Welcome to the Main hub for Caregivers
Caregivers are THE best people in the world!
Being a caregiver is so vitally important. You are the rock, the strength, the support when we need you. You take all our stresses, fears and worries and pull them onto yourself. You sacrifice your own health for us to get well. There are no praises high enough to glorify how truly amazing I find caregivers. I love you all more than you could ever know. I had two wonderful caregivers when I was sick: Fish and Angel. They helped me immensely when I was sick and I have asked them for their help with this section for the first site.
Check out the advice section for more specific Caregiver advice, but a few tips that I have found useful are:
Always keep a bag in your car with everything you could possibly need. We found out first hand many times on my journey that to be prepared is always the best way to be, those boy scouts got that right!
So, keep extra medicines such as stomach, anti diarrheal, stool softeners, a thermometer, band aids and first aid crème, antibacterial wipes/liquid, gauze, and any other meds that could possibly be needed. Also put in extra clothes, comfortable shoes, a blanket (which mine is just sitting in the back seat), and snacks. This bag could come in handy for any kind of embarrassing situation or could be useful for a survivor in many ways. For instance, I got cold very easily, being in treatment in the summer, the air conditioner was always on everywhere but I was freezing, this blanket kept me warm so many times (thanks Kris’ Mom!).
The stomach gets hit hard with chemotherapy, one minute you feel fine, the next nauseous, one minute you’re running to the bathroom, the next you couldn’t go if they paid you! Always plan for the worst and hope for the best! I had issue with my muscles being very weak so I wore pajama pants and a zip up jacket a lot because they were easy to put on with little help. Always plan for the worst and hope for the best!
Other useful items would be plastic bags, a plastic bottle or cup that is light weight, lots of Chapstick or lip balm of choice, lotions, an eye mask to block out light if you get tired or especially if you are in the hospital, candy and gum to suck on or for snacking if you want to keep from having a full meal (try sugar free as it will keep your teeth in good shape!), also make sure you take your stuffed animal with you wherever you go. As you can see from my pics my Monkey is with me everywhere I go.
These are just a few things you may need but each will be different, if you are doing Radio Active Idoine treatments anything you wear will need to be thrown away, so head on over to Goodwill and pick yourself up some fun items that you don’t mind losing.
You are Amazing!
Again, I LOVE Caregivers! But there is so much that you need to understand for your own health and sanity. You must take care of yourself in order to be there for us. We love you too much to see you suffer!
Support Circle- Family and Friends
You are the second most important piece in a survivor’s life. You are their connection with their life before cancer. You are their way to open up and reach out to people they love when they are stuck in the hospital. They need you but you also have to understand that sometimes they are not able to handle seeing you. Please check with the caregiver to see if the survivor is up for company. It is nothing against you and they do want to see you. I cannot stress enough that being a survivor is hard. People who know me are probably surprised by that statement because it didn’t seem hard when they saw me but it was. It was very hard to go from a girl who could bounce around and smile all the time, who never left the house without make up. A girl who adapted to the Japanese ways of taking a shower every single day to a girl who couldn’t wash her hair for two weeks and was covered in bruises and a LOT of weight that wasn’t there before. Sometimes you just don’t feel like yourself and you want to be alone. Try to understand this and send a card instead. Phone calls are another thing that may be hard to do. When was barred from water in the ER the last thing I wanted to do was talk on the phone, when I have an IV the last thing I want to do is talk on the phone. So, while the thought is very much appreciated the actual action is sometimes more harm than good. Small gifts and cards are wonderful ways to show you care, coming to visit when they are up to it is a great way to show they are still a part of normal life. Some great gifts are chap stick, soft socks and hats, good books, craft projects and coloring books, stuffed animals, flowers, cards with written letters in them, lotions and perfumes, movies, snacks, and even just a little piece of the outside life. Make sure to check with the caregiver on specific products that are not allowed in the hospital and to make sure that the survivor doesn’t end up with 30 giant teddy bears bogging down their room. Most importantly make sure to keep the survivor in your thoughts, if you are religious, add them to you prayer list, if you are not religious, just keep them in your heart and send them your warmest thoughts! Check out our How to Help section for more.Great Caregiver Links
Caregiver specific links
Resources, news and asistance for caregivers
A List of tips for caregivers
A free, private support community for caregivers of people facing cancer.
An honest community for people who are now finding themselves in the difficult role of caregiver.
A site where caregivers can find support and guidance
A guide to taking care of the caregiver
A complete breakdown of cancer, and being a caregiver, complete with resource links
A Guide of what to bring with you to chemo treatments, this is great for the caregiver since the survivor will probably be suffering from chemo brain
A free online toolkit for caregivers
A guide for caregivers of brain cancer survivors but it has useful information on being a caregiver to any survivor
A guide is to help patients and families find sources of information and support
A great article about Life after Cancer for a caregiver
Hospice care is something that I believe in fully. I think it is not giving up when your loved one enters into a Hospice or End of Life treatment plan, I feel like the strongest people I have ever know in my life have found great comfort in hospice care. At times I feel like the community and ideals I am pushing here might be discouraging to people who live with cancer and may be unable to reach remission in their life. While I do not have experience firsthand with hospice, I do think that it is a vital that caregivers have the emotional support and resources to understand the transition through hospice and end of life treatment.
Another area that I feel like I do not give enough credence to is depression, anxiety, PTSD, and other mental issues that arise from a cancer diagnosis and treatment. I, myself, have residual side effects from the scaring in my brain. Since my cancer was in the right frontal lobe I have issues with my emotions, as well as assessing proper responses as times. Depression is very real for survivors and even though I know that my positivity got me through, other emotions are valid and need to be addressed so that the survivor can move forward with their lives. This is an article about how caregivers can cope with stress
It is tremendously important that you research the charities where you are donating your time and effort. Make sure that you agree with how they are spending their money. I, personally, find exorbitant salaries of CEOs to be very off putting and as someone who runs a nonprofit, I cannot give to an organization that wastes its money on paying an outrageous salary (but that is just me!) Use these sites to learn more about all charities.
There is so much more on this site!
While this area is titled ‘Caregiver Page’, the whole site is set up for survivors and their caregivers so, please make sure to check out all the areas because there is so much more to find on this site. Please make sure to look over the whole site but if you cannot find what you are looking for, please drop me a line and let me know and I will help you!
One important thing I do not cover everywhere else even though it pertains to everyone is a living will. Everyone needs to have a living will, this is the only way you will know what your survivor's last wishes are. They may seem morbid to others but it is a fact of life. Everyone is going to die eventually. You need to make sure their wishes are documented. Check out this website to make a living will for your family.
