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Virtual Dementia Tour

Last week, I attended the Virtual Dementia TourĀ®, authored by P.K. Beville, which was being hosted at my mom’s memory center. It was brought there by Synergy HomeCare. I had just read that the Cobb County police department had experienced this and was intrigued, so I definitely wanted to attend this. It was a bit strange having it where my mom is living, because she was there and wondering what I was doing. She and other residents were interested in what was happening around them. I told her it was helping family members understand what it was like to live there. She seemed good with that.

When it was my turn, I was given things to put on that impaired my senses, specifically sight, hearing and touch. I was then led to a room and, once inside, given instructions for five separate tasks. I was told I would have seven minutes to complete them. There was another person in the room also doing tasks as well. Before I even entered the room, with the sensory impairment I felt, I was already feeling anxious. When I entered the room and set about finding the tasks to do them, I felt like I was lost in a strange world. I could barely see, barely hear and could not use my fingers well. What ordinarily would have been simple tasks became nearly impossible. I felt overwhelmed, frustrated, and ready to get out. That was probably the saddest part, knowing I could get out after a few minutes, but people like my mom could not ever get out.

After I was escorted out, I went to a room with other participants where we filled out a post-tour survey and had a debrief session. One of the questions asked how we would do things differently with our loved one. I wrote that I would ask my mom questions to see if she was comfortable with the environment. Apparently, people with Alzheimer’s lose their ability to filter background noise, so someplace that seemed okay to me may be overwhelming for her. My sister and I had already observed that large stores or loud restaurants were uncomfortable for her. Now, I better understand why that is.

In addition to how comfortable she is in the environment, I also gained a much better understanding of why it is best to limit directions to one at a time. With our temporary impairments, we were given a list of five tasks to complete. By the time I was given them all, I had already forgotten the first and was not even sure I had heard them all correctly. I felt very anxious trying to remember them as they were being said and found myself repeating them aloud over and over as I made my way around the room. With my mom having a very short-term memory, I can see how she would get immediately agitated if she was given too much to do at once.

During the debrief, we were told that much of what happened in the room related to main areas of behaviors that we might witness with our loved ones. Feeling overwhelmed by tasks was one I just discussed. Reinforcement was next. We were not given reinforcement in the room to let us know we were on the right track. This was so that could understand how important positive statements can help with anxiety. We may have found ourselves making negative statements when we were getting frustrated. We might have mumbled or hummed, which apparently people do as a self-soothing technique. We were told we could not ask for help to show how important when people ask for help , even if they do it over and over, it is important to give it. Other behaviors included, strange behaviors, following others around, repetitive behaviors, wandering, hoarding and rummaging. Several people in the group admitted to doing these while in the room.

For strange behaviors, the facilitator said that as long as they are not hurting themselves or others, or being unsanitary, that we should just learn to be okay with the behaviors. My mother, who always liked to be dressed well, has been sporting her nightgown with pants most days. This is bothering me, especially when she talks about it as “a very long shirt that has no end”. I have to keep myself from yelling, “I know, that’s because its a nightgown!!!” So, I now know to just let that go.

Mom, happy after eating ice cream on a day where she is wearing an actual shirt!

I found the tour to be incredible. We can read and discuss about what the disease is like, but to actually experience it and to almost literally “walk in their shoes” brings a whole other level of understanding. I am so appreciative of Synergy HomeCare and my mom’s place for hosting this for the community. I am so glad that the police department experienced this and all of the other places that have as well. We want them to live the best lives that they can and the more people understand what it is like for them and how to help them, the better their lives will be!

Remembering People

Being Okay with the Moment

In Creating Moments of Joy, a book by Jolene Brackey, the author encourages those who are working with or family members of people with Alzheimer’s disease to embrace each individual moment. I am beginning to understand the reason for this. My mom has begun to shift decades and emotions from moment to moment. Some moments are good, some are sad, and some are outright difficult.

Though I completely understand the philosophy of appreciating the moment, in practice it is not always so easy. I go visit her, we spend hours together. Sometimes, we go out to a movie or to get ice cream or shopping. She is so appreciative of me being there and taking her out and doing things for her. Then, I leave and she has no memory that I was there. In fact, this last visit, as I am walking with her to the door, the memory of me, her daughter, being there was already gone. As we walked, she said to me, “My daughters do not even visit. You would think that they would visit their mother, but they don’t.”

A wonderful moment last year when we were on a pontoon boat.

So, we get calls from her and the staff never fails to mention how much she asks for us. She wants to see us, she misses us, and we never visit. Each visit is not only a lot of time, but also emotionally very draining. We are always trying to decide what we can talk about or how to answer her questions in a way that will not upset her. We try to do things that make her happy, that bring her joy. In that moment, it can be very good. But it really is only for that moment.

