One Year of Blogging: Looking Forward

This past year has been quite eventful, one of major ups and downs! I can only imagine what the next year of my journey will bring.

One glaring recommendation from a few folks along the journey have suggested that I look into memory care facilities for my grandma.

I don’t have a crystal ball. I can’t tell you what the future holds for me or my grandma. Even though my grandma is declining mentally fairly quickly, I believe that my grandma can be safe at home until she chooses otherwise. She is still able to express her wishes and stay safe with support at home. As her primary caregiver and only living close relative, the responsibility falls on me to respect those wishes.

What I can tell you is that I am not going to take the easy way out. Instead, I am going to educate myself on strategies for supporting people with Alzheimer’s and dementia so we can apply them as they make sense to the care she is getting now. 

I am also going to up the level of support she currently has.

Grandma has not always been keen to the idea of people coming in to be with her all of the time. I was lucky to get one other person besides myself at the beginning. Earlier this spring, I finally just decided to get more people on the lineup. Now, she is only spending a few hours alone each day.

Lately, she has started to ask me who was coming between the other ladies I had ‘scheduled.’
My response has been: “Nobody’s coming. Do you need someone to come?”
She always says, “No, I’m alright here by myself…”
but I think her asking this question is my window of opportunity to increase the number of hours she’s alone each day 😈

One of the ways I plan to do this is by using her long term care policy. My grandma has had a long term care insurance policy for at least 15 years. It covers $179/day in-home or at a facility.

The major hurdle to implementing the LTC policy as a method of paying helpers has been the fact that the company that holds the policy is unfamiliar with the concept of “consumer direction” or “participant direction.” In the disability world, where I spent the last 12 years of my career, self-directed supports is the new way of supporting families in their homes.

With self-directed supports, you are in charge of recruiting, hiring, training, and managing caregivers. Unfortunately, the aging world and long term care insurance industry are not familiar with this concept.

Since neither my grandma nor myself want strangers coming into her home from some random home health company, the policy is just collecting dust (and sucking a chunk of money out of her account each month). Stay tuned for developments on this case.

I think everyone knows the LAST thing I want to do is put my grandma in a facility. And from what she tells me, she doesn’t want that either. However, I am a firm believer in exploring and documenting all options so that when the time comes to make a decision, it’s much easier because you have all of the facts laying in front of you.

SO, I announced to my grandma that we will going on a tour to explore the different options available in her area, that way we can record what her preferred choice was in the event that I am unable to keep her safe and healthy at home. (One thing we talk about sometimes is – what happens when something happens to ME? There will be no one to coordinate and oversee everything that is going on at her house and manage her care. So we need to have a “Plan B.”)

Stay tuned for the TCG CRIBS: Perennial Edition Tour! Coming to a screen near you late summer of 2018.

Finally, we have talked about finding ways to get out from in front of the TV all the time. We’ve talked about taking a vacation, maybe joining (or starting!) a book club, looking for a volunteer gig, and exploring our area a little more and getting to know people outside of her four walls. As a person who hates to sit and watch TV and prefers to be active (not sitting still), I am thrilled about this.

I can’t wait to share our victories, challenges, and adventures with you over the coming year! I hope you stick with me as I share the lessons I learn and resources I find as I stumble down the path of family caregiving and support my grandma to have a good life.