No one wants to put a loved one in memory care. However, deciding on how to care for your parents is a daunting decision. When I knew that my Dad would be going home from the hospital into hospice care, I had to find people to look after both my parents. The first challenge was finding a company on short notice; the second explain the new normal to Dad.
Dad had been in the hospital for 32 days because we found him groggy and completely confused about what day, month, and the year it was. After those 32 days, he knew he had a gap in his memory and was eager to fill it back up.
Unfortunately, in less than a week, he fell, hitting his head. I knew then that it was time to honor his advanced medical directive. Thankfully, the doctors agreed. All of this took place simultaneously; my sister and I were bouncing Mom around between homes.
Understanding the Challenges
Mom was bounced from her home to my home, over to my sisters, and back again. That was not an ideal situation for any of us. Mom never really understood what was going on (advanced Alzheimer’s will do that to you). All the bouncing around made her confusion worse.
We were also dealing with her dog, who started showing signs of anxiety, which is understandable in those crazy circumstances. The stress level of everyone was not sustainable.
While Dad was on hospice, we had a variety of caregivers. Employing the caregivers gave me a window into what Mom’s life might look like post-Dad. You could categorize the caregivers into three groups. We had a couple that were outstanding. They took care of daily living for both parents, coordinated with hospice, and made life as easy for us as possible.
The largest group is probably the most common—very caring people (usually women) who did a lot but not more than necessary. They cooked, did some basic cleaning, and made sure my parents didn’t die from some calamity. Essentially, they were excellent parent sitters.
Then there were a couple that could not handle the challenges posed by my Dad; he did not think he needed help, did not want help, and rarely allowed himself to help. That was a sign of things to come.
Take Time to Plan
During this time of hospice and 24-hour caregivers, my sister and I came up with a plan for caring for Mom going forward. To say my sister and I don’t see the world the same is an understatement. When I started feeling our “plan” wasn’t something I could remain comfortable with, I knew I would have to find a solution for Mom’s care and then slowly ease sis back on to the same page with me. No easy feat.
I became uneasy about our plan when I allowed myself to think about the absolute, worst-case nuclear disaster type situation that could happen under our plan. Immediately I started seeing all kinds of landmines. Maybe it’s my generally pessimistic nature; however, the more I thought about the years ahead, our plan seemed less than ideal.
At the time, I lived 1 mile away from an assisted living/memory care residence. My husband had stopped in for a visit while Dad was still in the first month of his hospital stay. Hubby arrived home looking like he’d seen a ghost. We didn’t have to have a conversation about his opinion because he made it clear. He said, “I’ll never put your parents there.”
Obviously, not a ringing endorsement. When I found myself a month and a half later re-thinking our plan, I didn’t even tour the place myself. I did what most modern people do. I Googled for care homes and residences near me.
Give Yourself Time To Research
There were two board & care homes in my neighborhood. Initially, I leaned this way for a couple of reasons. First, they are generally about 30% cheaper than a memory care residence. Since Mom had just turned 74, making sure she wouldn’t outlive her money was paramount. Second, if she was in my neighborhood, I could pop in for a quick hi whenever I was out. Either cycling, walking the dogs, or headed home from wherever I could stop in for a short visit.
My two main concerns about board and care homes were simple. They are not generally secure for someone with advanced Alzheimer’s, and I worried about her walking away and getting lost. Secondly, I had no idea what we’d do with her dog. Because of both parents’ chronic illnesses, the dog was grossly overweight and far less obedient than she needed to be. She was good for my Dad, but obviously, that wasn’t going to be useful for much longer.
You’ll Make the Best Choice Possible
Knowing what I know now (that Mom wouldn’t live as long as we expected), I wonder if the board and care home would have been a better option. Would I have popped in like I thought I would? I want to believe I would have, but with a board and care home, that also may have been necessary.
Never to make snap decisions, I kept looking. The only other community in my town did not have a memory care residence, so I had to expand my search a bit. In the next city over was a beautiful community that I liked a lot. Touring the memory care residence made it evident that they would do more for my Mom than the board and care homes could.
