I may be the only person I know who was excited to stay in a memory care unit for nearly a week and a half. After all, I am a healthy 52-year old woman. Yet I feel very fortunate for the experience, and I hold it dear to me.
So why did I do it?
My mother was dying. She had finally reached that stage in her 10-year battle with Alzheimer’s where she could no longer swallow. As the only daughter, I wanted to be there with her during this final journey, as she was freed from the clutches of this confounding disease. While it was excruciating to watch my mother pass, I developed a new appreciation for what goes on inside a senior living center.
As a family member visiting my parents weekly, I have always witnessed love and care from the staff. Yet like many of us, I have kids at home, a full-time job, a husband, and my own life to manage – so I’m not there every single day. After all, that’s why we employed a facility to take care of mom. This is to say that my appreciation for what takes place in senior care facilities has always been at a fairly surface level.
Because unless you live it, you really have no idea.
If you’re interested to go deeper, here’s what I learned.
It's Boring As Hell. Until It's Not.
There is a gentle rhythm to each and every day. Waking up the residents. Getting them dressed. Serving breakfast. Serving lunch. Serving dinner. Tending to residents’ needs as they arise. Doing dishes. Giving showers. Doing laundry. Getting residents ready for bed. Managing those residents who are nightbirds. You get the idea.
Every day is the same.
Every day is different.
And yet through the monotony, things happen. A resident sneaks out (or fights verbally and/or physically to get out). The fire alarms go off. A resident scuffle breaks out. A resident goes on hospice, or passes. The Activities Director calls in sick. A resident starts randomly yelling and becoming unruly. The electricity goes out due to a storm. You name it. It can – and probably does – happen.
Let me tell you, when these things happen it is anything but boring!
Caregivers will tell you that the mood of the group often follows what’s happening in the unit. If someone is upset, many of the residents tend to become upset. If someone passes, there is an undercurrent of discomfort and worry among the group.
It is monotony with dashes of unpredictable excitement.
Care Team & Family Communication is CRUCIAL
I cannot stress this enough.
A communication channel between staff and family is CRUCIAL. It literally can mean life and death. I’m not even joking. I have a dear friend whose mother was taken off a certain medication without any communication with the family member who is the Power of Attorney (POA). Her mother almost died. Twice.
Clearly this was not intentional by the facility. I find that in most communities, they rely on the decidedly unreliable memory of the resident, or too easily accept their self-report. Without collaborating with those people in their lives who have more information, who can provide more context, or worse, who are wholly responsible for their parent’s healthcare decisions. I get it. It’s a lot of work to confer with family members. And staff is already short staffed.
To add to the problem, the primary family caregiver is generally a part of the sandwich generation. We have children at home. A spouse. A full-time job. Friends. Hobbies. Our own health to take care of. We cannot be there every day. Sometimes we can’t be there for a week due to business trips. Sometimes we don’t even live in the same state. When we don’t know what’s going on with our parents, we worry. We call. We leave messages. We email. We sometimes get a response back. Sometimes it’s days later.
There has to be a better way.
Which is why I invented Serenity.
Because I am in the industry, I spend a lot of time at various senior communities and at conferences and educational events for Executive Directors and Caregivers. I hear a lot of things. Mostly good, but we are all humans and we all develop opinions and prejudices based on our experiences. I have heard caregivers complain that family doesn’t visit enough. I’ve heard Executive Directors groan at the thought of more family communication. I’ve listened to caregivers talk about families who are “too involved.” And I’ve heard Executive Directors talk about their “high maintenance” families.
I fault none of these people for their comments in that moment.
First, it’s a stressful job.
Second, they see more family dynamics in a week than most people experience in their lifetime.
Last, they are human beings. I have certainly said my fair share of things in a moment that I didn’t mean the way it may have landed.
But I must be honest. My heart truly skips a beat with joy when I work with Executive Directors who embrace family communication and invite collaboration. Because our parent’s lives depend on it.
Caregivers Are People Too
As family members, we do not always realize that when we transition mom or dad to a community, the caregivers become attached over time. How could we blame them?
