Here’s my story how my family managed to move our 2 dementia suffering parents into assisted living. So simple a single sentence that is to type but what a hard long emotional process it is.
The Slow Creep of Disability
Always and only in hind sight is it possible to recognize significant signs, so if you don’t see them until later, you are in my company. Not counting insignificant things like cleanliness of the house, lights off most of the time, a plethora of post-it notes stuck everywhere (some of them repeating and speaking of . . . ) repeated questions and conversations. Well-check visiting, inspecting the med tray and observing overall demeanor, was the norm for many years until I found a mound of bounced check letters from the bank.
I’m horrified but learned along the way to hide, as much as I can, my reactions and ask carefully worded questions. How’s the checkbook going? Looks like there are a bunch of bounced check fees here. Can we look it over together?
Long story short, he agreed after some convincing to ‘do’ the bills together. A small family style loan got the checkbook out of the red and the finances got straightened out . . . but I never did feel confident of his understanding why checks bounce.
Three months into ‘doing’ the bills together, I was dismissed from my duties as he self-declared able to do it himself. I knew darn well it was a matter of time before there was another checkbook collapse but I had to let go and let God do His thing. I reasoned with myself that if the telephone, TV and electricity were all on, then the bills are handled good enough. Special slogans helped me through it: “don’t force solutions” and “wait until asked”. Alanon meetings are applicable to this affair.
A year and a half later I was approached by Step-Dad to intervene in the finances-again. This time the branch manager had pulled him aside to say the bank was on the verge of closing the account due to another load of bounced checks. She nicely said that most people his age have someone else handle writing checks. There is a big difference between forcing someone into something or waiting for them to ask for help, indeed. Of course I gave assistance . . . on 2 conditions: one it’s permanent, no give backs and two, it’s a total take over. At that point, he had little choice so he agreed.
It wasn’t a once and done deal. As with all dementia patients, the situation had to be explained and re-explained weekly. I found it easier for him to accept the situation when I used phrases like it was the bank doing everything, not me. The bank is paying the bills and the bank is managing the money. It wasn’t far from the truth since I used the banks on-line bill pay feature to manage their money. A system finally took root, at least good enough to keep them living independently without bounced check fees.
Gradually over a few years, the house gained an ‘old people’ smell to it. Cleaning the house had become something on the parents list to do tomorrow, always tomorrow. My offerings to clean were vehemently rejected, no matter how I asked or phrased the discussion. I received a scolding a few times I was caught cleaning when he wasn’t looking.
Showering and brushing teeth had become chores on the list to do tomorrow or they simply lost track of the days. Disposable under wear are so good at absorbing liquid, Mom stopped recognizing when they needed changed. Step-Dad insisted that my helping Mom to change them or give her a shower was ‘babying’ her. Argh! She could take-care of herself according to him. In reality, she couldn’t take care of herself and suffered annual UTI’s as a result. Step-Dad had become an expert at noticing Moms odd behavior when she had one. He learned to not wait but to get her in the car and to the hospital right away.
Still the goal is to keep them in their home for as long a possible. Sometimes decisions come down to voting for quality of life instead of quantity.
A Doctor Calls Adult Protective Services
One of those hospital events, Step-Dad’s ability to comprehend and answer questions from the staff was severely impaired due to the stress of it all. Rightfully so, a call was placed to the state Adult Protective Services for an examination of his ability to care for Mom. I can’t say I was confident he understood the potential outcomes of an APS investigation, as I tried to explain it. But because I understood, I felt it my duty to help him through the process. In the end, the caseworker and the State cleared Step-Dad to adequately care for Mom, in large part because I was available to help oversee them. In hindsight, my intervention could be an example of co-dependency in action. If it weren’t for ‘my help’ the caseworker may be have seen things a bit more clearly. Instead, I got more work instead of letting the process play out naturally. Yeah, over protection of parents grew and grew little by little but the conclusion of the caseworker made it obvious that Maybe I over-stepped.
In the meantime, APS submitted a request to the Secretary of State for a driving test. It’s an element of all investigations apparently. Due to the backlog there, the test for driving skills came 6 months later.
Loss of Driving Privileges
A notice came in the mail for a driver test but Step-Dad hid it and didn’t discuss ever having received it. It came with a form for sending to the doctor with other forms for the driver to fill out. A day or two before the appointed day and time for the driver skill test Step-Dad finally brought it to my attention only because the letter required him to bring someone along.
Yeah, I complained to him about not bringing it to my attention sooner but really scolding is pointless when relating to a dementia patient. It serves no purpose but to bring both of us down. As his abilities declined so does the effectiveness of scolding, well like it ever works really.
So we get to the appointment. He needs to take the written exam first but the appointment never got that far. The agent asked for the doctor’s form. There wasn’t one, so the agent clipped the driver license and suspended it just like that on the spot. Our lives just then dramatically shifted. I think I saw stars that day.
For the next 12 months, Step-Dad hitch hiked into town, (about 4 miles down rural road), for ‘snick snacks’. I adjusted my schedule, (by quitting my part time job which I didn’t like anyway), to drive them to doctor appointments, to the store, and even to the gym. Mom, during that time ended up with the shingles, needing lots of appointments that, without my help, would have been missed and perhaps impeded her recovery.
I wouldn’t have had it any other way but to do everything I could to keep them home. I made the decision to shift my purpose in life to caring for them as long as I could. Over-protection grew but so did the love I had for them. Perspective shifted from them being parents to being children. Reality became a strange mix of connecting with them as child-like and as grown up parents at the same time, even during a single conversation.
Step Dad eventually up caved to the convenience and comfort of driving the car despite having an invalid license. He kept producing spare keys! 3 sets!! I’ve come to learn that at any given time there are 25% of the drivers on the road have suspended licenses. It’s funny that he understood to take back roads and drive the speed limits but not the checkbook!
Choosing When and When Not to Intervene
Toward the end of the license suspension, he was driving as if he had a one, going across county, into town and every where in between. I gave up trying to stop his driving. The suspension was due to paperwork problems and not bad driving, I let it go. My life had become unmanageable and it became too much for me to deal with.
A second Secretary of State letter came with a re-do appointment. Yes, I aided the process of getting the doctor’s form completed and made sure it was sent in properly. I have a stake in this too. There is always a dilemma to weigh the amount help without over-doing. Decisions for interfering, (i.e., controlling) came down to balancing several factors: quality of their life, quality of my life, ability for them to stay living at home, risk to themselves and others and the risk of my life becoming unmanageable.
Surprise! Step-Dad passed the written and road driving tests becoming a legal driver for the next 2 years. A different doctor eventually sent a letter to the State recommending that he not drive. Dang it. That doctor, a neurologist, didn’t explain the reason but I assume it’s the memory, span of attention and, threat of getting lost. In 2021, the license was permanently suspended and so was the car insurance. We had until the end of that insurance policy to figure something out, but this wasn’t the main reason we initiated the move to assisted living. It was confirmation though.