Feeling helpless
Tue, 10/14/2014 - 8:24PMHi, my name is Amanda. I feel like I'm in a terrible position--I am the primary caregiver to my father (56 yrs, widowed) who has severe heart failure. He was diagnosed in 1995 and nearly died then. He was managing until 2009 when he needed an ICD/Defib inserted. He had to retire early. In 2011, he lost my mother. His health has declined ever since. Late August, he began falling and developed an infection. He's been in and out of skilled nursing rehabs or hospitals since then. We are low income, and I am a full-time college student who cannot quit school due to scholarships (though my grades these semester are suffering).
I also have to consider that I am guardian and caregiver to my 13 year old sister who is struggling with everything (having lost mother and now seeing my father struggle so much to get by). My father was recently transferred to Vanderbilt via inpatient transfer--I don't know which way is up and which way is down anymore.
I'm not even 21 years old yet, and I'm worried about what to do. I also need to consider my elderly grandmother's health...and I don't even know what to do about the monetary cost of all this.
Any advice? What can I expect when he gets the LVAD? Before the LVAD? Do I need to quit school...? Also, since he's been transferred to Vanderbilt (a 6 hour drive from our house), he's become rather hateful towards me and my sister. If we don't get him ice immediately, we get in trouble. He doesn't even care to see us...unless we have a drink and ice. I alerted the nurse of severe change of attitude this morning, so I hope they can look into helping him through this difficult process.
I've also been having problems with one of his cousins who had the nursing home convinced she was his WIFE. Disgusting woman also harassed my little sister and me--I've been told by many people that I need to legally protect us. This added stress has been even worse because she could have been the best help throughout all of this, but I don't even want to see her face.
I am very sorry for your
Wed, 10/15/2014 - 5:27AMI am very sorry for your complications. As an LVAD caregiver who started the LVAD journey in July 2014; I suggest that you contact the LVAD coordinator at the hospital where your father is. That can be accomplished by phone. I am familiar with the "long distance relationship" you are dealing with. The coordinator can connect you to the Social Worker for your fathers case who can advise you on the many aspects of LVAD life. I can tell you that EVERY situation is very different and that each one has it's own set of issues that go along with it. Joining this group and reading the blogs may offer some insight (and ideas) about what to expect and how to seek the assistance you'll need to get through this. I do know how important it is to take care of yourself (both mentally and physically) before you can help your father and your sister. I wish you the best.
Good morning,
Thu, 11/06/2014 - 5:48AMGood morning,
I am an LVAD RN at St. Thomas West (about 10 minutes from Vanderbilt). Hopefully there will be many caregivers to help you with your transition and questions.
From my perspective, I see varying levels of care needed by caregivers. This will be an adjustment for the entire family. Some people do better than others with the surgery and recovery, and [in my opinion] I see a great difference based on age and pre-existing condition. Just like with any surgery, there may be complications. The younger recipients tend to be better, but beware that is in my medical experience and is not a guarantee nor promise.
Many caregivers do not quit their daily activities, jobs, school. It is hard to determine pre-operatively what his status will be post-op. There typically is a recovery period back to independence that can be several month, but I usually see 3-4 months. Many of our new recipients go to a rehab facility to regain strength and to adjust to their new equipment.
Also, I see a period of fustration and depression pre and post op. You can find any of the 5 stages of grief until the patient has recovered or is actively on the road to recovery. As a nurse, I speak with the patients and mostly hear from them their anger/agitation/generalized grumpiness is usually related to anxiety of being away from him, difficulty sleeping, and the uncertainty of what surgery may bring.
Please seek out Vanderbilt's VAD coordination team if you have concerns, most I have known are open and receptive, and may be able to have you speak with others in similar situations so that you can make the right decision for yourself and family .
Good Luck and best wishes,
Renee