The Road to Assisted Living

The other day a friend of mine called to ping me for a favor. She asked if I would speak to a friend of hers, who had recently come to the realization her elderly mother could no longer live alone. Would I mind having a chat with her and share some of my experiences? Without hesitation, I responded “Absolutely!”

Like many of us facing the myriad of challenges as our parents age and can no longer live alone, her story was pretty darn typical. And took me back to the time when I started my journey on the road to assisted living with my mother.

Her mother is in overall good health, with some medical conditions that are getting progressively worse, making it difficult for her to live independently. Her mental abilities are beginning to fail, making communication increasingly difficult. Her emotions are running the gamut from super-highs to super-lows, making it almost impossible to maintain a balance.

Sound familiar? Well, I will let you in on a little secret: there is no magic button to push. No magic potion to drink. No magic answer which will fit everyone’s needs. All we can do is evaluate our situation and find a solution which covers most of our bases. And that is exactly what I told my friend’s friend.

For some folks, home care is the best option, be it in their elder’s home or their own. For others, a facility is the best option for the best care. Either way, the choice is not an easy one to make. For my mother and I, assisted living was our answer. Yet making that decision was only the first step.

Finding good quality care, whether it be in-home or at-facility, sure ain’t easy. It takes time. It takes patience. It takes fortitude. You need to make the calls and drive the miles. But it is worth it.

Since my friend’s friend lives hundreds of miles away, I was unable to give her the benefit of the research I had done in the area where I live. But I was able to share the process. How I contacted my local Department of Aging to get a list of facilities and organizations who provide care. I asked my family doctor. I asked my hair stylist, who was born and raised in the area and had just gone through the process with her elderly father. I pinged friends, and friends of family, and friends of friends of friends.

And when I found what I thought was a quality facility, only to learn they were out of budget, I asked them if they could make any recommendations. And not just what they thought was a good facility, but what places I should avoid. Knowing where not to go is as important as knowing where to go.

In the end, I researched just shy of 200 facilities, in four counties, within a 60 mile radius of my home. Because it was more important to me that I find a facility that would provide my mother with quality affordable care than it was to make it convenient for me to visit her. And after all that research, and all those visits to all those facilities which made my “A” list, I found only two that met all the criteria. Yup…just two. I swear, I swear, I swear.

Hard to believe, isn’t it? But you know what? It was worth it. Not only for my mother…and at the risk of sounding selfish…but for me. Because on that first night of the day I took my mother to her new home in the assisted living facility, I laid my head on my pillow without a nagging fear whispering in my heart. Without fear my mother had fallen going to the bathroom in the middle of the night and lay on the floor unable to move. Without fear she had forgotten if she had taken her medication and instead, double-dosed herself before she went to bed. Without fear she had forgotten to turn the burner off on the stovetop when she made her evening meal and had burned her hand.

And yes, my duties have changed since my mother has moved into assisted living. They have not necessarily lessened, just changed, which is a story for another day. I know she has someone to help her if she does fall. And I know she is receiving her medications. And I know she is getting her three-squares a day.

Most importantly, I know she is around people she enjoys spending time with and I know her quality of life has improved. And that is all I could have wished for her. And for me.

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Setting Priorities

As we fly around our world at a thousand miles an hour, with two thousand balls in the air, wishing we had three thousand hours in a month at our disposal, it is easy to allow our priorities to shift out of alignment.

We enable ourselves to put everyone else’s needs ahead of our own, rather than focusing on our own needs first. My mother always told me that in order to take care of someone else, you must take care of yourself.

I have shared this philosophy with other caregivers, but sometimes they resist the idea that their own personal needs have any value. They seem to have tunnel vision and can only see what they need to do for the person they care for. So I have gotten into the habit of asking them the following three questions.

How many times have you sat in an airplane before takeoff, listening to the attendant review the emergency procedures? Do you know why they say that if the oxygen masks drop down, parents should first secure their own mask before their children’s? Do you understand that if a parent is not able to breathe, they cannot help their child?

Hey, breathing is important, right? And so is making sure we are in good physical and mental health, whether we are a parent or a caregiver. Because if we are not in good health, how can we possibly help someone who is not?

Eating right, getting enough sleep, exercising…hey, these are not new concepts. Turn on the radio, put on the television or read online news reports and you will be bombarded with all kinds of information on how to stay physically healthy.

