So today, I’m asking the question: Are you a caregiver? Do you have a caregiver?
For me, the answer is YES to both!
AS A CAREGIVER
I’ve been taking care of my mom full time for about 4 years although I’ve been taking care of her since I was 15 and my dad passed away. I also have a caregiver who is my husband. In my opinion, he does a much better job at it than I do!
As most of you know my mother has Alzheimer’s Disease and it became obvious in 2013 that it was no longer safe for her to live at home. I’d love to say it was a smooth transition, but as any caregiver knows there is rarely anything that goes smoothly. If you haven’t read about our stressful beginning you can read all about it right here!
Nobody can be the perfect caregiver all of the time. Life gets in the way. Your juggling jobs, kids, parents, pets, bills, household duties, shopping, and I could go on and on. Sometimes you feel like throwing your hands in the air and giving up. Or even worse you feel guilty ALL. OF. THE. TIME. There are feelings that you feel as a caregiver that are dark and ugly as well and these are all perfectly normal! Things like:
- Feeling as if your life is passing you by
These are perfectly normal feelings. Caregiving isn’t easy, not by a long shot. You basically put your life on hold to take care of someone else. The sadness comes in when you realize that you are the only one on hold and life is going on just fine without you. Sometimes it seems if you aren’t even missed. That can be depressing and overwhelming.
Finding hobbies, interests, getting away, spending time with other family members or friends is essential to your sanity. We often forget about ourselves in the process. We have to MAKE the time for self-care or we won’t be good for anyone. That is sometimes easier said than done, but you have the right to take some time for yourself any way you can get it. Me? I stay up late at night to have some much needed alone time. I also have family members help out from time to time and sometimes it still doesn’t feel like enough.
AS SOMEONE WITH A CAREGIVER
Even though I care for someone, I also have a caregiver of my own. In 2009, I was in a car accident and in 2011 I was diagnosed with a disease called Felty’s Syndrome which is a rare form of Rheumatoid Arthritis. As someone with a caregiver I struggle with a lot of the same feelings that I have as a caregiver.
Does any of this sound familiar? In this case, I stress about not only my own health problems but also all that my husband takes on in the role of caregiver to me. I am sad that we cannot just enjoy our relationship as a married couple, especially when sometimes if feels more like a nurse/patient relationship. I’m angry that my life has changed so drastically and things that I once took for granted are things I am no longer able to do.
I feel guilt that my husband doesn’t have a wife, he has a patient with many needs. I feel guilty that at this time in our lives when we are supposed to be traveling around the country enjoying our empty nest we aren’t able. I feel overwhelmed thinking about the time and effort my husband puts into me all while being an employee, father, grandfather, brother, and friend. I feel trapped by my disabilities at times and I grieve for the life that we used to have.
Whether you are the caregiver or the one receiving the care it’s not an easy place to be. One niche of caregiving that I would like to discuss is rare disease caregivers. An example of a rare disease is mesothelioma. It affects about 3,000 Americans a year. Sadly, these caregiver’s journeys are typically short lived because these rare disease prognoses are so aggressive and the individuals receiving care’s days are numbered.
This places a lot of pressure mentally, physically, and emotionally on caregivers. Rare disease caregiver’s roles are very intense but that can make their work even more meaningful. The key’s to success in caregiving whether you are the recipient or the giver are–having a good support system, finding new and innovative ways to help, and remembering the many blessing you do have really does go a long way to finding the happiness needed to succeed. As both, I don’t have all of the answers but being able to see it from both sides I think makes me not only a better caregiver but also a better patient.
The infographic above was created by my friends at The Mesothelioma Cancer Alliance and I want to encourage you to remember ALL of the caregivers in your life! They also created the caregiver tip graphic using one of my tips for National Caregiver Month! Thanks, MCA!