It's not always about you...
As we are struggling to survive our personal hell of chronic illness, it is very easy for us to forget that there are people around us who have given up their entire lives to be our support system. We are so focused on our pain, our medications, our doctor’s appointments, our diets and our battle that we forget that the lives of our family members changed the instant we became non-functioning members of the team. Not only have we pulled away from helping them but we have now started to depend on them for more than we ever did before and the added burden can be overwhelming.
Even if we are the most thankful, gracious “sick person” on the planet there will still be days that we are simply awful to be around and it will take the patience of a saint to put up with the emotional baggage that we are carrying. Our family members are asked to become home nurses, counselors, housekeepers, personal assistants, nannies, pet sitters, beauticians and a whole host of other roles that they may have had no experience providing before we ever became ill. On top of all of this, they may also still be holding down a full-time job to provide financially for the household.
We must also remember the weight of the emotional burden they are carrying by being concerned about us. They feel completely helpless to take away our pain and suffering. They are watching the person they love more than life itself go through one of the worst periods of our lives and there is nothing they can do to make it better. They cannot stop us from writhing in pain. They retreat into the bathroom to sob into towels so we won’t hear how broken-hearted they are that they can’t “fix it.” They push past their own fears of hospitals, blood or needles to stand by our sides and hold our hands as we go through painful procedures just so we won’t be alone.
Our loved ones spend hours researching our diseases on the computer late into the night while they sit at our bedside watching our chest rise and fall to make sure that we are still breathing. They cook all types of food hoping that something will entice us to eat as they watch us wither away. They read books to search for better treatment plans, attend support group meetings with us, hunt for the best doctors in the country who can possibly make us better and they talk to anyone who will listen hoping that someone will have some advice to help our situation. They constantly hold out hope that they will be the one to find the answer that no one has figured out yet that will give us our lives back. They refuse to give up.
Throughout all of this support, we often forget that they have needs too. It is understandable that we are overwhelmed with trying to survive and our entire focus has shifted towards our own self-interests. However, it needs to be stated that the longer our chronic illness continues, the greater the need will be for something called “respite care.” This is a term that is used when a caregiver is relieved of their duties on a short term basis by someone else (either a professional or a personal friend) so they can get some well deserved rest to re-charge their batteries and tend to their own needs. Sometimes this is for a long weekend or even a full week if possible, so the caregiver can return to supporting their loved one without becoming a patient themselves from exhaustion.
Respite is wonderful. I think that it is completely necessary for caregivers and I strongly suggest that everyone who is struggling with a chronic illness needs to encourage their loved ones to take advantage of the resources out there for respite care. Here’s the kicker… When we started searching for professional help to provide respite for my mother so she could have a break from taking care of me at home they simply DID NOT EXIST!
There are literally NO services for respite care when the situation is a “senior” parent taking care of a disabled “ADULT” child. There were tons of companies for middle-aged caregivers taking care of elderly parents. I saw thousands of services for anyone taking care of seniors with dementia or Alzheimer’s disease, no problem there. We would have been all set if I was a disabled “young” child at home. They even had services for people who were taking care of disabled seniors in their home who were not their parents…but a senior woman taking care of her disabled adult daughter… nothing, nada, zilch. I couldn’t believe it.
The closest thing I could find was when I was looking at the disabled veteran’s pages and wives were looking for respite care when they were taking care of their husbands who had suffered severe traumatic injuries sustained in combat. Most of them were being handled by the Veteran’s Administration or the Wounded Warrior’s Project which I obviously didn’t qualify for so that was out of the question. After an exhaustive computer search, we finally gave up and realized that there wasn’t going to be any rest for my poor mother. We were stuck in our situation, alone, sick, tired, frustrated and with limited finances as well which didn’t make the situation any easier.
I know that you are suffering through the worst days of your life right now but every member of your family is walking the path right there with you. They may not be able to feel every single ache and pain, they are not swallowing the 50 pills every day and getting poked with every needle that you are feeling but sometimes having to sit back and watch it happen to someone you love is even worse when there is nothing you can do to help them. Your family is suffering too, just in a different manner.