And whether you want to describe it as “downtime” or “me time” or taking a “mental health day” from your work or personal duties…it all means the same thing. That keeping our mental health in good shape is as important as our physical health.

I have developed a few daily habits over the years to keep my mental health in good order. One of which is part of my morning routine. Early in the morning, before the rest of my household is up and about, I make myself a cuppa tea. And because I am an outdoor kinda gal, I take my tea and go sit outside, no matter the weather. Most of my neighborhood has yet to stir, and quiet of the morning is broken only by bird song. It is a peaceful moment, before the chaos of an average day descends upon me.

It is a simple task. It does not take much time outta my day. And it is highly effective.

Now, I am not saying you should go outside every morning at dawn and sit in your backyard in the pouring rain with your beverage of choice. Hey, what works for me may not work for you. All I am saying is set your priorities in a healthy order. Gift yourself the luxury of time to take care of yourself. Because you are a vital part of the picture. And your needs are just as important as the people you care for.

Island Time

Island Time is a time vacuum created by the ocean’s presence. Where everything moves slow and easy. It has the ability to travel with you, when you are land-locked and the smell of the ocean no longer lingers in the air.

Island Time can run anywhere between ten minutes, ten hours or even ten days behind real time. It embraces forgetfulness and being carefree. With no worries or concerns for schedules or structure or responsibility.

Island Time is a place where the past is gone. The future is yet to be and holds no real appeal. This single moment…right here, right now…is the only one to be savored.

As a caregiver or family member of a person living with dementia, we may sometimes feel as if our loved ones are living on Island Time, in a world known previously only in their dreams. While we live on Dementia Time, in a world known previously only in our worse nightmares.

Confusion. Frustration. Anger. These emotions run amuck in Dementia Time, not only for those who suffer from the disease, but for their caregivers as well.

When my mother’s dementia was in its infancy, our adventures were still enjoyable. Sunday brunch at a new restaurant in town. Chicken on the barbecue at my house. Even a quarterly visit to her family doctor was a chance for a cozy chat in the car during our drive there.

Since my mother’s dementia has progressed to a higher plain, our adventures have become ordeals for me. We no longer go to a restaurant because the setting amplifies her level of confusion. Visiting my house is an exercise in physical and mental frustration. And quarterly doctor appointments are now all day affairs, during which my anger management skills are tested to the max.

I never know which “Mom” will appear each time I see her. Will she be the happy carefree woman, whose bright smile can light up a room? Or will she be in a state of confusion, inhibiting all conversation? Or will it be a combination of both, changing direction faster than an ocean breeze before the storm?

However, as difficult as it can be to do, I still embrace the concept of Island Time to triumph over Dementia Time. Because each moment with my mother is one to be savored. It does not matter what experiences we have shared in the past. And our future is yet to be written.

Lady of Leisure

My mother has always been the classic energizer bunny, and even now as she approaches her 94th birthday, in her heart she still is.

As a young adult, she worked full time as a bookkeeper. And continued to work after she married, until she was pregnant with her first child. She stayed home to raise her children and actively supported her husband in his career. She did not work five days a week in eight-hour shifts. Like most stay-at-home-moms, her work schedule ran 24/7. And even after her children had fled the nest and her husband had passed away, she still remained a busy little bee.

Yet every now and again, she would spend a day playing at what she called a “Lady of Leisure”. This meant a day when she was officially off duty. She would have a long lunch with friends at a favorite restaurant. Or read a book. Or watch television. It was a day where she did whatever sparked her fancy. All day long.

When she hit her mid-80’s in age, she began to have more “Lady of Leisure” days, where she’d put her projects and responsibilities on hold for the day. And when she moved into an assisted living facility a little over a year ago, she announced that every day felt like a “Lady of Leisure” day.

She still reads a lot, but doesn’t watch much television any more. She plays bingo at least once a week and attends the special presentations that her facility sponsors. She’ll visit the chapel when the mood strikes and participates in an exercise class twice a week. She keeps to a regulated schedule for her three meals in the dining room each day.

Housekeeping chores are taken care of by the facility staff. Her medications are administered by the nursing staff. Meals are provided by the kitchen staff. The only duty she is responsible for now is doing her own laundry.

