I was caregiver to my elderly father post-stroke before his passing in 2012. I was 25 and he was 88 years old. There are so many young caregivers out there, and I can relate to your struggle.
I made a narrative film called Gold Star inspired by my eperiences and struggles as a caregiver. It's currently on the festival circuit and I'm hoping to share it with as many caregivers as possible, as a major goal in making the film was to illuminate the struggles that caregivers experience, as I felt very alone in my experiences.
The film is having its Midwestern Premiere next Thursday in Chicago at the Blue Whiskey Independent Film Festival at the Music Box Theatre at 8:30 pm.
You've certainly been candid and generous in your sharing of experience, just today! Thank you! As Astraea and others say, we are blessed by reading each others' experiences. We learn with each typed word. There are some excellent documentaries out there on caregiving; one of my favorite is "Dutiful Daughter." I truly look forward to watching yours.
A couple of thoughts. I wonder if you, and perhaps all of your surviving family, might have a little bit of PTSD. I wouldn't want you to rule out having children of your own based on your experience with your father. Yikes! Of course it's your decision, but gosh, I hope the stress of growing up so afraid, and the stress of caregiving, with a large heaping serving of familial conflict, does not close you off to all the possibilities that now await you at 30.
Easy enough to be an armchair therapist here, but... i am a therapist now... and i am sorry that your mother and/or other adults did not protect you, and presumably your siblings, from this fear of your father's illness, and from the burden of caring for him. One of the research topics in the world of caregiving is perceived burden by the caregiver. One person might have an easy loving time of caring for a child born traumatically and damaged to the point of severe cerebral palsy, and this person finds the situation quite tolerable and normal. Another person might have extreme wealth, and lots of helpers, and still be weighed down by a partner with mild dementia. There are lots of ingredients to 'perceived burden', including the expectations of how much children are involved when there is an able bodied spouse. I'm not blaming your mother for involving all of you. But... i do wonder... if hired helped might have lightened the load, or some family therapy. There does seem to be some trauma in what you're reflecting. Or perhaps there is projection going on: i was certainly traumatized by my grandmother's decline, our isolation, the inadequate training on how to toilet a person with limited mobility. I did get therapy, lots of it. Our traumas carve us into the people we become, and perhaps, the traumas make us more compassionate.
I love being a client in therapy. I am challenged and supported to be courageous about my own narrative, the story i tell about myself. Perhaps you have a therapist. Perhaps being on the festival circuit means you don't have time right now. But you might treat yourself to counseling at some point. I think family therapy for all of you, together, might be a wonderful gift to your ongoing connectedness.
As they say in AA, take what you like and leave the rest...
@v647313n - Victoria, you might also be able to share your personal insight with us, about people who choose to have children in their 60s, and the impact on those children. Having a parent that's retirement age, when you're first entering elementary school, having to be a caregiver for an elderly parent when you're just a young adult starting out yourself, and knowing that it's doubtful your parent(s) will get to know their grandchildren .. or being pressured to marry early & have children, so your parent(s) can have grandkids.
Yes, I can speak in great detail about that and the film definitely touches on that as well.
I'd like to hear about your experiences RIGHT HERE if possible. You are concentrating on getting your film out and seen, of course. But we have a lively conversation going on here all the time about caregiving, and we thrive on sharing our unique AND common experiences.
@JaneCares - Thanks for your 1st comment; the discussion should be here, where others can read it. I personally think it's a little selfish, when people over a certain age have children, and unfair to the children as they grow up .. having a parent or parents who are old enough to be their grandparents, and possibly unable to do everything a parent would with/for a child. Most young couples depend on their parents to at least occasionally babysit, or fill in if Mom or Dad is sick .. but how can you expect that, if Mom/Dad are in their late 80s+ and need care themselves?!
So true. I have very complicated feelings about this, for obvious reasons. If my parents hadn't had me, I wouldn't exist, after all! But it has made my life strange, made me feel isolated from my peers whose parents are extremely active and involved in their lives, etc. It's honestly made me consider not having children myself, because I'm exhausted from caring for others and feel like I want to be selfish for a bit. I just turned 30 in November and am feeling like I probably should've when I was 20. There's so much I want to do and experience and see in the world. I was lucky in one way that my father was extremely active. He ran a marathon at 65 years old and kept himself healthy as best he could until the Parkinson's got worse. I'd say grass is always greener. I have friends whose parents got cancer and passed away when they were very young, so just because you have young parents doesn't always guarantee you won't be a caregiver as well. The difference is my intense fear from a young age knowing my father would not last long.
