When Carol and Bill called my CarePatrol office, “a little worked up” was an understatement. Carol recently fell in the bathroom and returned home after rehabbing a broken hip. That same week, Bill was diagnosed with dementia.  Their well-meaning family decided to “surprise them” and signed a contract at an assisted living community without involving their parents in the process. Bill was “pissed.”

Carol struggled physically – so Bill did the laundry, took out the trash and cleaned the house.  Bill had a cognitive impairment, often had a hard time finding words and poor short term memory – so Carol paid the bills and took the lead on medical and financial decisions. It is very common for couples to make up for each other’s deficits, and they enjoyed an independent lifestyle until the setback of recent events.

When I met with the couple, they were both aware of their limitations. They knew they needed help, but they did not want to be treated as children and have decisions made for them.  They were also fearful about leaving their home. When the kids joined us for the meeting, the oldest son Lee made it clear he was the decision maker. I had to make it clear that mom and dad both had capacity to make their own decisions. Their power of attorney was not active, and no one could make decisions on their behalf without a physician determining that the POA was activated. After refereeing the verbal family wrestling match, the family agreed that mom and dad needed to have ownership of the decision making process.

The kids were excited that they had found the “perfect” community for their parents to spend the rest of their lives.  It was close to their homes and had a contemporary lobby and a beauty salon. The youngest daughter was excited for mom to join the pickleball club. Mom told her that she used to be able to carry the grandkids around, now she gets winded just thinking about it. There was no way she was playing pickleball and risking another broken hip. The son kept telling dad his memory would get better if he cut out the glass of wine with dinner and stopped stressing over politics. Dad told him he used to have “senior moments”, but now his entire day is one long senior moment. He wasn’t giving up his wine or his political views. I was glad to see they still had a sense of humor.

Unfortunately, although well intentioned, the kids chose a community that was not right for their parents care needs. They should not have made a decision based on what was closest to their home and which property had the prettiest lobby. Proper placement had to focus on the continuum of care, a staff that could handle physical transfers and cognitive challenges, the availability of appropriate memory care if necessary, and solid physical therapy on the premises. Fortunately, we were able to cancel the contract with minimal penalty.

During our discussion, it became apparent that the family waited too long to seek out senior living options. Her daughter said “we thought we could handle our parents care needs at home, until mom fell in the shower. I wish they would have found you sooner.” After we talked, they realized another pitfall was not involving their parents in the decision making process. Dad said “This aging thing isn’t for wimps. I can handle it.  Next time surprise me with a cake, not a new home!”

Although Carol and Bill had very different care needs, one of our goals was keeping the couple together. Now that the family was on the same page, I toured them at several communities that could manage both their physical an cognitive challenges. To the family’s surprise, I had them settled into their new assisted living home in 3 weeks. Carol was embraced be a lovely group of ladies that were teaching her Rummy. She also joined the book club.  She tells me that is a much better fit then pickleball. Bill discovered that the poker guys also love to discuss politics. He tells me he is losing at cards but winning the political debate.

Aging isn’t for wimps, but with the right support and planning, it can be a rewarding chapter of life. CarePatrol stands ready to assist, offering the guidance and expertise needed to find the most appropriate senior living community.  The key to navigating this journey is to start as early as possible, ask the right questions, and always prioritize quality of care, safety, socialization, and reach out to CarePatrol to help you find the right fit.  With this approach and support, you can ensure that the golden years are truly golden.

Molly was the baby of the family.  Sheryl was the big sister and Molly’s role model. When their parents divorced as kids she made breakfast for them before school, helped her with homework, sat up with her in the middle of the night when she had nightmares, filled out college applications, played career counselor, helped her find a job and took the lead when mom got sick.  She thought Sheryl could do anything. She had put herself through college, built a successful law career and travelled the world. Now she had dementia just like mom.

Over the course of a year, Sheryl went from independent and high functioning to no longer being able to manage her activities of daily living or maintain her home. Her bills went unpaid, her home was a mess and she was not eating properly.  She had lost her orientation to time, and she called Molly at all times of the day and night to chat.  The calls usually started with the same “Hey sis, are you coming over for the holidays?”

