August 25, 2021
You are going right along and everything is going okay. Then, all of a sudden…Bam! Something happens. The something may be a decline in health, it may be an increased need of your time when you don’t have the time to give, the something may even be that your job is now requiring more of your time and energy.
You may be the “hands-on” caregiver. You may be the one that is making sure your loved one has a caregiver. You may be the one scheduling all of the appointments, taking care of the house and other chores along with your own stuff.
Are you a caregiver?
Are you a caregiver? Sometimes people do not view themselves as a caregiver if they are not providing the “hands-on” care. If you are seeing to the care of your loved one in any way, you are a caregiver. Being a caregiver will take a toll on you, your health and your relationships. Does that mean that you don’t do it? Of course not. It means that you need to be aware of the common stressors and strains that you will experience.
Being a caregiver is not easy. Being a caregiver can be rewarding. Being a caregiver can provide special and cherished times with your loved one. Being a caregiver can be maddening and fill you with anger, rage, resentment, guilt, and numbness. Being a caregiver can put you on autopilot. Being a caregiver can make you ignore your own health and needs.
I will share my experience with family caregiving for my mom
My mama was a smart, funny and encouraging person. She was a schoolteacher. She was independent. She loved God and her family. She was also stubborn and never complained. Her name was Alice and if she was the one that caught you doing something you were not supposed to be doing, she was the one that busted your butt. Growing up with her was fun and secure. My brother and I were taught how to think for ourselves, make decisions and accept the consequences from both our parents. I enjoyed talking with her on a new level as I grew up, graduated college and started my career as a pharmacist.
It was about 1988 or 1989 when I received a knock at my door one early morning. I had no idea who would be knocking at my door before 7:00 a.m. It was my mom, who lived an hour away from me. She was stopping by to tell me she was on her way to U.T. hospital for an MRI, that she may have had a stroke. My mind begins racing and I know I have to be at the pharmacy at 9:00. I took a quick shower and followed her to U.T. She was just matter of fact about the whole thing and I wanted answers. This is my mama! Of course, I knew we would not have the answers that day. She seemed fine and so I went on to work.
Two weeks later I go with her and daddy to the neurologist. When she came out, she handed me a pamphlet that stated Multiple Sclerosis. We had done a few neurological cases in pharmacy school, but MS was not one of them. Remember, this was pre-computer days. I did not know enough about MS but I would find out. I got permission to use the Medical Library at the hospital and did my research. Apparently, not a lot was known back then as all I could find about MS was one paragraph that basically stated “we don’t know and life expectancy was not thought to be affected.” That did not sit well with me and so I began to try and find out more information and mama let me go with her to her neurologists’ appointments. The neurologist was very good and helped me understand more and more. We would discuss treatment options and things to try.
Mama did well and kept on teaching. I met an amazing partner with 3 boys and we became a family. Life was good. In the early 1990’s mama began to have some concerning issues with numbness and weakness with her legs. She was more tired. By this time a new drug had been released and she began taking injections of Betaseron®. That helped for awhile and we all go back to our daily lives. The boys are in school and in sports. I am working 12 hour shifts and every other weekend.
Research before computers
The pharmacy became computerized in the early 1990’s and I could do some more research. Nothing like it is today, but I could access some papers form medical researchers. Inflammation and heat seemed to be the culprits demyelinating nerves of the brain and spinal column. I had a probable cause and now I am on to finding the ways to decrease inflammation in the body. We new about free radicals and inflammation damage when I was in pharmacy school, we just did not have medications to decrease them. Later, we learned that anti-oxidants would bind up the free radicals. But, the damn inflammation. It is very difficult for medications to cross the blood brain barrier (BBB). Yes, we could treat arthritis inflammation with non-steroidal anti-inflammatories (NSAIDs), but those medications did not seem to help the type of inflammation that MS patients experience. We continue with vitamins (for free radicals) and NSAIDs for her arthritis.
Early 2000s mama retired early and daddy kept working. She was using a cane and walker and soon she got a motorized scooter. Daddy had the house modified for a roll-in shower and he was determined to keep her at home. We all were, if possible. Mama began falling and it became evident that she would need someone at home with her. Daddy retired early. My brother and I were working and raising families. He was two hours away and I was an hour away. My parents were on a trip to see my brother and she had some kind of episode and was out of it, My brother is a physician and he took them to the hospital for tests. It appears she has had a ministroke. Mama has been a closet or rather bathroom smoker forever. Daddy finally quit smoking but he did the chewing tobacco and snuff for a long time before he finally quit all of it. She would not quit. I hated any and all smoking. It was very irritating to me and I would cough and cough and the smell was horrible too. Did she quit smoking? Nope. It took a little while longer and a diagnosis of beginning emphysema for that. But she did quit.
