Who Takes Care of the Caregivers?

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. 

sons, support group, hospital, love,caregivers,carer, rehab hospital, Kaiser rehab
My boys had to grow up quick.

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.

llife companion, caretaker,rehab
Race walking together.

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?

Much Love,

Momma Berna

I Hit Send

Whew! I’ve had my mailing list set-up on MailChimp for like forever. The email where I invite people I know, people I have interacted with and family members to introduce them to my blog.  You see, some of them don’t have face-insta-twit or they are just  not a part of my social media circle.

I have had the list set-up, formatted, re-formatted for a couple of months now. I have been too worried to hit send because…well…I am afraid. I am afraid of rejection, I am afraid of criticism etc. etc.  But fear will not move me forward nor will it help me get my story out. So today, I clicked send.

But even with just one hand to type and getting seriously brain tired after a few sentences, I’ve got a story to tell! I may not tickle your fancy like E.L James, or give you nightmares like Stephen King (he, is the reason I am afraid of– no why I hate clowns).  So if this is your first time here on my blog, welcome. Stay for a bit, I hope you enjoy what you read and come back. If you have visited before, welcome back. I do hope you keep coming back.

Now that I’ve hit send remember I am just a girl, sitting by her laptop, waiting for you all to read my story 😉

 

Much Love,

Momma Berna

 

Fear of Missing Out

I wish I could exude positivity all the time. I try to, but it isn’t easy. There are just days that the bad becomes ever so overwhelming that I feel that a huge dark cloud comes over my life waiting to swallow me up.

So here it is,  the dark cloud that has been brewing in my broken brain for a few months now. Keeping these thoughts stuck up there is not doing me any good. I AM ANGRY. Life is passing me by and I am too slow to catch up to it. I see my friends enjoy their weekends, hanging out for long runs, and running races.  I am happy for them, but real sad for myself. I want to be out there running, be at the gym working out hard, sweating like a sinner at church. I try to stay out of social media on the weekends to avoid seeing all the fun everyone else is having. The fear of missing out (fomo as the kids say it), is very real.

I am also missing out on the life of my boys. They are now at the age where we can go out and have fun adventures,  instead they have to slow down to my pace which I am sure is very frustrating for them.  I feel that I am not as present for Scotty as I was for Vincent. I knew most of Vincent friends as I used to drive them around everywhere. With Scotty, I hardly know who he hangs out with.  The three of us used to just jump in the car, go to the store, argue and work things out. I really miss those days. mising out

I also am sad that Armando and I are not enjoying our time together as we had planned. We go out on dates, but he ends up going into his caregiver mode when we are out because he worries about me.  I also end up getting frustrated because things that used to be easy, are no longer.

couple. love, true love,
Happier Days

I am missing out. I will miss out. The fear is real. That makes me angry.

Thank you for reading through my vent. If you have stuck it out this far, I would appreciate your thoughts & feedback!

Much Love, 

MommaBerna