The Do’s and Don’t of Caregiving: Lessons Learned

There’s no doubt about it, caregiving can be hard work. News stories like this just make me angry. Leaving patients unattended, without food, water or meds or not keeping them clean is unacceptable. And leaving them like that for weeks or months and causing their death is unconscionable. Stories like that, just reinforce my decision to take good care of Dear Son. I don’t ever want him to suffer in any way. There is great peace in knowing that you take good care of someone and great rewards as well.

Beneath that hard work though, are some wonderful benefits. In order to be successful, you have to put yourself in the patient’s shoes, set a standard of care and decide on your goals. By this I mean, you have to imagine what it’s like as if you were the patient. No one wants to sit in a wet bed or not have clean sheets on the bed. You have to feed them like you would feed yourself, at regular intervals and healthy food. Setting a standard of care means deciding what is an acceptable level of care. Do you want to give adequate care or do you want to give great care? Adequate care is meeting the basics, giving meds, meals and keeping them clean. Think of a hospital. They meet the basics by giving meds within certain parameters, giving them meals and keeping them changed. What they don’t do very well, is doing this with any sense of urgency. This is not a put down but a fact; it’s the result of having too many patients and not enough staff. I know because I stay there. I won’t ever let Dear Son stay in the hospital without myself or Dad there 24/7. It’s not an option. When I had back issues and needed the staff to change Dear Son’s diaper, the wait times could be staggering. More often than not, the average wait time was thirty minutes. Dear Son was older and required more than one person so they had to wait until two or three people were available. A long wait was about an hour. Thankfully, I stayed with Dear Son and am able to change his diaper, give meds and get his food at regular intervals so he’s not hungry. I try to do things in a timely manner, so he doesn’t have to wait. I create rules so that I give meds within a certain amount of time every day, not just some days. As he is able to do less, I have to do more.

The joys of caregiving are many. It’s a good feeling to take care of someone you love. It’s good to know that you keep them healthy, you keep them warm, you keep them fed and clean. It’s rewarding when you do it with love. The best part is when you make them feel like a million bucks by making it fun. Making them smile, making them happy or just knowing that you got their meds on time so they wouldn’t suffer or have seizures is huge. Yes, you can hire out the tasks but what you can always be guaranteed is that they will do the tasks the way you would want it done. There are some good caregivers but also some average ones.

Many years ago, I had to make a choice. As Dear Son’s medical needs changed, the amount and times of the medication increased. For a while, twice a day meds, or every twelve hours was fine. Soon it went to three times a day and then four times a day. Around the time of those changes, I was working a full time corporate job. My job had just ended, along with several hundred others and I was actively pursing full time employment, as a divorced single mother. Finding child care was a nightmare since most daycares wouldn’t take severely disabled children. I soon found a job in another city. I turned that down because trying to move to a new city and find care would be challenging. As I pursued full time employment, I soon learned that in order to work, I’d have to have some nursing care in the home. I had been fortunate in my previous full time job, that I was fairly close to work but my new options would require a drive of an hour or more. While I could hire this out, I’d have to be sure that they would show up. They’d have to feed him breakfast, get his meds and get him off to school. Same at dinner time. As I thought about it, I would need someone to give him all three meals (nurses for breakfast and dinner and school nurse for lunch). In addition, even if this worked out, what happened when they didn’t show up? Or what happened if they didn’t feed him or give him his meds? You could never be sure.

