Caregiving happens. Just like that! For millions of family caregivers, no warning, no training and no preparation come before the role of caregiver is assumed.
Ashley Hardway shares how she became a family caregiver for her mother in an instant. Seeing someone who was once strong and self-sufficient change overnight into someone who is practically the complete opposite is disconcerting, to say the least…and heartbreaking. Not only do family caregivers need to face and to deal with the medical condition at hand, but they must also deal with the emotional and psychological impact that deteriorating health have on both caregiver and caree.
Thank you, Ashley, for contributing your insights about taking on this very important role and about how you found the strength to carry on. I know you are joined by millions of other family caregivers across the globe.
My Experiences as a New Caregiver
Almost a year ago, my mom was an extremely hard-working, never-sit-down-and-chat woman of age seventy-seven. You had to practically lasso and hog tie her to get her to stop working. Then we found out that she had a blocked carotid artery that needed to be cleaned out. Upon going for further tests and an angioplasty, doctors also found out that she needed a triple bypass.
She had no real symptoms at the time. What she went in for were headaches. She went to her cardiologist every six months because we have a family history of blockages. Nothing was detected. But when she kept having headaches, she got a referral and went in to see her neurologist. He did several tests, one of which was (finally) a CT scan. While he found nothing wrong in her brain, he did detect the blocked artery!
Just the week before, mom was over at her sister’s house, who was seventy-two at the time. She had a tree that was overshadowing her driveway and she was afraid that someone could be hiding in wait for her as she came out of her house and walked toward the car. She lived alone and it was a valid concern, so off mom went with her chain saw in hand (that she had requested for Christmas one year) to cut down the tree. It was not a huge tree but it was not small either. She was successful. The reason I am sharing this with you is to show you just what kind of a woman my mom is. About six months before this, I found her up on the roof of our home trying to do some painting. She could not, for the life of her, understand why I was upset. After all, she had tied herself off with a rope so she would not fall! She did later admit to me that she might be getting too old for climbing on roofs because her legs and back were sore.
Mom has seldom in her life been sick. The only surgeries she had were a tonsillectomy in her twenties and a hysterectomy when she was forty-something. Now she was suffering with these headaches, which really were getting her down and keeping her from performing at her peak efficiency. Then we find out about the blockages and it was a game changer.
The surgeon’s suggestion was that she have the carotid artery done first and then wait a couple of weeks for the open heart. A couple of weeks? We asked why and he said it usually works out best that way. I was thinking that maybe it had something to do with putting it off too long or that he thought the blockages were severe enough to hurry up and get it done. Well, we went in for the first surgery and it was questionable at first whether mom was going to bounce back. Instead of two weeks, her recovery ended up taking more like four or five weeks. It really dampened her spirits.
Her cardiologist said that she had to have the bypass, it was mandatory. But when it came time to get her back for the surgery, she began to fall apart. She was so fearful that she was coming down with one illness after the other. One night she was convinced she had something seriously wrong with her back so I took her over to urgent care and it turned out to be a pulled muscle. This just was not the mom I knew. She previously never complained about pulled muscles because she was always doing something to push the envelope before this surgery. I really did not think we were going to make it to that surgery appointment. She was in full panic mode. But what was I to do? Just wait and see when the blockages were going cause a stroke or a heart attack? One of my siblings is deaf and the other lives in another state. They were coming for the surgery but they did not really understand what was going on with mom. None of us had ever seen her like this.
The day of the surgery, we got her to the hospital and we were sitting in the waiting area for them to call her back. When they came for her, she just sat there and she could not stand. I thought perhaps the anxiety had taken over and she was just weak. My aunt gave her the walker she brought, which had a seat that rolled. We sat her on it and as I was following the nurse and mom, she was dragging her feet. I said something about it to the nurse and all she said was, “Pick up your feet please.” I was running along behind with my daughter and mom started talking with very slurred speech and said, “I feel like I am talking funny.” I told the nurse, “There is something wrong!” They said, “Don’t worry, we will take care of her.” Ugh.
After I was allowed to go back and talk to her, she seemed fine. She had her I.V. in and was talking normally, but I knew something was not right. The nurse said, “Her blood pressure is fine and so is her EKG.” I was waiting for the surgeon to come and talk to us and before he could say anything, I asked him if the nurses told him what had happened when we brought her back. He said, “No, what?” When I told him, the look in his eyes could have set the world on fire! He canceled the surgery and was calling in the neurologist. By the grace of God, her brain was fine but she had experienced a mini stroke!
