I have been a Caregiver at various times for over 25 years. If I were challenged to put my finger on the one thing that causes the most stress other than the immediate health issues, I would have to say it would be the financial issues.
In my ‘normal’ line of work, I have been a Bi-vocational Pastor or Evangelist. By its very nature, bi-vocational implies two jobs or vocations. So I have traveled as an Evangelist and been a salesman at the same time. I have done long haul trucking and also done the work of an Evangelist at the same time. When pastoring a church I have done work as a well-driller, plumber, electrician, carpenter or job site overseer or manager. The thing that is so attractive in that secular work is that it is largely predictable. We know if we put in a certain amount of time per day that we can rely on our paycheck to be of a certain size, expenses for our household to take a usual amount of our money and the rent or mortgage to be the same from month to month. But when we are dealing with all the unexpected issues that can come at us in health and mobility we suddenly have a maverick expense budget. Our budget will not be the same as the average American household.
My wife and I have had times when a simple little scratch turned into an oozing sore that refused to heal in a matter of days. Then we would watch helplessly while the sore grew deeper and expanded in area until the inevitable trip to the hospital to have it treated which often mean she would have to stay overnight or even a few days to clear up the infection and bring healing.
If I were unemployed it would not be an issue to deal with that hospital time and the driving from home to hospital to visit, although unemployment would mean no income. But since I am employed albeit self-employed in construction it became a nightmare in logistics. I am going to interject here that if I had not been self-employed, I would have been fired or let go for all the absences I have taken. In addition to the numerous times work has been set aside, I have had to come up with extra cash flow to cover the extra expenses. Self-employment works for me. I developed the lifestyle while being more active in Christian ministry, and I transferred what I had learned to the life of caregiving. While the advantages to self-employment for me are clear, the fact remains that when I need to spend the most time being a caregiver is usually the times when there are more bills and I find myself trying to juggle the two demands on my time.
However, There are times when the flexibility and the need to take more time to assist at home cuts into a work schedule that causes certain jobs to be given to another person in a company or labor pool. When that happens, I find myself looking for extra sources of income from alternative jobs or situations and have even sold off property to pay the bills. The idea of selling off tools and equipment has been a last resort or final solution. It only happens when all other options have failed. Just because if an essential piece of equipment was sold, it prevented me from ever bidding that kind of work again in the trades.
Being unemployed and competing for work among other people in the same trades is stressful. The need to sometimes be up all night and pull an all day job is exhausting, and the added issues of keeping the schedule open for unexpected events or needs will add even more stress.
During a particularly bad period I was getting a few hours of sleep per night, hospital billing departments were calling at all hours of the day for money, utilities were past due, cupboards were bare, the gas tank was so close to empty the van was running on fumes, some of my tools were stolen on a job-site creating an even worse issue at work, storms were rolling through the area while I was desperately trying to repair roofs and my sweetheart was dealing with some more deep wounds. Wounds that were innocent looking when they first appeared, in some cases just a scratch or small puncture wound and turning into a deep frightening hole. I would sometimes have to work hard at keeping my fear of the situation under control. When doctors talk of amputations, and removal of large sections of tissue, it gets very frightening to my wife. If I yielded to the fears and worries it would usually pull my wife even further down in her feelings.
One day in June last year, I realized the stress was taking me down. I also realized that the loss of sleep was becoming dangerous, as I was beginning to doze off at the wheel while driving across town from one small job to another, I was forgetting things, I began to be irritable and short tempered and resentment began to build. Just when I thought that things could not possibly get any worse, we had other family members who were also dealing with health issues and things just kind of exploded. One morning I woke up after just three hours of sleep and my hand and leg were numb. I noticed while at work that day that my speech had began to slur and I was having some trouble focusing my eyes. I did not need to have a doctor tell me I had suffered a stroke. It was mild to be sure. I deal with a chronic High blood pressure problem and I realized I was going to be out of action myself if I did not slow down. As if that were not enough to deal with, I had an abscessed tooth caused by a guy who accidentally hit me on the jaw while swinging a board into his truck. As my wife continued to have issues, and the other family member continued to worsen it was obvious that nothing was going to change for the better soon. And things didn’t get better. There were issues with the ’98 Dodge Grand Caravan that is wheelchair equipped for my wife’s use. I was going down fast in my own health issues. I started developing heart symptoms, blood pressure was very high, and I had started getting some excruciating headaches.
