senior couple with physicians in a hospital

Family caregivers: hard-working, dedicated, patient and loving family members who care for a sick or disabled loved one. We want to thank this group who often doesn’t get much thanks for what they do.

Every caregiver’s experience is different. In hopes of beginning a conversation about family caregivers, we’ve asked Elaine to share her story about caring for her husband during his illness. If you’ve spent time as a family caregiver, please add your story in the comments below. Let’s share advice and show support for others who may be going through a similar experience.

Here is Elaine’s story in her own words:

My husband, Arlan, was a very kind, caring, and intelligent man who was in excellent health. Throughout the 39 years of our marriage, he very seldom got sick. He loved his work as a mechanical engineer. He loved his family and was thoughtful, kind and helpful to everyone around him.

One day, Arlan noticed that he had difficulty reading. The next morning he woke up feeling a little dizzy, as if he was beginning to get sick. After breakfast, he slept for a while. When he woke up, he was limping on his right leg. As we ate lunch, he began having difficulty reaching for his glass of water. Since we live in a very small city, and do not have a doctor here on a regular basis, I immediately drove him to a hospital which was fifty miles away. The doctor there did a CAT Scan and found that Arlan had a tumor in his brain. We were then immediately sent to a hospital in a larger city, where there were doctors that specialized in brain tumor surgery.

Senior-man-getting-MRI--[669x469]

An MRI showed that the tumor was a large area containing fluid. Often once that type of tumor is drained and medication is given, the patient heals completely. That was what we were hoping for the next morning when the doctor performed the surgery.

During surgery, the fluid was drained. However, the doctor discovered that there were many small pieces of tumor scattered throughout Arlan’s brain (like stars in the sky). It was impossible to surgically remove all of these small tumors, and there was no cure and no treatment available.

The doctor told us that Arlan would probably live only three to six more months and that his death would be very painful because as the tumor grew, the pressure in his brain would increase. He was put on medication that would slow down the growth of the tumor (but not stop it), and was released to go home two days later.

All of this occurred so quickly and unexpectedly that of course we, as family members, were shocked. It was unbelievable that such a healthy man could have a brain tumor and that there was no cure for it. We did not doubt what the doctor had told us, but we chose to face this challenge hoping that there would be some way he could be healed. We always had a calm, peaceful feeling that we just needed to take everything one day at a time, and as part of our strong Christian faith, we always prayed about each decision we needed to make.

After surgery, Arlan no longer limped or had trouble grasping things. He was happy to be able to return to work for three months and finish a project he had been working on. He was able to concentrate and do the work he needed to do.

Our children were grown, and I did not work outside of the home, so I was able to be with Arlan all of the time. I always drove the car because the tumor in his brain was still obstructing about 30% if his vision on his right side.

The tumor affected his ability to communicate sometimes. He could always hold a conversation about most general subjects; however, he had great difficulty telling us what he was thinking. We just had to be patient with him. It sometimes took him an hour to tell us several things he was thinking, and even then, sometimes he could not remember everything he wanted to say.

Throughout his illness Arlan always maintained his kind and loving personality. I believe his attitude, plus our consistently getting enough sleep (we tried to faithfully go to bed by 9 p.m. each night), took a tremendous amount of pressure off of both of us. I never felt discouraged or overwhelmed. I considered myself fortunate to be able to help him. I sometimes thought of the challenges other seniors might have if their own health or age prevented them from caring for an ill spouse or child. I realized how difficult that would be and how much they would need to rely on other people for help. I was grateful that my health was good, and I could do everything Arlan needed me to do.

Senior-woman-writing-checks-[669x469]I was blessed to have no pressure at all about finances. We had excellent insurance through the company he worked for, and we had no financial debt and that gave us great peace of mind. I was also glad I already knew how to do our bookkeeping and what bills to pay. With his illness, Arlan could not have explained any of that to me.

I gave Arlan all of his medication so that no errors occurred, and I consulted with the doctors when necessary. He was not able to do that himself. He did exceptionally well for about four months. Then he had some challenges occur that definitely reinforced in me the importance of always remaining by his side and overseeing his care.

The first event was when his blood sugar suddenly elevated to a dangerously high level because of the medicine he was on to slow the growth of the tumor. Because I always watched him carefully, one day I noticed that something was not right. I called the doctor and told him my concerns, and then I drove Arlan the two hours to the hospital. His blood sugar was 1000 by the time I got him to the hospital. They were able to bring his blood sugar down to a safer level, but from then on, he was diabetic. So, I had to oversee his blood testing and give him insulin shots when needed.

I kept detailed notes on the medications Arlan was given, learning as much as I could about the medicine and recording each dose he received. Because I was keeping track, I was able to remind nurses and doctors of the many medicines he was on and the dietary restrictions he had. On several occasions, I was able to ask questions and stop him from being given the wrong medicine or certain fluids containing sweeteners.

My very strong advice to everyone is that you, or a friend or family member, should ALWAYS stay with your spouse or child when they are in the hospital, going to the doctor, or having medical procedures performed. You need to be the one giving the doctors and nurses information about your loved one’s current medications or health history, so that it is accurate.

senior-man-and-medication-[669x469]

Sadly, I learned that medical personnel will often ask a seriously ill patient detailed critical questions just before a medical procedure. Some medical personnel do not seem to realize that the patient is incapable of giving them accurate information because of their illness. You or a family member must always be present to oversee your loved one’s care and speak on their behalf.

As we prayed to know what to do for Arlan’s treatment, we felt strongly that we should consult another doctor who specialized in brain tumors. We were also strongly impressed to do radiation even though we knew it probably would not cure the small tumors.

Eight months after Arlan’s brain surgery, he was doing quite well. His tumor had greatly decreased in size instead of growing, which was extremely rare in tumors such as this. We scheduled a trip to a specialist in California to have the dead tumor removed.

Then one night Arlan began having difficulty breathing, so I rushed him to the hospital nearest us. He was diagnosed with having blood clots in his lungs, due to the medication he had been on. I, or one of our children, stayed in the hospital with him for the 10 days and nights it took before the blood clots were gone from his lungs. He was to be released to go home the next morning.

That night, as the nurse was changing his IV, and I was watching her, he suddenly stopped breathing. He had died peacefully as he slept.

We were very surprised and sad to have Arlan die. Again it was almost unbelievable how his death had occurred so near the time the dead tumor would have been removed. However, we, as a family, still felt peace.

We had witnessed many special blessings throughout his illness. One of those blessings was that throughout the eight and a half months of Arlan’s illness he never had any pain at all. Normally, with that type of tumor the pain should have been horrible. For him there had been no pain.

We were also blessed to always feel that God was watching over us and helping us. I am thankful that I was able to be there for Arlan when he most needed my help.