The community where one of my clients has been living happily for over a year, sent me a note about new cases found and the process they were going to take to test everyone. This morning I learn that my client is one of 17 residents who tested positive today and my heart breaks. My colleague was going to visit because we have noticed she has been a little down lately.
No wonder. Many of us have seen the report that isolation is as harmful to us as smoking a pack of cigarettes’ a day. Forbes just shared the grim statistics of community residents across the county. “90 percent said they never left their campus, 60 percent said they never even went outside their building to take a walk, and more than half said they had no access to any activities within their facilities.”
In the beginning, we noticed that the forced lock-down actually benefited “Susan” because she was finally meeting and spending time with the other residents. However, when they went into full lockdown, where they have to stay in their rooms ALL DAY LONG, and eat their meals alone in their rooms, we can hear the sadness in her voice when we call.
This time I am going to start a silly postcard campaign so that she is at least getting a note and knowing that we miss her. We are all calling her too. Her family doesn’t live nearby so phone calls help. However, nothing is worse than being sick alone … AND too sick to even answer the phone.
I sure hope that she ends up with a mild case. While she is in her 80s, she has very few other pre-existing conditions besides mild-cognitive impairment.
Please send me a note if you have any other ideas on how best to help those isolated during quarantine, and even worse, all alone as they fight COVID. Asked.
I still recall the three days before my parent’s were moved from Independent Living into Assisted Living at their Continuing Care Retirement Community. Because it was a “life care” community, we didn’t have to do the community search. However, the idea of moving them from their 1,800 square foot apartment to about 500 square feet made me physically ill. My Mom was vehemently against the move and threatened to move out. The community forced the move because they were now a danger to themselves and others.
I called in my siblings to help with the move and they all rallied to support this transition.
I still was sick over the guilt I felt knowing my Mom didn’t want things to change. I understood, but also knew I couldn’t keep plugging the holes in their day-to-day routines they could no longer manage. What surprised me the most was how happy my parents were after the move to the MUCH smaller apartment.
What I see today are a host of confusing choices for families to make. There are now at least 10 new memory care communities that are offering hotel and spa-like amenities in our metro-area. They are lovely communities, but the room size and the counter finishes should be the last thing you consider when you make a choice for a Memory Care community.
Here are my recommendations on the key steps to take:
Tour the community at different times.
Breakfast: How do the residents look? Are they dressed and is their hair brushed? What is the vibe of the room?
3 PM: Is there an activity going on and how many of the residents to you see? How many are gathered around a television? Do you see a lot of the residents sleeping?
6:30 PM: After dinner when many residents with memory issues might be agitated.
Do the employees know the residents? As you tour, do you see the employees engage with the residents and do the residents respond when spoken too?
Is there a Family Council? Does the community respond to requests from the Family Council? Ask to speak with the President to understand how the community addresses issues. There are always issues, so ask for the President to describe something recently they raised and how the community responded to it.
Ask how they deal with end-of-life and how many of their residents did they lose in the past year?
Find out how many residents they have discharged? We have a community that sends the residents with behavioral issues they are unable to control to the hospital and they decline to allow them back into the community leaving the family in a lurch.
Do you like the soft side of the community? That is what matters when you have someone with dementia who can’t be their own advocate.
You need to do your due diligence. I’m seeing families fall for the allure of the facility and skip the real meat of understanding how the community engages with and cares for the residents. They have a good spiel and the community is lovely, but what you need to learn is how do they care for those living there. A year later, I see families frustrated and unhappy with how the community is responding to their loved ones needs.
I fell in love with the community representative when we moved my Mom (see link to those postings below). When she moved, I noticed the difference. She had a unique connection with my Mom. Luckily, the Executive Director for the community was engaged and had made a connection with my Mom as well. However, staff changes and it’s a testament to those communities that have employee longevity.
Don’t be swayed by the granite counter tops and larger rooms. In my experience, more space wasn’t necessarily a good thing for someone living with dementia. Look for the communities with good track records, and where you see the staff truly engage with their residents and that have residents that respond. That is the real testament to good memory care community. Advised.
A few older posts on my journey to find the right community for my Mom.
A 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.
Beauty products have been referred to for decades as “Hope in a Jar.” I feel that same desire for memory loss cures and prevention. However, the scientific studies continue to find time and time again that none of the promises made by the supplements are working.
What a recent story from Consumer Reports suggested to do instead:
Brain Workouts. Do something that will “enhance reasoning and memory-abilities” like learning a new language. They report that training can help processing speed and reasoning, but made sure to exclude “computerized brain games” from this recommendation.
Exercise Your Body. Physical activity can delay or slow cognitive decline, but not prevent it. I noticed for my Dad with Alzheimer’s how much better he did day-to-day when we got him to the racquetball court. I think most of us recognize the feeling of well-being we get from exercise, even though we may curse it while we are in it.
Manage Blood Pressure. Reducing your risk of heart disease and stroke help since they are major risk factors for memory loss.
