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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

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Embracing the Suck of Dementia

embrace he suckApparently, this is a term that is familiar to those that have served in the military. As an Army brat with continued ties to my extended military family and familiar legacy, I hadn’t heard this term, but adore it’s simplicity and application for caregivers. In short “embrace the suck” is meant to convey that things won’t be easy, but others have been there and now it’s time to deal with it.

I remember having this sense at varied times during my own caregiving journey.

  • As I took over the finances and was feeling overwhelmed by the task, I recalled when Mom fought to maintain her checkbook and was indignant that we suggested she couldn’t manage.
  • When I found my Dad’s key wallet in my own key drawer, I reflected on how difficult it was to get them to stop driving. The DMV had rescinded their licenses yet they still kept driving. I watched as my Mom tore up the letters notifying them. Neither of them remembered being notified and thought I made it all up.
  • When I brought out a deck of cards to play with my Mom, a Bridge Life Master, and she had no interest in playing.

For all of those times when I feared for their safety and well-being, there was a moment when I recognized they no longer could or cared to try to fight for their independence. Those were the times when “embrace the suck” applied for me. My thoughts moved to new ways to engage with the individual in front of me that I often no longer recognized as Mom and Dad. Embraced.  

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The finality of the funeral

funeral (2)

Arlington National Cemetery does a fantastic job of burying those individuals who have served our country. I appreciated the time between the passing of each parent and their burial. However, it was hard to help my Mom who had multi-infarct dementia remember that Dad had passed away.

Her calls asking me to give her a ride to visit Dad were heartbreaking. I broke down in tears on the first few. I eventually found a way to choke out a response that didn’t end in both of us crying on the telephone. I was thankful that for whatever reason, we had taken a picture of us (mom, me and my three siblings) around my deceased dad in his hospital bed. I printed that gruesome picture and posted it in my Mom’s room with a note about the event so she had a reminder that we were all there together. She was ready for the burial service once it arrived.

I was relieved to pass the burial milestone for both parents. I knew it meant I could finally finish the long grieving process that began when I recognized that their dementia’s were stealing them away from me bit-by-bit. The reality that we have to watch as well as care for our loved ones with dementia is a cruel fate for everyone. May we one day have a cure for the sneaky beast called dementia. Hoped. 

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My Mom Hated the Hospital

Ihospital guess I should have realized this years ago. However, it didn’t really hit me until Mom was in the ER after she fell and broke her hip. She was frightened. At this point, she’d had another minor stroke and did not know who I was. Attempts to give her peanut M&Ms to soothe the misery resulted in me digging them back out of her mouth when she didn’t seem to know how to swallow the chewed up candy.

Today is my son’s 21st birthday, and it is dawning on me that I should have picked up on this years ago. On day 2 of my labor, my dad shows up at the hospital wondering what is taking me so long to deliver my son — my mom was no where in sight.  They usually always traveled as a pair.

A decade later when Dad fell playing racquetball and broke his hip and needed surgery, my Mom forbade me to visit him in the hospital. After she got him checked in, she called to have me pick her up and take her home. I thought it was bizarre that she wasn’t staying through the surgery and when she found out I went anyway, she made my sister call and yell at me.

I’d been to medical appointments with her and she was always aloof and dismissive of any medical issues I thought she should be sharing with her doctor. Looking back on all of her reports that she “passed” her physical, I have to laugh at my inability to recognize how much my Mom despised the hospital.

As I approach  what would have been her 87th birthday, I’m relieved she is free of this earth and the dementia that stole her away from us piece by piece. I’m also humbled by my total lack of insight and only hope what I learned will come in handy as I work to give back to others who are engulfed in their caregiving journey’s.

We are doing the best we can with the information we have. Your loved ones are lucky to have you working for their benefit. Keep up the good fight. Admitted. 

 

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What to do if my siblings won’t help?

barney-stinson-self-five

Do what you can to support yourself.

A reader made a fair point when I posted I’m Overwhelmed and my Siblings Are Not Helping (Thank you Monique).

My siblings helped … eventually. I felt very alone the first few years when they didn’t see the issues I was seeing regularly because I was the only one that lived near my parents. I start from the premise that if you try, you may find that your siblings may join you. So first, I hope you will give them the chance to step up by over-communicating and for asking for specific help.

I had given up before my siblings stepped in and bonked me on the head to reengage.

