Empowering Caregivers-Spotlight-Don Hunt

I was born sixty-four years ago with Cerebral Palsy. My wife Doris, who is sixty-six, has extensive cardiac and respiratory medical problems. In 1992, she was diagnosed with ALS (Lou Gehrigs Disease). We were living in Atlanta at the time.

Twenty-nine years earlier I met Doris in a now-defunct business college in Atlanta. I would call it "Love at first Sight." and although Doris made it clear to me how she felt from the beginning, I was trying very hard to keep my emotions in check because of the failure of my first "puppy love" relationship I had years earlier.

After graduating from high school (1955) in Camden, South Carolina I attended Wofford College in Spartanburg. At that time, this was a Methodist liberal arts school for men. It was while I attended this school that "my girl" (a high school senior I met in Spartanburg) told me to "hit the road." Because of this rejection, I remained very reserved with Doris for quite a while, but I eventually began to look at the bigger picture of our future together.

I began to realize that my future wife needed someone to take care of her, although she is a highly intelligent person and certainly not a lazy one. Doris and her mother explained to me about Doris' cardiac and respiratory health problems that she was born with, and armed with that knowledge I made a vow to both Doris' mother and to Doris that I would spend the rest of my life taking care of Doris in every way that I could within the limits of my handicap.

An overprotective maternal grandmother with whom we were living had raised me. This was prior to my moving to Atlanta to live with my favorite aunt and after attending college. She loved me dearly but because of my handicap, she did not want me to grow up in all matters. However, Grandma Jones was a Christian, reading her Bible daily and never missing Sunday school and church. This way of life was passed down to my brother and I by my mother, although Dad was agnostic - he never attended church. You could say though that most of my spiritual beliefs and lifestyle were developed by me.

Doris is a deeply spiritual person, and although she reads the Bible she has never been "big" on attending church. She does pray, and although our churchgoing has been sporadic, I have attended at times by myself. Her mother went to church every Sunday that she didn't have to work, but I never saw that lady read a Bible. Doris' stepfather was an atheist, very immature, dictatorial and abusive in a variety of ways.

In 1991, after I took a disability retirement following 25 years as a respiratory therapist at Grady Hospital, we were living with my mother-in-law. Doris had a sudden fall, breaking her right ankle; however, this came as no surprise as she had recently experienced several episodes of falling for no apparent reason. Because of my substantial limitations, plus the fact that Doris' mother was elderly and frail, I had to temporarily place Doris in a nursing home. The situation was further complicated by the fact that my mother-in-law ordered me to move out of her house because she had the mistaken impression that I wanted to run everything and everyone - including her and Doris.

I moved out of the house while my wife was in the nursing home.

Needless to say, Doris had a terrible time dealing with my not being home when she was discharged. She no longer was able to reach out and touch me when she needed to, and I was no longer there to provide her with the love, comfort and security she continues (to this day) to seek.

Obviously it was not easy for me either. Her visits to my apartment kept us both going, and had it not been for the loving support of my neighbors, we could not have arranged these meetings, for they both picked Doris up and returned her to her mother's house. By this time, Doris was unable to walk at all, and was confined to a manual wheelchair.

From the period of her confinement in the Atlanta Nursing Home until today, Doris has never left her wheelchair. She has a very pronounced speech impediment to the extent that anyone who does not spend time with her on a daily basis will not be able to understand her. Doris is proficient in sign language and can communicate that way, but otherwise all communication with others is written. We do have a new and welcomed means of communication by which Doris' typed message can be spoken by a mechanical voice.

We now live in Oklahoma City, where Doris has nieces and nephews with large families. I am both husband and full-time caregiver to my wife, all of which is further stressful for us due to my limitations from my Cerebral Palsy. We are currently blessed by the five-day-a-week visits by two aides. One arrives at 6:30 am for two hours of personal care and light housekeeping. The other arrives at 4:30 pm to assist with preparing Doris for (but not actually putting her IN) bed, doing housekeeping chores (everything from mopping and dusting to laundry, meal preparation and errands). Although she's here with Doris for only 2 1/2 hours four days a week, she's here for five-six hours on Wednesdays, allowing me to have a "day out," for which I am humbly grateful.

Time has passed since I began writing this, and it is now the second day of 2001. The state of Oklahoma is dealing with a very hard and difficult winter, the likes of which is very unusual for us. The bottom line now is that Doris has had very sparse professional homecare over the past three weeks. The roads have been virtually impassible with traveling at a minimum. The morning aide has called at least a half dozen times during this period to report that she would not be coming due to the weather or car problems. However, our afternoon aide has come several times, dealing with 5-6 inches of snow, treacherous driving conditions and bitterly cold weather.