I needed caregiver support, but I didn’t know it
I am getting summoned down to the house more and seeing changes that I cannot blame only on the MS. Depression, and MS side effects here we go. The person that was my mama was no longer there. And, she would not be coming back. Mama is ready to divorce daddy and daddy doesn’t know how much more he can take. Oh hell. Now what? I suggest that daddy take her to a psychiatrist. Nope, he does not believe in that and is not going to take her. He told me that I could come and take her. I am stuck. I have to work and I have the boys and their stuff. My brother is building his solo practice and is raising his family. This shit show goes on for three months and it is getting bad. I make an appointment and somehow get daddy to take her. She is started on some anti-depressants and sleeping medication. Has she told anyone that she is not sleeping? No, of course not. When I would call, it was always “I’m fine or I am doing good,” I know that generation does not complain. I get it, I am just the kid and I am ten years old in their eyes. Never mind that I am a pharmacist. My brother experienced the same thing with them and he is a doctor. It was their business and they were fine. How do you suggest things to get them to act became the new game?
A couple of months after beginning her antidepressant medication and actually sleeping mama became more like her old self. There were things she could no longer do. Pay bills, do the taxes, do crossword puzzles (may have been due to some eyesight problems). You will find out as I did that, they are very good at covering things up and they will even help cover for each other. You may find them smiling and nodding more when they are covering up a hearing loss. They won’t like to talk on the phone or especially a cellphone (they really can’t hear very well.) The house is not as clean as it once was. The sinks or counter tops are dirty or have crumbs everywhere. They cannot see as well and they miss those things. Weird bruises? They may be off balance and bumping in to walls or things and maybe even falling.
I know, we chased a rabbit or two there. Anyway, mama needed to be in the hospital for a couple of days for an infusion of steroids. I was with her and stayed. The nurses were trying to get her to help them to move her up in the bed. I told them that she can’t she has MS and her legs don’t work. All they said was, “Oh, we don’t have her chart yet.” The hell you say, you mean you haven’t read it yet. I will be your worst nightmare at the hospital if you are not doing your job. I have a medical background and I know what should be going on and what should be happening. I know the questions to ask and I will be a pest.
I am not a honds-on family caregiver
It was during this hospital stay that I realized that I am not a “hands-on” caregiver. I love my mama more than anything and I will see to it that she has what she needs and who she needs to help her. It was eye opening to me that I could not do the “hands-on” stuff. I thought that I could do it all and help mama with whatever needed to be done. Maybe, I could do what needed to be done…if it had to be done, but it was not going to be easy for me and I was not good at it.
Seeing that what needs to be done gets done is what I am good at. Figuring out stuff is what I am good at. Figuring out who needs to do what is what I am good at. Basically, I am a great health care manager.
With that realization I try to get daddy to get some in-home care help. Nope, he is not having it. They do finally get home health a few times a week because she needed to have a catheter. She was mis-catheterized once. They placed the tubing vaginally instead of uretherally. Daddy took care of that problem and changed home health companies. Never be afraid to ask questions or demand competence.
Things are going smoothly once again. Mama and daddy are getting out and about. Coming for visits to my house and my brother’s house. It is 2005 by now and mama has been telling everyone that called that her birthday month is coming up. No, not day, her birthday month and what all she wants for presents. It was her 65th birthday July 16. We had a party for her at my house with dinner and cake. Presents too. It was a great day and she had fun.
A few weeks later, I am at work on a Sunday and I get a call from daddy. Now, mama does the calling and daddy will get on the phone to talk a little but he is not the one to make the calls. Already my hackles are up. My mind goes into emergency mode before he has said anything. He says, “Pat, mama’s kidneys have shut down and they are taking her to Parkwest hospital.” He will let me know something when he knows something. There is nothing to do so stay at work. I did stay at work knowing that we closed at six. I take off for the hospital after work and she is in the critical care unit (CCU). They will be using dialysis to take the load off of her system to see if her kidneys will start filtering again. My brother is there by the time I arrive. We get a plan to visit and all go home. Daddy comes back up on Monday and stays all day at the hospital. We get to visit 15 minutes every four hours. He won’t leave the hospital. I finally convince him to stay at my house as it is only 20 minutes away. He goes every day for the first visit and does not come home until the last visit is over. I visit on my off days and I close the pharmacy early on my work days so I can make that last visit of the night. She seems to be getting a little better and at night the staff is more lenient on letting my brother and me looking at the lab results and records.
It is in reading those records that you see what is really going on. What the reality may be unless things dramatically change for the better. It is the first time that I saw that my mama was in the late stages of MS. That she was really weak and in danger. I am in full compartmentalized health care mode. I am searching and researching for what to do. I know that a nephrologist is in charge, but I have to do something…I cannot just be still and wait. Of course, the nephrologist is doing all the right things, but still, I wonder. I find myself being the medical person, not the daughter. If I am the daughter, then I must feel all the feelings and emotions that will rise up. The thoughts of her not making it and leaving us. What would my daddy do? What would I do? Nope, not going there. Stuff it down, soldier on. Facts, figures, what to do if this does not work is where my focus is. I hate waiting! I hate not knowing! I can’t deal with the hurt, the scaredness, or helping my dad deal with losing his wife and my mom. I still have to work and be on top of my game there or someone could die. My boys still need to go to school, go to practice and games.
