If you have been diagnosed with a moderate to severe chronic illness, more than likely you’ve required help or care from another. Whether it’s down time from a flare, the minutes or hours while waiting for morning stiffness to subside, the days following surgery or the dreaded illnesses brought on by the attack of our own immune system, having to be cared for is not how we envision the glamour of being treated like royalty.
Next month, I will celebrate the 24th year of my relationship with Arthur (rheumatoid arthritis). Having already experienced 32 operations, multiple flares, side effects from medications and battles with secondary and other illnesses, my arthritis resume is pushing the maximum pages. Needless to say, along with these experience, I’ve also had to be humble and ask for, as well as receive help, in various ways ranging from mobile assistance to personal hygiene and then some.
In addition to being the recipient of care, I’ve been a giver. Raising a child while I, the parent, dealt with lost abilities, was a challenge in itself. Among other nontraditional methods, when my son was young and began to dress himself, he’d run to me carrying pliers so I could snap his jeans because my fingers were unable.
Knowing first hand what it’s like to live daily with a disabling disease, I’ve always been open to caring for others in similar situations because of the common understanding of physical and emotional needs. There have been numerous times when I’ve been involved in the care of others on a short-term basis.
However, there was a time when an elderly man needed care and had no family or friends to rely on. Feeling his vulnerability, I remembered the Golden Rule and decided to oversee his long-term care. Having physical limitations of my own, he understood the need and agreed to hire outside help.
Talk about a challenge! One would think, with all of the services available and the willingness to pay, a person in need could find efficient and reliable help. I quickly learned, the advertised care programs do not necessarily meet the needs of a person who is homebound. There are hidden clauses and limits to the services provided. I found the private sector and personal referrals to be the best route in his case.
Following the decision to move into a nursing home, he continued to rely on me as his connection to the world, to run errands, meet financial obligations, translate medical terminology to his understanding, to be a friend and more. This required having to visit the facility every other day, to carry two lists when I went shopping, a regular review of health care and legal matters, responses to late night emergency nurses calls and finding someone to fill in if I was out of town or required personal time due to my own illness.
This was my regular routine for three years and it was exhausting!
Many experts offer advice on how to handle being a caregiver if you yourself are in need. While the suggestions are good, they’re not always realistic. I was caring for someone in need and yes, my heart felt for him because he was alone and became dependent on me, but I was careful to keep some distance. There are many people who care for loved ones, aging parents and children with special needs in a similar situation and their hearts are invested on many levels. It’s not easy to put your own needs first when trying to cope under these circumstances.
Have you been a caregiver to someone requiring short- or long-term care? How did it affect your life and/or personal illness? Do you have tips to share that would be beneficial to us?
Leave a Comment