Unconditional Love

It’s 6 am and I really want to sleep in, but I know I need to get up and get myself ready before he wakes up and he needs my whole attention. As you know my husband has an LVAD, it’s a full time job for me. Most say I’m an enabler but I say it’s my job to care for him. Here’s a walk in my shoes for one day and you tell me, could you do it everyday?

As I was saying I get up early to get myself ready. I head to the bathroom but not before I pick up his urinal so I can empty it while I’m in there. I get my clothes, I shower, get dressed, make my coffee and read emails, scroll social media, sip my coffee and start laundry. I need these few hours before he wakes up, as what I call ME time. These few hours or less are the only time I get to do things for me. You will see why as this story continues.

As I am almost finished with my coffee I hear him in the bedroom, he’s awake. My job begins. Although I’ve already dumped his urinal from last night, he’s using another one. He uses a urinal because he is hooked to the power source that runs his LVAD, it’s easier to use the urinal than to unhook, hook up batteries and walked to the bathroom holding the batteries and pray you make it there on time. It’s just easier. He yells from the bedroom for me and the day starts.

He’s awake, his back is feeling itchy as it does most mornings. I go into the room, he tells me he’s peed, his back needs to be scratched, he hooks up the batteries, he needs his clothes and his belt to hold the batteries. He walks to the living room and sits in the chair, turns on the news as I get all his belongings so he can start his day.

He needs his pop to take his pills before getting dressed, which I’ve already put them in the pill holder for the week, so off I go to the kitchen to get the pop after I dump the second urinal and wash it out. I give him is pop and go make the bed and hang the cord up on the hook from the power source. He will sit and watch the news for a few, if it’s a day he needs to bathe, I will prepare the bathroom for his wash down because he can’t shower. If not, he will need me to hold his batteries while he puts on his pants and shirt, it’s hard to pull up everything while holding two batteries and a controller so that’s my job. That’s when I read the numbers on the controller to make sure it’s functioning properly. Getting dressed wears him out, so he has to sit a few more just to rest up for breakfast.

The bathing ritual we have to do is because his LVAD controller cord, also known as the driveline, it’s attached to the heart pump which comes out of his stomach and is an open wound. This wound is covered by a dressing that I change once a week. It’s my job to make sure it stays clean and well taken care of. The water from the shower could cause an infection so we have learned a bathing ritual that has worked for three years and he has had no infections. On the days he needs a bath it takes up to about an hour or so of my time. It’s too hard for him to do this by himself because he becomes so lightheaded and drained that it’s not worth him falling so once again this is also my job.

For the bath we purchased three large condiment bottles from GFS and use those to rinse the soap. They are easier to direct the water and not get his wound wet. I fill those up with warm water, get the wash cloth wet and soaped up, and give him his sponge bath as he calls it. He really hates that I have to do this but he understands the consequences if he gets his driveline wet. I then have to reassure him that it doesn’t bother me, he’s my husband and I will do anything for him. I then dry him off and he has to lean over the sink so I can wash his hair. After the bath he shaves his face and I pick up all the dirty clothes, rinse the bottles out and put them away and clean up the bathroom.

The bathing really wears him out and he needs to sit back down for a few and rest. Most everything makes him tired and wears him out, resting is a big part of his day. I then have to make breakfast for him and I because he wouldn’t eat unless I forced the issue. I forgot to mention he has a lot stomach issues from a surgery prior to the LVAD that it causes him to throw up almost everyday. If he didn’t have to eat he wouldn’t. Breakfast is usually something light and easy. After eating he has to sit for while just incase he does have to throw up. Most days he does and that will consist of me emptying a puke bucket and washing it out two or three times. In almost three years, I bet i have cleaned more puke and rinsed out a puke bucket more than just about anyone would ever have to do in a lifetime. I should of kept a record.

After he eats, I put clothes in the dryer, fold and put them away. He can’t use the dryer or the vacuum for that matter because of the static it creates. If he get a simple shock from the static it could cause the pump to malfunction or stop for a period of time. So once again my job. When he’s done with the news, if we don’t have anything planned, he will usually go into the garage in the summer and sit n his recliner and watch yet some more news. In the winter he stays in the house, too cold for his pump.

