How to Love Someone with Dementia Part 1
Written by Richard Yusim
Mom died on February 25th, 2021. This wasn’t a total surprise and she did not contract COVID 19. She had suffered a heart attack three days prior to passing. Thankfully, she did not suffer any major pain. Mom left me and lost herself a little at a time. Mom started showing signs of dementia while living alone in 2016. Her dementia began to progress to the point where she first lost her independence. The skills that required her executive functioning and short term memory were the first to be recognized. Tasks such as planning, paying bills and daily procedural tasks became too much. Then her ability to drive went and this was a signal to my family that she would now need to live in an assisted living home.
As these signs of dementia progress, it’s important to first let go of the need for continuity and structure that we may have in our relationships. We have certain basic expectations in our close relationships that rely on communication skills but now new ways of communicating will be required. A loved one’s short term memory loss can easily frustrate family members or others they interact with. It’s natural to remind the person with dementia to a certain point in the beginning stages. Once it’s recognized that the person has dementia, it’s necessary to let go of the need for progression and continuity. The first mistake I made with my own mom is correcting her memory. Not only did I correct her, I was slightly irritated and I perceived forgetting a fact about my life as not caring. This can be difficult when you still want or need your mother to care about you. I now had to stop needing her as her youngest son. I had to learn to care for her on the phone every week when I spoke to her in Texas from California. At first, she gave me her voice and she knew it was me she was speaking to and this was enough for me. But gradually, with some patience and a little creativity, I learned how to communicate without actually having a recognizable dialogue with any content except our imagination.
Patience, however, is not a virtue that everyone has in large supply and even fewer people have the skills and understanding to communicate in new ways with their loved one. This is reasonable because dementia is really difficult for most to adjust to. In part 2 of this blog, I would like to offer some suggestions for how to maintain a meaningful relationship with your loved one as they seem to slip further and further from you because of the progressive nature of dementia.
How to Love Someone with Dementia Part 2
Written by Richard Yusim
Dementia should be viewed as a condition that has a spectrum of symptoms as it progresses. For this reason, each person’s history and interests should be carefully considered in order to provide the best quality of life. Like I mentioned in part one of this blog, you need to let go of any expectations you previously had for the relationship. It is now time for you to give back to your loved one by making them as comfortable as possible as they lose more and more of themselves to this insidious disease.
The first subject I want to address is verbal communication with your loved one with dementia. As stated before, while communication skills in your loved one will deteriorate, it will happen in a way specific to how your loved one’s thought processes are functioning and the rate to which the disease is progressing progression. I can only share what I’ve learned in my personal experience with my mom and treating veterans with dementia for two years in the role of activity coordinator. The most common symptom during the beginning stages of dementia is short term memory loss. For this reason, most of, if not all of your verbal interactions will need to be oriented to the present moment at all time. “Nice shoes dad!”, “do you see the bird, mom?” “You look good today grandma”. These are examples of phrases that are present oriented. Statements should be simple and short. With my mom, the simplicity and directness of questions began to not make a difference as her dementia progressed. It was as though she heard completely different words in my question and she would answer with unrelated expressions. My mom would frequently make up words too. I thought this was fascinating and I eventually learned to decode the tone of her statements and words so I could respond appropriately. For example, a phone conversation with my mom would typically sound something like the following:
Rich- Hi, Mom!
Mom- Oh, hi honey
Rich- It’s so nice to hear your voice
Mom- What? I don’t know how that is possible.
Rich- Oh yes it is, because I say so.
Mom- Well it’s all about the fa…fa…faberstopper and I don’t know what to do about it.
Rich- I think you’ll figure it out, you’re pretty smart.
Mom- Ha Ha well I can’t say that it’s the dander..na..na..natoon and I just want to make an appointment so I can see what I need to do.
Rich- That’s great mom, I’m proud of you.
Mom- You are so trapa..gaspen and you really know what it’s for…the botherkimbal
Rich- Thank you, well I love you and I learned from you.
Mom- I love you too
You’ll notice how I responded to my mom with affirmative language and as if I knew exactly what she was communicating. This became very valuable to her and she would essentially thank me at times for understanding her and she would try to tell me in her way how much it means to her. To be understood and listened to is all she wanted.
