Asked to be a "care giver"Wed, 10/03/2018 - 9:51PM
I have a friend who is soon to be receiving an LVAD. I was quite suprised to receive a call from him today ( he is in the hospital )asking if I would consider being his caregiver after the surgery. I have told him I need some time to consider. When he first told me he was a candidate for this a week ago I did some quick research on LVADs( didn't know they existed) and found this website. To begin with I am honored that he would ask me. I also realize that this is a great responsibility and you can't just stop because you get tired or have other things come up. I am supposed to receive a packet in email form from his LVDA Coordinator outlining the needs. I would still like to hear from other caregivers on their experience. I was told I will need 2 weeks in hospital training which is 150 miles away. After the surgery he would have 2-8 weeks of hospital recovery then need a caregiver for 2- 3 months. Is this a realistic timeline? Is it 24/7 care during that timeframe? I am retired but still have my own responsibilities like a home, yard, wife , life and my mother in a nursing home and look after my mother in laws home and yard and would now have his as well. It keeps me busy but these things can be rearranged and juggled for a few months if need be. What I cannot afford is for it to become permanent. He is a good friend with no family or wife he can go to a 3 month period. Is becoming a caregiver a permanent responsibility ( emotionally as well as physically?) It would break my heart to decline and but he has made it clear he would understand. I'm just not sure about taking on more responsibility like this. If I can't do it right for him I would rather not do it at all. My gut tells me a caregivers role is usually family supported and this may be too much for me but I want to help. Your opinions or experiences would be appreciated. Not looking for you to tell me to do it or not just want your real life experience with juggling the requirements.
Care GiverMon, 10/08/2018 - 11:30AM
I have been on LVAD for 4½ years now. I was lucky enough to have a Wife and Father that were able to receive the training to be my "care givers." Every program is different on their approach, but the training consists of the proper steps and techniques for changing dressing at the drive line exit site (the cable in the abdomen requires special maintenance), equipment familiarization, warning notifications and what to do in an emergency... those types of things. My program was able to get my family "trained" in 1 session. We had another "overview" before I got discharged, but it will really depend on how well you pick up the info, and how comfortable you are with the systems and processes.
As for the longevity of your responsibilities, some of that will depend on how your friend responds to the LVAD device itself. I personally at this point, don't really rely on my care givers much at all. I change my own dressing, take full showers by myself, drive, clean, cook... ect. I can even take flights and stay in hotels by myself for business trips. But every patient responds in their own way. Some patients end up having complication after complication. The first 3-4 months are the hardest. While he's healing he will not be able to shower (it will be sink baths for a while) or drive himself. It takes a little to adapt to the "new normal." But once the chest wound heals, they get the pump settings balanced out, and a good routine gets established, things usually get better/easier.
Mindset is absolutely the most important thing. If your friend goes in with the mindset of, "this is the most amazing gift, with this I can rule the world" it is amazing what the positive thoughts can due. I have to admit, it took me a little to get there myself. It's easy to look at it as a major inconvenience, and you do loose a few things like swimming, hot tubs, and such, but when you consider the other option is crawling into a box, life with a LVAD looks pretty good.
It is a major decision, but it can be very rewarding. I hope this helps you with your choice.
In reply to Care Giver by Mitchell W.Sharon K.
LVAD showering and self dressing changesMon, 10/08/2018 - 12:08PM
My boyfriend had his LVAD implanted the end of January. He is very self-sufficient except for the dressing changes and he still sponge bathes. Can you explain the showering process. We have asked at his follow up exams but they aren’t very thorough about how to keep the drive line dry. Also, do you use a mirror for the dressing changes because he can’t see his when he lays down. Thank you for the information you supplied about caregiving. It was spot on!
Sharon Kneis, caregiver for Randy Bay
In reply to LVAD showering and self dressing changes by Sharon K.Mitchell W.
Showering & DressingsMon, 10/08/2018 - 4:59PM
The showering "permission" comes from the LVAD team. I couldn't get in the shower at all for the first 12-14 weeks. Had to wait for the sternum to heal. Once that was all good, we upgraded from the bird bath sink showers to my wife wand showering me using a handheld shower head to localize the direction of the water. There is a water resistant bag that you should be able to get thru your LVAD team that you place all of the equipment in. It is Not water proof, just resistant. So it will still have to be showers only. No baths! But once I got the clearance to begin showering I would hold a clean/dry folded up wash cloth over my site to gather any stray water, sort of like a safety catch. We obviously never directed the water intentionally towards the site. And I would lean and bend to help guide the water away as well. It was a little tricky and took some coordination, but we got it. Biggest thing is to be sure to do a dressing change after a shower even if it doesn't get wet. I still sink shower in between my full showers just to keep things honest. But I only go thru a full shower every couple of days depending on the season, activity, and such. Obviously during the summer it's usually at least every other day, but in the winter it could stretch a few more days as long as I don't get too sweaty. Otherwise you'll go thru supplies like crazy.
