Please note, I just started this blog on August 14, 2017. I will continue to update it daily so there will be new information coming all the time.
Ok, so this is based on my experiences. A little background about my dad…he’s one tough cookie. The average “lifespan,” with somebody who has Multiple Myeloma is 3-5 years but some people have lived as long as twenty. The main cause of death isn’t the disease itself but things that attack the immune system since the chemo and other medications weaken it. Pneumonia is the most common one. He has had pneumonia TWICE and both times walked out of the hospital and refused to use a wheelchair which is pretty much the rule of every hospital known to man. I hope that sort of gives you an idea of how my dad is. He won’t go to the hospital unless it won’t stop bleeding lol. If you’ve seen Monty Python he’s a “it’s just a flesh wound,” sort of guy. He’s very private, he doesn’t talk about his emotions, he’s not open to communicating what’s wrong, so as a caretaker I have to be in tune with that. I have to be his voice when he won’t tell his oncologist or doctors what’s really happening. I have to essentially read his mind. It’s not easy but you learn how to do it. So,
- You will need to step up to the plate and be the voice of your loved one. Do not be afraid to ask questions, put your foot down, follow your gut instinct when you’re at the hospital or doctors office. If something doesn’t feel right, it probably isn’t. Doctors make mistakes, quite often mind you. Go to wikipedia, research whatever medications your loved one is taking, ask questions and the best person to ask is usually NOT the doctor, ask the nurses and the physicians assistants. Nine times out of ten they will know more about your loved ones condition than the doctor and will be willing to take the time to explain the situation. This isn’t the case all the time. There are some great doctors who will but from my experience, most oncology offices are like carnival rides, get a ticket, get on the ride, get off and get the next person on.
- Develop relationships with people who are treating your patient (Sometimes I will use the word “patient,” it’s not to sound cold or indifferent. It’s just simpler to type.) Normally there is always at least one person who is a good “go to.” Seek that person out, find out if they have a direct extension where they work and ask them if it would be ok if you call them if you have questions. If they give you an awkward look, or seem uncomfortable, or just straight up say “no,” then say “who CAN I call if I need help?” 911 is NOT a suitable response. It is your job as a caregiver to seek out this information. Sometimes it takes a lot of legwork. The American Cancer Society is a great help there as well and I have put their link on the right side of my blog.
- Do not become discouraged. Period. I say that like it’s no big deal but it is and you will become discouraged. You will have terrible days. You will become depressed, confused, tired, angry at your patient or loved one (trust me, you’ll see it in my blogs soon enough I’m sure lol) and it is important to remember that you are facing one of the most difficult challenges of your entire life. By far, what you are experiencing, what you are going through at this very moment and the days, weeks, months or even years to come will be more difficult than you can imagine. I am not going to sugar coat this. I am sorry to say, it’s not going to be easy but you can manage it. That’s why I’m writing this blog, to give my advice, to tell my stories of how I have managed it in hopes that maybe something I say, even if it’s just one little shred of a sentence might help you along your journey. With that, I am still experiencing it. I am going through it everyday and sharing my stories continually help me as well. I gain insight and understanding by just venting my frustrations, my fears, as well as my accomplishments and my triumphs. You will of course have those too.
- Remember who you are. I personally and most caregivers will agree, over time forget what they liked to do before they became a caregiver. Write down your hobbies, what makes you happy, what you like to do WITHOUT your patient or loved one. What do you like to do alone or with friends that does not include your loved one…at least once a week you will need to get out of the house or hospital and do one of those things. Most caregivers become so wrapped up, so engaged, so overwhelmed with death, dying, chemo, radiation, doctors, appointments that it takes over their lives. In essence, you are just as much a patient as the patient you care for. You cannot take care of somebody if you cannot take care of yourself. This is by far the most important aspect of being a caregiver. As much as I hate to say it, sometimes you might need to keep this to yourself. Some patients will feel neglected or jealous when they see you out enjoying yourself and will not understand how you can “abandon,” them during their time of need. Many will support you, some will not. My dad does not need me most of the time. I see myself as one who mostly lurks in the shadows…his biggest issue is what is called chemo fog (I’ll write a blog on that later. You should also google it.) He’ll forget to turn off the oven or forget about an appointment, forget to lock the doors at night, forget little things and sometimes go grocery shopping, get there, only to forget why he went there in the first place and he’s a very proud man. I stay up late and after he goes to bed I go around and double check everything that should be taken care of because I don’t want him thinking he’s making any mistakes. One day I will confront him about it but now is not that time. I’m getting off subject. You need to make sure you take care of yourself, the Cancer Caregiver Support Group that I linked over to the right side of the page is also very helpful, at least for me. If you go to church, see if they have a small group you can join where you can discuss it openly, check your area online to see if there are any caregiver support groups you can physically go to, I know there is one in my area. I cannot stress this one enough.
