Hello I am new to support | Caregiver Action Network

New to Support

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RebeccaJo's picture
New to Support

Hi everyone. I'm new to support groups but I think it's definitely time for me to join one. Fair warning, this will probably be a long first post... I apologize.  I'm in a unique situation where I am the primary caregiver for my 82 year old maternal grandparents. I've been trying to find books for caregiver for grandparents but there don't seem to be any. Here's a little background for you... My grandparents have always been in good health and very independent up until this summer. My grandmother was on the cusp of showing some signs of memory loss, but nothing serious. She has had problems with arthritis in her shoulders for the past several years, but that's about it. My grandfather has always been healthy, except for some asthma. This all changed at the end of May this year. My grandfather had cellulitis in his right big toes and unfortunately had to have it removed, he had his right "index" toe removed last year with no complications. This time, he developed a serious infection in the amputation site and had to have a BK amputation. He developed even more serious infections, including MRSA, in the site this time and was sent to a level 1 trauma hospital where he was in isolation at the infectious disease department. During this time, he developed clotting issues, resulting in a diagnosis of CMML, a form of leukemia. Because of that severity of the infections, and the hematology issues resulting from the leukemia, my grandfather had to have an AK amputation. Meanwhile, my grandmother tore both of her rotator cuffs (with no possibility of surgery and enables her from driving and doing many ADL's), is getting more memory loss rapidly (dementia does run in her family, her doctors are aware), and is losing her hearing.  Thankfully, even though I'm only 28, I had the means to quit my job and move in with them to take care of them 24/7. We have spent the majority of time since the end of May in and out of the hospital with blood transfusions, accidents, bed sores, pneumonia, chemotherapy treatments, bloody urine and stool from bladder stones, and most recently a possible diagnosis of bladder cancer. My mom (who is a huge supporter and advocate, don't get me wrong) was unable to take care of them, having had 3 neck surgeries herself. She would be unable to do the physical demands required. She works with elder care lawyers and helping families plan funerals and counsels them follow a loss. She comes to visit when she can but lives 1.5 hours away, she usually comes 1-2 times a week. She has been an indispensable asset to helping us. My uncle, her brother, is unable to help because he had a TBI years ago, leaving him partially disabled. I have 2 sisters, one who lives 2.5 hours away and one who lives 8 hours away. My fiancee did move into my grandparents house with me, but works on the road 5-7 days a week. So it's just me. 24/7. And it has come to the point where I literally don't have anyone to ask for help or a break. My grandparents friends are able to visit with them, but I can't really rely on them for the physical demands or wound care. I have no friends out here and our lives are consumed with doctor's visits almost daily, physical therapists coming over, or home health nurses taking blood samples. I think I am holding up relatively well, considering I've been here since June but I know I need an emotional outlet. I'm becoming increasingly aggravated and short-tempered, losing sleep, and becoming lethargic... all classic signs of burn out. Any recommendations, prayers, insights, or just even useless mutual chatter/venting would be gladly welcomed. Thank you. Rebecca