How to Take Care of Someone When You're Both Chronically Ill
I used to think life was like Peter Pan and Neverland — you know, you never get old and nothing ever happens to you. As I got older I realized that life isn’t Neverland. Life is life, you get old and things do happen.
I was exposed to chronic illness at a very early age. I myself was diagnosed with several when I was young and had to go to lots of specialists. I was on different treatments and doctors and hospitals became a normal thing for me. Then things changed, and I saw an even more in depth side of healthcare when my father took very ill when I was in high school. I was introduced to the caretaker side of things. I realized that it is very involved and can take a lot of a person to take care of another person. It gets to be even more difficult when you yourself are managing your own health conditions.
When my father first became sick, it was easy to manage because his health issues because they were not as complex and neither were mine. However, when I went off to college and graduated, my health issues got more complex and so did my father’s. I was still able to go home, help my mother take care of him and give her much needed breaks. I can recall one point when my father had a major back surgery that had some severe complications and we all thought he wasn’t going to make it. I was able to rush home and give my mom breaks so that she could go home, eat and change clothes and I could sit with my dad to make sure that someone was there to ensure he was well cared for by hospital staff while he was in the hospital. I saw then how all-consuming it was to be a caretaker and how you need a break or you could burn out ever so easily. You see, at this time when my father’s issues got more complex, my mother was still working full-time so juggling being my father’s caretaker, going to work and managing a household was a lot and she needed those breaks every once a in a while and I was glad I could give them to her, and she and I have tagged teamed for years. I have even been her caregiver when she got ill and my father couldn’t fully care for her. So I guess you could say we have all pitched in and taken care of each other and supported each other to the best of our abilities.
Until recently, I have been able to keep up being a backup caregiver for my mom or dad and things have just worked. However, while I was helping to take care of my father, I had ignored the progression of my own symptoms and conditions and am now at a point where I can barely manage to care for myself some days, let alone drive the two hours to be the backup caregiver for my mother. And, it hurts me so much because I have always been there and been the one to step in and fix things and now I cannot. And I have now had to accept that I need to put my own oxygen mask on first before I can help others. And it pains me I can’t be as present as I would like to be to help her, because having a backup person is an essential piece in being a primary caregiver. While my mother continually says she is fine and doesn’t need help, I know that she does, but I have gotten creative in how I can help her and my father from a distance all while taking care of myself.
So how to you help a caregiver when your own health is declining? What do you to help? How do you support? Well, here are some tips:
1. Continually check in on the primary caregiver and often. Make phone calls and video calls as much as you can to check in.
2. Send encouraging thoughts and cards. A handwritten note or letter makes a world of difference
3. Find out what your loved one who is being cared for needs and try to send those things. This one is especially helpful. In the case of my father, he needed things to keep him from falling so I was able to order things online and have them sent to him and he has been grateful since they have arrived. And they have made a difference! Plus, he feels loved that I cared enough for him to send things to help him.
4. Try to engage other friends and family to call and support or even step in to support your loved ones. Communicate with family and friends with what is going on with your loved one and then maybe they can take over from time to time or even call and check in and see how things are going with the primary caretaker. That helps on so many levels.
5. Make it a team effort. If there is another person who can step in and assist, call them and ask them to step in from time to time. Have a team approach to care. Also, don’t be afraid to call in home health care and therapy in order to make things easier and to address the needs of your loved one.
6. Send care packages to the caregiver to show how much you care about themA care package goes a long way. Sending favorite things to the caregiver and the loved one being cared for shows you are thinking of them and care about them. It also will provide them with a break from the day to day of caregiving activities.
How do you care for yourself as a chronically ill caregiver? Well that is simple. Remember you can only do but so much and that your health comes first. Remember that it is a team effort and to ask for help. You cannot help others if you yourself are not well. I know we all want to do things on our own, but here is the reality, we all need some help, we all need support. Often times we think that we can do it all on our own, and that we are Peter Pan and live in Neverland and everything is magical and there are no problems. However, that is not the case. We live on planet Earth and have to face things and we have to ask for help. It is OK to ask for help. It is essential to you and your loved one’s well-being.
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