When Molly went to visit for the holidays, she noticed Sheryl was trying to cover up a facial bruise with makeup – she had fallen down the basement stairs. Her outfit was dirty and smelled like urine. There were post it notes all over the house – reminders of a failing brain. How are you doing sis? Not good she answered, but I’ll be ok. Her heart broke, understanding for the first time that her big sis was not ok. Molly was already walking this dementia journey with her mom and knew that she would not be able to fix Sheryl.  She understood the necessity of getting her sister proper care so that she could maintain some independence and quality of life as long as possible.

As devasted as she was over Sheryl’s condition, we started the processes of scheduling an assessment and matching her needs to the capabilities of a quality memory care community.   Sheryl got agitated when Molly talked about her dementia diagnosis,  so I coached Molly on how to develop the skills of redirecting and creating narratives that would be acceptable to Sheryl while having the effect of getting her proper care with minimal stress.

Sheryl has now settled into a wonderful memory care community with loving staff that is attending to all of her daily needs.  She is enjoying eating in a “restaurant” for every meal, and likes the companionship of having her “coworkers”  at breakfast, lunch and dinner. There are activates scheduled throughout the day and she tells me she likes “leading” the current event discussion and crossword puzzle group.

After a recent visit at the community, Molly appeared more relaxed now that she was back in the little sister role and not being a caregiver for her big sis.  However, something seemed to be troubling her as she walked me out to the car. “I’m afraid I am going to end up like my mom and sister. If my mind fails me, will you be there for me?” I smiled and assured her, “that’s exactly what I do.”

I extend my deepest appreciation to the families who have allowed me to be a part of their journey. The strength, courage, and love they exhibit serve as a testament to the power of human connection in times of hardship. While I may be a small part of their lives, the impact they’ve had on me is immeasurable.

In the quiet moments of decorating homes and preparing for holiday gatherings, the absence of parents, spouses and loved ones can cast a shadow over the celebrations. Families face the task of redefining traditions and finding new ways to embrace the spirit of the season despite the void left by their loved ones. In the midst of grief, I find myself encouraging them to create moments of joy and connection, turning the holiday season into a celebration of love and cherished memories honoring the legacies of their families and friends.

As we light candles, hang ornaments, and gather around tables, I am reminded that the holidays are not only a time of reflection but also an opportunity to express gratitude. I am thankful for all the caregivers, communities and healthcare professionals that come together as a team to take care of our seniors and their families. I am thankful for the chance to contribute to the lives of these families and for the lessons in resilience they’ve shared with me. In the shared moments of laughter, tears, and quiet remembrance, I find a deeper understanding of the human experience and the short time that we all have to make an impact on this world and in the lives of others.

As the year draws to a close, I carry with me the stories, the strength, and the spirit of these families, grateful for the impact they’ve had on my own journey. In honoring their resilience, I find inspiration to continue providing help and support that goes beyond the practical, reaching into the realms of compassion, understanding, and recognizing that everyone needs to be seen, heard, valued and given the chance to finish strong.

When MJ called my CarePatrol office, her husband had been suffering with dementia for several years.  The dementia journey had become intense and overwhelming.  Tim’s disease had progressed to the point that both his short and long term memory were impaired, his cognitive abilities were childlike, and familiar faces were now strangers.  MJ had witnessed the person that she vowed to spend the rest of her life with slip away one memory at a time. This silent struggle is as emotional as it is physical, demanding extraordinary resilience and strength.

Watching a loved one grapple with dementia takes an emotional toll on caregivers, with spouses bearing the brunt of this burden. Feelings of grief, frustration, and helplessness become constant companions. The daily challenges, from repeating conversations to managing mood swings, can create a rollercoaster of emotions for caregivers. Despite the heartache, spouses press on, determined to provide the best possible care.

Caregivers often find themselves isolated, grappling with the demands of caregiving without the necessary support. The gradual loss of shared memories and the inability to connect with a spouse on a cognitive level can lead to profound loneliness. In this isolation, spouses may feel the weight of their responsibilities and the lack of understanding from others who may not comprehend the intricacies of dementia caregiving.

In addition to the emotional toll, caregiving for a spouse with dementia can impose a significant financial burden. The cost of medical care, specialized facilities, and home modifications can accumulate rapidly. The sacrifices made by spouses who adjust their lives to meet the needs of their loved ones often go unnoticed, as financial challenges add an extra layer of complexity to an already difficult journey.

