11/18: Who is a Caregiver at the Age of 20? Advice From a Young Caregiver
November 18, 2015
FCA’s 30 Days of Caregiving blog features stories of caregiving as submitted by families across the country. Family caregivers are invited to send a story and a picture and share their experiences with others through FCA’s website.
FCA thanks all the caregiving families who have shared their stories of love, loss, bravery, triumphs, community, humor, and sadness. These stories and tips for coping truly help others.
I was 19 years old when my Mom was diagnosed with metastatic small cell lung cancer, which had a low survival rate. I was in my second semester of college so the idea of caregiving was not exactly making sense to me. Who is a caregiver at the age of 20? That’s for older people! However, little did I know it was for people of all ages. There are caregivers that are 16, 15, 17. Never in my wildest dreams did I think I would caregive at 20. I am going to be honest and blunt for anyone that is the same age as me and is caring for their single parent: It is not easy.
Most young adults that are 18 or older have a second parent they can lean on when tragedy strikes the other parent. However, that was not the case for me. I lived with my older sister and my single mother, whom both meant the world to me. When my mother got the news of her diagnosis she was very scared. I was very scared, too, because I had not even experienced two years of adulthood and this was happening right before my eyes. What was even more ironic was the fact that I was a smoker. Yes, a daughter who smoked cigarettes with her parent ended up with a parent who got lung cancer. I will admit, us smoking together didn’t help. However, after finding out my mother’s diagnosis you can bet that I quit smoking immediately. My mother stopped smoking, too, not only because she was stuck in a hospital, but me quitting was a motivator for her. She started her treatments which I had to make time for. If you are planning to caregive, be prepared to wake up very early in the morning because you might have to do the following:
- Give timely medications
- Arrange an appointment for loved one
To help you wake up in the morning, I highly recommend that you wake up an hour in advance so that you can get yourself ready and then help your loved one get ready. I did both at the same time and it was a huge mistake. My mom ended up falling because I didn’t think to do the two separately. She was okay; I was just annoyed at my ignorance (Ha!). Also, if you are a smoker, make sure you have mints or gum on you. Whenever my mother had lengthy appointments and I was nervous, I would always chew gum or eat a few mints. I would also take homework with me (tip for the college or high school student). Also, make sure you have something easy to make for dinner, otherwise you will (I promise you) make many delivery calls to the Chinese food place or pizza place, like I did for a couple of months. It’s best to microwave vegetables, that way if your loved one has cancer or Alzheimer’s, vegetables will fight the cancer cells and promote brain health.
Plus, sometimes during the appointments, doctors or nurses will prescribe your loved one medication (Duh, of course they do!). Look up side effects of those medications. A doctor prescribed my mother Dexamethasone (a steroid to make bones stronger and stabilize stomach issues) and we were not informed that the medicine makes my mother extremely grouchy (like picking up glass and throwing it grouchy). Point given, the more you know about medication side effects, the more you know what to expect from your loved one.
Ask your loved one how to pay bills. Just sit next to them while they are doing it, this way if something should happen (such as your loved one spending more than half a month in the hospital) you will know how to pay the bills. Understand what sources you have (your dad’s card, your card, that credit card you have, your sister’s card) so you know how much you have based on them (for example, my brother has $102.00 and my sister has $302.00). This way you know which source can be used to pay your electric bill (for example, Oh! my sister has $302.00! The electric bill is $117.00. She can pay it while I pay the water bill! Ta da! You are set financially). Thankfully before my mom spent more than half a month in the hospital in April, I learned how to pay the bills because I simply asked her. I asked her to show me how to do it, in case something happens. Instead of being angry or worried, it comforted her knowing that someone will be responsible if she needs it. So please know or try to figure out how to pay bills even if your loved one has it under control. You never know when something can strike.
Last but not least, on a financial note, ask your loved one how they will do their taxes. Huh? Tax handling? Yes, you might have to do their taxes. I did my mother’s taxes the wrong way, trust me. Ask your loved one how to do their taxes. Long story short, I had to amend my taxes and my sister’s taxes. If they want an extension it’s easy. Just go on the IRS website and file the form either electronically or by printing and mailing. If your parent owes something, send the extension to the North Carolina address. If your parent doesn’t owe anything (more than likely) send the extension to the Texas address. If you sent the extension to the wrong state (like me) that’s okay because the state will notify the correct state. Make sure when you send your extension it is mail certified before April 15th and keep that receipt for your loved one. This way, if the IRS says, “Oh, we didn’t receive it”, you can say, “Yes, you did. I have the receipt with the time I sent it and the time you should have received it.” This way the IRS can’t take advantage of your situation.