How to Love Someone with Dementia Part 3
Written by Richard Yusim
There is no pill to alleviate symptoms of dementia. But what if there was something that could reduce the likelihood of falling, add joy and stimulate communication and memory in our loved ones with dementia? Listening to personalized music playlists can help with these things and more! Positive outcomes with people with dementia can be achieved through an activity that costs very little to implement and can be administered by volunteers at skilled nursing and memory care units around the country. Everyone likes listening to music and it’s been proven to especially help those with dementia.
Before I go any further, I have to strongly suggest viewing the film “Alive Inside: the Story of Music & Memory”. This film is available on the library streaming service “Kanopy”. This film will touch your heart and you’ll be amazed! In this film, we learn about how the brain retains memories that are associated with the music we loved growing up. Experts like Dr. Oliver Sacks explain to us in the film how there are many parts of the brain that are stimulated by music. Music has been shown to activate cognition and improve family visits in assisted living communities, and boost spirits and decrease pain in patients in hospitals. Personalized playlists brighten moods for individuals in adult day centers and have a dramatic impact on people in hospice and their families during their end of life journey.
From 2014-2016, I worked at the Veterans Home of California in West Los Angeles as an activity coordinator. This was an enormous home that served those qualifying for assisted living, skilled nursing or memory care. As I learned more about the residents, I started to acquire music I did not have from the generations I was serving. I bought a handful of dollar store headphones that I could personalize for safety and health reasons. I took some outside with their wheelchair, others could walk around the unit or be visited in their room. They loved it! I heard people singing and saw their faces light up when their favorite song by Frank Sinatra or Nat King Cole played. One of the veterans with advanced Parkinson’s disease, mostly non-verbal and required feeding assistance would light up and hum along with the music. He loved old Jazz and he would also use his voice at times in reaction to the music. So much fun to watch!
My mom was a music lover and she and I had this in common. We could talk about Classical music together and I even turned her on to pieces she hadn’t heard before. Mom lived on a memory care unit in Texas and I was here in California. My older brother lived near her and looked after her care to the degree he knew how. My brother and I do not have the best relationship and we share very different values. I tried to tell him how to add to mom’s quality of life by facilitating music listening. I also told him I would provide the music for her. Joey’s response to me was “Mom can’t listen to music anymore” and he dismissed my suggestion completely. Needless to say, this was very disappointing to hear from my own brother. Well, I visited Mom once when I was in graduate school. I brought my headphone splitter and two sets of headphones so I could listen to her favorite piano concerto with her. I pressed play and she soon was smiling and gazing into my eyes. She had a difficult time communicating verbally at that point but in that moment I knew exactly how she was feeling.
Written by Jill Schwartz
We don't talk much about being gentle with ourselves as the best way to live a happy, productive and fulfilling life. Rather, the world promotes striving, forcing, controlling, manipulating, judging and criticizing ourselves instead. We think this way of thinking and being will motivate us, help us be productive and achieve our goals more effectively, but it actually has the opposite effect. Evidence has shown that criticizing and judging ourselves makes us feel like nothing we do is ever good enough and contributes to a lack of motivation, depression, anxiety, addictions, procrastination, perfectionism, and low self-esteem.
By being gentle with ourselves, there is more of a chance we will be motivated to achieve our goals, and enjoy the process. Being gentle and loving with ourselves gives us energy, strength, peace, joy and love. This is the only environment that will foster health, mentally, emotionally and physically. The bible says, 'Rather it shall be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight.' - 1 Peter 3:4.
If a child fails at something, you wouldn't berate them for it since it will make them feel worse than they already do and will foster low self-esteem. The child internalizes the message that they are not good enough and they will connect their worth to what they do rather than who they are. You would help them understand that failure is a necessary part of life and growth and their only responsibility is to do their best, which is a success in and of itself. Instead, tell them they are worthy no matter what they do (behavior). Some behaviors are not good and require consequences, but that is separate from WHO they are. A nurturing parent would love them the same regardless of their behavior. A healthy parent would teach them how to learn from the failure and then let it go. We need to use this same approach as adults, because that child is still in and part of us. The first step is becoming aware of our negative, critical thoughts without judgement and the second step is replacing those thoughts with more realistic, positive, gentler ones.
Being gentle with ourselves also includes acknowledging our feelings, no matter what they are, or whether we think they are "acceptable" or not. It's necessary to work through and process feelings in order to learn what they have to teach us. Journaling thoughts and feelings is a great way to do this and increase self awareness.