The surgery was rescheduled for two days later and I begged them to keep her in the hospital under their care because I was concerned and because I did not want her to go through all the stress of coming back up there again. The surgery took place and, this time, my mom turned into an even bigger stranger. My usually extremely loving, kind, and gentle mom was angry, extremely hurt and refused to get up and walk. She refused to look at the nurses and she was very angry at me when I tried to talk to her about it. I was frightened at the change in her. She was shutting herself off, she was weak. To top it off, she had a urinary tract infection, which we did not know about, that caused her to keep wetting the bed. One of the night nurses did not handle the situation well and hurt her by putting in a catheter wrong! It was catastrophic for mom and for me. I had been staying with her and planned to continue. This went on for a solid week.
I am a praying individual. I always pray because I believe in the power of prayer and of my almighty God and His Son Jesus Christ. So naturally, I turned to Him and asked for His help in this situation with mom. She is normally a very strong Christian lady but this had really hit her hard.
The physical therapists were there to walk her but she refused. The nurses told us that she was getting fluid in her lungs. I was pleading with her to walk but she would not listen. So I prayed. That afternoon, the surgeon’s assistant came in to talk to mom about the fluid in her lungs. She was an individual about thirty-five or so and had a patient demeanor. I had been praying all day. She sat down beside mom and told her that she knew she was hurt and upset and in pain. She then went on to tell her that if she got pneumonia, she would be in even greater pain still and that she had to walk. She explained about gravity’s ability to pull the fluids out of our lungs and that walking would really help. She even opened her computer to show mom a picture of her lungs before surgery and what they had taken that morning to show her the cloudiness that was fluid.
I know it was the Lord at work because she got up and walked with the assistant! And later that day she walked with me. The very next morning they took x-rays again and her lungs were clear. She was still not responding well to the nurses or to me but the Lord was able to get through to her to keep her from getting pneumonia. I was so relieved and began praising God.
She had stopped eating in the hospital as well so they began giving her Ensure and she hated it. I was doing my best to get her to eat but nothing seemed to appeal to her. People who came to visit were trying to bring her things to eat thinking it was the hospital food. Finally, they brought in some high calories Boost and she said it was okay, she could drink it. That was all she could tolerate, three Boosts a day. This continued when we came home.
On top of not eating, she could not seem to get rid of the urinary tract infection. They had her on antibiotics in the hospital and sent us home with some as well. She was so very weak and her balance was way off so the insurance company got us a walker and a potty chair. She was urinating frequently and she had diarrhea and could not make it in time most days. She had gone from a very strong woman full of vitality to someone I did not know in such a short time.
She had lost about twelve pounds in the hospital and was continuing to lose weight even on the Boost. The Boost had to be special-ordered online because instead of the three hundred-and-some calorie Boosts you get at the store, it was actually five hundred and thirty. I praised God for the Boost daily. But between not eating solid food and having constant diarrhea she lost thirty-five pounds in just a few months.
I was taking her to her primary doctor and he was treating her urinary tract infection. We then found that she had a bowel infection called C diff (Clostridium difficile) which is extremely hard to get rid of. He put her on an antibiotic for both and I thought we were okay. A few weeks later I went to her room to check on her: she was incoherent and I got panicky. After asking her a lot of questions which she did not answer, I decided to call an ambulance. She had a low grade fever but she really did not even know the date or her birthday even. After spending hours at the emergency room they finally admitted her. The infectious disease doctor was called in and the doctor on call was an Oncologist. They checked her blood to see if the infection had gotten into her blood but said that it took several days to get back. They started treating her with intravenous antibiotics but were not sure which, so it was sort of hit and miss. We were there a week again and I stayed with her. The diarrhea never stopped and the infection was not entirely gone when they released us. I was completely terrified to go back home with this now-shell-of-the-woman I grew up with and I had no medical training whatsoever.
The primary doctor wanted to see us within the week and when he checked her again, the infection was not gone. He finally decided it was time to send us to a specialist and he started with the urologist. After two visits with the urologist, he told us we had to get the bowel infection taken care of before he could help with the urinary tract infection. We had to ask for another referral and this took time. All the while she is not eating, she has very little balance, she is choking when she drinks anything, and she is no longer effectively communicating.
I have never in my life been a caregiver or in the medical field. I felt helpless but, by the grace of God, not hopeless because I trust in the God of hope.
Mom and I were in a strange place. I no longer knew what she was thinking; and she did not know what to tell me about how she felt. She had hardly ever been sick and I had never been a caregiver. Not only that, but being in a supplemental Medicare plan was like swimming through mud. We were assigned an advocate who I did turn to from time to time because the primary doctor was giving out referrals like they were gold. He did not want to part with them, which I am sure was due to the system somehow. I knew that no one could help us out of this situation but God, so I continued praying.
