Articles Posted in Real Life Story

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The holidays can be a profoundly stressful time for a Person With Dementia (PWD) and his/her family members. To avoid even more stress and any potentially awkward or embarrassing situations, family members who don’t know about the PWD’s diagnosis should be made aware of it. That way, you will avoid any shock and/or inappropriate remarks when your Uncle Fred decides to pipe up and exclaim, “Hey, why are you acting so weird?!”

Many years ago, I was driving my parents to Wisconsin to visit my maternal grandmother. My dad was sitting in the front seat of the car with me. He used to read the daily newspaper from cover to cover. So, I wasn’t surprised to look over and see him reading the paper during our trip. Dad also had a marvelous sense of humor. So, when I glanced over and saw him reading the newspaper with his sunglasses on, and upside down, I giggled and said, “Very funny, Dad!” But then I saw that he really wasn’t comprehending what I was saying. When we arrived in Wisconsin, I noticed that he needed a lot of help to get out of the car and eventually to the hotel room. I addressed my mother indignantly and asked, “When were you planning on telling me about this?” She replied, “I just didn’t want you to worry.” So, what would have been a better approach? Was it better to cover up the situation and let it rear its ugly head at a time when I didn’t expect it? Or should she have told me?

This season, if you intend on taking your Person With Dementia to a holiday party, plan to keep the visit short. Parties with a lot of people, flashing lights, noise, and kids, etc., can be very overwhelming. It is a good idea to have a family member assigned to stay with the PWD so that he or she stays engaged and does not withdraw. Look for a quiet room where the person can retreat to if he or she becomes overwhelmed. Or you may want to avoid parties all together and have family members visit the person at home in smaller numbers. If you have recently moved your loved one to a long-term care community, it probably is not advisable to take the PWD out of the environment to which he or she is just getting accustomed. All of the communities will have some sort of holiday get-together that family members can attend. Dementia is an unpredictable disease, so it is best to avoid behavioral issues from the get-go.

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The worst part of my business is that I sometimes have to say “Good-bye” to my favorite clients. In the past several weeks, I have had two favorite clients pass away, and one move out of state to be closer to her son. Today, I am going to share a story about one of my clients, whom I am going to call “M.”

“M” was in his early 70’s. He was a former states attorney, who was hired personally by the late Mayor Richard J. Daley. M was extremely eccentric and opinionated, and some of the things he said made me laugh so hard that I cried. He had opinions of politicians no matter which party they belonged to. He had been educated by Jesuits from high school through law school and hated everything that happened in the Catholic Church after Vatican II. He had never married, lived with his recently deceased mother, and cherished an overweight, 6 year old Dachshund that was not housebroken. (Therefore, the dog did its business anywhere in the house). He told me that if anything were to happen to him, the dog was to be taken to a woman who ran an animal shelter in her home up the street. He didn’t put this in writing. His estate was left to a charity. He had named a trust company as his Power of Attorney for Property. I was referred to this gentleman because he had very bad experiences with a non-medical home care agency. After a stroke in spring 2017, he amassed a bill for more than $200,000 in charges for 24-hour care provided by the agency. After reviewing the bill, I found some of the charges to be extremely excessive. I was hired in January of 2018 to help find a new home care agency for him and pay his bills. After bringing in 2 agencies for him to interview, he confided that he had hired some caregivers privately at a much lower rate.

As I put together M’s big financial picture, I found that his money was at a bank in a number of CDs valued over $500,000. He had checking accounts in two banks, an IRA, a pension, and a vacation property in Wisconsin. He had a habit of running down his checking accounts to the last penny, even though he had plenty of money. When I suggested that a financial advisor should be called to “pull everything together and maximize earning potential,” M replied, “No, because they will make me sell the property in Wisconsin.” Please note that M was not in any physical condition to be using a vacation home. Nevertheless, I backed off. However, when I would give him advice, he would acknowledge me with a traditional, “Yeah, I know.” As time went on, M trusted me more and more. Eventually, he asked me to attend his doctor appointments with him and become his advocate. He had signed a Power of Attorney for Health Care with another entity in 2017 that never had any contact with him, or knew anything about him. I was named, however, as Power of Attorney for Property at only one of the banks where his CDs were placed and came due. I would then cash them in. In other words, I was effectively the only person who knew what was going on in his life. Did he have relatives? Yes, but he wanted nothing to do with them!

