What’s Right For Mom? Assited Living vs Assisted Memory Care Communities

movingdayI’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:

  1. 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.
  2. 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.”
  3. 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.
  4. 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. 

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. 

Getting my parents to lunch

supportMy parents are now in Assisted Living which has removed pounds of worry in regard to my parent’s safety. This was a difficult transition since my parents did not recognize it was needed for a variety of reasons. 

With this new stage, we have a new set of needs and issues to manage. Thankfully, we know they are in a community designed to support them, but it’s not perfect left to run by itself. Being involved and working with the staff is an important skill I’m working on developing. I’m working through how to identify and manage those needs while also respecting my parents need for independence and privacy.

The first two months were freeing, but I’ve recognized some gaps that need to be addressed … like making sure my parents are eating their meals. Their apartment doesn’t have an oven or even a microwave, so the community provides all three meals. I take my parents shopping weekly and I know they are going through two loaves of bread a week.

When I brought this to the attention of the staff, they confirmed that they stop by to let my parents know when meals are being served.  There are two meal halls, so making sure my parent’s eat each meal isn’t as easy as it sounds. When I ask, my mom tells me they have only paid for one meal, so they choose to eat a sandwich in their apartment. I’m losing the communication battle on this one. We have discussed how nice it is that the community provides all three meals since my mom has no interest in cooking, but the concept doesn’t stick.

I stopped by to discuss it with the director since the simple reminders aren’t working. She shared that the staff reports that my dad wants to eat, but my mom keeps pulling him out of the meal hall. We chat through some strategies on how to get them to eat in the meal hall. We discuss letting them know of an empty table by the window that is reserved just for them as well as having the floor staff rephrase the announcement of lunch being served into an invitation to have a free lunch.

I’m glad I have trained staff in place that can help us figure this out. Supported. 

The sale of the town house is really awful timing

splitheartMy parents have just been told they are being moved into Assisted Living in two days. No one said a word as we walked back from the meeting, but as soon as we walk into my parent’s apartment in Independent Living, my mom erupts. “We are moving out. Let’s get our bags and go now.” My dad tells her “No, I’m not going to fight it.”

My parents disagree. Only a few times in my life have my parents disagreed in front of me. I should say, has my dad disagreed or contradicted my mom.

On the way back to the apartment, I texted my brothers and told them to please come as soon as possible. My brothers shortly arrive and my mom tries to tell them what’s happened. She hands them the letter.  “The sale of the town house is really awful timing,” my mom laments. She decides that she will just move into a hotel for now until they find a new place.  E, the brother who just spent the last week with them, tells them why he agrees with the move. This just makes my mom angrier and the conversation escalates into the illogical zone.

She’s unhappy with the fact that the three of her children support the decision made by the retirement community. She makes a variety of statements and demands about the situation. My siblings and I are wondering how we are going to make it to move day – and it’s only two days away.

I turn to my dad and ask him what he wants to do. He says he will be moving into Assisted Living in two days. Divided.