However, I do see reports and hear from my colleagues how some new treatments are showing some promise with their clients. As I interpret it, the idea is to basically clean your body of toxins that might be impacting your memory. After seeing the number of kids with nut-allergies mushroom in the past two decades, I have been wondering how the ways in which we package and store food and the products we use on our skin might be impacting our health.
I’d love to hear from caregivers if you have seen good success with one of these newer treatments for your loved one. Curious.
I’m excited, overwhelmed and hopeful that we will be able to move my mom who has dementia from her Assisted Living community to a community dedicated to Memory Care. My mom is in a Continuing Care Retirement Community (CCRC). My parents bought in back in 1998 and had an apartment in Independent Living until two years ago when the community terminated their Independent Living agreement which forced them to move into Assisted Living. It was stressful but resulted in my parents being in the community better suited to their care needs. We had tried to get them to accept help so they could stay in their Independent Living apartment, but they refused and Assisted Living was the only safe option.
After my dad died, my mom became very combative and disruptive. Whether this was the disease process or how her grief presented, I’m not sure. However, last winter we were told that if my mom’s behavior didn’t improve, we would be getting a 30-day move out notice. To help keep her and the other residents safe, we were required to hire personal daily assistants (pda’s). My mom still would not accept help from others and the people following her around usually just frightened her and made her angry. I got several calls from lifelong friends in the community that my mom was really struggling with the people who were “following her” around.
We went through several pda’s, but one of them has been with my mom now for a year. She was able to gain my moms confidence by being patient and positive. While my mom still doesn’t know her name, she willingly allows her to help now. My mom ended up in a wheelchair after her steep decline. She just lost the strength/confidence she could walk. The wheelchair has forced my mom to accept help from others and most days she is gracious and accepting of the help to dress and toilet.
My mom has always been active and needs more stimulation. After I got the “move warning”, I started the search for a new community. I quickly realized that a place set up to help a variety of individuals with the activities of daily life (ADL) was not best-suited to serve someone with dementia.
The things I realized were different included:
Menus – In an Assisted Living community, my mom is presented with a menu and asked to choose her meals. The act of choice was overwhelming for my mom so I have the pda’s select her foods based on her preferences and food is just offered to her.
Personal Care – I have had to intervene to get my mom showered, her hair done as well as clean and clip her nails. These things are scheduled and occur on a regular basis so mom will be better “kempt.”
Activities – The variety and regularity of activities are endless in a community dedicated to memory care. My mom’s community implemented a program from 9 a.m .until 3 p.m. that worked for a while, but as soon as 3:10 arrived, mom was bored and wondered what she should be doing.
Acceptance – My mom will now be with other’s that are in a similar situation and she won’t feel the looks, hear the whispers or feel the judgement from those that don’t understand dementia.
There are quite a few other differences, but until I started looking, I didn’t realize how all of these small things would really help my mom continue to feel connected and useful. I recognize it now, and am looking forward to completing this move. Anticipated.
My Mom is sliding into the deeper grasp of dementia. It is surprising to many people (and often to me) how one moment she can be so lucid, and the next, totally disjointed. She continues to try and join in the activities of the Independent Living community she was a member of for over a decade. Now, she’s confrontational and many of the residents are complaining. It’s sad that the community can’t deal with her, but even those that are well-trained are having a hard time re-directing her when she gets aggressive.
In my Mom’s community, Assisted Living is a hallway away from Independent Living. Now that my Mom’s full-time companion, my Dad, has passed, she is alone and really having a hard time finding a footing. The dementia is making it impossible. She’s very lonely, but on top of her grief, she is unable to make new friends and her friends are finding it hard to engage her now too.
Mom founded many of the bridge games and loves to play, but she can’t remember, nor does she recognize that she is no longer running the games. She’s short-tempered and rude with most of the other bridge players — a concept that would horrify the woman who raised me. However, this is the woman most of the bridge players see and don’t know the caring woman that formerly inhabited my mother’s being.
The doctor changed her medication and added the Exelon Patch (to help cognition) and Risperdal (to minimize anxiety and paranoia). They also asked us to hire personal assistants from 1 to 9 PM daily. The first two weeks went well and then things fell apart. The doctor is increasing her dosage and we have replaced the assistant that worked on the days I noticed my Mom having the most trouble. Risperdal is an off-label prescription and when we first got the recommendations, we did our research and gulped as read the side-effects. We have to try something new, because now, she is not doing well.
The current options outside of increasing her medication:
Move her to the section of Assisted Living and put on a Wander Guard. This prevents the doors from opening and the elevator from working. I can just visualize my Mom banging on the doors and confronting anyone that tries to use the doors if they don’t work. Both the AL staff and I don’t think this is the right solution.
Check her into a psychiatric facility so they can treat and manage her dosage and find the right mix. This could be a 2 to 3 week visit. The change is living arrangements alone will confuse and frighten my Mom and my biggest fear is that they will medicate her into a submissive state and she will return to just be admitted into the lock-down memory community.