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My clients were a very pleasant, alert, 90 year old woman and her son. The son had been gainfully employed by a major corporation and had been transferred to a state out west. He liked the new location very much and remained there once he was retired. His mother had lived here in the Chicago area all of her life. When she could no longer take care of herself, the son chose to move her to an assisted living community here. She had lived in the suburbs all of her life and wanted to be in close proximity to the cemetery where her husband was buried. She had an excellent support system here, consisting of many personal friends who visited her and members of her church who came to give her communion at least once a week. In addition, the son hired me to act as her advocate for several hours a week. His long-term plan was eventually to find a senior living community for her out west where he was living. In the interim, he wanted me to monitor the visits from the nurse who was tending to a wound on his mother’s leg, ensure that her hearing aids were charged, make certain she arrived at her ophthalmologist appointments, and see that her mind was being occupied by decent activities and going outside.

At first my elderly client was rather wary of me. But we developed a wonderful relationship. She was very frank with me with regard to the staff at the local community. She was in the assisted living area of a Continuing Care Retirement Community (CCRC), including independent, assisted, and nursing home living, because she needed standby assistance with bathing, dressing, and putting in her hearing aids. On occasion she needed to use a wheel chair for long distances, and was in need of 24-hour supervision. However, she complained of long waits when she pushed her wrist pendant for summoning help. She said that when she did get help, some of the staff members were nice and others were not. She often mentioned to me that the activities were not very interesting. She told me she didn’t complain to staff or to her son because her son tried so hard to do a good job. She did mention that the food was wonderful. Overall, I got the impression that she was just putting up with things and would like to be happier with better staffing and activities.

The son eventually contacted me and said he found a new community for his mom out west and gave me the dates of her departure. I met with the son and his mom to say good-bye. The son told me that his mom was going to be living in an independent living/assisted living/memory care community. He explained to me that the independent living and assisted living residents lived in the same area in the new community because state law prohibited them from being separated. He expressed concern over the potential wait time involved when she pushed her pendant button. I asked him if he had asked what the ratio of staff to residents was and he replied “No.” I asked if he had checked the activity schedule for the types of things that might make his mom happy. I did not receive a clear affirmative answer. Since his mother loved the food at her original, local community, I asked if he had tried the food at the new community out west. Again, the answer was no. When I asked why he went with a community that lacked a nursing home component, he said he was told that any of the services she needed could be brought into her apartment. I’m not certain he was aware of how astronomical the costs of ordering ala carte services into an assisted living apartment can be.

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My client is a 72 year old, Eastern European woman who had been living in an apartment. She ambulated with a walker. She is diabetic, suffers from anxiety, and has difficulty with her vision. She had contracted an infection in her back due to a fall and had refused to go to the hospital for treatment. She had a part-time unlicensed caregiver who assisted her with errands, bathing, and meal preparation. The caregiver came to help out for several hours a day during the week, but my client was alone at night and on the weekends. I was hired initially to assist my client with making her cremation arrangements, review her paperwork and pay bills, and assess the need for senior living options. Although my client and I have a fairly strong bond, I sensed that the bond between her and the caregiver was much stronger, as they were both from the same country of origin.

After working with my client for a month or so, I told her that I didn’t feel that her apartment was safe for her to be alone. She even confessed to me that the shower didn’t work properly, and the caregiver was filling a bucket and dumping the water over her head in the bathtub in order to bathe her. I suggested calling the landlord.

As time went on, my client named me as her Power of Attorney for Health Care and Property. Her financial advisor, attorney and I had repeated conversations with her (together and apart) regarding the need for her to move. As the saying goes, the conversations fell on deaf ears.

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Hearing loss can lead to auditory deprivation, dementia, and emotional problems.  I have asked my respected colleague, Audiologist Kelly O’Malley, to share some facts about each consequence:

Auditory Deprivation:

When the hearing nerve and the area of the brain responsible for hearing are deprived of sound, they atrophy. Microscopic hair cells in your inner ear vibrate with sound and send signals to your brain. When those hair cells are damaged, they can’t transmit the sound properly to your brain. This results in hearing loss at certain frequencies. Prolonged untreated hearing loss may cause your brain to forget how to interpret auditory impulses, like an unused muscle becomes weak over time. Damage to the hair cells in the inner ear is permanent. Even if these areas are stimulated again through amplification, the brain may no longer be able to interpret the incoming signals clearly. In other words, “use it or lose it” applies to your hearing as well.

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At the request of the Illinois Chapter of the Huntington’s Disease Society of America, I was recently asked to give a presentation at their annual meeting on, “How to choose a nursing home”. Had I been asked to speak about how to find a nursing home for a person with Huntington’s disease, the task would have been much more challenging.

For those of you who are not familiar with the disease, here are some very general characteristics of the disease:

1. It is a neurodegenerative disease that causes deterioration of the brain cells. It can strike as early as the age of 30 and progress for several decades. It can also strike children and the elderly. The disease is hereditary. Its victims exhibit inappropriate behaviors that can sometime be violent.

