What to look for in a Memory Care Community

happyincommI 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:

  1. 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.
  2. 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?
  3. 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.
  4. Ask how they deal with end-of-life and how many of their residents did they lose in the past year?
  5. 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. 

Your Mom is Not Doing Well in Assisted Living

What is Right for Mom? Assisted Living vs. Memory Care

Flirting with Normal

How Activities Benefit Individuals with Dementia

Mom Would Never Dance if She Living with Me

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. 

 

 

 

 

How do if know if a community is a safe place for mom or dad?

MemoryBanc Daily Money Management Services
MemoryBanc offers practical assistance to age-in-place.

My parents tried to get ahead of having one of us choose a community to help with their care. The bought into a Life Care Community in 1998. However, they never really wanted to live there.

It got comical when they told us they didn’t want to really move in yet because that is where all the “old people” lived. My parents were in the mid-70s and treated the community as a vacation home and went on weekends.

I recently heard a statistic that the average age of those that move into retirement communities are now in their 80s. Most people want to stay in their homes as long as they can. However, I also see the isolation of those who lose a spouse or just withdraw from their network of friends. For those that give up the car keys, it gets harder to stay connected. Those are most of the clients I work with and I understand the tension between aging-in-place and moving to a community. The answer is different for everyone.

As Dr. Gawande simply states in the best-seller “Being Mortal” — many of us want safety for loved ones while those we are helping, want purpose and meaning. However, it’s hard to know if the community you are looking at is right for your loved ones.

A recent news story in our local paper shared that dozens of nursing homes in Virginia were fined for violations. It’s heartbreaking to know that many individuals who are at their weakest are not getting the kind of care their need. Unfortunately, it is a reality of the industry and one that means that family and loved ones need to be vigilant and be the voice for those that can’t advocate for themselves.

When I needed to find a different community for my mom who was a very active woman with moderate dementia, I hired a local aging life care manager from Caring Considerations. They helped narrow down my choices and my siblings and I had the opportunity to tour and select the one we thought was best for mom.

The reason to hire someone to help with this are many. First, online community locators are compensated by the communities they send you for the leads they produce. I wanted an impartial expert to help me find the right place for mom.

I have also referred some families to the senior community advisor that serves my local community. They are compensated by some of the communities they refer to, so I suggest you a schedule a call to learn more about how they can help you and how they are compensated.

You want to know about how the residents and their families have found the community. Most aging life care managers and senior advisors have clients living in the communities and have an inside view.

The final reason is that you will want to know if there are violations. You can search for the ratings on Nursing homes on the Medicare site here.  Unfortunately, this is only for the skilled nursing, so having someone who knows about an Assisted Living or Memory Care community can help offer some additional comfort to a difficult choice.

Even the top communities aren’t able to staff to meet all the needs of their residents. It’s a shame to know that we haven’t figured out how to compassionately meet the needs of our elders. Aging Ain’t for Sissies. Considered. 

When More Translates to More Options for Failure

holeinnetI visit my mom in her community two to three times a week. There is usually one medical or care issue to follow-up on or navigate. We’ve been monitoring some minor issues with a focus on keeping mom as happy and comfortable as we can. I was planning on a social visit with mom today but arrive to find that her personal care assistant (PCA) is no where in sight. Mom is sitting in the living room staring at a soap opera on television when I arrive. She is dressed, but her hair hasn’t been combed yet and it’s 1 P.M. I brush her hair and take her into the community room to join in the afternoon activity. After joining in the games, I realize it’s 2:30 and I am concerned that I haven’t heard from her regular PCA and send her a text. She lets me know she’s home with a sick son, and apologizes for not texting me.

It’s not the job of the PCA to tell me mom doesn’t have an assistant today. I call the agency to understand why no one has communicated with me. Excuses are made, but I’m just mad. In addition to having mom in a community dedicated to memory care, we pay for the extra assistant to ensure mom is dressed in the manner she prefers, cared for, and happy. Now it just feels like I have more people to follow-up with to find out why no one seems to be on top of mom’s needs right now.

I follow-up with the community and learn that the agency called the head nurse, but none of the staff on my mom’s hallway knew. I’m not sure I’m okay with them parking her in front of a soap opera. I think they should have gotten mom to the activity room. I check my feelings and let the staff know that they should include mom in the activities.