I know so many people who waited to take their kids to Disney World or on big trips, like to Europe, until they were old enough to remember it. My mom’s philosophy was that every experience creates something in a child that becomes a part of who they are even if they don’t exactly remember it. I wonder if it is the same now and that even if she doesn’t cognitively remember our visits and her experiences each day, it is somehow a part of her.

Activity

Purpose

In meeting with my mom’s doctor, recently, he suggested that my mom doesn’t just need things to do, she needs to feel that what she is doing has purpose. She has often said that she wants to be doing something meaningful. She wants a job. Most of her life, she worked and her work was meaningful. She was a professor, a teacher, a counselor, a psychologist who helped children. It made so much sense what the doctor said. We can’t just give her tasks to do. They needed to have meaning.

I noticed when I brought my dog and she was walking the dog, she seemed to find that meaningful. She talked a lot about what the dog was doing. My dog was “investigating” and “making decisions”. My mom walked with purpose, she was focused outside herself.

One day I came and she was doing a puzzle. The high school student working with her was telling her that she really needed her help. She was not just doing a puzzle to do it; she was helping. The staff at her place have really jumped on board with giving my mom meaningful work. She is now helping to serve ice cream, doing inventory in the “store”, sweeping up after craft projects, and cleaning up after meals. She often does not remember that she has done these things and will still say that she has nothing really to do, but showing her a picture or bringing her to the places where she has helped out have worked in reminding her. I told her just today that they are so fortunate to have her there because they realized they needed extra help to get everything done and she is so good at the work she is doing. She nodded and smiled.

She is not alone in wanting to feel a purpose to her daily life. We all want to feel like what we are doing has meaning. It is just one more reminder that people with Alzheimer’s disease are still people and they have the same needs as we do. It is so nice that she is in a place that understands this!

caregivers

Caregiver Chaos

This is how I sometimes feel when trying to keep all of the caregivers straight!

Imagine a scene of the musical where the daughter caregiver goes to visit her mom and caregiver chaos ensues. A big musical number begins with the daughter expressing her total confusion because the nursing staff has let her know that the OT and PT are coming, but it is the same time as the psychologist, and then the massage therapist shows up unexpectedly, and all the caregivers are expressing their frustration (in harmony, of course) as the mom is not even there because she actually got up early that day and went on the bus ride!

This scenario is not far from the reality of my life right now. We just closed out a behavioral nurse only to find out that the doctor had ordered occupational therapy and physical therapy from the same home health group. This is after the speech pathologist came to do an evaluation. We signed her up with a mental health professional and got in a massage therapist at the suggestion of the doctor. These are mostly visit weekly, in addition to the nurse or doctor and the daily caregivers. That is a lot of caregiver visits! And, I was just informed that none of these people should come certain days at certain times because that is when outings or activities occur! Thankfully, my mom is now participating in things, so that is a good problem to have.

With these many caregivers, I cannot be too hard on myself for the recent confusion I had when I received a phone call to evaluate a caregiver. I was told the name of the company, but there have been so many companies that I didn’t really pay attention. I figured since we had just released a caregiver, it must be an evaluation of her. We went through 15 minutes of questions and answers. Suddenly, I got a strange feeling, mostly because of the types of questions, that I was evaluating the wrong person. I asked when we had last used this person and was told back in May. Well, that was an entirely different caregiver at an entirely different place. That was a companion we had brought in for my mom, which was pretty much a disaster. I told the person doing the evaluation that I made a mistake and asked if we could start over because I had totally different answers. I actually had to hang up and have her call me again to start the whole thing over!

It is good that my mom has a team of people there to support her and help her in many different ways. It is good that so many different specialists are available. It is great that she is participating in activities. I just have to get better at keeping track of it all!

(I am imagining the caregiver actors and the daughter all collapsing from exhaustion at the end of the song and the mother coming in from her outing looking at everyone lying on the floor as if they are crazy!)

Uncategorized

The Mixed Realities of Memory Care

Though everyone is residing in the same physical space in the present time, each person in the memory facility is existing in his or her own reality of place and time.

My mom recently decided that my father is alive and is there with her. He was, apparently, watching television with her just before I got there this week. I couldn’t help the image that came into my mind from the movie “Ghost”. Maybe he really was there! Sometimes, she wants to to go home to her house in Miami, if her mother is home. Most of the time she is remembering Miami now.

My mom and her mom, possibly in front of the family store – around 1950

Many residents there speak of loved ones who should be coming home soon. Some must think they are at choir rehearsal because they are singing, or moaning, but singing seems better. One man kept getting off his chair to get on the floor in either a prayer position or a yoga rest position, I am not sure. No matter how many times the staff picked him up and put him back in a chair, he was back up and on the floor in minutes. He obviously was somewhere else in his mind besides the dining room at a memory care place.

Wouldn’t it be nice if they could be where their minds are? If their rooms could look like their rooms in their old houses and if staff and visitors could talk about their relatives just exactly as the residents are seeing them, in that place and time?