Over time, I slowly realized what I could live with and what I could not. It was not going to be o.k. to farm out all of his meals and caretaking to other people. I just couldn’t be stressed out worrying that he wouldn’t be fed or that he didn’t get his meds. He was too important to me to do that. So I made the decision to take care of him and work part time. This meant a drastic pay cut. It was not an easy decision and it took a while. There were many times when I longed to be working full time and have a career, have better healthcare and have all of the things that came with. My sense of worth was challenged. It was quite humbling as well. I had defined myself for so long by what I did and now, well, what I did, didn’t seem very important to anyone but Dear Son. When I made sacrifices, some people just didn’t understand. How do you explain the fact that you didn’t have back surgery because you were taking care of a child who was disabled and needed you more? Along with it, came tremendous sacrifices to do that. I went from driving a new luxury car to an older, used car. I went from wearing designer clothes to wearing my clothes until they wore out. I went from having a closet full of shoes to wearing shoes for longer periods of time. But that’s just material things. I gained more time. More time to learn how to cook. More time to learn new things. Years later, I started a business. While I love it, I can't work as much as I'd like since I care for Dear Son. It hasn’t all been bad though, just different. I would also say that I am pretty happy right now although I still miss working full time. My passion for fashion and nice things never waned and I still love them today but my priorities are different. I like to think that they are just simmering on the back burner for now, ready to take center stage at a later chapter in my life.

A lot of people say they want the best for their children. What they really mean is that they want the best for their children, providing they don’t have to give up a lot or do a lot of things differently. When faced with the level of care Dear Son required, I had to give up a lot. While I realized that in caring for Dear Son I was putting everything on the line, it was the only decision I could really live with. This way, I knew that I could give him the love and care he needed. He wouldn’t be hungry but he would be well fed. He’d get his seizure meds on time. He would be changed when needed and be kept clean. All of this comes with costs. Caregivers health often take a beating when they care for their loved ones. It’s hard to take care of yourself when you are up a lot at night. If you have ever cared for a sick family member you know what it’s like. The first day, you’ll do anything for them. The second day it’s getting old and the third day, well, they had better be feeling better so the can get whatever they need themselves. For caregivers, there aren’t any vacations. Those med times roll around pretty quick after a while.

But caregiving is very rewarding. Along the way, I’ve learned some things that I can do to make it easier:

1) If you want to take great care of them, you also have to take good care of yourself. Pick something you do that makes you feel good. For me, that is my nails.
2) Get your energy from the foods you eat. When you are consistently sleep deprived, it is very exhausting. Since a full night’s sleep without interruption is something I only get twice a month, I had to have a Plan B. You have to eat foods that give you energy. This means fruits and vegetables. Vegetables provide the most energy and I try to eat high quality, organic vegetables as much as possible. When you eat well, your energy levels increase tenfold.
3) Try to get some exercise. Dear Son loves to go for a walk. We typically walked eight months of the year, from March to November, most days of the week. I can’t walk as much now since I need a knee replacement but we do try to get out.
4) Get in touch with nature. We have a trail near the golf course that runs along the river. The river is spectacular and we always see a lot of different birds and animals along the way. The change of seasons brings out different flowering trees and just seasonal changes in general. It always inspiring. Even simple things, like opening the window in the bedroom to hear the rain is wonderful. There is nothing Dear Son loves more than when I open the window in the morning and he can hear the birdies singing.
5) Create routines and follow them. I have daily and weekly routines. You have to. When you are tired, you just follow the routine and everything will get done. The great part is that if you are sick, someone can pick up and take over.
6) Have an emergency sheet, a medication sheet and a plan. You have to have an emergency sheet that lists all of the important information on the patients, including diagnosis, medications and what they can and can not do at baseline (meaning when they are healthy). You also need to have a medication sheet with all of the medications and doses listed for each hour of the day. This is critical. I keep this sheet on the refrigerator with a magnet and take it off and use it each time I give meds. That way, I don’t make a mistake. It’s easy to make mistakes when you are tired, even if you give the same meds every day. I give twelve different meds administered in varying amounts, every six hours.
7) Ask for help and/or accept help. This is by far the hardest part. Dear Son’s Dad and I have different tasks that we do to care for Dear Son. We each do different tasks and we respect the job the other one has done. While I do the bulk of the caregiving, Dear Son’s Dad takes him regularly so I can get some sleep. You have to work together. What’s harder is accepting help from others. I almost never do that but it’s something I need to work on.
8) Enjoy life. Life doesn’t have to stop when you take care of someone you love. It’s actually part of a good life. Learn to enjoy life regardless of people’s disabilities. There are ways to do it, it just might be a little different than what you are used to. Take the time to make things beautiful for you and for them. Make a beautiful tablescape for your lunch. It’s the little things that go a long way.
9) Know when to stop. As Dear Son’s disease has progressed, he’s not able to do as much as he once did. You have to learn to accept that but also to adjust life in general. I can’t expect him to go to school like he once did or do as many things as he could before. He just doesn’t have the energy.
10) Go with the flow. This is huge and not always very easy. There are times when I have my day planned: get him off to school, do my morning cleaning tasks, workout, get dressed and then off to work. That’s what is supposed to happen. Sometimes, he’d have a seizure or the bus would be late due to snow or school would be called off. You can not be stressed over this or you will get sick. You have to go with the flow.
11) Be flexible. Early on, I learned that I couldn’t do everything the way I used to. For example, before Dear Son was born, I used to exercise at a gym and loved it. Once he came along, I realized I didn’t have the time to hire a babysitter, travel to and from the gym and then exercise. I didn’t want to leave him and it just didn’t work time wise. It took me a long time before I realized that I could get my workout in other ways-by taking him for long walks or exercising at home. It sounds simple but sometimes we get so caught up in doing things a certain way, that we think it’s the only way we can do it.
12) Allow more time. I have routines in place to get him off to school in the morning. I have time built in for each task so that if something unexpected comes up whether it’s a seizure or that he went to bathroom after he was all dressed and in his wheelchair, I can take the time to take care of the issue and not be stressed. You can’t have everything timed out to the minute with these kids. For example, I allow one hour and fifteen minutes to get him off to school in the morning. I allow fifteen minutes for me to put in my contacts, unload the dishwasher, open the blinds, etc,. fifteen minutes to get and administer meds, fifteen minutes to get him dressed, fifteen minutes to get him transferred with the hoyer lift and into his chair and fifteen minutes to brush his teeth, wash his face and general grooming. Each task doesn’t take fifteen minutes, but allowing myself this amount of time helps me feel less stress if something goes awry.
13) Embrace your goals and know your values. I firmly believe that we need to take care of those less fortunate than ourselves. I think that caring for those with disabilities is critical and that they should have the same rights as everyone else-the right to a bathroom in a public place, the same rights as all of your other children, etc. My pet peeve is when families put a disabled child in a home, because they couldn’t care for them and keep the able bodied kids at home. Why does the disabled child draw the short end of the stick when it comes to keeping them at home? Because they were more work? No. We need to make it a priority as a society to make it easier to keep kids at home by having daycare so parents can work. Believing that these kids deserve the best helps guide me in my everyday caregiving with my Dear Son. I want to show him how much he is loved, every day. I also want to break down the barriers and help give people answers to make caring for the patients at home, easier.
14) Know your chapter in life. Understand and appreciate where you are at and enjoy it. Before we went on Dear Son’s Make a Wish trip, I decided it would be the best trip ever. I figured it would be the last time he would be well enough to do anything. It might be the last time for family photos, etc. As a result, I was determined to have nothing but great memories from our trip. And we did! I also know that when Dear Son’s time comes, that I can look back at this chapter in my life and know that it was a wonderful ride. His disabilities didn’t define me any more than they defined him. Instead, it was the highlight of my life. I expect that when he dies, I will have a few chapters of mourning and then some good chapters after that. He will always be with me though and never forgotten.

And finally, the biggest thing for me is living without regrets. Not only does it feel good to give him good care, to love him and to see him happy but it’s a great feeling to know that when I am old, that I can look back on this time and know that I gave him everything I had. I will have no regrets. It’s what I live for. That and Dear Son’s beautiful smile. As a mother, you never get tired of seeing your children happy.