Acknowledging our successes, no matter how small, is another way to be loving and gentle with ourselves. These are a couple of ways we can be free to be more integrated and whole individuals that will lead to greater productivity, motivation and emotional balance. Even the bible talks about the importance of being gentle with ourselves. 'Therefore, as God's chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.' - Colossians 3:12.
Achieving gentleness with ourselves can be difficult if you grew up in a family that was very negative and critical, but it is possible if you believe it is. It takes work, but will be well worth the effort in creating a joy-filled, successful life filled with love and peace.
Please contact me and I will share how I can collaborate with you towards a gentler, more self compassionate life you only dreamed was possible.
Peace and blessings,
Written by Richard Yusim
When I reflect on mental illness and all I’ve seen and learned in my education, career and training over a twenty-year period, I can really recognize the enormity of this crisis and the many lasting effects it will have on our society. For so many Americans, this crisis has pushed them over the line that divides functioning from impaired. They are now experiencing something that is so out of their control and this has “created” mental illness where there hadn’t been any before. Nobody is ever in total control of their life. Terrible things can and will happen to us. Millions of people, however, were able to move forward despite the daily challenges that life presented to them before the global pandemic.
Consider losing a loved one, the loss of your job, the loss of your daily routines that keep you functioning on so many levels, the loss of the ability to connect to others and most importantly, the loss of hope. These are all reasonable reasons to grieve, feel anxious or depressed. The thing I am most amazed by is that millions of people have been confronted with all of these existential threats throughout history but now, every single human is experiencing this simultaneously. For millions of people, 2020 was absolutely the worst year of their life.
For a large portion of society, however, the worst days of struggling with their mental illness are hopefully far behind them. These times of struggle were comparatively much more challenging than anything they may have experienced in 2020 alone. People who were abused at a young age, people who never properly treated their psychosis, people who really hit bottom because of substance abuse and people that are grieving the loss of a loved one or their house burned down have survived. The list of things to recover from are endless is my point and many people have already been through the worst and adapting to life in quarantine or contracting the virus is the least of their worries.
How do we successfully adapt to this new lifestyle we’ve been forced into? This is much easier said than done for some of us. If you have a loving support system and get along with those you live with, you’re doing okay. If you can work from home and parent at the same time, you’re doing okay. If you’re relatively young and less of a risk of catching COVID and you’re basic needs are being met, you’re doing okay.
What if you were relatively isolated and lonely before the pandemic because you live alone and your amount of human contact was reliant on your ability to be in the community? I am one such individual. I’ve been recovering from my own mental health crisis which occurred in August, 2019. I suffered a great deal of loss at one time at the end of 2018. Because of the timing of all of these losses, I eventually had a frightening existential crisis and hit bottom very hard.
I now had to try to get back up.
I had been doing a great job of rebuilding my support system and reconnecting with the community when the pandemic struck. All of the things that were helping me were now gone. I took advantage of meetings and religious services on zoom and this did help to some degree. With the help of my therapist, I learned that I cannot wait for others to reach out to me. I was not okay and I didn’t have anybody to simply call and check on me. I had to rebuild my support network and acknowledge that I had to be more proactive. I love to draw, listen to music, watch things and make things so in a sense I felt very fortunate. I believed that artists in general were welcoming the solitude and excuse for staying inside with their work. Being able to engage with my surroundings and activities in a mindful way has been imperative for my well being but nothing I can do on my own would replace the need for human contact. I started to get really depressed due to being isolated. I saw two different news stories which subsequently inspired me to action that would help me more than I could have imagined…to be continued in the next blog post.
The Pandemic Part 2 - A Call to Action
Written by Richard Yusim
As soon as this pandemic began, I became a news junky. I’m sure I’m not the only one. It’s important to recognize if I’m watching too much news but I couldn’t stop. I find live T.V. to be especially compelling and there was plenty of it every day in 2020. I was already watching news every weekday morning and I soon developed the habit of watching a news hour daily. Being unemployed and alone, I quickly began to feel helpless and depressed watching the terrible events unfold.
One morning, I saw a news story that enraged me. Dr. Henderson was loading up his van with supplies for the homeless community in Miami one morning in April 2020. Dr. Henderson is a young black man. Dr. Henderson was stopped by a police officer, questioned and then handcuffed in front of his own apartment! He was let go after his wife brought his ID for the officer. WTF! I was so mad and I could not just sit in my place alone and let this story fester in my mind.
