My Personal Struggles as an Alzheimer Caregiver
We’re launching a new addition to our blog post this week: a regular ‘chat’ that I’ll capture here describing some of my joys and challenges that I’m experiencing as a caregiver. This will be in addition to our regular postings of resources for caregivers, including books, products and services. In my personal blog, I feel that there are others that struggle with a loved one as you do being a caregiver.
To fill in some of the ‘back story’, I moved to Texas in 2011 after living in Los Angeles for 20 years. The primary reason I returned was because of conflicts and arguments my parents were having after 50+ years of marriage when my mom’s memory issues started to affect others around her. I knew I could help in the communication between them. My mom’s Alzheimer’s had progressed fairly slowly until last February, when she suffered a severe depression. After further evaluation, the doctors required her to either go into a dedicated memory care community or have 24-hour care. We immediately chose the 24-hour care in their home. Several other serious incidents affecting both my mom and my dad’s health happened over the course of last year.
During this time I changed full-time professions from my previous senior transition business to a bilingual 4th grade teacher. It required many hours to pass multiple alternative certification and state testing requirements; I was doing this all while trying to be the best help I could to my parents. I’m now in my 3rd year as a teacher, and finally feeling like I’m getting better at it. I have to say it’s the toughest job I’ve ever had, and made me even more appreciative of all our teachers around us. My mom was a teacher for 30 years, primarily teaching Spanish to high school students in Arlington, TX.
In December 2014, my sister and I visited several senior communities after getting agreement from my dad that he’d be willing to move from their large home into a more manageable place where meals and services are provided. We were very happy with one place in Arlington, TX that was identified as an independent living place. My mom, who had been receiving 24-hour non-medical caregiver support, moved with my dad to a 2 bedroom, 2 bath apartment in the community. Their 24-hour caregivers were open to continuing in their regular service. My mom seemed to go downhill quickly, losing muscle strength in her legs and having more issues with balance and sleep routines. She began waking up several times during the evening and getting up, which required my dad to help get her settled back down. His health continued to decline as well.
Within one month, we started having conversations with the Executive Director of the community whether this was the right situation for mom. Shortly after that, I went on a dr. appt. with my parents to my mom’s primary caregiver. He spoke very directly to my dad and I about my mom’s need to be in a dedicated memory care community.
It was a really hard day after that. I’d always wanted and expected mom to be able to age in their home, even if they had 24-hour care. However, the doctor forced me to see that I was keeping my mom in this situation more for ME than for her. She is in the late middle stage of the disease and can no longer bathe, dress or use the bathroom without assistance. She does not make sense when she speaks. But she still loves to be up and around, fiddling with things and feeling like she’s got some job or purpose. At their home, dad would get frustrated with her for ‘rearranging’ the kitchen utensils drawer, or finding a new place (haven’t found it yet) for some of her jewelry. We were trying to make her fit into our world, which is much different from her’s now.
She’s now in a good community with experienced caregivers that allow her to wander to her hearts content, open drawers, move things around, etc. and no one gets upset with her. It took me a LONG time to give up my need to keep her with the family, but I can already see a change in her disposition. My dad’s in a connected assisted living part of the community, which allows him to have frequent, regular visits with my mom.
Some of the things I’d like to share in my future writings will be:
- my personal experience searching for a senior community for my folks
- accessing long-term care insurance
- setting up a room in memory-care and assisted living for a parent
- birthday and holiday celebrations for those with dementia
- clinical trial opportunities for those with the disease, as well as caregivers
If you have things you’d like to share, please do. I’m thankful for all those paid and unpaid caregivers like yourselves who have a heart for those with chronic conditions. You are a blessing to those you serve.
All the best,
Catherine
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