I know family dynamics are never static. No matter how solid a family’s foundation is, changes will happen. The stroke changed my family dynamics in a way not one of us anticipated.
Prior to the stroke, I was the planner of vacations, i driver of the children & the organizer of the things: events, school projects, doctor’s appointments, shopping etc. etc. I was also the finder of lost things. True story: when I was conscious enough in the hospital, one of the boys would ask where some things are in the house. I could from my hospital bed, give them point by point directions to where the wanted/needed item was. Waze is not even that precise.
The realization that things will be very different when I get home hit me square in the face during family day in rehab. My husband, the boys & my sister were all there. They were being taught the things that they will need to assist me with after discharge. I would need to be assisted to the bathroom, I will need help in the shower, getting in & out of bed, getting in & out of the car. I also learned from the occupational therapist that my drivers license got suspended.
The moment I left acute rehab, my family became my caregivers. With my husband Armando, my primary caregiver. He had to dole out my meds & make sure I take them on time (no he didn’t check if I was cheeking my meds), he had to learn to give me my blood thinner shots (thank God that didn’t last too long) and had to help me keep myself presentable. My kids have to help cut up my food, get me around the house, and get me in and out of the car. My mom, who should have been enjoying her retirement once again had to: prepare my food, push me in the wheelchair around the house, and generally fuss over me.
I am so very grateful that I had such a strong family behind me. My sister pitched in whenever she can, my in laws came by to help out.
It is a lot of physical & emotional work being a caregiver. My job was to get well, rehabilitate and rest. Everyone else around me still had their regular lives to live. They still have jobs, school and homelife.
If you are getting nursing assistance from an outside service, thank your lucky stars. For most people, it is family that takes on this role.
Armando being my husband/nurse has it’s up & downs. There are times when I can sense that Armando was being stretched too thin. He will not openly admit it, but after 20 plus years with him, I had gotten good at reading him. Before he gets to the breaking point, I kick him out of the house. I just want him to get a break. Get out of the house, hang out with friends and do guy stuff.
One of the pitfalls of having family, specially your significant other, be your caregiver is the lines of your relationship becomes blurred. He wasn’t just a husband, a friend, a lover any more. He was also my nurse. He was responsible for my physical & mental well being. This past two years and a half years have put us through the ringer. There are times when Nurse Armando was around more than husband Armando which led to resentment. As I become more independent, Armando and I are slowly rebuilding and redefining our relationship. We now go on regular dates, laugh like we used to, fight like we used to and talk like we used to.
He is slowly moving away from the caregiver role and back to the husband role. He of course still takes care of the boys and I the majority of the time, I can’t complain…erm… I am grateful to wake up mornings with homemade (not out of the box) blueberry scones. We are talking about travel plans and not just treatment plans, we are focusing on healthy habits and not just taking my meds on time.
Life is definitely far from normal. I am still moving slow, I still need help doing things in the kitchen, but I am able to manage.
Our caregivers only want what’s best for us, but they must not ignore their own health and well-being. Caregiver burnout is detrimental to both the patient and the carer. Depression, anxiety and physical illness could be manifestations of burnout. (Get more info here)
To other survivors out there, how have your relationship changed with your caregivers?
To the caregivers, how do you practice self-care?