not coping with caregiving

iVillage Member
Registered: 01-25-2004
not coping with caregiving
4
Sun, 01-25-2004 - 11:30pm
I am married to a lovely man who has chronic epilepsy. He's on medication and has had surgery also for this. He's in the progress of fine tuning his nerve stimulator and has had limited results with this. My problem is that I feel incredibly burned out...physically and mentally. We've been together over a decade and I'm falling apart. My weight has increased by 100 pounds and my back is constantly taking extra damage from trying to take care of him during seizures. It's very hard to turn him on his side anymore, and my own physical pain increases the stress of dealing with this. I quit a physically demanding job in the last few months so I could care for him during his surgeries-he's had one hospitilization, 2 unrelated surgeries in the last year. Financially, we are barely surviving...I'm having a really difficult time dealing with everything and have little health insurance to take care of my own health issues. Please give me suggestions on how to deal with this life with grace and dignity and find the joy I've lost lately.
iVillage Member
Registered: 05-20-2003
Mon, 01-26-2004 - 10:12am
It sounds like you need to join a support group for caregivers. Check with his doctor, your local hospital, National Epilepsy Association, etc,

Your weight is under your control.

Are you happy in your relationship or do you want out but feel guilty for it?

What about his family?

iVillage Member
Registered: 04-02-2003
Mon, 01-26-2004 - 12:08pm

of course you are not coping - you have so much on your plate right now, and you don't have a "partner" to help you thru the hard times.


like the other poster said - see if there is a support group. talk to his doctor about how YOU are feeling.


also - another thought - it might be worthwhile for you to go back to working full time, and hiring a caretaker to do some of the work around the house. this way you can get out of the house a bit, talk to other people, and your husband will still have the best care. I don't know where you live - but in most places you can get government assistance with people who need full time care.


iVillage Member
Registered: 01-25-2004
Mon, 01-26-2004 - 6:18pm
I don't want out of my relationship. I don't blame my husband in any way for my weight, or for my stress. I do feel an incredible amount of guilt those moments when I feel resentful or so stressed that I would like to be anywhere that I could catch a breath.

As for his family, they are wonderful people...but they have their own busy lives and epilepsy is very unpredictable. We can be having a wonderful day, be laughing and enjoying ourselves...my husband can go to the bathroom, have a grand mal seizure in the bathroom and I am trying to get through a door blocked by his body to make sure he isn't in danger.The adrenalin released during the stress leaves me exhausted after, not to mention the physical work of trying to lift dead weight and turn him on his side. I have alot of problems from my obesity-arthritis that's barely helped by taking ocd's...my body is falling apart. We have a daughter so we can't leave the door open... I know there are people that have more seizures-as in several every day, I just can't imagine being able to deal with that-several a week leaves my husband exhausted. I am trying to lose weight, I want to be able to help him as long as possible, or if this stimulator works well enough when they have it adjusted up, I'd like to be able to enjoy our life together. I'm just burned out right now, and it's hard to see the positive right now.
iVillage Member
Registered: 08-04-2003
Mon, 01-26-2004 - 6:22pm
Taking time for you while you are a caregiver is very important. The time spent on you (doing something you enjoy, giving yourself a break) is very important for recharging your batteries so to speak so you can continue in the role of caregiver. That means making time for you. It doesn't have to be big things (though that's recommended too) but even small things - take a walk, going to dinner with a friend, going to the movies, reading a good book for entertainment, taking a bubble bath. Pampering you so you can be in the right mental frame to continue giving care.


Carrie