Twenty-five years ago Ronald Regan announced that November is National Alzheimer’s Disease Awareness Month (NADAM). Every Monday, for the rest of the month, I will be sharing information with you about this horrible and soul-sucking disease that lives in my house.
Being aware is one thing, and a huge thing at that, and I think that those of you that know me, know my struggles with GM, have a front row seat to this disease that many people do not. You see how devastating it can be, how it changes the landscape of a family, how it damages not only the mind of the person suffering with the disease but also the bodies of those that take care of them. I hope that if there is an opportunity you can help educate others about the disease. Encourage others to sign this proclamation to make Alzheimer’s a national priority.
Care-giving. I just looked it up and the definition given seemed so sub-par. “A person who attends to the needs of another.” It just doesn’t seem full enough of a definition. It doesn’t cover the bubble that you live in when you take on the role of care-giving. The loss of self that happens, the loss of time, of creativity, of years.
When GM & I joined Mother down in Florida a few years ago I suffered a big change. The support system I had in Alabama was no longer available to me and I felt incapacitated with inability to do it ALL. I became more and more depressed and my entire body hurt. After much debate (internally) I opted to talk to a doctor about it and she diagnosed me with care-giver’s depression. (click here for an interesting article about caregivers of family with ALZ)
The medication that came with the diagnosis helped me climb out of the darkest of spots, but it was really up to me to change how I faced each day. I needed to stop trying to be a hero every day, stop trying to be perfect, stop trying to do it ALL. Honestly it was a huge lesson to learn that the sun will still rise if the kitchen is not scrubbed down every night and the clothes in the dryer are still damp when I go to bed.
I also needed to learn that just as GM has specific needs I do too. I need to have a creative outlet. I need to be able to get out of the house by myself at least once a week. I need to have time where I can unplug from the task of caregiving and just sleep or watch a movie.
I sought out the assistance of a respite care program from a local church and now I have the wonderful Ms. D that comes by every Thursday afternoon and gives me several hours to do whatever I need to do. Some days I need to run errands, but before I do anything I make sure to give myself an hour to just sit an a coffee shop and read.
I also learned how to ask for help. When I am tired or at my wit’s end I have gotten better about calling Mother and asking her to come home early or let me sleep in on a weekend. Asking for help is huge for me, but I have become a better caregiver because of it.
If you are a caregiver make sure you are taking care of yourself first. Take this quiz to check your stress levels and find out how you can get help.
This month a portion of every header design completed and all ad revenue generated will go towards Alzheimer’s research. If you want to donate directly you may do so here. (and let me know so that I can thank you!)
{ 13 comments… read them below or add one }
Caregivers ARE heroes, but yeah, you can’t expect yourself to be one daily. The hero I use is a little different in definition.
I think these posts will be excellent. Thank you.
You do so much and I am sure that we see only the tip of it from your blog.
Take your weekend off soon and come see us!
Great post sweetie! You know where you can come for respite if needed.
Great post, Cali. I’m off to take that quiz–I have three kids with special needs and while the type of care is different, I think a lot of the same stressers and triggers are there. The feeling of having to be “on” all the time. The worry of what would happen if I got sick. The conviction that NOBODY will do as good a job of sensing their needs as I will, and the resultant guilt…hell I probably don’t even NEED the quiz to tell me I have issues, but I had never thought of my angst as being connected to being a primary caregiver 24/7 to the little buggers. So true about needing to take care of one’s own self, too! I’ve gotten better about it than I used to be, but probably there is still some room for improvement…thought-provoking. Thanks for the great read
since i have not given up my attempt at NaBloPoMo, i will make sure i post something about my experience with ALZ as a nursing assistant, medication assistant, activity programmer and unit secretary…
thank you for sharing your live as GM’s caregiver with us and letting us get to know her and love her (and you)… dont know if i ever told you – but you being a caregiver to GM is why i started reading your blog )after finding you somewhere on someone’s comments.
love you,
gypsy
hi cali – i have certainly learned a lot about ALZ from your blog and i love posts about GM. i signed the proclamation. xoxo
You are amazing. I’m glad you’ve learned you don’t have to and can’t do it all.
You’re my hero, Cali, for being such a caring caregiver. And I know asking for help was a big step for you, but I’m so glad you did it. I just wish you had MORE respite care because you deserve/need it.
you are indeed amazing. xx
I signed the proclamation, too
Thank you for doing the amazing work you do every day.
You are amazing and all of the tactic’s that you employ to keep your self sane and able to function in this incredible role will keep you on track and happy during motherhood. Another care giving occupation that of course has different challenges and joys but is incredibly selfless and never ending.
Hope you can get as much help as you need, we all need to be looked after from time to time xx
You are so right – the definition of the word caregiver doesn’t even begin to cover it all. I’ve learned so much from you and your posts related to Alzheimers.