A colleague showed me an article in an AARP magazine of a memory place in California that is all set up as if it was the 1950’s. They have the idea of creating a familiar environment for people who are predominantly, in their own minds, living at that time.

The education world is focusing on child-centered learning, individualized education that helps each student find his or her passion. How about adult-centered, individualized care? Perhaps there could be a scribe at the facilities noting the stories, the anecdotes, the descriptions of the people and places in the world of each resident. These could be printed and shared so that staff and visitors alike could enter each person’s world, even if only briefly, and be with them there.

I know their worlds are often changing, but so are the worlds of children. What excites them one day will fall by the wayside the next. Why would we not invest as much in the lives and psychological well-being of our parents as we would in our children? How might these care places look and behave if more resources were put towards dwelling where they are?

I guess I am mostly just reaching into the darkness to try and find something that will help the anxiety and uncertainty which envelops my mom. It is difficult to hear her ask questions about loved ones who have passed and think that they are alive because she is unaware of where she is in time and place.

I will say, I had a good silent chuckle this weekend after we got out of “The Lion King” movie and she said, “I have seen that movie several times and it surprises me that a filmmaker never redid it.” Well, Disney, I guess it is time you remade some of your movies!!!

Lifecycle

Lifecycles

If aging is a part of a cycle from birth to growth to decline to death, is it a wonder then that there are similarities between babies and those in physical/mental decline? Spending a year working with babies while at the same time being in care facilities with my mom really gave me the immersive experience.

Recently, I was about to leave my mom’s place with my daughter and a man came up to me ready to engage in a discussion. His inflection told me that he was conversing even if the sounds coming out were not intelligible to me. I did my best to respond and keep the conversation going. My daughter just stood there looking at me like I was crazy, like maybe I was ready to be a resident, too. Not a day later the video came to my Facebook feed of the Father having a discussion with his toddler in much the same way I had just been engaging with the person with Alzheimer’s. Entering their worlds to engage is what we were both doing.

There are the obvious similarities with physical needs, such as feeding, bathing, dressing and grooming. There are also connections with senses, such as hearing music and the body just responding with movement. Toddlers will just let loose when the music moves them and so will my mom. She was barely awake the day there was a Luau, but there she was hula dancing!

The taste of sweet things, though liked by all ages, is very much heightened for those who are losing their taste and those who are experiencing it for the first time. There were several babies who turned 1 in the classroom and we got to witness them eating cookies or cake for the first time. That gleam in their eyes and the smiles on their faces was extraordinarily similar to that of my mom each time she eats ice cream!

As I was told recently at a seminar on Alzheimer’s disease, touch is very important. Just as babies touch to connect, so do those who are in cognitive decline. The sense of touch is making up for the other inputs of connection that are not necessarily registering, and as it is for babies, it provides great comfort.

Though their are many similarities between the two, an important distinction that was also made at this seminar is that adults in decline should always be afforded their dignity. Whereas a baby in only a diaper is considered cute, an adult in the same situation is not and it should never be considered acceptable.

Personality

The Radiant Heart

Butterflies and moths surrounding this beautiful bush on our recent walk in the gardens outside her place. Her love of nature has been a constant.

I have heard from many people that the personality of their loved ones changed with the progression of Alzheimer’s disease, some for the good and some for the bad. I remember a friend telling me that as dementia set in, her mom became nice for the first time!

The nature of our mom has always been kind, helpful, and encouraging. She did have to persevere through a difficult childhood, so beneath the sweet exterior is also a fighter. We have witnessed some of that fighter over the course of the last year as confusion about her situation set in. There was the, “hotel in the nice downtown area where I could walk to shops,” where we were for some reason not letting her live. There was the house in Miami (her childhood home that her mother sold 40 years ago) that we “sold” without her consent. The car that we sold, the money that we control, her books, her laundry – all of the usual subjects that come up with this disease.

However, through it all, underneath even the most trying situations, her heart has led her through. We see this every visit in the way that she smiles at us and how her eyes light up as she gives us a greeting of surprise. “I didn’t know you were coming!”, “What a wonderful surprise!”, or “How did you ever find me?”.

When I go to visit, I emotionally prepare myself. I hide away my sadness and bring out my carefree, silly side. I go to be with her and support her and yet, her heart ends up reaching out to support me. As we walked outside recently, I noted the nice breeze that was blowing making the late July afternoon not so unbearably hot. “That is because of you,” she said. “Really,” I said, “I brought the wind? I didn’t realize I was so powerful.” “But you are,” she said, “you are multi-wonderful!” Even in her uncertain and scary situation, she still is able to care so deeply for us and provide emotional support to us.

I don’t know if or how she will be able to continue expressing from her heart as she progresses, but somehow I am certain that radiance will continue to shine through.

“I cherish that beautiful space that you have in my heart.”

Her latest expression – I mean really!!!