- It’s probably going to hurt you financially so think outside of the box. I am a part time student at the University of Central Florida so luckily I get pell grants and other financial aid from the University as well as student loans (uuuughhh I’m gonna be in debt forever…) but it’s my choice not to work. I could probably get a part time job that brings in a few bucks here and there but instead I actually go to estate sales and garage sales, get things very cheap and resell them online. It doesn’t make me a ton of money but it probably brings in about as much as a rinky dink part time job. Anyways, my dad is lucky enough to have worked for Disney for about 20 years so he has a pension and social security disability. It helps. I’ll say that he LOVES calling cancer organizations, investigating online, researching grants and anything he can do to get the costs of his treatment down and I’ll be honest, it has paid off. Not only financially – we’re still hurting, I sold my car, and used my financial aid to buy a clunker to get rid of my car payment, we sold our house and bought a much less expensive one to lower the mortgage, (the area also has better health systems so I can’t say it was completely just for that) we scrimp and we save as best we can. But, we also reached out to our county government and we were given a grant of 1,000 dollars to put towards our utility bills. Yup, 1k to pay for water and electric…All we had to do? Fax them some of his medical bills, and then fax them our utility bills every month. That’s it! Once the 1k was depleted we were on our own but we stretched it out for almost a year! Call, call, call! Get online and investigate, network if you can, ask doctors, nurses, the ACA, look into the Hope Lodge, free rides to cancer treatment centers, there is SO much out there but you have to be willing to put forth the effort. I know it’s easier said than done. Depending on your insurance, see if you have a Cancer Care Advocate. Many times you might have one available to you, and they can actually do some of that legwork for you. The bottom line is DO. NOT. BE. TOO. PROUD. TO. ASK. The other positive result for my dad is that it gives him a sense of purpose. He doesn’t like feeling that his life is already over. The chemo keeps him fatigued, achy, and often irritable. There’s obviously an emotional toll that comes along with having cancer so having this task gives him something to do that’s tangible. Try to find things for your loved one to do if they don’t have anything. Depression is kryptonite to a cancer patient.
- It is OKAY NOT TO LIKE THE TERM CAREGIVER! In one of my cancer caregiver support groups, this issue comes up quite a bit. Caregivers feel guilty being called a caregiver as they don’t feel that they do enough to be called one. This was my response to an individual in one of the groups. I’m going to remove her name and some specific information but the “guts,” of the conversation are really the main focus.
Ooooh boy do I have something to say to you (name redacted)..my dad is the most stubborn, most hard headed, most arggggg man in the world. I’m 32, he’s 63 and I’m pretty sure he was born in the wrong decade. He’s like one of those WWII vets that can do anything and everything on his own and will never, ever accept help from anybody. Truth be told, he can. He doesn’t really need my help most of the time but here’s what he does need. He needs somebody to vent to. He needs somebody around so he doesn’t get lonely. He needs an “emotional punching bag,” to which I am not exactly happy about but I take it because if he didn’t I know he would internalize all of it and it would not be good for him mentally and emotionally. He would overdo it and I can tell when he does so I’ll sort of jump in and not ask if he needs help, I just sort of…start helping out with stuff…lawn work, taking in groceries that I know are too heavy that he shouldn’t lift. I clean the litter box before he can because I know his immune system is shot. He refuses to let me call myself a caregiver so a lot of times I just call myself his son. I live with him because I’m a college student and it takes the financial burden off of me so I can spend more time on my studies instead of having to work as much…I make excuses so that in his eyes he’s taking care of me and that gives him purpose. I’m his “battle buddy,” against cancer, I’m his “comrade in arms,” I’m his “helper,” when he needs it or his “driver,” if he needs to be sedated and they won’t let him drive home. Am I his caregiver, you bet your ass I am. Am I allowed to call myself one? Nope. But, would he be better off without me? Absolutely not. A caregiver is more than somebody who wipes somebody else’s ass because they can’t. We recently had to evacuate because of hurricane Irma and had to take a ton of stuff with us to Orlando. Do you think he could’ve done all that on his own? No way. I mean, could he have? Sure, do you think it would’ve put more stress on his body and shortened his life because of it? Maybe, probably. Would it have exhausted him to the point where he may not have been able to ride out the storm over at my grandparents and also keep an eye on them since they’re octogenarians and make it more difficult to keep an eye on them since he was especially worried about them? Absolutely. The term “caregiver,” is a very broad term. You’re absolutely right. He’s not your patient, he’s your loved one. A patient is somebody under the care of a medical professional which you are not. A caregiver is somebody who cares for a loved one in a time of need, which you are doing. You are caring for a loved one during a time of need, ergo, you are a caregiver. Call it what you may, the definition is irrelevant. A few months ago I was asked to be part of a study or whatever where they paid me to do a phone interview about being a caregiver for somebody with multiple myeloma and the last question they asked me was “What do you think we as medical professionals should change for caregivers?” My immediate response “Stop calling us caregivers. We take offense to the term and so do the people we “take care of,” as we don’t take care of the person we love. We offer assistance, we go out of our way to do what needs to be done, we do what some family members can’t or won’t. We are their battle buddies against cancer, we are their comrades, we are so much more than what a single word can describe and the medical community needs to be more understanding of that. The medical community needs to treat caregivers as patients just as much as they treat the cancer patients themselves. We hurt, we anguish, we get depressed, we need help too as the journey we take is painful and takes a toll on us whether we are incredibly involved or hardly involved. Our loved ones take offense to the term as they don’t want to be cared for, they want their independence and they deserve to be treated as individuals who are capable of doing so much more without a specific term that denigrates their capacity to live their own lives.” I think they got the point as the interviewer didn’t say anything for about 30 seconds and maybe she was just taking notes or maybe she just didn’t know what to say but she followed up with “Oh, ok, wow. I didn’t think of it that way.” To again which I said “And that is exactly the problem. When a patient checks in somewhere with a caregiver, why not have somebody say oh, and who is with you? Oh, your son, wonderful, glad he’s here too! And leave it at that.” We know what we are and what we do. Don’t feel bad about terminology. It’s a word. That’s all it is. Just a word.
That’s all I have for now but I will continually update this as I think of more things.
Hang in there. You are never alone. Don’t hesitate to ask questions.