It is crucial to acknowledge the commitment and sacrifices made by spouses caring for partners with dementia. Their devotion exemplifies the true essence of the marriage vow: “in sickness and in health.” To truly appreciate their commitment, family, friends and society as a whole must foster an environment that provides adequate support. This includes raising awareness about dementia, destigmatizing the emotional challenges faced by caregivers, and creating accessible resources for education and assistance. By acknowledging the difficulties these spouses endure, we can work towards a more compassionate and supportive community for both caregivers and their loved ones.

The commitment of spouses caring for partners with dementia is a testament to the strength of love. I want to take moment recognize and appreciate their dedication, offering support and understanding as they navigate the intricate path of caring for a loved one with dementia. In doing so, we honor the husbands and wives among us, shining a light on their resilience and unwavering commitment.

Emma’s world had changed dramatically since her mom’s diagnosis. The mom and daughter were always close and they shared a special bond. Emma did not hesitate to move mom into her home when it became apparent that she could no longer manage by herself.  As a single mom with a young daughter, Emma had to balance motherhood, a demanding job, and the responsibilities of being a full time caregiver.  The mental and emotional stress was taking its toll, and Emma told me “I’m on the edge of losing my mind.”

When I met with Emma and Margaret in their home, Margaret was looking comfortable at the kitchen table eating cookies. There was a bulletin board full of family pictures that gave me insight into years of wonderful family memories.  I commented that mom had beautiful blue eyes.  Emma said that when she now looked into those eyes, all she saw was confusion. She looked at mom and said “I love my mom, but don’t know how much longer I can do this on my own.”  Margaret was lost in her own world.  She simply kept smiling and eating cookies.

Emma poured out her heart.  She felt it was her responsibility to take care of mom.  Mom made her promise that she would never put her in a nursing home. Keeping mom at home meant providing her with the comfort of familiar surroundings, but it also meant constant supervision which was exhausting and Emma could no longer provide.  A memory care community offered the specialized help mom needed, but she could not bring herself to make that decision.

We discussed the many benefits of a memory care community including specialized programming, experienced caregivers, a safe environment and medication management.  I recalled the positive experiences of the many families I work with in similar situations. We also discussed the outcomes of families that chose to keep their loved ones at home and the impact of those decisions. Listening to these experiences, Emma realized she was not alone in her struggle.

Emma was starting to feel emotionally overwhelmed.  She asked, “if this was your mom, what would you do?”  I took out a piece of paper and wrote “Don’t Let Your Mom’s Dementia Make You Lose Your Mind.”  She pinned it on the kitchen bulletin board. We also discussed what mom may experience as the dementia progressed, support services for adult kids of parents with dementia, and the different memory care options available. I arranged tours of communities and we visited them together. Emma cried during the tour when she saw the other memory care residents. She also smiled when she saw residents lounging in the courtyard, participating in therapy, and best of all eating cookies at the kitchen table – mom’s favorite thing.

The day mom moved into the memory community was tough for Emma. She watched mom settle into her new room, surrounded by staff members that welcomed her with open arms and made her feel special. Over the next several days, Margaret’s confusion began to wane as she settled into the new community routine.  Emma knew it was the best decision for mom’s well-being.

Emma didn’t lose her mind.  Instead, she found peace and clarity.  With mom’s care now in capable hands, she could focus on her own well-being and spend quality time with her daughter and friends. The care burden was lifted and the connection with her mom remained strong.  She was back to being a daughter, not a caregiver. Margaret had  made the difficult decision, one filled with love and sacrifice. In the process, she found a way to preserve her own well-being and the memory of the vibrant blue-eyed woman who filled her kitchen bulletin board with so many amazing memories.

Dad did all the right things with his career.  He had a good job with solid benefits. Both he and his wife maxed out their 401k contributions to provide for a comfortable retirement. They got their kids through college and paid off their home. Along the way they thought about buying long term care insurance, but felt they could not afford the premiums. Between their savings, social security and Medicare they figured they were in good shape.  What they did not plan for was dementia.

The cost for dementia care can be exorbitant, and the disease was depleting their savings. Medicare covers things like hospitals, doctors, labs and durable medical equipment.  If you have a disease like cancer, it provides for what it considers “medically necessary” to treat the disease or condition. The insurance may provide skilled services in your home under home health coverage.  What it does not provide for is non-medical “companion” care to cover activities of daily living like bathing, dressing, toileting and 24/7 supervision. That is expected to be provided by family members.

