Preventing Caregiver Burnout~

I have been a full time caregiver for 20 years, some may call it just being a mommy. Basically that's how I see it as well...except my mommy duties have been much more complex over the years. Looking back through those years, I can now see all the oversights I have made. Many of those mistakes have been of my own negligence. Due to these misjudged decisions, the one who has suffered is myself.
Today I am tired, I am exhausted and I am doing everything I can in my life to find my strength and pull myself together.
If you by chance are reading this, and you are a caregiver...please keep reading and please take my advice seriously. Do not make the same mistakes that I have made.
Don't be afraid to ask for help and don't hesitate to accept it either.

I suppose when I was a twenty year old mother of a medically fragile child, my biggest concern was his health and recovery. I put it all on me.
Every part of his recovery,his happiness and his life I felt was my responsibility. I can finally admit, my reasons were simple...I had felt so at fault for his injury that I forever had to bear the pain of his rebuilding. I won't even begin to tell you about the lost nights of sleep that I had prayed and begged for the roles to be traded. Oh how I wanted to take his pain away, and because I couldn't do that..the next best thing was to throw myself into the midst of everything. Stay busy..
Redeem myself~
and that's exactly what I did.
Reminiscing back to the days in the beginning, I wouldn't even let Paul do much. There had always been an element of guilt. A feeling that it wasn't Paul's fault why should he be sentenced to a life that required him to submit his wants and needs to fully take on the role of a caregiver.
As tiring as it was, he resumed his life at work and I quit my part time job and gave up on my wanted career as an ECE teacher. I was now going to be a full time stay at home mom, with a part time nursing, physiotherapy, Occupational therapy, speech therapist and nutritionist position.
Looking back, this advice that I am about to give you..I sadly did not take. Because of this, today I am paying for it. Whether or not I made all the right choices we will never know. Sometimes I wonder what life would have been like if I would have returned to work. How would things be different today if I would have hired a full time nurse?! The problems we have today...I wonder if they'd even exist?
I don't look back often, It was a choice for me to stay home. I don't really regret it, I have had a wonderful life being available to my kids. Homemade dinners, attending gymnastics, hockey, ringette, drums and guitar lessons. I was blessed to be home, but I burnt out...and if I would have known back then what I know now, I would have had more help.
So here it is friends,
One of the first important things anyone should do when thrown into a traumatic life situation is develop a team of supporters.
1. The Manager
Usually this person's role is too manage, direct and supervise. The manager is the one who keeps you in check. Makes you step back and see the big picture. Its so important to manage all the appointments, all the doctor appts, therapy appts and everything else that is of importance. He or she can be available for attending some of these meetings and take notes and pay attention while you speak with the professionals. This person may also offer support if you are getting bad or upsetting information.
I was fortunate, my husband was always available for appts. He didn't attend all the therapy clinics. I guess if I could change anything about that it would be to have others help out with the therapy. I was always the one who took him, and at times he resented me for that.
2. The Record Keeper
This person is the one who keeps you on track. She would be someone to remind you of your appointments. I do remember once I had Kailey, it became a bit more challenging. Not only did I have to worry about getting Braden to his appointments but now I had to worry about what Kailey was going to be doing for the day. I had to find child care for her, be sure someone could take her too and from school. What would I do for dinner? It would have been SO nice to have someone take control of that. Thankfully my mom pretty much did this role, I was blessed to have my parents around for Kailey. Usually my mom would have some dinner made for us. If you are reading this and you ever find yourself supporting a family member or friend during a difficult time, make food. Bring them meals..there is NO time for worrying about dinners when you have a sick child. I wish I would have had more support with that. It was just my mom, I am blessed to have had her. We would have been so screwed without her.
3. The Social Networker. So you can stay in touch with others.
This is an important role. We did not have anyone to fill this, although we did ask family to call eachother and keep everyone updated. There was no social media back then, thank god...and in the very beginning we didn't have email.
Exhaustion is a very common problem when you have a child with an illness. After a long day at the hospital, the last thing you want to do is read emails and messages and respond. My advice is to find someone you can trust and have them play this role. We did rely on my parents to contact others, but honestly if you wanted to see how things were you'd to have been at the hospital. It didn't really end either once we left the hospital, we were admitted repeatedly over the years. Therefore, it made it very difficult to keep in touch with others and keep them informed. If they wanted to know they had to contact us. I wish I would have had someone like this in my circle. I guess then I wouldn't have so much regret today.
4. The De-Clutter. To keep your house maintained.
Another very important role, and thank you again to my parents for keeping my house clean and laundry done every time we were admitted back into hospital. The one nice thing about having my parents so close was that whenever Braden was admitted into the hospital I was never behind on laundry and house cleaning. My parents did it all. I suppose if I would have had more support my parents could have been there more for us, thank goodness we were blessed enough that Paul and I could be together much of our time. The lack of energy after a day at an appointment or over night stay due to tests is overwhelming. Honestly the last thing on my mind at the end of the day was how clean my home was. Sometimes I was embarrassed, stressed and ever so devastated with state of my life, I at times had no control in my own world. Its a scary place to be, and when you feel like you can't even direct your home it can cause such duress. If you find in a similar situation please seek out someone who can be your de-clutter person. Having a messing, disorganized home during an already chaotic mess can cause further stress. Once a week, find someone who can tidy, fold laundry or organize a meal plan. Its amazing how much just a few hours a week can help out someone who's in need.
5. The Distractor~ Someone to remind you to take care of yourself.
This is probably the most important one. Again if you know of someone who is living a life in which all of their time is consumed with a sick, ailing or physically challenged family member please take some time to spend with them. Encourage them to get out, they need to take time for themselves. Find some information on the importance of their own health and well being. I remember when I first realized I needed to stay fit. Remain active, join the gym. How am I suppose to care for someone else who relies on me when I am not even able to care for myself. Once I started running way back in the day...I was feeling much better about myself. Even mentally it helped me, 1/2 hour a day of physical activity can do wonders. Please incorporate this person into your life. Find this friend who can gently encourage you to step away and care about you. Even if you could commit yourself to one afternoon a week where you can stay and care for her child or relative, it would give her the much needed time to rejuvenate and regroup. Also, be sure they care for their own mental health. If you notice they are showing signs of depression or anxiety...remind them to get some help. Find a therapist who can help them with their worries.

Trying to balance all these systems in ones life can be challenging. Overwhelming life changes can paralyze you, so if I can leave you with anything taken from my own experiences it is this;
"Let them know you care, remind them to care for themselves first. Be a leader, take control and help out where needed. Let them know its ok to trust you, that you want to take from their very tired hands some of the burden they have been carrying. Do not be sensitive, many of us have lost much control and that can be scary. Find ways to keep them in control, be caring of that. Do not put expectations on them, it will only cause further pain and feelings of defeat. Be gentle, kind and understanding. Please remind them that they matter, and that someday this too shall pass~
Until tomorrow my friends good night and god bless~