Trust Yourself
Because of the courtyard in the center of all the rooms, there was a lot of natural light. The rooms were spacious, and the staff was friendly. When they told me Mom could keep her dog, I couldn’t give them a deposit fast enough.
So much for not making snap decisions. Honestly, I believe “going with your gut” can be a good thing as long as you do a little bit of research. When they told me that Mom could keep her dog, I understood that they were interested in her well being. They were looking at her (before meeting her) as an individual.
That was the most critical factor in making my decision. The activities available along with other residents for companionship made their case even more substantial. There was even another memory care resident with his own two dogs!
Mom lived in this residence for three years and two weeks. It was a much shorter time than we could have imagined. The entire time she was a resident, she was always treated with respect and as an individual.
Trust Yourself Despite the Challenges
The first couple of months after she moved in were rough. In all honesty, it would have been a lot better off for all involved had Dad understood his need for assistance. They could have moved to assisted living together, which would have made her transition more comfortable.
Waiting until someone is so far into their Alzheimer’s journey to move them is difficult and upsetting. Once Mom got acclimated, she started trusting the other residents enough to be friends.
I will never forget the first time she referred to another resident as her friend. It was like hearing I’d won the super lottery. Things were pretty reasonable for the next couple of years.
Mom would frequently hang out in the courtyard with another resident who was also named Diane. They were a lot of fun together! On occasion, I would take them out together. People thought I was nuts, but it was easier because they talked to each other. Neither of them minded when the other would repeat themselves. I would find it a little entertaining when I listened to them. Their reality was an unusual place to visit.
Sometimes. The Good is in the People
Eventually, a third resident named Diane joined them. Talk about confusing! We had Diane, other Diane, and other-other Diane. They hung out together for a few months until other Diane started getting paranoid. Eventually, Mom and other-other Diane were hanging out together.
I found it interesting that other-other Diane was less advanced in her dementia than Mom, but she progressed a lot faster. Eventually, she seemed to forget that she & Mom were friends.
This change was about 15 months before Mom died. She seemed to socialize with other residents, but she wasn’t as close to them as she’d been with the Diane’s. Looking back, I’m reasonably sure that some of this was because of her progression with the disease. The last 11 months of Mom’s life kept getting more and more difficult.
Be Part of the Team (not just a visitor)
Mom was getting more combative and less willing to accept help. The caregivers put up with a lot from her. I did all I could to find solutions, but honestly, it was like chasing water down a drain. This caregiving teamwork can genuinely enhance the benefits to all involved.
Being unaware of how far along Mom was in her Alzheimer’s progression made finding solutions a challenge. Not understanding what was right in front of me is shocking. Hindsight being 20-20 isn’t the easiest with which to live.
Knowing that Mom was well cared for is an excellent 20-20 hindsight vision. Looking back, I’m 100% comfortable with my decision to select memory care. Mom was as happy as she could have been. She was safe and secure with a staff that remained pretty stable over the years.
Manage Changes Carefully
In the long run, what mattered was the paid caregivers, and the family was a team; despite there being a mandate against visitors during the COVID crisis, we were allowed to see her before she died and the day she died.
What you need to consider when choosing a loved one is whether or not the choice works with you as the team captain. Once they’re settled, it’s challenging to move them into a new environment. Knowing it’s important to find care that will become part of your team.
Stability and familiarity are essential for people living with Alzheimer’s. It’s vital for the caregiver too. My final thought for you is to seek out options early. At the same time, they can change and likely will. However, the more you’re aware of your choices, the easier it will be to make a final decision when the time comes. The other final thought is not to wait too long. Everyone that has been through this will tell you that most people waited too long.
To choose memory care or to care for your loved one at home is a deeply personal choice. Some factors in my decision were because most adult children work. My sister still has kids at home, and mine had (finally) moved out. Knowing it would only be three years, I may have made a different decision, but I ultimately don’t regret the one I did make.
Related Podcasts:
Age In Place Or Assisted Living _-Things to Know