Lauren’s family did their best to take care of dad at home.  She hired sitters to watch her kids so she could help maintain her parent’s house and drive to doctor appointments.  Her brother took the night shift and spent many sleepless nights toileting dad and making sure he did not wander out of the house.  During that time mom became exhausted, fell down the basement stairs, and broke her hip while doing laundry.  This created her own healthcare crisis and added to the stress.

Dementia symptoms can vary from experiencing memory loss, poor judgment and confusion to difficulty speaking, understanding and expressing thoughts or losing the ability to read or write. Wandering is common.  Some develop verbal and physical aggression. If something is wrong with your brain and you can no longer shower, dress yourself, go to the bathroom, take your meds, move your legs or ask for help – these sure seem like things that might be medically necessary and worthy of insurance coverage.

Dementia has a mystery about it, and prognosis can be  difficult. Maybe this is why doctors avoid speculating on life expectancy and the challenges families are going to face as the disease progresses. Healthcare professionals don’t worn you about the financial cost of care. Googling for help can lead you down a rabbit hole of confusion and poor care choices that are only compounded if there is a spouse in the picture relying on the same pool of limited resources.

The healthcare system is frustrating and complicated and often makes no sense.  There is no question that the financial stress is real.  While I work with many families that are in crisis, I prefer to help families make decisions before a crisis, and start the conversation as early as possible after a dementia diagnosis. Lauren was scared when she recently called.  I lovingly reminded her of the difficult decisions her family had already made, and of the plan we had in place for such a time as this.  We had created wills, trusts and POA’s. As hard as it was at the time, we had planned for death.  Dad participated in his end of life plan and funeral arrangements had been pre-paid. The family was prepared for what dad may experience as the disease progressed. They understood the cost of memory care. If dad outlived his finances, the Medicaid spenddown plan was in place.  Now was the time to implement the later stages of our plan.

Lauren asked me to stop by on a Saturday to visit with dad. He was spending most of his time in bed, and she wanted my opinion on next steps. She was in full project manager mode talking about physical therapy options and how to best counter dad’s weight loss. Today was the day it was time to stop planning.  Dad’s dementia was advanced, and time was short. I recommended she schedule a hospice evaluation, and she cried.  When dad opened his eyes, it took him a minute to recognize Lauren.  He smiled and told her it was getting cold.  He asked her to cover the air conditioner and don’t forget to turn off the hose so the pipes didn’t freeze.  Those were dad’s last words. He fell asleep peacefully. His last thoughts were concern for the family he loved in the presence of the daughter that had cared for and loved on him until the end.

I met the couple in person at a rehab after Rich took a fall. Lois told me how dementia had stolen his memories, and now Parkinson’s was taking away their ability to live independently. One of the nurses entered the room during our conversation and suggested that Lois move Rich to a long term nursing home to finish out his life so he would no longer be a burden. While well intended, that advice was insensitive and premature. Lois asked the nurse if she was married.  She was. Her reply, “What part of till death do us part do you not understand?  I’m not giving up on him.”

Lois told me many stories about the triumphs and tragedies, joys and sorrows that seven decades of life together can bring.  Rich was the rock of the family.  He worked hard to provide emotional support for her and the four kids through difficult times, while also nurturing a comfortable life with an abundance of happiness. When Lois got cancer, he worked hard to care for her while also providing for the family and dealing with his company’s bankruptcy. Their life was a partnership built on mutual respect, love and understanding.

Rehab was a struggle for Rich, and the hospital style environment made him agitated and confused. He always wanted to know where Lois was, and her presence kept him engaged in his therapy and had a calming affect on his behaviors. A physical therapist told her that she did not need to be there for his sessions and she said “love is not just a feeling, it is an action, there is no other place I need to be.” Lois reached out for help because she wanted a plan to keep them together, and avoid a nursing home if possible.  Several friends told her how I assisted their families, and she asked me to “do your thing.” He is being discharged next week so “I’m giving you 5 days to make this work.”

Upon discharge from rehab we had an assisted living plan in place that would give Rich the cognitive care and physical help he needed, while also providing Lois the independence and socialization she required. Lois’ dedication was inspirational.  Each day presented its own struggles, but she faced them head-on, often recalling how the strength of their marriage guided them through some very dark moments. When Rich lashed out in pain and frustration, she loved on him.  When diapers became the norm, she loved on him.  When he could no longer feed himself, she loved on him.

