How to cope - from someone who is in the middle of things

by Nadia
(South Africa)

Hello fellow caregivers. Today I feel the need to write this article because there are so many of us in the same boat. A boat that is not always afloat as we would like it but we nevertheless cope don't we?


For me the worst part is the extreme loneliness I experience. Mom and I live alone and very few people come to visit. I think it is because they do not know how to handle the situation. For me it is no-one to have an adult conversation with. In my house the routine is mainly waking up MOM every 4 hours at night to carry out the usual hygiene factors, and then waking her up and getting dressed for the day, making her food and doing the usual things to try and make her comfortable. I have been doing this for the last 4 years. In the beginning it was very hard I had to cope with giving up a career, and the loss of a mother and friend I knew and loved.

The biggest lesson I have learned is to cope with the loss of control over situations - I am a bit of a control freak and this entire experience is an "out of control" one! How did I do it? (Or still trying to do) Well, I learned the easiest is to live in the moment and not to think or plan for tomorrow. It made me feel less angry and frustrated.

The next important thing was to find recreational things for Mom to do, she loves music so we play lots of music. She also loves animals (we have 7 cats and two dogs). I realized she needed something to cuddle and love, so we got our little Jack Russell, Cody, the love of our lives - it is amazing how this little dog gave my Mom the will to live again, Cody really looks after the both of us and is such a little bundle of energy that you feel alive again.

This was all well and fine but I could see my Mom's mind was going and I needed for her to stay busy.
So we worked out a routine, she must try and dress herself this took a while but she is able to do it now, she also is able to make her bed (or sort of). She now is able to wash herself and this in itself is a BIG blessing for both of us.

She loves to be outside so we had some shallow steps built with a railing to help her get down and sit in the garden, once she is made comfortable in her chair she is as happy as a little bird in spring.

Luckily she loves knitting and the fact that she is not able to see well does not hinder her much, she taught herself to feel the stitches and is now knitting small scarves for homeless children. I can really recommend knitting as a very good therapy to keep the brain going. Use bright colours it makes them feel good.

I created a Sudoku board for someone that cannot see well. What I did was to have large numbers cut from wood, these I painted with bright colours glued a magnet to the back of it, (you could also glue blobs on the numbers that will harden that they could feel and count to identify the number (i.e two blobs for number two). I found a magnetic board and stuck tape to it so that there are 9 blocks with 9 squares each on the board . You could also stick raised strips to the board for those who can not see very well, this will ensure that the number is placed inside the block and very good to develop hand eye coordination. The Board must be sturdy and standing upright with a slight slant backwards.
I then every day (or however long it takes to complete the puzzle) stuck the permanent "clues" in some of the blocks (these permanent numbers had a different colour to the others) and Mom then completed the puzzle in her own time. You have no idea how fantastic she felt when completing the puzzle. You can do the same with word puzzles. For those nights that your parent cannot sleep they play soduko, just paint all the parts with paint that shines in the dark, all that is required is a nite light and they can continue to play and you can sleep!

Next I realized I needed to find something that is creative and that I enjoy whilst looking after Mom. I started a craft studio teaching crafts to students and making my own articles. This was the best thing I could ever do. Not only do I meet new people but I also keep busy with creative things. Mom normally sits in the garden when I give lessons so she is close by.

Sometimes I have the need to just getaway from it all, then I escape to my studio, I have a two way radio (or baby monitor will do) that keeps me in touch with Mom. She is perfectly happy if she can hear my voice on the other side and I am comfortable that I know she is OK. Mom will be listening to her music in the house and I will be in my studio tinkering with something.

This initiative opened up other avenues such as researching crafts and the history behind each one. I spend many hours reading up (something I can do whilst MOM is resting or knitting) and the plan is now to write articles for magazines. One article has already been published. Just goes to show how circumstances lead you to other alternatives.

So fellow caregivers, something good can come from a bad situation, just do not give up, it is hard I know but you owe it to yourself to do right by yourself as well. The situation was put on your path for a reason, the trick is to find out why and then you can move forward. Remember to stay in the moment.

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I can only pray
by: teresa

Dear Nadia, Your story really warms my heart and wish I was as blessed as you. I want to send you and your mom a BIG HUG and a SMILE. Your mom sounds like she is a mom who appreciates her daughter and knows you are doing all you can do to care for her.

I am sure that any one who has read your story feels the warm love between the two of you. I wish I could say that my caregiving for my mom is as loving as yours. I am sure all your days aren't all you want it to be, but none the less, you and your mom are truly blessed to have each other. I wish all caregivers could have your loving story.

You take care and I wish you many happy years. You are such a great encouragement to many of us. Thank you so much for sharing. God bless you both

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Oh My God
by: Anonymous

I read your story and can only respond with complete dismay. You have given up your life to care for your mother. Your story is my worst nightmare. I am facing ever increasing care giving demands and have NO desire to spend my life as a care giver and keeping busy doing crafts.

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Thanks
by: Sue C.

Reading your story makes me happy. You inspire me to not give up in despair and try to be more creative with my own situation.

I read about no self pity, which is what I feel lately. You express no anger, which I also feel lately. I want to be rid of those terrible feelings.

Thanks for posting and helping me. Your words and solutions encourage me. Thank you friend.

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You are Inspiring!
by: mary

Nadia,
What a wonderful article you wrote. I felt very inspired reading how you created the number board for you mom. I love how you think outside the box!

Staying in the moment is very helpful for me also. Sometimes the moment is pretty awful and I think "this too shall pass". Your story will stay with me for a long while and I am going to feel uplifted when I think of you and your mom in her garden! Thank you so much.
Mary, Santa Rosa Ca

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