They are interacting with our parents in very intimate ways. Imagine how you would feel if a stranger had to wipe your behind? Give you a shower? Help you brush your teeth?
For me at least, I’d need to trust that person. I’m sure I’d be embarrassed at first, and afraid. It means letting someone help you in ways that probably only your spouse ever has before. That’s scary! I know I would want to feel safe letting this person in on my vulnerability.
Caregivers work very hard to provide this trust. They show compassion, empathy, and often times, love.
I know that the caregivers in my mother’s memory care genuinely loved her. She had become a part of their daily lives. They worked hard to make her smile, and when she did they felt honored. And when she passed, they grieved.
Yes, the caregivers grieve when those in their care pass. Imagine managing a group of people. And they all pass on. With regularity. That would take a toll on anyone. It does not matter that caregivers know this is part of the job. Or that memory care is not a place from which people leave on their own. It is terminal. They still grieve.
And the beautiful thing about caregivers is they give their lives and love to our parents in spite of this.
To every caregiver out there, thank you. With all my heart. You are extra special people.
Dementia Sucks
I watched a man run down the hallway in half undone disposable diapers in the middle of the night, as if he was a little kid. The caregiver was chasing him as he was almost taunting her. One minute he was laughing and the next minute he was angry.
My heart went out to him. This man had had a life. He had a career. A wife. Children. Friends. Hobbies. After several days seeing and talking with him, it was clear to me he was a very intelligent man who was likely very successful in life. And he was a genuine and compassionate person in life. It made me sad for him, for his family, and for everyone with dementia.
I said goodbye to my mother over the course of 10 years. Watching a vibrant, energetic, loving woman become non-verbal and spend hours and hours walking in circles around the memory care unit. Like the man in the story above, caregivers often had to chase her down to give her medications.
And I watched my father grieve the loss of his wife of 60 years while she was still alive. He knew no other life than the one he had with her.
I watched a couple move into Assisted Living, only to have the wife move into Memory Care shortly after. Within a month, he passed. He could not live without his wife. And his wife doesn’t remember that he has passed. Which may be the only blessing in this story.
Dementia sucks. Period.
Hospice Is Truly A Gift
A little over a year ago, a 48-year old friend of mine went into hospice. She had stage 4 bladder cancer and it was clear she would not recover. It was a swift ending. That was what I thought hospice was. Always. Someone you call for those last few days of life. (You were a dear soul, Audrey. Rest in peace.)
What I learned is that hospice takes a variety of forms. In our case hospice was called in when a doctor determined that mom had less than 6 months to live and curative treatment was no longer an option. Ouch. This was a hard one to swallow.
But thank goodness for Suncrest Hospice. They gave us a roadmap, a shoulder, tools, education, and genuine compassion and support.
Because she lived in a facility, hospice did not mean we had to move her to a hospice facility. Instead, they came to her. So all of a sudden, we had equipment to support mom including a hospital bed to raise and lower her head and feet. We had emotional support, spiritual support, and the facility care staff had extra help. Our case manager was in touch with me regularly. A CNA saw mom each and every day. The kept a constant assessment of her and let me know how she was doing every day. (They loved it when I gave them Serenity.)
When the end came near, our case manager became instrumental. (Seriously, she was like my best friend for those 9 days. I don’t know how I would have done this without her. Thank you Nicole!) She was in charge of mom’s care and made sure that mom did not suffer. She educated me and my family on what was happening to mom at every step. She became a rock for me. I can’t imagine going through this part of the journey without someone to guide us, give us a bit of a roadmap.
There are many different hospices out there, and you do have a choice. If you have the time before you need it, I recommend looking at reviews or asking others for recommendations. This is such a crucial part of the journey and you want someone by your side that will educate and guide you as necessary.
Life is a journey, as they say. I’m grateful for being able to spend the last 9 days of my mother’s life with her. I’m grateful to have been there with my entire family as she took her last breath. I’m grateful for this last 10 years of my journey and I hope you found something in this post that was useful for you. I’d love to hear your story. Please share it in the comments below if you are so inclined.
And if you’re interested in better family communication and collaboration with care staff, get in touch!