I once again am dealing with an ongoing dilemma that is overwhelming (physically, emotionally, intellectually, psychologically and spiritually). Anyone who has had first hand experience dealing with state and even federally funded as well as government-channeled-funded public assistance programs/services can relate to our situation. I have to believe there are millions of you out there that fall into this category.

The overriding and obvious factor in any publicly funded program is - MONEY! Not just the graft of corruption, but the fact that by the time the appropriated funds get into the administrative hands of those dispensing the services, there is never enough to pay and retain people of professional caliber to do what needs to be done. The ladies/men who work for home health agencies - nationwide - must have more than one job in order to survive. Most of the women are single parents, often caregiving an elderly family member in their homes. When a better paying position surfaces, she will quit the employer who is on the last rung of her pay scale. Translation: when your homecare assistant walks out of your door, you never know if you will see him/her again!

Then begins the waiting for the agency to find a replacement for the irresponsible former aide.

Precariously juggling my dual roles of husband/caregiver on a continuing basis leaves me with little or no free time for pursuing personal interests and hobbies. Daily, I'm struggling to maintain any kind of identity for myself. I now have two outlets. The most effective and consistent is my computer and the use of the Internet. The second is the men's group sessions I attend on Wednesday afternoons whenever it is feasible for me to do so. These are held at a senior mental health counseling facility in downtown Oklahoma City.

Doris, in addition to being very insecure (which in part stems from the fact that she is wheelchair-bound) also lives her life on an emotional plane. She has always been extremely jealous-irrationally so about anything I attach myself to (my computer for instance). This has declined due to individual and joint counseling we've received at the Community Counseling Center. However, one form of jealousy for which Doris has received counseling for the greater part of our 38 years of marriage pertains to my relationships with other women. This includes her 41-year old niece who lives nearby and is very happily married with three sons. This form of jealousy is very irrational, unrealistic and unfounded.

As I resume this on January 4, Doris' emotionally charged lifestyle has kicked in again. Yesterday, Doris told her homecare case manager that instead of waiting for her agency to find a replacement for the morning aide, she wanted to "let her go." This means - as Doris is well aware of - that I now have all of the morning personal care to do as well as morning kitchen duty,

I would like to convey a "twofold" message to caregivers who read my story. In any caregiver/recipient relationship, there is a bonding between the two parties involved. In order for that relationship to succeed there must be a mutual respect and love for one another - at least on some sort of level. Each person must accept the other as being not only human but as an equal. At the same time - the caregiver needs to be aware of the fact that from day one of this relationship, he or she will be the leader and set the example. Given the nature of the people, the patient may be very slow in warming to any overtures by the caregiver in the beginning, but eventually this will happen. One of the darkest hours for any caregiver is to become overwhelmed with the feeling of frustration and failure. YOU MUST NOT LET THIS HAPPEN!!

The bottom line is that you do not have to possess a degree to be a successful caregiver, but you must have love for yourself, your fellow man and be willing to follow the Golden Rule. This applies to family members also - even spouses. I realize it's not easy but it is the only realistic and "doable" option that both caregivers and patients have at their disposal. The caregiving of one spouse to his/her mate (such as the one I'm involved in) presents its own unique series of challenges. One might wonder how he can be a caregiver and a good husband at the same time. My answer is that you cannot fulfill both roles - even adequately - by wearing both hats at the same time. There is a time to be physical (if possible) and romantic, and there is a time to deal strictly with the needs of the patient, and both are not compatible simultaneously. I do feel that I'm a terrific caregiver most of the time, but feel that I'm a very poor husband. Overlaying all of this is that I am handicapped, dealing with fatigue, frustration and depression of the effects of CP joining forces with fatigue and depression of caregiving to my wife. The only way that I can live and not just survive is to develop an identity for myself. I have my computer - my link to my many friends and to the world at large! I am attempting to develop a career as a writer, a long-held passion of mind.

I chose to caregive to my wife. Not just because of my deep and abiding love for Doris, but also because I believe I have been mandated by my Heavenly Father to do so. We all make choices in life. Those who refuse to make choices or make the wrong ones are surviving - not living. I'm dong what I have chosen to do, and I would not have it any other way.

What keeps me going? My deep and abiding love for my wife, my strong faith in our Creator, constant prayer, and my Bible reading - such as Psalms 23 and 100 and First Corinthians, Chapter 13.