Yes, I grew up with a father who was 63 when I was born, so I knew that by the time I was 30, he would already be in his 90s. I always wondered and stressed about what kind of quality of life that would be for him, and how our relationship would change. I had recurring nightmares of him passing away when I was a child, and dreams of me having to save him from dying, things like that. I didn't travel much, and always wanted to do a semester abroad in college, but didn't. I stayed close to home because I feared something would happen. He developed Parkinson's before I turned 20, and it began to slowly deteriorate him. I spent hours and hours every day looking up his symptoms and seeing how he was doing according to how far along in the disease he was. It's ironic how crippling fear like that can kind of not allow you to enjoy being with someone. You know you only have a finite amount of time, but you spend so much time worrying about them passing away that you're not living in the moment and enjoying their presence.
In 2011, my father had a massive stroke. He was left paralyzed mostly, unable to speak, needed a trache to breathe well, and a stomach tube. But his brain was still completely there. He fought hard to stay with us. Along with my brother, sister and mother, we traded off caregiving duties, but it was difficult, with all of us trying to juggle our lives and jobs, and my father not being able to be alone at all at any time. He needed constant care and supervision. I learned how to suction his trache, operate a lift to put him into bed, manuever the wheelchair in places that didn't have ramps (I think I developed super human strength) and to communicate without words using letters on a magnet board. My father lived at home like this for one year. We wouldn't eat in front of him because he could no longer eat, so family dinners were out of the question. We would eat quickly and quietly in separate rooms, trying not to upset him.
Bringing him to family parties was frustrating. People didn't understand his brain still fully functioned, so they would talk around him or talk at him like he was a child. I defended him visciously to others, who didn't understand. I was sometimes too harsh (I was in my early 20's).
I remember being shocked when my father passed away a year later in November 2012. Despite how poor his health was, it felt like the caregiving would never end, and I honestly didn't want it to. I loved him and would've done it forever, no matter the cost.
It's been extremely gratfiying talking to others about this experience, because us caregivers keep it so secret. We try to look like we have it all together, we sacrifice so much of our lives, and no one knows what goes on behind the curtain.
I really hope to help other people feel less alone in their struggle, as I felt overwhelmed and isolated by mine. I'm just now coming out the other side of it and am learning about this massive, wonderful community.
Victoria, clearly you loved your father very much, and he was a blessed man to have all of you helping him. He must have been a very good man to have inspired so much devotion.
I'm sorry to hear that family dinners were out of the question, in your family's culture. I trust that you all held each other up as a family, and connected and repleneshed each other, in other ways.
If ever your film becomes available through a streaming service or on PBS, let us know. I'd love to see it.
I was a caregiver to my grandmother when i was age 14 until she died, and i found her, when i was 16. Being a caregiver to a beloved elder is a transforming experience. Probably why i've worked as a social worker to help other caregivers, and continued to be one myself with my parents, and probably with my partner eventually, since she has MS.
Thank you for sharing your story. My next question would be, how did your family hold up around your father? Family culture shifts around the neediest member of the family, and sometimes in unhealthy ways (unhealthy for the other members.) How is your mom, and siblings?
Yes, I will keep you posted on the film. We're on the festival circuit now (Chicago next week) and will continue playing festivals through the fall. We're having a theatrical release in late 2017 and will be on VOD as well then. I'm aiming to continue doing screenings (hoping to do educational to speak about things like this with caregiving communities) leading up to that point!
And to answer your questions -- yes, it's strange how everyone is affected differently. My mom is the type that is almost too strong for her own good. She's just now starting to open up about it, but she kept a tight lid on her emotions and I rarely saw her get overwhelmed emotionally, though I could tell it was taking a physical toll.
My brother took it the hardest. I think he's just now coming to terms with everything that happened. But I fought with my siblings a lot over it. Emotions run high when you're exhausted, all of us were so young, and taking care of an elderly father. I acted very unlike the real, adult self I've grown into with them, a lot while my father was still in ICU. We tried not to fight in front of him at home, though I know he overheard some stuff from the other room.
But yes, my brother is just now starting to come to terms with things and it's been difficult watching him accept what happened. You live in this kind of dream-like state for a while when you're caring for someone, none of it seems like it's actually happening sometimes, and then when you come down from it and are trying to figure out your own life, and you have freedom after not having it for a while, it's a lot to contend with.
And wow, you were a caregiver at 14. I can't even imagine what that must've been like. I was 24 at the time, so that's a huge difference. I admire what you're doing a lot and your attitude towards caring for loved ones. I live with so much fear knowing what I've been through that one day I may have to care for someone again as intensely as I did my father, despite having a support system. I feel shell-shocked, in a way.