What Does A Caregiver Do

I’m a Caregiver and Medical Mom to my 2 year old medically fragile (disabled) son who has Acquired Cerebral Palsy and other medical issues.

My Typical Day

My typical day at work starts by me waking up after only an hour or two of sleep.

I go downstairs, warm up some water; and get my son’s Gtube feedings prepared for his first feeding of the day. My son is Gtube fed; which means he is fed through a tube going through his belly. (He is unable to eat food by mouth due to being intubated for quite sometime and losing his swallowing ability.)

After I hook him up to his Gtube feedings; I stretch his body out by slowly massaging his legs and arms and pulling them gently side to side and over and below his head.. He has Spastic Cerebral Palsy so it’s important for him to get exercise all during the day. After that; he may go back to sleep but if he does not; I put him in a standing position to get some weight bearing going through his legs. While he is practicing standing; we listen to some songs on the radio or TV.

Once he is tired out from that; I let him take a nap as I tend to my other baby and also get some work done as I am a Perfumer as well. (I blend fragrances for a living as well). After about an hour or two it’s time for my son to eat again so I prepare his Gtube feedings again, add some blended vegetables this time, and also give him vitamins and any meds he may need via his Gtube. I make sure to flush him with about 30-60 mls of water so that he doesn’t become dehydrated or constipated. I also check his vitals such as his temperature, his blood pressure, his respirations, his pulse, his oxygen levels. I make sure the oxygen tanks are calibrated and ready to go for our outing of the day which usually consists of either a doctor’s appointment or a therapy session.

My son is quadriplegic also so I have to pick him up and carry him around as he is unable to stand, walk, crawl, or sit unassisted. He is unable to communicate since he does not talk and also has a Tracheotomy so I have to constantly suction him all during the day by extracting the saliva from the tube in his neck; making sure that he does not aspirate or choke off of his secretions. I wash and clean all equipment. Sanitize all areas we have been in around the house. I may call his doctors or search the internet to see how I can coordinate more cares for him. After I’m done with my daily phone calls and emails; I’ll prepare to give him a bath which can be quite challenging since he is not able to get water into his trach area. Meanwhile; I’m running around after my 1 year old as well. I’ll then read them a story, play with both kids until it’s ready to leave. By this time it may be around 3:00 pm; I get all of our clothes on, get the diaper bag; recheck for an emergency trach and CPR bag; buckle my son into the car, and then head out.

During our drive; my son is usually up and happy, smiling and listening to the music in the car. I pull up to his Therapy session; call them to let them know I am outside and wait for them to come escort us into the building. Now it’s time for his Physical Therapist to take over; so I either watch and take mental notes of what I don’t think they are doing right or I voice my opinion and ask questions on what we can do for my son in order for him to try and learn how to walk or crawl or at least have some balance and coordination. As usual, the therapist doesn’t have any answers or they do the bare minimum of pediatric therapy which usually leads me to feeling defeated once again because it just doesn’t seem like their heart is into their work or craft of providing therapy to young pediatric patients.

I usually go home after or to the post office, or the local market with my son. I talk to him even though he can not talk back. I talk to him about how his future looks and how I’ll always be there by his side to help him get around.

Pros

The pros of my job is that I get to stay home with my son and take care of him. I don’t have to worry about anyone mistreating him or worry that there will be an emergency while I’m not around. I feel that he is safe with me and I get to spend lots of time with him. He makes me smile and makes me very happy.

Cons

The cons are that while this is not a paying job as this is my son; I am kind of mourning, so I often find myself crying about how my son came home normal; then 2 months later became permanently disabled. This is the con of caretaking for your own medically fragile child because usually, you would do it for someone else; but when it’s your own kid; it’s more emotional because no one has a baby and thinks that their baby will end up being delayed or non ambulatory. None of my friends have a toddler or child like mine so no one can relate to what I am doing daily. Not to mention other daily life issues in these crazy times we live in..