While I love the concept of “many hands make light work,” today it feels like because so many are involved, no one seems to feel responsible.

Mom was fine. She’s safe, fed, and doesn’t complain. It’s my job to be her advocate and I wonder if this has happened before and I never knew about it. It makes me feel like I’m failing in my duties.

My hope was that more resources would help build a stronger safety net and today it feels like I have one with more places for failure. Disappointed. 

Finding the Right Villagers to Help Mom Age

hairfountainI am the local family caregiver, and have been for at least five years. I realize when I talk to someone new on this journey how long I’ve been in this role and how many ups-and-downs we have weathered. While my parents have never lived with me, there are a host of issues to face when your loved one is in a care community.

I recently reconnected with someone who worked in the Continuing Care Community that my parents selected in 1999. My parents never seemed to make the full transition citing the residents were just “too old.” As my mom’s dementia progressed and we were really struggling to know how to help, there was one woman who my mom gravitated toward. In turn, so did I. She was always positive and even checked in on my parents when they moved out of “her” section of the community. When she left for a new opportunity, I was bummed. She could always give me an “on the ground” report of my parents which no one else in the community provided.

Currently, I am working through my expectations and desires for mom in her “new” community (she moved her last January). It’s one of the top-rated in the area for the care of those with dementia, however, we have hired in extra help for mom. When she transitioned last January, she was in hospice care. She was too weak to stand, toilet, dress, or even sit up. We knew having someone with her would help her transition, ensure her needs were immediately attended to, and make mom more comfortable in her new community. She’s since graduated from hospice. However, we are paying fees for the personal care assistant (PCA) on top of the monthly community fee which total more than $13,000/month. I am working to whittle down the extra assistance so we ensure mom’s funds can cover her care for the coming years. However, I treasure the safety net of the PCA. I can get a personal report on mom as well as know that someone is attentive to all of her needs and my expectations for her care.

On the days when her personal care assistant (PCA) comes in after lunch, sometimes mom doesn’t look as good as I think she should. On a recent visit her hair was up in a fountain on top of her head and the rest of her hair was still matted from sleep. I brushed out her hair and wondered if we cut back further would I feel guilty on the days I didn’t stop by to comb her hair? I have watched the staff do many caring acts for the residents, but also know some days they can be overwhelmed by all the care needs.

I understand my guilt over these choices are first-world complaints to those of you who are, will or considering caring for your loved ones in your home. But having a loved one in a community also brings different emotions, choices, and challenges.

I’m working to accept that there are no perfect solutions. There is just the solution that works for you and your loved one for the time-being.

I work to connect with the staff at the community and ensure they know that mom would never wear her hair in a fountain on the top of her head, so let’s use a head band or hair comb instead if need be. It’s a never-ending task because the staff does change and quite frequently. I just keep reminding myself that for now, this is the right option for mom, even on the days it is not perfect. Practiced. 

 

Mom would never dance if she lived with me.

I have an ongoing battle that rages on in my brain about where mom should be. I wonder if we should have moved her in with us, but recognize that caring for my parents has already overshadowed some major segments of my life. I want to do what’s right by her, but also want to be a parent that’s available to my children. Since I was a teen, my mom had told us she never wanted to live with us or be a burden. Now that she has dementia and my dad is gone, I move through an ongoing cycle of joy, grief, frustration, guilt, and overwhelm.

We took time finding the right place for mom after recognizing the community that she was in wasn’t the best place for her and her changing needs. My mom’s primary care assistant told me about the gentleman that comes in to visit and that always dances with my mom. WHAT?

My mom was not a dancer and I was thrilled to see her get up and dance. That is something that would never happen if she lived with us. I continue to talk myself through why we made this choice and why it’s the right decision for mom. It was fun to see my mom dance. Revisited.

The Sneaky Poke and a New Connection

handforpokeI’ve had to make an adjustment to how I visit my mom. The community is dedicated to memory care so on any visit, I could be walking in to find a resident who is frantically searching for their dog and asks for my help, or one that has just decided to follow me and is trying to walk out the door with me when I leave.

