This is one question I get frequently. My answer will always be “NOW” since you are asking me the question, but typically the response includes five reasons why the change can’t be made. Once you have verbalized the question, you must acknowledge that you probably already know what the real answer will be. It’s just not easy to help a loved one make the changes when they need to or better yet, before they need to be made in haste. Making the change before it’s required gives you a variety of options.
Our parents told us they had a plan, started to execute it, but then stalled when the big changes needed to happen. They purchased a place in a Continuing Care Retirement Community (CCRC), but always treated it like a vacation home that was visited a few days a week. They kept their “downsized townhouse” and would share the “milestones” that would trigger their move into the CCRC apartment full-time. The milestones came and passed.
We were thankful a doctor had my parent’s license’s suspended, because they refused to listen when all four of us kids sat down with them and suggested it might be time to give up the car keys. We did this twice over a two-year span. We eventually had to be sneaky and hide the cars because my parent’s continued to drive even after their licenses were suspended. They tore-up the suspension letters and kept their licenses. When we found them driving and asked them if they realized what they were jeopardizing by driving without a license, they would open their wallets and glare at you like you were a bald-faced liar.
Looking back, you realize how progressed their dementia was well before it was ever diagnosed. The family notices first, whether its a personality or a behavioral change. We pushed to get them to a doctor that could provide them with more than the mini-mental exam most often used by general practitioners to determine if a patient might have dementia. Two years after my father was diagnosed in a moderate stage of Alzheimer’s, he was scoring 29 out of 30 (27 and above is considered normal) on the mini-mental exam.
As my parent’s declined, their pursuit of independence and maintaining their current lifestyle grew stronger. We worked with the retirement community to move them into Assisted Living after they determined my parent’s could no longer safely live in the Independent Living community. Had my parent’s accepted a caregiver when they lived in Independent Living, it would have delayed a move into Assisted Living. They refused to accept this change and were forced to move. We negotiated two weeks to coordinate for the move and the community notified my parents they had three days to move into the Assisted Living apartment. It was a herculean effort that could not have happened if I didn’t have three other siblings. We were fortunate a larger room in Assisted Living was open when my parents had to move.
When my Mom kept misplacing her purse, I opened up a new checking account so that she could keep a checkbook in her wallet, but not jeopardize their retirement income.
Unfortunately, in my experience, all the changes were made late and were incredibly stressful. In hearing other’s stories, I know we are not unique. Most families have to wait for a critical incident before any change is considered. Once you make the change, you wish the change had come sooner.
I was physically ill days before we had to move cars, move my parents, and introduce a caregivers. I felt immediate relief when the change happened and wished it would have come sooner. My parent’s also benefited from the change.
I believe from the information I have read, as well as from my experience, that the earlier the change happens, the better the road for everyone involved, especially someone with dementia who progressively has more difficulty with change.
Everyone and every situation is different. I only hope that when you start asking these questions, you will consider the consequences of not making the changes now. Hoped.