A few doors down from her room is a pristine laundry room with pre-measured soap dispensers and immaculate washers and dryers. She places her laundry in a small basket and puts it on the seat of her walker and away she goes. She says she likes having this one simple chore to do. It gives her a sense of independence which I know is so vital to her.

As my mother’s dementia progresses, my tasks range from being the supplier and inventory controller for all her personal care items to managing her finances to monitoring the quality of care she receives. And making sure she has clean laundry. However, over the past few months, I have noticed she is no longer being as proactive with her laundry routine. I’ve casually mentioned it to her a number of times, even offering to have her laundry done for her. But she always told me she would get to it later. I suddenly found myself in the position of either having to believe her, or to go about making arrangements to remove this responsibility from her court.

Yesterday, I drew my line in the sand, since her laundry has been piling up for well over a month. I called her up and asked her point blank if she did her laundry last week.

At first, she told me no. Then when I told her I would drive up and pickup her laundry and bring it home to my house to do, she told me she did do her laundry. She told me she had clean sheets and clean towels and clean clothes.

I hesitated a moment before I responded. Because now I was really confused. Had she done her laundry or not?  Was she being coy, or was I talking to Mama Dementia?

So, I decided to be honest. I told her I was confused. I told her she had first said she did not do her laundry last week. Then she changed her tune and said she had clean laundry. So, which was it?

Her response was classic. And honest. “Oh honey, I was just being lazy. I simply didn’t feel like doing it. Really. It’s nothing more than that. But I promise you, I did do my laundry last week.”

“Are you sure, mom?” I asked. “Because I was getting a little concerned, honey. And I need to know if and when you need additional help. You know, I can always do your laundry for you, or arrange for the staff to do it.”

“No honey. I’m fine,” she replied. “I guess I just decided to be a Lady of Laziness instead of a Lady of Leisure.”

Now, how can I argue with that logic? And you know what? I am still grinning and shaking my head.

That’s my mom.

Monica and the 10 things I’ve learned about connection from people with dementia.

My Time is Now

“You are the music while the music lasts.” –T.S. Eliot, The Four Quartets

My work with the elderly has been very meaningful to me. My work with the elderly suffering from dementia has been astonishing. In the same way that a child will blurt out the most brilliant little nugget of truth without thinking, a person who has lived a very long life but can’t remember it will do the same- sometimes without saying a word: a foot tapping along to a pretty song, snapping in time to the rhythm of the music, a smile with eyes that have seen the moon more times than me.

namedy

My dance therapy for people with dementia is designed to give them moments of clarity and presence. I’m the lucky duck who gets to experience moments with them. There’s no reason for us to get caught up in the past or the future when…

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Of Patience and Perfection

Patience has always been my nemesis. That elusive trait I refuse to embrace. As I fly around my universe at warp speed, juggling a thousand balls in the air, I choose not to allocate precious time for that which I perceive to be an overrated virtue.

I have no patience for inflated egos. Or for bullying. Or for blatant stupidity. These traits are not worthy of my attention, and I tend to cut folks off at the knees and push them off my radar in a matter of nano-seconds if they show any hints of them.

Them sounds like fighting words, don’t they? And for some folks, they just may be.

But according to the folks who are nearest and dearest to my heart, this particular attitude of mine is in stark contrast to the high level of patience they say I have always gifted to my clients. And my friends. And my family.

So what has sparked this sudden angst over what I seem to have determined is my lack of patience?

Was it the visit I had with my elderly mother a few days ago? When she regurgitated the same conversation I’ve been having with her during every visit lately? A conversation which took every ounce of patience I could muster not to scream in her face, and instead, sit with her hand in mine and quietly explain it to her…over and over and over again?

Is it because when I see the confusion and frustration in her eyes, I am saddened that I cannot find the magic answer to make it all go away for her?

I know I must remember both my mother and I are in a learning curve. Learning how to cope with her dementia. And her increasing physical limitations. And the roller coaster ride of emotional responses.

I know I need to cut myself a break. I am not perfect. No one is, I know. And I have to realize I have traveled a long way on the road to understanding. I have found methods to deal with every issue which has come across my path.

So what if it has taken me more than one shot to hit the bullseye? I’ve hit the target more times than I have missed.

I know I must keep putting one foot in front of the other. And take comfort in the knowledge my efforts are not in vain. Quite the contrary. For my clients and my friends and my mother…who tell me my efforts on their behalf are a lifesaver. I must accept them to be as my own as well.