Caring for the Caregiver

Balance? What is balance? I kid, I kid. Sort of. It's not easy. I've got a list of doctors appointments that I need to schedule for myself and I haven't had my hair cut in 9 months (since LVAD surgery), but we're working on it. We've chosen not to change our lives to much, so I still work full time, my husband still runs our business and we have a 5 year old who is full of energy. We try to enjoy each other, instead of stressing out about what does or does not get done. That's my tip for anyone who is starting this journey. Enjoy each other. Who cares if the house is cluttered or the lawn hasn't been mowed. I'd rather spend that time with my family, making memories.

Ok, I've gotten off topic. It IS important to get time for yourself. It can be easy become frustrated or bitter about the situation you've been thrown into. Friends and family want to help, right? So relinquish control, even if it's just for an hour, and do something by yourself. I decided to start my own business and it's been a wonderful excuse to get out of the house.

Honestly, our life wasn't all that balanced before we became LVADers, so we're just shooting for the normalcy we had pre-LVAD. :)

Jamie-that's very interesting. As a friend to an LVAD patient and caregiver, how can I best encourage the caregiver to take care of herself? Can I offer to be a caregiver for a day? It seems a bit personal, and kind of a scary amount of responsibility. What if something goes wrong, etc.

I'd love to hear your thoughts...or anyone else's! Thanks.

friend i think that is an awesome idea!!! Just for a day its really no big deal. You wont have to do dressing change or anything as thats only done a couple times a week. My hubby is pretty much self sufficient so its not much of a "caretaking" role so much as just having someone around. Just have the caregiver or the patient themselves give you a quick overview on what to do if the controller fails (how to change controller), and show you where the list of emergency numbers are in case of an alarm (we have a list right on the fridge). I work almost full time, and Rob is here alone a lot of the time.

It is hard for a caregiver to understand that they dont need to be there 24/7...I deal with this a lot myself, but am getting better with it. But I need time to myself, other than going to work, and I have started to take it, even if it is just a quick walk to rite aid to browse around or something.

I have a full time job, so that give me alot of the break I need, but of course Ill find myself at work doing things for Jason...It may be just looking up information all day, doing research, calling to give his INR numbers, odering supplies, setting up meeting with the EMS team here... etc..etc.. It get hard sometimes, but you learn to adapt.

My 61yr old hubby has his lvad for a year now. I'm the caregiver. He does work full time and loves to. I have a late blessing in our almost 7 year old son. I homeschool. I have a business, of which over the past 3 months has not gotten attention. He developed a small hematoma on the brain which causes migrains. The blood thinners have be stopped. The vad has shifted so his red blood cells are breaking up in the pump. Our clinic visits are now once per week instead of once per month...he develped severe diabetes...We've been upped on the list...When this all started, I was emotionally spent but not discouraged...I am a christian so the Lord is my refuge and He has provided so many people in our paths to help out. When I speak to people I tell them about my husband because the vad is a blessing and I want them to know that. For me, people will take my little guy for a half day and I spend time in bible study and find my strength. I organize stuff, clean, take walks. God says He will never leave me and I know that fully. We've learned to set priorities...real ones. We've learned the difference between need and wants. People have cut our grass, raked our leaves, installed breakers for the outlets that the vad is on. My advise, if its worth anything to all is...reach out to those who want to help you in any small way...it blesses them and you will be blessed. We are humans, we need each other. Blessings

you know today my husband was told he isn't a candidate for LVAD & I am both sad and yet relieved. I read various articles pro and con and on ethics about the LVAD. Honestly I was very scared about being a caregiver because it's ALOT to handle. Couple the fact that we have quite a distance to the medical center, it's just me and him, no real backup and I work full time it was ...how do I put this all together? I guess the question is moot now but I do salute all of you caregivers.

My mom has had her LVAD for almost 2 1/2 years. I have been caring for her, she lives with me and my family the past 6 months have been rough, she has had a small stroke, she had a stent placed in her carotid artery and now her hemoglobin was once again low and her INR high so she recieved 2 units of blood and 3 units of plasma she still is so tired. I don't have anyone else that can help me take care of her I think I am at my witts end I am so tired of worring about her. I work a full time job, does anyone have any ideas? and is this normal??

Don't get me wrong I wouldn't change things. I love my mom.

I don't have a caregiver I do everything on my own is that safe/normal?

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