Lois recently called to tell me Rich passed. She thanked me for helping them stay together to the end, and for not giving up on them back in the rehab. Now that Rich was gone, she was grateful that she had a new home and new friends to support her through this tough time.

She reminisced about a partner that helped her feel good about herself, was steady and reliable and despite many faults, was there for her when she could not take care of herself. He had encouraged her to write and create art during a time when her friends thought it was a waste of time. Now she is using those writing skills to lead a book and art club to help other seniors engage their minds and creativity.  “The end of Rich’s life came to soon, but I have an amazing series of memories and moments and I plan to spend time savoring each one.” Lois’ devotion to her husband and their senior living journey was an enduring example of my CarePatrol model of “Helping Seniors Finish Strong.”

When Maureen called my CarePatrol office, she needed help with her mom and brother, Sean.  Mom had dementia.  Sean had a bad attitude and a hot temper.  Maureen wanted to find mom an appropriate memory care community.  Sean felt it was his responsibility to take care of mom, and she had been living in his home for the past year. Dementia had been cruel to mom. They both witnessed her memories and independence fade. Her personality change from passive to aggressive.  Sean was consumed by his own mix of emotions including helplessness, sadness and anger.

I worked with Maureen for months before we were able to get Sean to agree to talk with me. When Sean first called me, he asked “what are you going to do for me?”  I said I was going to offer him a lifeline.  It was going to start with compassion and understanding.  It would include a care plan that provided physical, cognitive and emotional support for mom and the family.  By relieving him from the caregiving burden, we would also expect the love and patience he wished he had to return.

Our initial conversations were difficult. Mom’s disease progression was getting worse, and this was causing him deep pain and also his own remorse over how he was responding to the woman who loved and cared for him his entire life. He sacrificed his own family time to be a caregiver, and she no longer recognized him as her son. His children were mad at him for missing their sports games and not having time to connect on weekends. No son should have to toilet and shower their mom. His temper had grown short.  He could not balance the responsibilities of his own household with mom’s 24/7 care needs.

I asked Sean to focus his energy on working with me to find the best care solution for mom’s remaining days, and spend less time hoping mom would snap out of her dementia. He reluctantly agreed. Over the next few weeks, we worked through the process of finding a safe and appropriate memory care community for mom. We gathered clinical information.  We got the family on the same page to support mom.  We reviewed the finances and coordinated the move. Along the way Sean confronted his own short comings.

We are fortunate to have excellent memory care options in the Chicagoland area.  The selected community worked with CarePatrol to create an environment filled with tenderness, compassion and moments of joy in the midst of the reality of dementia. As the days went by, Sean started to express his gratitude and make up for the time he had emotionally disconnected from mom. He discovered the power of forgiveness. He forgave himself for being so harsh, and extended his forgiveness to his mom for having dementia.

Sean recently reached out to tell me his mom had passed. “I’m sorry for being an ass to my mom, and to you.” He thanked me for becoming his support system and anchor during this tumultuous journey. He was also thankful for the profound impact our plan had on his own soul.  Over the last few months he made up for lost time and used every interaction with mom to express his love for her. He said the power he felt through forgiveness and gratitude was transformative. He also thanked me for not giving up on him and for helping him find peace and comfort in the storm of dementia.

When I met with Jay, we had a nice conversation about his family and his desire to get back to the office. He appeared to be living in his memories from 20+ years ago. He had no awareness of his cognitive issues, and got defensive when hospital staff tried to correct him. I did a video call with his family, and they told me I needed to get through to dad so that he understood his condition. They wanted him to stop getting into accidents, stop falling, and be safe in his home. We had to rip off the Band-Aid. What they were asking was impossible. Dad was a danger to himself and others and needed to stop driving immediately. While we have solutions to mitigate some fall risk, eliminating it was not going to happen. Dad was also not capable of living alone.  He was dehydrated, existing off frozen dinners, and living in the same outfit for extended periods of time.

