Today my brother came over and took mom out for the day. What a blessing to have some support. There are those who have no one who can give them a hand and I can’t imagine how hard that must be. I stay with mom 24/7 because I am disabled and can no work outside of the home. We want to keep mom home with family for as long as possible. It is what works best for us, but I think the decision was based on many factors. While most families have full-time jobs and children at home and so many constraints on their time I consider myself very lucky. My children are grown and married. My son who lives back in KY is a former marine and is married with two children My youngest, my daughter lives here in South Carolina. She works full time and is going to school full time to become a teacher.
My Aunt died in July of last year and that is what pushed me to do it. I watched my cousin, who was her mother’s caregiver, grieve for her loss. BUT she knows how lucky she was to have gotten to share that special time with her mom. I decided that this would be our time. My mom was diagnosed in 2011 and we are somewhere in the middle stages. I hope that we have many, many years left together. I wanted this time with her. I admit though that it is alot harder than I first thought. Especially with my ongoing medical problems.
The first three months were the hardest thing I had ever gone through. I cried so many tears of sadness and frustration. I missing all the things she could no longer do for herself. I forgot all the things that she could still do. If you read my first post you will understand some of what we were dealing with. It all came to a head on my 44th birthday when I sat down and did some serious research and found www.alzheimersreadingroom.com and the wonderful work Bob Demarco.
I have thanked God everyday since. That was January 10th. It’s been over a year of being a caregiver full time and I feel as if we have come along way. It was like Bob said “You have to leave everything you have ever known and join your loved one in Alzheimer’s World”. It’s not easy and sometimes it gets downright scary. But let me tell you, it has changed my life. When I woke up on Jan. 11th, 2014 everything changed. One of the new tricks I use is to use as few words as possible. My husband jokes that I now talk like a post-it note, but it works.
In the beginning, I was talking so much that by the time I would get to the end of what I was saying she would have forgotten the beginning already. I touch her all the time and tell her how much I love her. I never mention the A-word and I never correct her. If she remembers something a certain way then that’s what happened as far as I am concerned.
Things have gotten so much better now. I am sure there will be hard days to come I am not that naive. The first thing any caregiver should know is that you WILL make mistakes, LOTS AND LOTS OF MISTAKES. That’s okay as humans this is how we learn. And let’s face it, if it’s not a life and death mistake your loved one will probably forget it soon enough.
I have had to learn some serious time management techniques. It’s so easy to start neglecting the other people in your life. You also have to remind them that you love them very much and never take them for granted. Sometimes this gets forgotten when your deep in the middle of Alzheimer’s World. So I want to take this time to say thank you to my wonderful family. If not for them, I could not take this journey with my mother.
So I guess the point I’m trying to make today is, if your offered a break take it. Relax for the precious time you are being offered and recharge. Don’t feel guilty about it because in the end you will be a better caregiver for it. Do what I did today take a beautiful drive in the country with your spouse and cook a great Sunday dinner with your daughter.
Appreciate the good, laugh at the crazy and deal with the rest!
I love you momma!