The Truth Lies Between What I’m Told and What I See

eyeglassesOne of the most frustrating factors of being a family care giver to someone with dementia who lives in a community is the amount of information you just don’t have. You want so badly to ask your family member how they are doing and what’s been going on, but they don’t remember. It took me at least a full year before I stopped asking and wanting to believe my Mom’s reports on her day. It finally sunk in that my Mom probably wasn’t eating breakfast after she was moved into Assisted Living. Some days she still tries to tell me she cooked herself something on the stove. For those of you familiar with Assisted Living, they typically don’t include cooking appliances.

Just last month I shared that I drove to my Mom’s apartment at 10:30 PM one night because she had me convinced something happened and she was being moved out of her apartment. Such a rookie mistake … that happened to someone who’s been dealing with this for several years now.  I still laugh at myself over that one.

The personal assistants that have been added share small tidbits with me when I stop by and ask, but I know most of their days are spent sitting in the hallway waiting for my Mom to emerge from the apartment. I would love to have a GPS device on my Mom to see what her day looks like and where she goes. I know she’s sleeping a lot more and when there are events with music, the personal assistants say they can usually get my Mom to join them.

We are worried that one day we are going to get a notice telling us that we have to find a new home for my Mom. I was called in to discuss my mom’s “unbecoming behavior” and told if we can’t get things working better, we will need to look for a new home that can better care for my Mom given her mobility and dementia. So far we have worked with the community to make the following changes:

  1. Adjust the medication. We are told she is now getting the highest doses they can administer to a resident in Assisted Living. It can take several weeks to see if the medication helps manage my Mom’s behavior. I appreciate how the community phrases the concerns as a “dignity issue.” My Mom seems to be mellowing and I haven’t gotten any reports in over a month about any “unbecoming behavior”.
  2. Hire personal assistants. As I have shared, my Mom really doesn’t like and resists the idea that she would need help. However, we are paying for personal assistants from 1 – 9 PM daily. We had to make changes to the individuals assigned and I’m glad I’m able to stop by, meet them and speak with them. Right now it’s the closest I can get to having some insight into my Mom’s days.

Right now, things seems to be improving. However, if they start to digress, we may have to look into checking my Mom into a psychiatric hospital. While not something that happens in every case, many have had to seek this solution to find better medications manage through this stage of the disease. I do believe that if we go that route, the only option for my Mom will be to return and be moved into the secure memory unit. There is some issue with the doses of certain medications and Assisted Living,

We are doing our best. Dementia is just a cruel disease.Endured. 

44 Million Caregivers in the U.S

replyhazyOne of the most striking realizations for me lately is how many of us are out there helping an aging loved one. In November 2012, the Alzheimer’s Association reported that 43.5 million care for someone 50+ years of age and 14.9 million care for someone with Alzheimer’s disease or other dementia. 

Our system doesn’t work. I know my story is unusual because I had two parents with similar stages of dementia, but I just had to learn faster. Our problems were magnified. My parents either couldn’t recognize or wouldn’t admit their lives needed to change. It meant less freedom and they were unwilling to accept any assistance.The dementia crept in and eventually, they were unable to comprehend the situation.

My parent’s fully believed that selecting a Continuing Care Retirement Community (CCRC) would mean they would “never be a burden to their children.” You can wade through over 300 stories I have shared in the past two years on how difficult this journey has been. I imagine most children have a love/hate relationship with the place their parents are staying.

My parent’s were happy with their choice, and the day they were moved into Assisted Living removed a huge weight from my shoulders. I’m very appreciative of the way my parents CCRC handled the situation.

However, I’m not satisfied that we have found the right options. I spend 20 – 30 hours supporting and visiting my Mom many weeks of the year. I know that isn’t what they intended, but I’m duty-bound to provide.

How can we change this dynamic so we don’t keep making the same mistakes? Queried.

Please share in the comments section how you are approaching or have decided what to do for your most senior years.