I wanted to think of something I could do locally in that moment to help others. I knew the best way to counteract the feelings I was experiencing was to be proactive. What could I do though? What resources did I have? I went out to the garage and looked around. Ah ha! Camping supplies! I used to enjoy camping with my wife but she was gone now. The chances of me camping on my own are slim to none. I packed up anything I could find that a homeless person could use. I had a tent, two foldable chairs, sleeping bag for two people, some sneakers and a big bag of winter clothes that were being stored. I loaded up my car and I knew where I had seen homeless folks before. It felt great to drive up and surprise this small group of homeless people near the 101Frwy here in my hometown of Ventura, CA. Without really realizing it, I was beginning to change my emotional life in a very important way.
So I’m at home a few weeks later and I see a story on the news hour that also inspired me to action. This time, it was a story about a different doctor. This doctor was describing to Judy Woodruff what it was like to treat COVID patients. The doctor went on listing all the PPE she wears when she’s on the floor visiting patients. The mask the doctor wears fits her face in such a way that if she was to smile at her patients, even though they could not see her smiling, the mask’s effectiveness is compromised. The fact that this doctor could not smile at her patients is the thing that troubled her the most. I realized what that doctor was talking about in that moment was a daily struggle at her job that could easily lead to burnout. She needed to smile more for herself while she hoped that her patients would recognize her smiling eyes. I got really sad after seeing this story. I sobbed after this story because I’ve worked with dedicated nurses, CNA’s, and doctors in a skilled nursing facility and already had tremendous respect for them. I was no longer working in that role and was doing essentially nothing to help them. I saw the people coming out to support the healthcare workers in New York. They were banging pots and cheering them on as they geared up for their shift. I thought it was beautiful and it was happening every day. I can do that, I thought to myself. I can be a cheerleader! That’s easy! I grabbed my tambourine and drove to my local medical center. I drove to an entrance which seemed to be the main entrance. I did my best to park where I would not be in the way. I cheered some workers on with my arm out of the window shaking my tambourine. “Thank you!” I yelled, “Have a good shift! It didn’t take long for a security guard to approach me. “Excuse me sir, are you dropping someone off or picking up? I told the officer “No, I’m just greeting the workers”. “Well, you can’t park here because the emergency vehicles won’t be able to get in and out”. I felt a little stupid in that moment but I asked him where would be a good place to situate myself. He showed me a corner where the workers pass by in each direction at shift change. It turned out to be perfect. There was a tree for shade and plenty of workers going to and from work. I went home that day and made a sign that that could be used at morning shift and night shift. I also had a table top easel I could place my sign on. I wore a mask at all times out of respect for the workers and to be cautious. I was so delighted with the smiles I was receiving from the workers. Soon I started to be thanked by some and they would sometimes wave to me from their cars. I would say “have a good shift!” or if they were going home “have a nice day (evening)!” It didn’t take long for me to recognize how beneficial this was for both me and the workers. I was doing something I could not only repeat but continue as long as I wanted to. At first, it was every day but I decreased it to three or four days a week for both morning and evening shift change. They started to ask my name and some wanted to take a picture of me. Some of these workers got rather emotional when they stopped to thank me. I began to learn names too. I kept this up until it got to be too dark at evening shift.
While I cannot say I am never lonely, I knew I would not get depressed if I kept this job up. This was providing me human connection on days that I would see and talk to no one. I let the feeling of helping the workers sink in. I would allow this feeling to help me through the day when I was alone. On other days, I tried to engage in other meaningful activities such as drawing, music, cooking or other household chores. I started this volunteer job on May 5th, 2020 I remember and I didn’t stop until I was working as a therapist which wasn’t until December 2020. I left this volunteer job in December because I finally started seeing my own clients.
They were so inspiring to watch as they walked briskly and cheerfully to their jobs, day after day working 12 hour shifts. I loved getting up early, making coffee, then driving to the hospital listening to music. I began to really appreciate the time to play the tambourine in a mindful manner for an entire hour outdoors too. I delighted in coming up with different march patterns. This was an unexpected development and could be very meditative. One day, a nurse gave me a response that thrilled me. She said “I feel like a soldier marching into battle” I told her that’s exactly how I want her to feel. I told her it’s a love march and she’s a soldier in love’s army. We are all in this together. It is possible find needed support when we support others who need it most.
Maple Counseling Center
Bite sized thoughts for Transformation and growth.