There are financial monsters out there. Always write down confirmation numbers, the time you paid a bill, any information to any transaction. Keep a notebook for these transactions. Then, whenever your loved one comes back, you can easily update them with whatever it is you did and if you screwed-up anything they can find the source and fix it. If your loved one says “don’t do anything with them,” send out an extension anyway because it will not hurt to extend the time of their taxes and they will not owe any fines if you send out an extension.
Finally, talk to your loved one about their final decisions. You are probably thinking, “Oh, no. I can’t do that.” Yes you can. It is easy. Just simply bring it up. Don’t start out with “Oh hey, how do you want to die?” No. Just ask, “Hey, I am just curious, if you ever needed life support, would you want it? I don’t (or do) think I would want it.” Bring it up as a casual conversation. They are more likely to answer the truth or simply go smoothly through the conversation. My mom responded like this, “You think I am going to die, don’t you?” I responded, “No, I am just curious because one day I might have to make this decision for you. It could be 20 years from now, I just want to know is all,” and she was calm and gave me her answers. Later that day, she said, “I think I should do a living will. Who knows what could happen,” and I was very proud of her taking that step. It’s not easy to sit in front of a computer screen answering possible final questions to your life. That’s acknowledging the fact you might pass on. Takes true bravery and I love her for that.
I am going to be honest with you, my fellow reader, you are going to cry. Yes, I already know that was a given, but you are probably thinking, “The more I cry about it, the more prepared I will be if my loved one goes.” No. Their passing hits you like a wave. It is unexpected. The doctors discovered another tumor in my mother’s spine and they placed her on a strong chemotherapy medicine that didn’t work very well with her. Long story short, the doctors placed her in hospice. My mom told me, “It’s okay, they are just placing me in it in case I need it.” My friends told me, “They are placing her in it because she is going to die.” At first, I told myself, I already knew she was going to pass. However, this was the moment where I made the world’s most irrational, yet rational decision of my life. After they told my mom (her oncologists) that she will no longer receive treatment, I couldn’t function. I just finished taking my exams. I couldn’t eat, sleep, nor have peace of mind. My mom was becoming more and more agitated as each day was coming up. Then, I moved out. Yes, I moved out. Why would a caregiver move out? Because my older sister was handling the pressure better than me. I still paid the bills at the apartment and visited my mom, who asked me, “Was it that bad here?” I replied, “No, I just can’t watch you go.” I burst into tears and she gave me a hug and said, “I understand. Do what you need to do.”
If you have another sister, brother, cousin (whoever is close enough to move in) who can take on your loved one while you are struggling mentally and physically, by all means take the opportunity. My mental state got so bad to the point where I thought about harming my loved one, then myself. This is not okay. If you feel that you are going to harm your loved one, do what is best. Move out if you feel your loved one will still be safe. If not, then find another resource as soon as possible. Contact mental health services if you have to. By all means do not harm your loved one. I don’t think I would have harmed her; I just didn’t want to take the chance.
Finally, anticipatory grief appears. You have an expression that is shocked. Is there such a thing? Yes there is, and no one told me. Anticipatory grief is when you feel your loved one is going to pass on and you are just crying at anything that reminds you of them or you look at past photos or watch videos that remind you of your loved one and can’t help but just cry and cry. This is normal, and can last up to a month, maybe even two years. Just let your tears flow and whatever you do, don’t hold it in. It will eat you alive. Just let your emotions out and eventually you will be okay. Then, at some point, your loved one will go. If you are able to see your loved one pass on, do it. The more you expose yourself to your loved one being gone, the more you will pass through the stage of denial. Mind you, you might still experience denial, but it can be shortened if you try as much as you can to comprehend that your loved one is gone.
Also, surround yourself with friends and don’t make any rash decisions unless it is financial. Move in with a roommate or with a relative, and involve family members as much as you can. If you don’t have family available, friends are just as good. At this point, the rest of the details are for you to make. My mom passed away on July 12, 2015 at 2:40 a.m. I still went to work that day, and I don’t know how. If you feel working will help you, go ahead and do it. Some people might see it as selfish; I see it as constructive grieving.
Last but not least, when you are grieving, keep in mind all of the good things you are surrounded with. I have a wonderful fiancé, sisters that still love me, my grandmother’s dog, anything. <3 Hang in there, you will make it. If you need any advice, I am MORE THAN HAPPY to help. It can be anything, such as, “Is constipation a normal stress response?” Absolutely. As a post-caregiver, I know. My email is firstname.lastname@example.org. Please, don’t be afraid to talk to me. I am a good listener and talker (I wrote a novel here). Take care. 🙂