I am a Tri-Fecta of Caregiving
What is a Tri-Fecta of Caregiving you ask, well it is when an individual is a Caregiver, Co-Caregiver and a Caree all in one package. That’s right folks there are people out there with just these credentials. First off I am a part-time Caregiver for my mom who for the past 5-6 years has had strokes, heart valves replaced, “lung drained, scraped and in the process a broken rib,” COPD where fluid backs up onto your lungs and makes breathing a bear, as well as depression and several other minor issues. I am also a Co-Caregiver with my lovely wife Trish and we care for her brother who since April 1, lives with us. Robert has epilepsy since birth but was not diagnosed until later in his life. He utilizes a walker to get around, unable to make his meals, requires help with personal issues, but is happy that he is able to attend a local Easter Seals Adult Day Program. Finally, I’m a Co-Caregiver with my lovely wife Trish again for myself. I am going on 21-1/2 years of dealing with chronic pain in my lower back that is constantly getting worse. I wake up in tears several times a week, have an internal medicine pump placing Fentenal into my spine 24/7 and we recently found that if the med does not make it into the pump, its not a good thing for me or others. I still take over the counter medicine to ward off about 20% of the left over pain, see the pump only take care of about 40%-50% off the pain, it is not a cure all , at least not for me.
I have been told by several doctors here very recently (7-8 weeks) that the pump is the master in taking care of the type of pain I have, it is the Cadillac of pain control and if I decided to remove the pump the only alternative that could match it is, narcotics to the point I would be bed ridden, knocked out. Before the pump we tried that route, NO THANK YOU!! I was angry, on edge, short fused, temperamental barely sleeping, poor driver, I mean “REALLY POOR DRIVER”, snippy and drove my family more than arms length away. Caused rifts and distance to grow between myself and those I love is not my idea of pain relief Oh Yea, and I’m not going there again. I still have days where I am useless and I say it that way because there is no other way of putting it. Days where I walk around grunting and groaning, making faces which makes Trish think I’m upset or mad at her or Robert which can not be farther from the truth. Days (few, but their there) where I wonder why? Why me? Why are we going through this? You see not only am I going through this, but Trish, our kids, my immediate family, I could say even our animals have been pulled into this. With mom she backs away from asking for help when she knows it only going to cause me pain. I can handle a level of pain around a 5-6, more than that and I usually will say “I’m Done,” Not always, but most times. With my brothers, they have done so much for us (me) to help with the things around the house I just cant do, built a room in our garage for an office and play room for the kids, laid down Pergo flooring on the first floor of the house, helped with fencing, building a shed and more. These are things I would normally do but due to my back after about 20 minutes I would have to stop. Our Pergo floor would have taken me numerous weekends where they completed it in one. This brings up another issue, that when they are doing a manual project I normally (95%) of the time an not called and asked to help because they know I would be hurting afterwards and usually for days so they don’t want to put me through that, so they don’t ask. I feel awful when this happens mainly because you want to return the favor when a favor is
My final words are that even though my days are filled with helping get Robert ready, taking/scheduling HVAC appointments, caring for Robert, laundry, dishes, shopping and the rest. Even though my pain level is in the 6-7 range and I’m bending and twisting like a 5 year old with a Gumby doll, I am still awake, active, alive and able to deal with the extra pain. Don’t count out the caree in your life because you think your protecting them from extra pain, sometimes we need that 2-3 days of extra pain, or we need to help paint the room (even if it is 1/2 a wall), or help build this or take care of that or the other, we may need that time with our brothers, sisters, husbands our wife’s to prove not only to them but to ourselves that we are still alive and able and not just a fly on the wall that everyone tip toes around like broken egg shells on the floor. We appreciate the concern. We thank you for your time and your love. What we do need is your trust and support. So the next time your painting the living room and your caree walks into the room, hand them a paint brush, or when your repairing the fence that went down, hand them a hammer.