We set up some quick “guidelines’ for the family:

1. Our goal was to give dad the best quality of life possible. We were going to make his world less dangerous, more comfortable, and more enjoyable. Guideline #1 – Safe and appropriate care was going to be the priority and guide decisions moving forward.
2. The video call got heated quickly. The kids argued over next steps. “Dad is just confused, he needs to get home ASAP…He should move in with Liz…We need to put him in a nursing home…When was the last time you saw your neurologist?”  Jay was aware of his families tone and became agitated.  He could not process the conversation and was overwhelmed. This led to guideline #2 – Communication and patience.  Speak calmly, keep conversations simple, limit choices and don’t argue in front of dad.
3. Jay’s mood changed quickly. “They need me back at work now! I can manage my own medications. ! I can take care of myself!” Fortunately, he was redirectable. I played jazz on my phone and he calmed down.  I asked him a legal question and the former lawyer gave me an answer. The family was going to practice this skill.
4. The family was distraught over family and friends giving them caregiving advice. Liz felt extreme guilt over constantly being told dad should move in with her.  She had a career and 3 kids. Don’t allow others to judge you.
5. Everybody seems to know somebody with dementia. Every individual’s care needs are unique. What worked for your neighbor’s mom or the Google review may not be appropriate for dad’s specific care needs. Finding appropriate care options for dad was going to have its challenges. It will be emotionally draining. There were legal and estate planning issues to resolve.  We did not want dad to outlive his financial resources. My job was to slow the world down for the family and get dad the proper care quickly.  The entire family agreed to let that happen.

Within 24 hours we had a care plan in place. CarePatrol worked through a safe discharge from the hospital. We connected the family with the proper legal and financial resources. We toured safe and appropriate memory care communities and moved dad into a community that will give him the care, independence, and sense of purpose to help him finish strong.

When a family reaches out to my CarePatrol office to discuss the struggles associated with dementia symptoms, the emotions range from shock and denial to fear and sadness. Watching the gradual decline of cognitive abilities and the loss of cherished memories can be devastating for both the individual and the family members. Dementia affects not only memory and cognitive function, but also daily routines, independence and relationships. As the disease progresses, simple tasks may become challenging, leading to increased dependence on caregivers.  For family members, assuming the role of caregiver can be emotionally and physically demanding, often causing significant strain on personal relationships and financial resources.

In the face of the Alzheimer’s tsunami, it is essential to emphasize the need for families to have access to support and resources.  CarePatrol is here to offer invaluable assistance to families dealing with dementia.  We help you process the impact of the diagnosis, access appropriate memory care communities and home care options, and reduce the burden of the dementia disease. We guide in planning for the future, making informed decisions, and ensuring the best possible quality of life. We also bring hope, because we understand what you are going through, and no one is better at helping seniors and their families deal with the realities of aging than CarePatrol.

Dementia is a tragic illness.  Although associated with aging, it can strike at any age, and its impact can be devastating for both the patient and their loved ones.  The recent diagnosis of a 19 year old from China with Alzheimer’s is thought to be the youngest person ever found with the disease.  While I have never worked with someone that young, I have advocated for many adults in their 40’s and 50’s with various dementias including Alzheimer’s, frontotemporal and vascular. Receiving an early dementia diagnosis is not easy. In addition to the cognitive and physical challenges, younger people with dementia often have to give up work, causing financial hardship.  Many try to keep their condition at bay for as long as possible by following a healthy diet, exercising, reading and maintaining an active social life.

One of the most challenging aspects of dementia is the toll it takes on family and caregivers.  As the disease progresses, patients may become aggressive, agitated, confused, or lose their ability to communicate. This makes it difficult for caregivers to provide the support they need.

Many caregivers suffer from depression, anxiety and other health problems as a result. In Beth’s case, her former wrestler husband towered over her and she was afraid for herself and her small kids.  During a doctor visit, Jim had “launched” a nurse in the exam room.  They needed help immediately before he hurt himself or the people around him.

Young onset dementia is defined as when symptoms emerge before age 65.  It is estimated that almost 4 million people are living with an early onset of the disease. There is limited awareness of young onset dementia, and it is rare for a primary care doctor to see dementia in younger patients.  Since symptoms in younger people often do not involve memory loss, diagnoses can be delayed. This results in improper diagnosis, a lack of support, and difficulty finding care and housing options in a healthcare system that is geared towards older adults with these cognitive challenges.

In Jim’s case, symptoms first emerged as difficulty comprehending his children, struggling to express his thoughts, difficulty reading, and inability to make simple decisions.  Bruce Willis, who is 67, recently announced that he had frontotemporal dementia, which has similar early symptoms. There is currently no cure for dementia, and treatment options are limited.  There are medications that can help manage symptoms.

