Advocates From The Heart

For anyone reading this who has a family member in a Memory Care facility, my biggest suggestion to you is to be THEIR ADVOCATE. Be a voice for them in all aspects of their care: medication, washing their clothes, making the bed, cleaning of the room, how they are cleaned up, oxygen cannulas changed out per week, bed alarms turned on and off properly, and batteries working at all times, and how they are cared for when you are NOT THERE.

Firsthand, I can say this was a role I never expected to do in my life. Nor did I think of myself as the primary caregiver to BOTH my parents. My dad being in Memory Care has been one of the hardest and most emotional things to endure. Moments in tears driving to an errand, sitting at the kitchen table early in the morning, and realizing this person will NEVER be at home again. But to be their advocate when placed in a Memory Care facility will challenge you to your CORE. Voice your opinions, put everything in writing, and follow up with the LVN, Med Tech, Carestaff even housekeeping to make sure your requests are fulfilled as per your instructions. Be as detailed as possible and don’t worry about what your family thinks, you are doing “God’s Work” and how they are cared for will hopefully ease some of the stress of ‘letting go.’ It was the letting go part that was grueling for me: I had to visit EVERY DAY to make sure my dad was cared for as per my overly detailed instructions. One day, the pull cord was too far away from him to get help. I wrote a note to the nurse and continually made sure it was properly nearer as I wanted. Don’t be afraid to stand your ground. YOUR PARENT IS WHAT MATTERS.

I have had numerous times where I get a phone call “Sorry to let you know but …. happened.” It’s the last thing I wanted to hear ever. Memory Care residents really need a family member who knows the ins and outs of the facility – who the Memory Care Director is, Maintenance, Housekeeping Etc. If your loved one is a diabetic, make sure blood glucose readings are faxed to their doctor each week. Also, monitor their supplies (have some at home as reserve) so when the nurses call you have it ready to go. There is NO RULE BOOK to be an Advocate for your loved one. It’s jumping in with both feet and NEVER walking away or being too busy with life to make time to care.

Become an advocate when they go to the hospital if you are either their Power of Attorney or NOT. Skilled Nursing Facilities are another place where being a forceful advocate is crucial. I have been at a skilled nursing facility with my dad and I went there EVERY DAY the ENTIRE time he was there. Be as detailed as you can – look for and know all the people in charge of your loved one.

Many times I’ve said to myself, “Who’s going to be there for ME?” This is something that makes me very sad thinking about all that I have done for my dad. To this day I still get emotional about that question.

Advocates from the Heart will go the extra mile, give up their personal time and energy to make sure their loved one is cared for so they can have some peace of mind. Be the light that shines BRIGHT for those with Dementia who can’t speak for themselves. You won’t be sorry you did this, however, let me say that it is a rollercoaster of emotions. The Long Goodbye is one of the toughest things we can go through but even on the days when all you can do is CRY, try your best to find comfort in knowing you are AMAZING and one of the most CARING and COMPASSIONATE people in the world.