Mama took a turn for the worse
Here is where things get fuzzy as far as timing of things. Mama knew about what was going on in the world with Hurricane Katrina. She slept a lot and we were told that she may have to go on a ventilator so she would not have to work so hard to breathe. This was Friday night at the last visit and my dad, my brother and myself were there at that visit. We all had plans to meet there on Saturday. We get home and my dad goes to bed. About 15 minutes later, the phone rings and it is the hospital. Mama has coded. I go get daddy, call my brother and we head back to the hospital. I hit the button to CCU and enter. They try to get us to go into a room. I am not having any of that and daddy tells them he is going to stay with me. They get daddy a chair and I go to mama’s room. There is this big male nurse up on her bed just pounding on her chest with CPR. I see my mama’s face and I know that she is gone. I tell them to stop, she has had enough. They did and stated to let them get her cleaned up for us to visit with her. I go back and tell daddy. About that time my brother enters the CCU area. Our eyes lock and I shake my head no. So, we wait to see her. Daddy sits beside her and holds her hand. My brother is on the other side, standing beside the bed. I am across the room leaning on the air conditioner. I don’t know how I feel. I see her and I see daddy with her and for the first time in a long time, I can see that he truly did love her. It wasn’t just a “have to deal with this because we are married.” The things he said and the way he talked about her. Daddy was always good about jokingly pestering mama and aggravating her, but to actually speak about feelings and emotions, no way. I mean, they were still taking showers together when I was a senior in high school. He always called her Jake and she called him Heavy. If they were mad at each other, they would use Alice or Jack and do the silent treatment for a few days.
We met on Saturday or Sunday to do the obituary and set the time for the service. It was Labor Day weekend 2005. They had already pre-planned and pre-paid for their funerals. It was great. You sure do not feel like making all of those decisions. We had the receiving of friends and service on Labor Day evening and internment the next morning, I think. I get the days mixed up because she died shortly after midnight.
Here we are at the receiving of friends and quite a few people show up. We would talk about the past and the “trouble” she would cause and get in to. Reminisce and tell funny stories. Later on, when I went back to work, one of my techs who came to the funeral said, “I don’t know how to say this, but your mom’s funeral wasn’t sad.” She had never been to a funeral that wasn’t sad. No, it wasn’t a sad funeral. She was loved. She was missed and she is still missed. I have no doubt that she is in Heaven and she is fine. We are the ones that are sad and miss her.
I had begun grieving before mama died, but I didn’t know it.
I didn’t realize it at the time, but I had begun grieving the loss of my mama after her MS diagnosis and during her decline. We only had to deal with a hospital crisis for a week and I know the stress and anxiety that I dealt with regarding needing to be at the hospital, needing to be at work and needing to be at home for my family. You can do it all for a short time, but not for long. You will have to choose and that is okay. Someone or something is going to get slighted for a while. The big problems arise when the others in your life feel left out, ignored or let down. In other words, their needs are not being met and their tank is empty. Oh crap! You feel that your tank has been empty and you have nothing left to give. You can barely keep doing your job, much less what you need to do at your own home. Teamwork and sharing are a good thing. Taking time out for yourself to relax and recharge is a good thing.
I believe that what caused my mom’s death was either of two NSAID medications that were pulled from the market. Vioxx® and Bextra®. Can I prove it. No, but I do believe they hastened my mother’s death. I understand all about medications, approval and the last phase of testing is when it is released to the general public. Now we know to monitor kidney function earlier. I don’t want another family to have to go through what we went through.
My why – Why I do what I do?
I started my consulting business to help folks have options, to double check on their medications, and treatment plans. To prevent the preventable. Now we have the genetic testing to see if a medication will work for you or not. We know that the families of patients with chronic health conditions such as Alzheimer’s disease. Parkinson’s disease. MS, Migraine, Chronic pain, Fibromyalgia, Depression, and Arthritis need to be heard, understood and find things that work for them. When you are in the big middle of things, you cannot think logically you are just too stressed. Sometimes you have to make a decision based on what you would regret the least. Are you frustrated, angry and just plain mad? Maybe, I can help and there are solutions.
Imagine what your life and the life of your loved one would look like if you were a better equipped manager for your loved one’s health care needs. How much less stress you would be under. How much more energy you would have to do the things that you want to do. If you want a plan of action to improve your life and the life of your loved one let’s chat. I won’t know if I can help you unless we talk. If I am the right one for you, I will tell you and if I am not the right one for your needs, I will try to point you in the right direction.
865-684-8771 (leave a message if I am unable to answer)