Should your siblings fail you, do the best you can and move on. We can only control what we do, and the job you have is difficult enough. If you are in this place, my suggestions are to:

  1. Find a local caregiver support group. Go online and search and you will be amazed to find support groups for children, spouses, and even by diagnosis.
    • Try the Alzheimer’s Association, they usually offer all types of support groups and you search by zip code.
    • Contact your county Area Agency on Aging. They should know of some local resources.
    • Contact the local retirement communities, assisted living, and memory care communities — they usually host the support groups and know what is offered locally. Usually someone in the sales department can help you.
  2. See if there is a local village that can help your loved ones and provide recommendations for local vetted resources.
  3. Contact an Aging Life Care Manager.  Nurses and social workers by training, these individuals can help navigate health issues and find quick solutions to care needs. While they do have an hourly rate from $150 to $200, they might be able to find a solution to something that might take you days and weeks to navigate. You don’t know what you don’t know and it’s nice to have an expert on aging in your back pocket.
  4. Meet with a Daily Money Manager. They typically specialize, and you will want to find one that serves seniors. I have been doing this service for other families after my caregiving journey ended. I focus on the financial issues like paying bills, reviewing invoices, and maintaining the home and reporting back to adult children who aren’t near mom and dad.  I find that within the first month I find a variety of ways to eliminate robo-calls, save hundreds of dollars on unused services, and even access unused benefits for care services. I can also make a direct introduction to the right solution, be it a personal care assistant, elder-law attorney, or auction house.
  5. Tell your siblings what you are doing and offer a summary of accounts … and oh, yeah, compensate yourself for your time if you are able to do so. The reality is that caregivers on average give up over $324,0044 in lost wages and retirement compensation. My husband and I added in compensation for those individuals who are supporting us a DPOA and trustee — and are working toward ensuring that we can afford to compensate our loved one for stepping up because we know it not only can result in lost wages and opportunities, and is a job that would be compensated if we hired someone to do it for us. Thanks for your comment DW, I can’t believe I forgot to include this!

Whether you are an only child, or your siblings have let down mom and dad and aren’t stepping up to help, find ways to support yourself in helping your loved ones.

I regret not bringing in more help when Mom was alive. Instead of spending time following up with the community nurse, I could have been out enjoying a meal or and event with my Mom.  Hindsight is 20-20. Reflected. 

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I know I shouldn’t give to door-to-door solicitors

On a visit with a client whom I help manage the checkbook, we found a charge on the credit card we couldn’t identify.  When we called to find out what it was, it was for a political group that championed the environment. Knowing my client loves the environment, but is also a card-carrying Republican, I asked if she could tell me which party the group most affiliated with. She replied “we are Democrats.” I could see my client straighten his back as he adjusted uncomfortably in his seat.

I asked how they got his credit card information and she shared that they had canvassers in the neighborhood and my client gave his credit card and offered a monthly donation of $100.  We requested to remove him from the monthly donation program and all future solicitations. I asked my client if he wanted to contest the initial charge and ask for a refund, but he declined.

When we hung up, he stated “I know I shouldn’t give to door-to-door solicitors.”

We all know it. But it’s easy to get caught up in the exchange. My client lives on his own,  no longer drives, so having a passionate individual knock on his door and talk about how we can help the environment can be incredibly appealing. He also has cognitive impairment and too easily writes a check … as we have experienced with several service firms that overcharged him lately.

The reality is that there are many service companies that have predatory practices. I have seen lawn companies in our area charging thousands of dollars for lawn care, plumbers that charge $500 to unclog a toilet, and HVAC firms that scare clients into replacing equipment before it’s needed.  This isn’t just an issue for individuals living with cognitive impairment, but for all adults.

If you are concerned your loved ones are being taken advantage of, I hope you will step in to help.  For this individual, we have set up approved vendors who know that we require an estimate and joint approval from his daughter in advance of any work. I will stop by on those visits with new vendors or during the visit to estimate the costs.

If you know someone who has been victimized, you should report it to the police as well as contact Adult Protective Services. Advised. 

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Decisional Capacity and Dementia

NAELA version 3 16A diagnosis of cognitive impairment or even dementia does not mean that the individual has lost their ability to make or change estate plans. Start with the doctor who diagnosed them and ask if they can write a letter documenting their assessment.

We had an awesome geriatrician that got involved with my parents. He told me to get their plans updated immediately and wrote a letter stating that they still held decisional capacity. My parents did know and understand that we needed to update their plans.

Because we did not know how long we would need to care for them we insisted that all four of the adult children were named in the Durable Power of Attorney. The lawyer suggested against it stating that we should name one and have secondary, tertiary … However, we had that initially, and since my sister was listed as the primary, and me as the secondary, trying to get it recognized was headache inducing. I was the local adult child so needed to be the primary. I had to bring her resignation, then they often wanted to contact her. It just created more work when I was already overwhelmed.

We also had the benefit of caring for our parents in a unified capacity for nearly two years and have navigated a variety of bumps in the road. Should I move or die, I wanted to make sure one of my siblings could easily step in to help my parents.

Estate planning for incapacity is difficult and there are many landmines. I hope you find that you still have options even when dementia has been diagnosed. I also suggest you get a referral to a lawyer that specialized in Elder Law. You can do a search on NAELA.  It’s complicated and should your loved one lose the capacity to make decisions, the last thing you want are plans that fail. Recommended. 

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