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While “age 55 and older” seems to be the general definition of an American “senior,” I have never allowed my age to deter me from enjoying two of my favorite activities: tap and jazz dancing. As a senior living advisor and former part-time children’s dance teacher, I am pleased to see so many senior living communities offering dance therapy classes to their residents. I have also taught tap and ballet on a voluntary basis in several senior centers and in some of the assisted living communities that specialize in dementia care. When I was teaching, I was made aware that several of the participants in my class with dementia also had Parkinson’s disease.

Exercising even just several times a week can boost a person’s immune system and make him or her feel better physically and mentally. That is in large part because of the endorphins that are released. Exercise classes provide fun and fellowship while encouraging seniors to move all of their muscles and body parts. If a person moves his or her limbs, it increases hand-to-eye coordination, strengthens the core, and helps balance.

I approached teaching my senior dance classes as I would have any other basic level: I included combinations and repetition to Frank Sinatra and Bobby Darin songs, among others. I found that most of my “students” found ease in doing the tap warm ups, grape vines, and some jazz movements, even if a participant was confined to a wheel chair. Many of the participants said that their joints felt better, their overall movement improved, and, most importantly, their spirits had been lifted. After the class had finished, I always served my students a snack and we’d talk for a while. Some of the residents with dementia would reminisce about where they used to go to dance with their spouses. One resident in particular spoke about a church in Evanston, Illinois that had a Scottish affiliation and offered Scottish dance lessons. She even went so far as to quote me the exact street address. The repetition of certain exercises helps people with Parkinson’s to concentrate on movements that have become difficult for them, such as doing two things at once. People who have suffered a stroke are able to express themselves by moving to the music even though they can’t talk. Sometimes seniors’ medications stop working for them and yet the classes gave them relief from their symptoms.

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Real-Life Story

I recently had a preliminary meeting with the adult son of an 82 year old senior who was diagnosed with dementia. The senior had been living with him for a number of years and was having issues with wandering, falling, and incontinence. In order to alleviate the stress of having the senior in the adult child’s home, a part-time caregiver was hired during the day to meet the senior’s care needs. During our meeting, my client did not want me to meet the senior in order to avoid unnecessary agitation. His mother was not born in this country and spoke a limited amount of English. After learning some facts about the senior’s behavior and financial realities, I informed my client that the senior was a candidate for assisted living with memory care. But, the catch was she needed to be in a Continuing Care Retirement Community that would keep her once her funds were exhausted. Or, she could move to an assisted living that offered memory care. Then, she could be moved to a nursing home that accepted Medicaid when she still had enough funds to move to a decent community.

Right after Christmas, my client called me and said his mother had fallen. The rehabilitation community where she was receiving therapy had set a release date for the following week. My client asked me to come and assess the senior and make suggestions for a long-term care community.

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Real-Life Story

My client was 102 years old and had lived in the same independent living community for more than 12 years. She had moved there with her husband when the community was a homey retirement home. After her husband’s death, she remained there with 2 part-time caregivers who provided total assistance with bathing, dressing, escorts to the dining room via wheelchair, and transporting her on errands. She was alert.

When I went to assess the client, I was greeted by 5 family members who were gathered in her lovely 2 bedroom apartment. As they explained to me, the community had been purchased by another organization that was turning it into a glamorous, high-priced, marble-clad independent living community. As I was listening to them, I noticed a baby grand piano occupying the corner of the room. And at one point during the conversation, the caregiver assisted my client with being seated at the piano. She delighted me by playing a wonder rendition of George M. Cohan’s work, “Give my regards to Broadway.” She could still play despite needing help with other activities of daily living!

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As a Certified Guardian, I am often asked to act as a senior’s Power of Attorney for Health Care when s/he doesn’t have a family member who is willing or fit to act for him/her. Simply stated, the Power of Attorney for Health Care grants the designated “agent” control over the senior’s decision-making, including end-of-life decisions if the senior lacks the capacity make the decisions on his/her own. As a Power of Attorney For Health Care, you should be thoroughly familiar with a senior’s personal, financial, and medical history before accepting this serious responsibility. Please read the following real life story that makes my point.

REAL LIFE STORY

Five years ago,  I was called at the last minute to act as Power Of Attorney (POA) For Health Care for an 85 year-old  woman.  It was the day before she was to move to independent living at a retirement community. Independent living used to mean that the senior can basically function on their own with some assistance with meal preparation and housekeeping. Now there are a lot of ala carte services that can be brought to the senior’s independent apartment, allowing him/her to remain there without changing to the assisted living level of care. The woman’s former POA had moved out of state and had written her a formal letter of resignation. A trust company had been appointed to act as her Power of Attorney For Finances.