All of this led to our marriage being more strained and our affection for one another was cooling considerably. I could not do anything for any of the other issues that were beyond my control, but I knew that when my wife and I were on the same page and standing together and pulling together that we could handle just about anything. We will always have to be careful and budget our money and plan carefully what we eat and how we run errands so as to conserve. But I began to practice loving her like we were when we first met. I began to look for things to compliment her on. That took my mind off those times when all I could see were the negatives. When things were especially hard I would look for all the positives. One thing was easy to do. I often tell friends that my wife could make a gunny sack look like a million dollar dress because she is so beautiful to me. It is not hard for me to see her beauty and it is easy to tell her. I don’t have to say anything I don’t mean. She still gives me little butterflies in the heart when she turns and looks at me. Not only did I look for things to compliment her on, I tried to get her something special each time I went for groceries. She has certain favorite foods. It is great that her most favored foods are very healthy and so when I am grocery shopping I will not only get the staples but also try to pick up those things that taste good for her too.For Christians, we are told to practice loving one another. It applied in the original verse in the Bible to church members loving one another. But it certainly can apply even more to marriage or family. It made the difference for us. Sometimes my wife is in so much pain she is just venting and the things that are said are hard to hear and take. But when a person is seeing all the good, and remembering all the reasons why love drew two people together, it is easier to roll the venting off and to keep a positive attitude. My wife is always talking about being positive. She taught school for over two decades and she has a lot of students that adore her in her past. Watching her deal with children, some of whom come from very abusive homes, taught me a lot about how to handle other people and how to handle situations with her when she was in pain and just letting all the fear, pain and frustration flow from her mouth.
For Christians, we are told to practice loving one another. It applied in the original verse in the Bible to church members loving one another. But it certainly can apply even more to marriage or family. It made the difference for us. Sometimes my wife is in so much pain she is just venting and the things that are said are hard to hear and take. But when a person is seeing all the good, and remembering all the reasons why love drew two people together, it is easier to roll the venting off and to keep a positive attitude. My wife is always talking about being positive. She taught school for over two decades and she has a lot of students that adored her in her past. Watching her deal with children, some of whom come from very abusive homes, taught me a lot about how to handle other people and how to handle situations with her when she was in pain and just letting all the fear, pain and frustration flow from her mouth.
Do you know that loving someone can be very hard work or it can be very easy depending how your own attitude is? If you enter into the effort with the attitude of “I have to do this to be able to cope” it will be a chore and drudgery and the resentment will build even more in your own self. But if you enter into this time of practicing love with the understanding that whatever is done in love and compassion and whatever is given in those attitudes is never lost, then you will find that even though the cupboard is bare, the pantry is empty, the gas tank is dry, the house might be too cold or too hot, that two people working and thinking together will win where divided they will fall and fail. It is far better to be looking at the world and your problems from a position of loving the person you are caring for rather than as a chore or a work sentence.
Life for caregivers is not an issue of the glass being half full or half empty. Because if we admit it to ourselves, often the glass is empty. The thing I learned while we loved one another and worked together to overcome the issues with my wife’s health and now my own is that it inspires and attracts an increase in assistance from others. While sitting in Emergency rooms, I noticed many times that people who were belligerent and critical and complaining or arguing with family would not be as well received as those who were being decent respectful and considerate. My wife will often and constantly thank doctors and nurses for their care and attention. Even when she is in pain and really struggling she will keep giving compliments and letting them know that they are appreciated. When we come in together and the doctors and staff see us obviously treating each other lovingly, it seems to make her treatment more gentle, there is more compassion shown, she is handled more gently and she will often be even more profuse with her compliments. Love does indeed make the world go around for us. Certainly it makes things easier to handle.
I realize that if you are dealing with a loved one who is not coherent or completely ‘with it’ anymore that this is harder. We have been through those times. And they are very hard. It is so much easier when we are at least able to communicate clearly and the fog of misunderstanding is not there, but we can survive even those times when we keep our eyes on the true reality. Which is that one truth that we should never forget. We married because of love, and there were certain traits that attracted married couples to each other. When I look at my wife, I do not just see the present, I also see the sweet things she has done for me in the past. I think of the times when life was going smoothly and I think on those things. When I think on the good, the lovely, the pleasant and the sweet things between us, the things of good report, it is easy to care for her in love. It is easy to keep my eyes on the relationship and keep it right.
I wish I could find a job to do at home !!!
Susan, as much as the internet is flooded with work at home schemes, very few check out. I am sorry that you are struggling. It is not possible for me to say some magic words and make it easier or better for you. I am now recovering from a major accident that damaged my back and required surgery. So I am now painting ceramic pieces for a lady that markets little Christmas manger scenes. All I can say is keep trying and I will pray for you. I really hope you find your source of income. If you have office skills, you can do office work for small companies at home. Might be worth checking into.
I’ve been a caregiver to my Mother since 1997 (even though at that time no one but me thought she needed taking care of) with limited support from my siblings. There are times while being a caregiver that it can feel extremely overwhelming. I agree with you both that being a caregiver (whether for a child/friend/adult parent/adult spouse, etc.) is challenging but for me it’s well worth it because my Mother took care of me (and still tries to) and now it’s my turn (or really my siblings and my turn) to take care of her and make her life as comfortable, independent, dignified and healthy as is possible.
I couldn’t agree more. Dealing with being a caregiver is, at times, so stressful. Having to deal with insurance company’s, Doctor’s, doctor bills, hospital bills, put it in a whole different league.