It’s what you know for sure that just ain’t so.

twain quoteA Financial Adviser shared this saying with me after I reached out to him to help some clients who have dozens of banking and retirement accounts. As a Daily Money Manager, I work to simplify their lives, minimize the money they are spending on things they don’t use, shield them from fraud and predatory vendors, and help connect them with the right resources to best serve their interests. Sometimes it’s an Elder Care Attorney, sometimes a Home Care Aide, sometimes an Aging Life Care Manager, and sometimes it’s a Financial Adviser. In a few cases, it’s been one of each.

The Adviser used this expression in response to a conversation about some beliefs we have about managing money and I think it really applies to the world of caregiving in many ways.

First off, Mark Twain is credited with the complete quote: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”

I recently had a discussion with a family that was struggling to help their Dad. They wondered when it was time to consider moving him into a memory care community. I have seen over-and-over again what happens to individuals when you wait too long. They have a hard time adapting to their new community.

“But Dad doesn’t like people, he’s always been a loner.”

Everyone needs to do what feels right to them, and to serve the best interests of their loved ones. In many cases, what our loved ones like changes over the course of their dementia. My mother who was a Life Master at Bridge, didn’t enjoy cards once she could no longer keep track of bids. The woman who hated TV would choose to sit and watch it some days over doing a painting activity — and she had been painting since the 70’s.

In the same way it pained me to lose my mom bit by bit, seeing her no longer find enjoyment doing the things she loved to do was a double-whammy.  What I did see was that my mom started to enjoy activities I would have never guessed at her memory care community.

What I thought I knew when it came to advocating for my Mom, wasn’t always so. Give your self the time and space to consider the options. Your loved ones are lucky to have you. Remembered. 





What should a community include for a person with Dementia?

checklistMy hope is to make this a simple checklist – but don’t discount that this is such a personal and complex topic. My Mom is currently in an Assisted Living facility that is geared toward someone who needs help with the Activities of Daily Living (ADLs). The residents include individuals in wheelchairs, some with vision-loss, and others who have mild cognitive impairment.

The needs of someone who has partial vision loss is very different from someone who has no idea what day it is. For a variety of reasons, we began a search for other living options for my Mom.

On my tour of the first community, I marvel at the communal dining arrangement. My Mom has difficultly making choices and I realize that having to sit alone and then choose a meal is a dis-incentive to visit the dining hall. I understand why my Mom has been choosing to eat most of her meals in her room and makes her own peanut butter and jelly sandwiches.

My Mom has also started to ask me what she should be doing. She has always been in motion and not knowing what to do to stay busy is difficult for her. Most communities that deal with individuals with dementia offer very structured days with activities that can fit a range of individuals in varied stages.

When looking at a community, I recommend you:

1) Check out the activity schedule. See how the day is structured and attend some of the events to see how they work. Having something to do and being invited would be very helpful for my Mom. All of the offered activities are also geared toward someone with memory loss.

2) Understand the meal service. The first facility I visited explained the family style meal service. They make the delivery of the food feel very home-style and tailor each meal to the residents medical needs and personal preferences — but do that on their behalf. All of the dementia-based care facilities offer this as well as monitor if the resident is eating and make adjustments for them because most are no longer able to make meal choices.

3) Consider other care needs. If a doctor is needed or skilled nursing required, what are your options? How do they manage end-of-life needs?

4) Talk to other families with loved ones in the facility. I visited three different places and only one of them offered me the ability to call the families of other residents. That speaks volumes!

5) Listen to your Gut. One of the facilities I toured was absolutely beautiful. I could picture my Mom in the apartment and we could furnish the whole place with her furniture. However, I realized that the facility with smaller rooms that come pre-furnished that we could tailor with my Mom’s belongings is probably the smarter choice. The idea is to have her engage with the other residents of the community and the smaller rooms encourage that behavior.

As a closing thought, I recall how difficult it was moving my parents from their independent living apartment into assisted living. We had about two weeks to pack, move, store and dispose of furniture, clothing … stuff!  While I don’t mean to be so grim, I know that my Mom is never going to get better and the less we have to sort through when she has passed away, the better I will be able to manage and deal with the final bout of grief that will come once my journey with my Mom has ended. Considered. 

How did you get Dad to buy the small bottle?

bigvodkaToday my 15-year old son came with me on my visit with my parents. Both of my parents were interested in running errands. Usually, my mom comes with me while my Dad takes a nap. Today, my Dad is excited to go to the store.

We had to park in the auxiliary lot, which means we had quite a walk to get to the car. I was glad to see my Dad moving so well. He shows no signs of a limp and the dance with the wheelchair two weeks ago is just another odd-ball story from this journey we are on.

For the third visit in a row, my mom wants to go look at “lollipops.”  That is what she now calls cotton underpants. She is only willing to buy one pair, so when we find the package of 3, she refuses to make the purchase. I calmly attend to my mom’s questions and let her make her own choice on this. I know I will have to buy them and sneak them in her drawer to get her to accept replacements.

While we are off on that mission, I asked my son to help Pop-Pop find the section with the alcohol. My dad wants to purchase some Vodka for him and Bourbon for my mom.

The drinking has posed some issues for us over the past few years. However, I’m more concerned that my parents have some things that keep them feeling independent and allow them to follow the same 5 pm “Quiet Time” ritual they have had since I was a small child. We run into trouble when they don’t realize they have already had their drink and return to the bottle for a second. Thankfully, they are now in an environment that can manage and care for my parents should they need help.

Typically, my Dad will grab the biggest bottle he can find. When I return empty-handed with my mom and we rejoin my son and Dad at check out, I’m surprised to see two quarts instead of two gallons.

As we are driving home, I ask my son how he managed to guide my Dad to the sensible choice. He chuckles and just mentions that when my Dad grabbed the first bottle, he was surprised at how large it was and just said, “Wow, that looks like a really huge bottle.”  My dad agreed, put it down and followed my son’s advice on which bottles to buy.

Out of the mouth of babes!  Blessed. 

Enter Adult Protective Services.

When the social worker mentions that the hospital was prepared to call Adult Protective Services (APS) because they were so concerned about my parents, it initially sends a chill up my spine.

We are trying to help my parents, we know they want to stay independent, but they are unable to do so safely anymore. Now they are getting themselves into situations where others are recognizing their state.

I ask her what it means to have APS involved. Might this be a good lever to help my parents make a choice to get some assistance? She suggests I call and just ask them.

When I call APS, they ask if I want to file a report. No – I just have a few questions. I let her know I have two elderly parents and I’m concerned for their safety. How could APS help?

I’m told that they first and foremost respect an individual’s right to choose how they live. Their goal is to protect the elderly against fraud, abuse and neglect. In my parents’ case, it might qualify as self-neglect. However, she continues, they have every right to refuse assistance.

I was hoping this was an option since the only other one seems to be to wait around until something bad happens. This choice is not ours. Undeterred.