I was a caregiver for my Mom for nine years, who had many strokes, ended up hemiplegic, in a wheelchair, living – more like just existing, wanting to die. It was very tough on both of us.And very tough for my husband.
Now, I’m the sick one. I live in daily fear of having a stroke and ending up like my poor Mom. Even though I am not in a wheelchair, I feel that my existence has become small and insignificant.
Having been a caregiver, and now, a “caregivee,” I am in a unique position to give advice to caregivers. I’ll keep it simple:
1. The MOST IMPORTANT thing above anything else – keep the health and well-being of yourself #1. If you aren’t well, both mentally and physically, you cannot render good care.
2. Please don’t talk to the person you are caring for in a “less than” manner. No baby talk, no condescending platitudes, no ridiculous sayings such as, “Buck up Buttercup!” “The sun will shine for you tomorrow!” No one believes this crap – especially those that are ill.
3. It really is the little things that make a difference to the person you are caring for. Remembering to bring them a drink, or something to snack on (knowing that their mobility is challenged) every so often, means the world to them.
4. People that need the assistance of others often feel like a tremendous burden to their caregivers. To minimize this, don’t emphasize the things that you are doing for this person. Making things seem as “normal” as possible is the best thing for all involved. Yes, you want the person to know that you care about them, but emphasizing how much you are doing, or, how often you are going out of your way for them just increases that burdensome feeling and guilt the person being cared for experiences.
5. Integration is key – making the ill individual feel that life with them is enjoyable and as “normal” as it was before the illness is paramount. Being ill doesn’t mean the person is helpless – let the person do what s/he can still do without causing themselves harm. Contributing to daily routines helps the person to feel “OK” about themselves and their place in the family unit.
An excellent place that helped me significantly when I was caring for my Mom was A Place for Mom. This wonderful organization, which offers it services for free, helped me to do one of the most difficult things I have ever had to do in my life – find a care organization for mom when I could no longer care for her in my home. Based on our individual circumstances, I had to utilize their services on three occasions. Without them, I would not have been able to find the quality care-giving agencies I was fortunate enough to locate with their assistance. I cannot say enough goo things about this organization. (Despite the name, the agency will help you find a place for Dad, for brother, for sister, or any person that is in need of a place to provide them services that you cannot provide in your home.)