In the garage he tries to do small projects. He can stand for a little while, it’s getting better but he still needs to sit and take many breaks. i try to leave him out there to do what he wants, but there is an occasional yell for “HONEY” which leads to him wanting me to get or help him with something. I’m at his beckon call. It could be as simple as another pop, a tool, lifting something or getting on the ladder to get him something from the rafters. He’s not steady enough for the ladder and it’s became my job to do that.

He will sit in the garage for most of the day, if we have to go anywhere or do anything, I’m the one driving. He can drive but usually only drives to the corner store. He doesn’t feel quite safe to drive long distances, so you guessed it…My job. Since the hike in gas we have been staying home, but before he would be so bored and would just want to ride around. We really didn’t go anywhere just rode in the car for endless hours until he was content and ready to go back home. This made for a long day for me, but I am always willing to do what it takes to make him happy.

Lunchtime, we decide what to eat and have a small lunch. Dinner is already planned as soon as he wakes up. That’s on the counter for later. Usually by now he’s stomach is in motion to throw up. He tries everyday not to throw up but on most days it’s inevitable. Back in the house to get a towel and the second bucket so I can empty the first one. Once he throws up he usually feels a little better, but then he is feeling hungry an hour later and he needs food. I make him a snack and then do the dishes from breakfast, lunch and the snack so we have a clean kitchen to cook dinner.

After that if I need to cut the grass or do yard work I will squeeze that in before he needs me again. I love cutting the grass. I put in my airpods and I’m in my element there. This usually takes an hour or so for both front and back. I would love to rest after I’m done but he already needs me to do more things for him by this point. Then the dinner process begins. He loves to “COOK” but hates to prepare the food, so Prep Chef Krissie cuts, chops and gets all the supplies he needs to cook. I try to clean as I go at dinner so I can relax at night.

Every Thursday is INR day. This is a test we do to see how thick or thin his blood is. It’s a test we do at home in the morning. I have the machine ready. I have to insert the test strip, prick his finger, take the blood sample, apply it to the stick in the machine when ready and send the results over the internet to the clinic. Then his anticoagulant nurse will call to either adjust his meds or leave them the same depending on the results. Before we got the machine, we had to drive to the clinic every week. This is so much better.

Every Sunday is driveline day. We usually to the bathing routine this day too. Driveline change is so important. We do this in the bedroom so he can lay on the bed and be comfortable. I have to bring the table for the sterile kit to sit on. Open it put on the first set of sterile gloves, remove the bandage carefully from his site. I use the first sterile sponge with medication to clean around it, then use the second sponge to reclean it. There is sterile water pads to use to wipe the site, five pieces for sterile gauze to dry the site, then I apply the sterile glue (as I call it) to make sure the tegaderm stays in place. Now I have to take off the gloves and put on a new set of sterile gloves. I open the third sterile water pack, open the silver pad that goes around the driveline opening, apply the sterile water carefully to the four corners and place the pad on he opening. I open the see through tegaderm bandage and place it on top of the pad to keep it in place and free from anything touching it. There’s a bottom piece to the tegaderm that is separate and is place at the end of the first tegaderm and made sure it’s secured. In the process there is a driveline anchor that holds the cord incase the controller is dropped, this anchor prevents the cord from being pulled out of his stomach. I take the old anchor off and clean and place the new one. This whole process can take up to 45 mins to complete. Yet another job added to my list.

Once a month, usually the second week or so we have to go to the clinic and get all of his labs drawn to make sure all his counts are on point. And every three months we see the cardiologist so she can assure us that the pump is working and he is doing well. This also includes any specialists we need to see for all his other issues. Gastro doctors, iron infusions, pacemaker check just to name a few. It’s a lot for anyone but we have adapted to this new life style for the most part.

I try to do the best I can, at night I’m so exhausted from the day but it’s hard to sleep. He has a hard time sleeping so that keeps me up, when he does fall asleep I’m afraid I won’t hear his alarm if it goes off so I’m up and down all night checking to make sure he’s still breathing. I probably won’t sleep good for a long time. But that’s the sacrifice I make for my husband and I’m good with that.

On most days he is good, but he does have quite a few bad days. On the bad days I have to wife, counselor, nurse, doctor and just hold him all together kind of person. I never said this life we have is easy, but I always say it beats the alternative and that’s not having him here to keep me busy all day. This life is better with him like this, than not all. So when people think I’m an enabler, it doesn’t matter to me what you think. I think I’m the best wife ever. You walk in my shoes for the day then tell me how you feel.