A Day in the Life of a Caregiver

You’ve survived another weekend but better yet you’re daughter who is afflicted with Lyme disease survived another weekend. Now it’s time to get up early and get dressed to go to the Lyme clinic that you’ve been at for 16 weeks now. You know the routine well and so does your daughter. You get her morning pills for the day, all ten – some supplements and some medications – and you give them to her as soon as she wakes up. You then proceed to fix her breakfast, a healthy shake because that is all she can get down in the mornings because of her extreme nausea. She has lost 15 lbs. since the treatment started. You are not surprised this has happened – the doctor and staff warned you before you started her on the treatment that she would get worse before she got better. And you have talked and seen at least 10 other patients who went through the same thing and who are much better now. They got a lot worse before they got better.

It was an encouragement and by going to the workshops to hear the doctor talk about what is going on and why and the science behind what he is doing you feel comforted in knowing that you are on the right track in getting your daughter well. But the days are hard as there is so much to keep up with and you are so tired yourself that you can hardly make it up the stairs at night to go to bed. You are the caregiver. You have to be on top of things whether you feel like it or not because your child’s life is in the balance. Worse yet, you and only a handful of people who really understand what is going on and how serious her condition really is. You don’t want to tell your friends and family everything because you know it would worry them even more and you know they won’t understand what you’re doing. They have given you advice many times and feel confident you should take it. Although you do have some friends and family that support you no matter what and for those you are eternally thankful. But with others you’ve been made to feel incompetent and that you don’t know what you are doing. But you know they just don’t understand, and furthermore, can’t comprehend how someone could be so sick and why you would use natural medicine to get your child well when they think medication and a psychiatrist is all she needs. By now you know the drill, and you keep your mouth shut. You only tell friends and family the minimum just enough to appease them so they will leave you alone and give you peace. Peace ah… that is all you want right now…peace.

But you can’t concern yourself with that because it’s time to take your daughter to the clinic for her 1.5-2 hour IV drip and after that she has 30 minutes until it’s time for her colonic and during that time she needs to eat again if you can get her to as her appetite is poor. She is nauseated 24/7, just another symptom of all that is wrong with your daughter and there are multiple things.

The colonics are critical to getting well. Most people don’t even know what a colonic is (the very ones giving you advice), but they are extremely important as they help get the toxins out of your body that the IV’s are pulling out of your cells and tissues.

You really need to go run some errands but you can’t go now because you have to stay with your daughter at the clinic just in case something goes wrong you want to be there. Oh, after the drip it will be time for more medication and supplements so you have to remember to take them with you to the clinic.

After her colonic, you make dinner and give her more pills. Then one and a half hours after she eats it will be time for another supplement as this one has to be at least one and a half hours away from food. But it’s not just one pill it’s 8-10 depending on how she feels. You learn how to gage what is happening based on how she feels and by that you know how much to give and this goes for supplements and medication. In total your daughter takes 85 pills a day – all of which you have to keep up with and make sure she takes because her brain is so toxic she can’t remember or think clearly. You also have to be sure to not run out and keep everything reordered in a timely fashion along with scheduling the weekly IV’s and colonics and on occasion PET scans. The doctor and/or nurse appointments are scheduled for you but you have to be sure they don’t coincide with other appointments.

Then there are the weekly blood and sometimes urine lab tests that have to be done. On occasion there are extra things that are required for instance, if she has to have a PICC line. This has to be scheduled around her IV’s and colonics and other doctor or nurse appointments. After her PICC line is placed she has to have an x-ray of her chest before her next IV so they can be sure it has been placed in the right spot. This also has to be scheduled.

Lyme patients often have low iron and sometimes it can get so low they have to have iron infusions. It can be anywhere from one to four – these also have to be scheduled and worked around her other appointments. You also have to see the iron infusion doctor when you have these done. This also is another appointment that has to be scheduled and worked around everything else.

At the end of the day you and your daughter are tired and you hope the night will go well so you both can get a good night’s sleep. (Well at least you hope you can so you can have energy for the next day. You’re daughter rarely sleeps well even with medication.) You both are still recovering from some bad episodes that your daughter had last week when you both were up till 5 am for 4 nights straight.

Lyme is insidious it shows you no mercy and if it decides it’s going to cause problems it will – it cares not what time of day it is. It laughs while you struggle.

Just one more day, you tell your daughter, one more day and maybe it will be better as she doesn’t know if she can take it anymore. The pain, the flu-like symptoms, the anxiety and panic attacks, the emotional meltdowns that go with having to just live when you really want to die. As a mother, the caretaker, you sometimes want to collapse in the pain and sorrow of having to see your child suffer like this. No one you think should have to suffer like this! NO ONE! But you know you can’t fall apart you have to be strong for your child, you have to be positive – failure is not an option! You know in your heart of hearts that your child WILL get well you just have to convince her of that. And in the meantime, keep it together yourself.

More pills are required before sleep, so you give them to her. She is so tired of taking pills and gets so irritable with you. She hates the way her life is – she is miserable and has been so for so long she takes things out on you, her mother – her caregiver. You know she is not herself and you can’t blame her because you would do the same if you were her. A person can only take so much. But it gets old. You get belittled by family, criticized by friends and yelled at by your daughter, the one you’re giving your all to take care of and all you want and need is support. Support you think is not much to ask, not much to give. But you don’t complain because what really matters is getting your daughter well and so you go to bed, go to sleep and wake up the next morning and do it all over again. And you are happy to do it because you’re a mother, a caregiver and you’re doing it out of love.

The next time you meet someone who is taking care of a chronically ill loved one, ask how THEY are doing (as few people ever do), give them a hug and a word of encouragement. You will never know what that will mean to them.