I’m slowly getting to know the other residents. A few immediately made themselves known to me, but many of them don’t speak so it takes time to get familiar with the residents. On a beautiful day, we go outside to sit under the gazebo. One resident settles in next to us but doesn’t speak. A second resident walks by and we invite her to come join us. As she gets ready to sit, the first resident reaches out and pokes her right in the behind. I giggle and make eye contact with the woman who did the poking and she winks at me. She tries to speak but garbled words emerge but she continues to smile at her prank.

Thankfully, the second resident doesn’t mention it and joins as we discuss the beautiful weather. I saw how the disease changed my parents in two very different ways. Now I’m seeing a whole new host of behaviors. Some of the residents are delightful and always smiling and others are argumentative and confrontational.

For years, my mom swung between behaviors and I learned Three Go-To Tactics for Dementia Caregivers that served me well. I believe the lion emerges when she’s frightened and confused. We worked with her doctor to find a medication that would help as well as a found a new community that is dedicated to supporting those with dementia.

I grew up moving a lot and learned to take everyone I met as they are and quietly watched to see how they behaved. My habits have had to change and after watching dementia in my parents and in others, I don’t believe that man who repeatedly bangs his walls with his hands had a violent personality before or the woman who will come up and tell me to go sit down was bossy before dementia. It’s such a cruel disease that steals so much from all of us. Acknowledged. 

Recreating Familiar for Mom at the New Community

teacupThe actual move went off smoothly. I hired Vanessa Seifert with Squared Away Living to help me. She is a professional organizer, and has helped many families move loved ones into retirement communities. She packed up the items in the morning and by the time we arrived, Mom’s room was put together.

My mom is getting hospice care from Capital Caring and I had notified them of the move. When we pull up, her new wheelchair and bed are arriving. (I will discuss the whole complicated issue of hospice vs. palliative care on a future post.) I was most worried mom’s bed wouldn’t be here and had a back-up plan so she could take a nap if she needed one.

The personal daily assistant (pda) followed me to the new facility and will stay with mom to help her get settled. Since I haven’t managed transporting mom in a wheelchair, I was thankful to have the extra help getting her into my car. When we arrive, we are greeted by the marketing associate who helps us get mom to an activity to immediately engage her.

I spent some time in mom’s room finishing up picture placement and brought an iron. I wanted to make sure we had name tags in her clothes and knew some that we moved were unmarked.

The executive director comes to welcome me. We have moved my moms tea-cup collection and she expresses concern that other residents might come in and take them. I tell her this is more about having mom surrounded by familiar things. She then eyes the iron sitting in the corner. I see her expression and share that it’s mine and I’m putting some labels in mom’s clothes. She laughs and tells me that her mom, who also had dementia, had a habit of hiding knives in her bed. I assure her that I won’t be leaving the iron in my mom’s room.

It is comforting to know that the woman running this community has cared for a loved one with dementia. I’m finding that the deeper I delve into both the dementia and end-of-life community, the more passionate, experienced and dedicated people I meet. This journey certainly has changed my life permanently and it’s nice to be surrounded by others who have walked or are still walking this path. There is no quick fix to mom’s need and care, it’s ever-changing and complicated. I’m focused on her journey, not the destination. Comforted. 

The decision to move mom

WreathatGrave2014On Monday, we drove mom to her new community. I had help moving her things and before she arrived, her room was filled with her favorite paintings and family photographs. The staff at the new community immediately welcomed her and got her involved in activities.

We didn’t make this decision lightly.

My parents and my grandparents both lived in the community mom just moved from. They have lifelong friends who live there. However, my mom doesn’t remember or recognize them anymore. I know many people in the community and the change is a little scary for me too.

When my dad died, I received books on managing grief from some volunteers. In December, a group of volunteers went to Arlington National Cemetary and laid a wreath at my dad’s headstone and sent pictures and a note to my mom. My godfather would often deliver my mom’s mail and many of the residents knew her from the years of bridge groups that she ran. Several adult children of other residents would stop by and visit my mom. I will miss these things.

We were asked to let the community help mom make the transition and told that we shouldn’t plan on visiting the first week. Two of the women that supported my mom as personal daily assistants (pda’s) in her old community are on site and helping her make the transition. I feel like I did when my children went to camp. I hope my mom’s doing well and adjusting and that she is finding enjoyment in the new community. Wished. 

 

Dementia Caregiving: The things you can’t “unsee”

glovesEarlier in the year, I was interviewed on Huffington Post for a story on “Parents Caring for Parents with Dementia.” One of the other guests, Kathy Ritchie However, I’m starting to dance around the circle of the fire.