We did get another referral to a gastrointestinal doctor, someone we had not previously been to. The first visit was an immediate relief of sorts. He was kind and seemed interested. He even let us in on why she probably was choking on fluids, something which no other doctor could answer, for some reason. He said that since she had a mini stroke, her throat muscles are most likely damaged. They normally work in a synchronized way but when damaged (like by a stroke), it is like swallowing down the wrong pipe. Wow! I can not tell you how much this little bit of information helped my mind.
He was concerned with her lack of eating as well! This was one of my main concerns outside of the infections, of course. Oh, and by the way, the cardiologist said her heart and blood pressure and all were doing fine, and the surgeon said she was healing well. I forgot to mention that we took care of all that initially.
He wanted to do a endoscopy and, at first, my heart sank because I knew momma was not going to want to go back over to the hospital. She was completely opposed to any more hospital visits. Come to find out that this marvelous doctor had his own facilities right there in his office! Not to mention that we did not have to pay the large co-pay at the hospital, we only had to pay our co-pay and she could get the endoscopy right there! He had a wonderful nursing staff and when you walked through those doors, it was if you were stepping into the hospital operating room. He had an anesthesiologist working for him as well. I was impressed!
We found out she only had a few small ulcers, probably from her aspirin regime; and so, she went off of those for a few weeks. No reason she would not be eating. But he had given me an idea by telling me about the swallowing problem. I am wondering now if maybe the part of the brain that does taste might have been affected by the mini stroke as well? Or perhaps that it was her inability to swallow without the possibility of choking that is causing her to be afraid and it is psychosomatic?
We next scheduled a colonoscopy, something else he does right there in his own little operating room! How exciting is that? Some of you may think I am being silly, but some of you caregivers out there know how exciting it is to get encouragement like this. She was found to have diverticulitis, which is pockets in the colon that hold onto stool and can sometimes cause infection. I was amazed that the treatment for this was a tablespoon of Metamucil fiber after dinner every night along with three teaspoons of Fage (a brand name) yogurt to put back the good bacteria. He, of course, added an antibiotic to that and an orange powder medicine. Within a few days, her diarrhea had stopped, finally! When mom was tested again, her C diff and urinary tract infections were gone. However, she is scheduled to test again in the next couple of months. He did not send us away and forget about us!
When I call his office for help, I actually get a call back from the doctor himself. That may not seem strange for some of you but we live in a large city and that has ceased to be the norm for doctors around here. I asked him what will happen if the C diff comes back. He said, “Then we will give her a fecal transplant.” As if this is something that I hear everyday. He explained that it is a new treatment that has been working very well. You take the stool of a family member or from stool bank (did you know those existed?) and transplant it into the infected colon. The good bacterium from the healthy stool fights the battle and normally wins, sending that C diff running. Those were not his exact words; I am paraphrasing just a bit. This gives us hope to someday soon be infection-free and to get on with the process of healing in other ways.
Since we have been going to this doctor and he has been so kind and helpful, mom has actually started eating food and walking more. I know that it is God answering my prayers through a doctor who takes just a little bit more care with people. I believe knowing that her stomach is fine, her colon is fine, and what her swallowing problem was have helped to ease her mind. Not to mention getting rid of the diarrhea and urination problem she has had for months and months. I am so thankful to God for answering my prayers and thankful that this doctor actually cares enough to go above and beyond to help his patients.
Being a caregiver is not easy. This is one of the hardest things I have ever done in my life. It is not just the sickness and complications either. The first hurdle I had to jump over was to not get irritated at my mom, who had always been so strong and full of life. I know that sounds awful to some people but when someone changes overnight from the one who takes care of everyone to someone so helpless, it can be daunting. The child/parent relationship completely turned around and it was very difficult for me to adjust. Many times this psychological aspect can be the hardest to overcome.
The greatest advantage I have is a relationship with my precious Father in Heaven and His Son Jesus. The other advantage is great love. My mother has loved me forever and I freely give this love back to her. When it gets too difficult for me, I know it is not too difficult for Him. And He has led me to a group of godly friends that understand and support me daily by encouraging me and lifting us up to the Lord.
About the author
Always curious, Ashley Hardway is constantly learning and is passionate about sharing what she learns with others. Based in Houston, Texas, she loves to help families grow stronger, help their environments and communities, and keep moving forward! Check out @NannyLady on Twitter to connect and find out more.