Later on, I was introduced to a product called TegaDerm. It is a clear plastic film that you can stick over your site. It is basically the same type of material that the window dressings or IV windows are made of. But it comes in larger sheets that I would use to completely cover the drive line site, bandage/dressing and all. It would create a water barrier that would allow direct contact and keep the area protected during the shower. It still isn't 100% water proof due to the wire coming out of the bottom, but as long as you keep a drip loop in the wire so that the water falls off and doesn't run into the hole, you're good.
As for my dressings, I have had a interesting journey. I am currently using a window dressing by TedaDerm that is in their "IV Advanced" line. I have sensitive skin, and this line seems to be the best for me. I am not sure where your boyfriend is in the dressing journey, but I do use a mirror to do my changes. I actually use my wife's dresser since she has a mirror on that. One thing I learned the hard way, Do NOT Use The Bathroom Mirror!! Try to never change/remove the dressing in the bathroom. You could have the cleanest bathroom possible, but there are still things in there that can get into the wound. You do not want to deal with a drive line infection, ever. They are not fun. Ok, so now that I have stated that... I set up my sterile work space on her dresser and work through the motions of removing the old dressing, cleaning the wound, and applying the new dressing using her dresser's mirror. Again, I use a window dressing as apposed to the gauze and tape, so if he is still using that it might be a little trickier, but still should be doable. The big thing is keep things sterile and take your time. But once he gets used to it, it should go quick.
Hope that helps,
Care Giver inputMon, 10/08/2018 - 1:41PM
I am heartbroken by your story as I read of the need by your friend. Mitchell has responded with some key details of the care. Your friend is frightened and he trusts you but you are being honest in describing your limitations.
As an LVAD Care Giver you really have to clear your agenda to dedicate 100% of your focus on his care. The post op recovery will depend on the overall underlying condition of the patient, some are young while others are a bit older. Some are more chronically ill than others. Relationship is very critical in that the Care Giver must be invested and physically able to withstand night and day care giving, not knowing whether an alarm may necessitate a trip to the hospital at any hour. It is important that the care support team is the one receiving the training along with the patient. In some cases the patient may not have spouse or children, or friends who are unemployed so the one person available must be ALL IN! It would be most honest of you to not accept to start if you cannot continue. You cannot plan on doing yardwork or too many outside activities away from the patient for about four months. The equipment and its behavior need to be learned as the patient adjusts. My patient was instructed not to drive a car or even sit in the front seat until the sternum healed completely. That takes four months. According to the protocol of our Heart and Vascular Center we could not travel without first verifying the availability and proximity of an LVAD hospital. You may be required to prepare meals as the patient should not bend at the waist, he needs to be accompanied to clinic visits which may be weekly at first. Until the sternum heals he will need help with bird bathing, getting dressed from head to toe, maintaining a safe environment, bathroom facilities, food procurement, filling prescriptions, record keeping of vital stats, taking medications on time may need reminders, keeping up with fluid intake and output, dietary observations, in home maintenance and hygiene, repositioning into and out of bed. Is he able to deliver accurate information to the medical team or will he need support in giving details? Some LVAD types and settings are more sensitive to dehydration and will drive both parties crazy with meeting those requirements.There is much to be done in addition to caring for the wound for as long as the LVAD is in place, the frequency of which will taper off. Again, much will rely on the basic condition of the patient prior to becoming ill. It is important to remember that everyone getting an LVAD is frightened of the prospects and needs love and support. I have seen many reports on this portal which seem to make lighter of it than I actually know which can leave a false sense of responsibility behind. It is best to go into the care giving with as much information that you can get and I applaud you for expressing your concerns so honestly.
I too am retired and live hundreds of miles away from my unmarried and childless adult daughter. My first break from caring came seven months later during which time I had to leave my home with no notice to friends who watched over everything while I was gone. But it was a blessing for both my daughter and myself that I was available for her. I truly would not leave the intricacies of that level of care to anyone else having been a Cardiology Nurse for so long.
I wish you prayerful decision making in support of your friend and may God bless your kind heart. I will pray for your friend as well.
caregiverMon, 10/08/2018 - 1:43PM
Pleaase say what city so we will know if we could help
Thank you for the repliesMon, 10/08/2018 - 6:18PM