I’ve been visiting my Mom and working to use all the resources available to keep Mom “kempt.”  I had been doing Mom’s laundry — she would not allow anyone else to take it. She could do the laundry if reminded and done in parallel, but we rarely found the machine free so I would bring home the clothes and sheets and wash them. When my brother was here he added in laundry service hoping that will help keep clean sheets on my Mom’s bed and clean clothes on her back.  These are things that Assisted Living communities offer as services, but the resident has to be willing to allow help. Even though we have asked for the assistance, at some point the staff just gives up. As my Mom’s disease progresses along with the mood medication — she’s been allowing others to help in small ways.  I was thinking it was working, but realized the personal aide we hired in the evenings has been doing most of the laundry loads.

I will try to guide my Mom’s through showers and I schedule Mom’s hair appointments. The hair dresser my Mom has seen for years will go get my Mom and bring her to the beauty shop. Some days however, my Mom just refuses to go and I only know this because I show up and her hair has not been done. Most of the things in place are beyond the support for “activities of daily living” the Assisted Living community supports. It’s reminding me that our decision to move Mom to a community dedicated to memory care is the right choice.

When I arrive today, my Mom doesn’t have on any socks. When we go to her apartment, I find clothes and sheets in little piles on the bedroom floor. The sheets have been there for over a week. I made the choice to leave the sheets in a pile to see what would happen if I didn’t collect and wash them. I found out nothing would happen. Congrats, right?

My Mom and I collect all her clothes and go to the laundry room in hopes that the washer is working today and not in use. Luckily, it’s free. I start to pull out the items I found and realize that a few of her pants are soiled to the level of being disposed of … but she insists I wash them.

My heart breaks. My Mom has been hiding these dirty clothes. She knows something is wrong and was very anxious when I started to look at the clothes. She asks me to just wash them. I ask her to check the apartment one last time so I could clean out the clothes before putting them in the wash on the sanitize setting.

My guilt on the decision to move Mom is diminishing day by day. On the surface, it seems she is being cared for, but the dirty, difficult work comes down to me to manage. I’m thankful my Mom has the means to afford the community. However, there are still large gaps in the care we all expect. I move through waves of resentment and relief that my Mom is in this community. I want to be a loving daughter, but when faced with the dirty work of the caregiving job, I grow angry. Not with my Mom, but the reality that most of the communities are not fulfilling the pledge they made to their residents. I wonder what happens to all those individuals without a trusted and caring loved one to continue to advocate and support them. Saddened. 

Trying to keep Mom kempt

hairrollersMom is now sleeping in her clothes. When I’ve gotten her into the shower, I realize how hard it is for her to dress and undress. I understand that she wants to manage, but in this area, she won’t allow me (or anyone else ) to help most days.

I wonder if the days that she won’t allow me to help are days she doesn’t really recognize me anymore.

I scheduled a hair appointment but when they tried to get her to her appointment she refused to go. Maybe it would have been more successful if I was there. I can’t always be there when she needs to dress, shower and get her hair done. I hoped it would be easier for her community to help, but now it just feels like another reminder that Assisted Living isn’t the right place for someone with memory issues.

I return the next day and walk with my Mom to the beauty parlor. It’s just the next building over through one connected hallway,  and it takes us almost fifteen minutes to walk there. The lady who has been doing my Mom’s hair every other Tuesday for several years greets us and she says she can get her in this afternoon. She will come get my Mom if she doesn’t show up. I’m hoping that my Mom will go now that we have her scheduled with her regular hair dresser. I’m thankful that she is willing to go pick my Mom up from her apartment and already knows where she lives (having had to do this before). I write-up an appointment card and try to get my Mom to stick it in her pocket. She wants to hold it to help her remember.

When we get back to her apartment, she asks me what she’s doing today. I run through the activities. When we get to the hair appointment, she asks if we can walk there so she knows how to get to her appointment. When I tell her we just did that, she responds, “I hate this, I should know that we just did that.”

“I know Mom. It’s okay, you have lots of friends around you who will make sure you get to your appointment today.”

I have been working harder to coordinate with the floor staff. But I know my Mom will just sometimes refuse to shower, change clothes, get her hair done … it takes a village to age them, as well as raise them. Reminded.