly bad for me. I find myself becoming angrier and more resentful as time goes by, and yet there is no relief in sight.
I think what I need to do is start with the positive.
- I DO have a few people that I know I can count on for anything, and I can be thankful for them.
- Often, I don’t have any help, BECAUSE I DON’T ASK FOR IT. I shouldn’t feel ashamed to ask for help.
- Things will not always be like this.
Any ideas?
hi
thanks for posting this.
i have lupus and am newly married and we forget sometimes how hard it is on our spouse.
it’s not just us that has the effects of illness.
i would suggest you find a caregiver’s support group, at least on line if not in your town.
if there is an al anon for spouses of alcoholoics there has to be a support group for caregivers. there is a lot of talk out there abotu burnout and misc feelings that surface for perpetual caregivers, both professionals and those who fell into the job by default.
at the least maybe you can find a chat group online of caregivers. i know for me, there’s no one who udnerstands like another person with lupus. i think for you the only folks who can really udnerstand the burden you carry is another caregiver.
i am sure there are some excellent books available on caregiver issues.
wishing you some breathing room~
Carla
@Carla: I just recently discovered the Well Spouse Association, but there are no support groups in my area, and I don’t really want to go out and start one. I will try and find one online.
Getting away for a little bit does help me recharge my batteries, but about a month ago I went to Las Vegas for the Blog World Expo, and came home feeling pretty good; however, my wife has been very sick from the moment of my return and my batteries are just about dry.
Jeff, Although it is me with the Lupus, I absolutely can understand where you are coming from. My husband has our daughter to help us both out yet the stress I know they are under because of me just about breaks my heart at times. And the awful thing is I am powerless to make it any better for them when my behaviour, or illness is at it’s worst.
I have put my family through hell & back during the last few months because of reactions to my medication & the lupus itself. But I do have a husband & also a daughter who help so I am just so fortunate compared to many. If you feel like a chat lets know.
Jeff, I can relate to what you’re going through for two reasons. My mother was diagnosed with SLE when I was 15 (I am now 33.) My father took good care of her when he was living but he died in 97 and I was left with the job. I have had to have my mother committed for attempting suicide shortly after dad died due to her illness, being left alone and no money, job or healthcare once he passed without life insurance she became seriously depressed. I thought that would be the hardest thing I’d ever have to do. I never thought about how hard it would be once she got out and had to move in with me. I was married at the time with 4 kids (tow natural and two step.) My mother was in a terrible place emotionally and there was no making her happy. It got to the point where if I went out for my after dinner walk, she would curl up in the fetal position in the corner and cry and shake because I left her alone. Needless to say, my marriage ended within a year of her moving in with us. That was in 2001. She has since found a boyfriend and he helps a lot with her but he works. She is in the final stages of her Lupus which is now systemic (having attacked her brain) and needs constant supervision. She cannot get up and down stairs so the doctors and PT’s make housecalls to check her PTINR’s and so on. She is terrified of strangers and really doesn’t remember a lot of people (her short term memory is going) so I have taken on the job of IHSS caregiver for her. This has been going on for a while now. I am now in another relationship and have 3 children of my own and it really takes two incomes to survive here in the S.F. Bay Area so I must work. My mother is now so far along that she needs help bathing and using the restroom (wiping) and sometimes even stool removal. She is bed ridden and wheelchair bound and has abcess’ and infection that needs constant wound care. I am not a nurse and this has really changed my relationship with my mother and not in a good way. She is almost impossible to please. I would go home at night and complain about my day (usually frustrated) as I was almost never able to do exactly what mom wanted or needed and she cried a lot. Well…….I just found out that I also have Lupus and I am about the age my mother was when she was diagnosed. Is this my own future that I’m staring down the barrel at? I now understand how afraid and alone she feels and I am concerned that I may not have someone in my life that loves me enough to do the things I am having to do formy mother forme. What a terrifying thought..that any minute this person could drop you on your kiester and walk away. What could we possibly do alone with Lupus? A support system is crucial to dealing with this nasty and cruel disease. Especially when you have babies as young as I do (my youngest being a year old.) My boyfriend is currently in denial and treating me as though I am overreacting. Will this change? I don’t know. What I do know is the fear is very real and extremely overwhelming. I hope this helps in a way. I feel it helped me a tad bit to get it off my chest. Thank you and peace..
Heidi