While Beth was concerned for her husband, she also had to consider the well-being of herself and her kids. Beth had reached out for help at a point when homecare was no longer an option.  We needed a proper diagnosis, medication management and a community solution for Jim ASAP. We put together a care plan for Jim that involved placement at an experienced memory care community that could deal with his behaviors and his young age while also giving him the independence he needed.

Transitions are difficult, and the first few weeks were a rough road for everyone involved.  With proper medication management, outbursts became less frequent.  The staff became skilled at redirecting Jim to avoid most of his agitation episodes. He made “TV friends” that ate ice cream and watched sports together.  As the family settled into a new routine, the kids began to enjoy visiting dad at his “hotel”, and the other residents looked forward to interacting with the kids and their dog.

Dementia is a degenerative disease, and we needed to confront that reality with the family. Beth told me that once we had a plan in place for Jim, and she was able to go back to being a wife instead of a caregiver, there was a peace in knowing that time was running out.  She said that this allowed her and the kids to value the little thing like Friday night movies in dad’s room and laughing while dad shared his slice of pizza with the dog and then put it back in his mouth.  The oldest daughter told me, “Dad’s life is like a candle.  It’s bright now, but it will be running out soon.”

Jamie and her daughter were well educated about Sam’s Parkinson’s and his cognitive impairment. They had read books, attended support groups, and modified their home to accommodate his physical needs.  They learned how to assist with toileting, dressing, feeding, bill paying, decision making and more. When families provide care for a loved one over a long period of time, they develop a routine.  Jamie and Jesse excelled at these tasks. However, as they became full time caregivers, one consequence was that they forget how to be a wife and daughter to Sam. The daily routine left out compassion. They had lost it along the Parkinson’s/dementia journey.

Sam was sitting in his chair, staring at the TV that had no volume. He appeared devoid of thought.  Jamie started our meeting with a long list of complaints and frustrations. I asked her if we could move the conversation to another room so Sam would not hear the negative comments.  She told me not to worry, and was adamant that “He doesn’t understand what we are saying.” She continued, “Sam was a cardiologist and worked hard his entire career. We had plans to travel. I never thought our lives would turn out like this… I’ve spent more time changing my husband’s diapers then my children’s… I feed him, bathe him, dress him, wipe his nose and his butt. I may be better off if he died… I’m so tired that I hit the snooze button 5 times today and still could not get out of bed!

Sam, still starring at the TV, blurted out what sounded like “Aaadreeeenaliiiine!” Jamie hushed her husband. Again he mumbled, “Adrenaline!” and then slowly said “Hitting the snooze button can cause adrenaline to race through your body every time the alarm sounds.  That can stress your heart.  You need to get better sleep.” Mom and daughter almost fell off their chair. That was the best tension breaker ever. I’m sorry, but I laughed. For months they had assumed that Sam was unaware of his surroundings. He occasionally talked about TV shows as if they were real life and was fixated on the weather channel, but he had become a man of few words. When I asked them why they had assumed that Sam was not oriented to his surroundings, they said that since he was trapped in his rigid Parkinson’s body, the alternative was unthinkable.

Parkinson’s and dementia are degenerative diseases that affect a person’s physical and cognitive abilities, memory and personality.  It can be a difficult experience for both the individual and their loved ones.  It is not uncommon for family and friends to talk negatively in their presence, as if they were not there. This can be damaging and contribute to a sense of isolation and may erode their sense of self-worth. Individuals with Parkinson’s and dementia may still be able to pick up on negative comments and behaviors directed towards them.  They may not be able to respond or react in the way they once did, but that does not mean that they are not affected by the negativity directed towards them. What we can’t lose sight of is that we must continue to treat people with compassion and respect, even though they may not be able to communicate normally or remember as well as they used to.

Sam had physical needs that could no longer be accommodated at home. He needed specialized programming and professional care. I worked together with the family to find an appropriate assisted living that could accommodate his care needs.  We also developed a care approach that focused on positive interactions and moments of connection.  Sam’s new schedule included activities that he enjoys, such as listening to music, putting lotion on his hands, looking at old photos and simply spending time with other people. Armed with new perspective, insight and professional help, Sam’s family is helping assure that he Finishes Strong.