I was diagnosed with Felty’s Syndrome (a rare form of Rheumatoid Arthritis) in 2011 and coming to terms with my diagnosis is still an ongoing daily process.
Most times I don’t dwell on it because let’s face it as an Alzheimer’s caregiver, wife, mother and grandmother who has the time. Life doesn’t sit still even if I have to and I have learned that this is okay.
The trick it to put together a great support system and then create a plan of action.
We work together at our house to get things done. My husband and I are extremely OCD. Between that and my immune system health, a clean house is an absolute MUST.
We have always been very organized, you know the saying “There is a place for everything and everything has a place”. If you ask me for something I can go right to it and this has made things so much easier. We clean as we go so there are no large messes to deal with.
Since it is only mom, my husband, and myself it is pretty easy to do it this way. In my house, we not only deal with Rheumatoid Arthritis but also Alzheimer’s disease so keeping things in order is doubly important.
Keeping track of doctors appointments can quickly get out of hand if you let them. I have a paper calendar for mom to keep track of things. I have a calendar on my phone, tablet, and PC that all sync together and I have found this invaluable.
Prescriptions are another important issue. With all the medications that we have to keep track of written instructions help out so much.
I learned a very valuable lesson back in January when I was hospitalized. My husband didn’t have a clue of all the names of the medications I take and the dosages. We had forgotten to bring them in our rush to get to the ER.
After finally getting it straightened out I was given a “UNIVERSAL MEDICATION FORM“. This is a form to list all of your medications, dosages, start/stop dates and prescribing doctor. Keeping things organized was what drove me to create the “Caregiver’s Manual” that you can get absolutely free in the TDAC Resource Library!
Research is also very important. Whenever we are given a new prescription or a new test or procedure the first thing I do is hit the computer. Not only do I find the medical research, but other patients reviews are sometimes helpful too. Although, sometimes you need to take these with a grain of salt. Having a good team of doctors that you can trust is essential.
Keeping a daily journal of the things you have or haven’t been able to accomplish each day is also a good idea. You can also keep track of symptoms and medication side effects. I bring these notes to the doctor.
Learning that it is okay to say “I can’t today, but maybe tomorrow“. Knowing your body and what you can and can’t accomplish is very important.
Don’t set yourself up for failure. Keep things simple and go at your own pace. Listen to not only your physical voice but your mental voice as well. It is normal to visit the land of doom and gloom once in a great while. You just can’t move there permanently. If you are having a bad day talk to someone don’t let the bad days take over your life.
If you don’t have a place where you can cry, vent, & laugh then I suggest joining us at The Caregiver’s Corner. A private Facebook group just for caregivers!
Being a caregiver is the hardest job you will ever do. It’s hard physically and mentally so having a support system that you can really count is the key to surviving for the long haul. Caregiver burn out is real. It happens to the very best, but having a plan A, even a plan B will give you the sense of security and peace that is the best foundation you can have.