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Caregiving Dementia Uncategorized

Dementia Affects The Whole Family

The very word “dementia” strikes fear into every person over 65 and every daughter or son over the age of 40. Because, when signs of dementia first appear in you, your spouse, a parent or another loved one, you know that your world is about to be turned upside down with difficult diagnostics, family dynamics and an overwhelming sense of helplessness. But there are ways to prepare yourself, smooth family dynamics a little and ultimately help your loved one cope with the kinds of loss that is unique to dementia patients.

The story that I am about to share with you is true. It is the story of how my husband’s family and I had to deal with the diagnosis and progression of my mother-in-law Nancy’s dementia during the pandemic of 2020. It is also a reflection on what we could have done differently that would have helped us plan Nancy’s dementia care in ways that would have provided her with better, more consistent care, as well as address the imbalance of caregiving responsibilities that so often burden the closest family member. 

Here is Nancy’s dementia story:

We started to realize that Nancy was having some difficulties living on her own a number of years ago. She had started avoiding her friendly get-togethers for very vague reasons, saying that the activities had just gotten to be “too much” and that she was going to find other things to do. But hindsight being what it is – we now realize that it was getting harder for Nancy to keep up with conversations and participate in activities. She began to feel less like part of the group and more like an outsider. But these were all vague feelings that were easy to rationalize away.

My sister-in-law, Pam who lived nearby, was able to pick up the slack and help Nancy with bills, appointments and to help her problem-solve when things became too confusing. Pam was able to keep Nancy “scheduled”. After all – the goal was always to keep Nancy at home for as long as we could. But when Nancy’s dog died – losing her own personal anchor, Nancy’s ability to maintain a schedule suffered. She had lost that furry companion who reminded her to wake up in the morning and when it was time to eat and walk. So vitally important tasks like taking her medication began to be forgotten too, which led to several hospitalizations.

During one of those hospitalizations, Pam asked the doctors to perform a series of neuro-psychological evaluations. It was then that we realized the extent of Nancy’s decline. We could no longer explain away Nancy’s behaviors with a simple shrug of the shoulders or a “you must have misunderstood”. These reports helped to change the focus from isolated behavioral lapses to a documented problem that the family needed to help Nancy address. Suddenly, the geography that separated the family and the pandemic that made it hard to see these lapses for ourselves were irrelevant. We had hard proof that Nancy needed our help – even if she didn’t realize it yet.

Time for Next Steps

The family made the decision that Nancy would move into assisted living directly from her hospital stay. Using some of the tips that I picked up  from the wonderful folks at Chandler Hall in lower Bucks County, PA, we tried to make her new home in assisted living feel as much like her old home as possible so as to reduce confusion and feelings of disorientation. For example, all of the dishes and silverware were in drawers as close to possible as they were before her move to assisted living. Her bedroom and living area were all arranged like before down to the pictures on the walls. We must have done a pretty good job, because Nancy didn’t seem to notice that her apartment had changed. She simply thought that she had new neighbors and new routines. She was happy for the structure that was provided for her. And she seemed to improve with more consistent company of these new friends and neighbors.

Family Care is Still Needed

My sister-in-law Pam was still the contact person and bore the brunt of the responsibility for Nancy’s care and saw Nancy weekly if not more. When Pam noticed changes in Nancy’s behaviors, she would notify the Assisted Living staff and adjustments would be made in her living situation for as long as they could without going into a specific Memory Care Unit. Maintaining consistency and routine is vitally important to patients with dementia. And much as we wanted Nancy to be able to maintain her current living situation, within about 6 to 8 months, it became clear to us that Nancy needed the kind of care that only a qualified Memory Care team could provide. The problem was that meant that Nancy needed to move to yet another facility. Nancy’s steady cognitive decline meant that a move to a new place with different ways of doing things would be more difficult for her. We were told to expect setbacks.

Nancy lives in Florida – not in Bucks County. If she were in Bucks County, Nancy would be able to take advantage of the continuum of care offered at Chandler Hall. By having a complete continuum of care – from Independent living, Personal Care, Assisted Living, Memory Care and beyond, the residents at Chandler Hall can move through their advanced years with a continuity of care, friends, caregivers, and familiar faces in a secure and welcoming environment.

Change is Harder when Memory is a Challenge

One of the things that became apparent in the early days of Nancy’s cognitive decline was that in order to form relationships with people, you need to remember small things about them. Things like their name, where they live, their family story and their friends and connections all help us to stay connected to our sense of who we are and how we relate to where we are. If you can’t remember any of those details, the people around you blend in together leaving you to remember feelings, but unable to remember any of the facts that form the backbone of conversations and relationships. Moving to a new facility would be disorienting. Nancy would need to learn to trust new staff, caregivers and other residents. That might prove to be difficult.

We have learned through our experience just how important having the ability to access appropriate on-sight care is to our loved ones and also our entire family. Knowing that your loved one has consistent, appropriate, professional care is – quite frankly – everything! It provides enormous peace of mind to both the family and the patient. Plus, it helps to ease the transition anxiety that family members may experience when facing the difficult decision to move their loved one to a different kind of living situation.

Making Hard Decisions

Moves are disruptive – for anyone. We want the best for Nancy and yet we need to respect the process and bring reluctant family members along too. We want people to know who Nancy is – who she really is.  A good family relationship helps, of course. But it is the continuity of care that gives everyone the peace of mind that each resident and their family deserves. Nancy is still present. She has needs, likes and dislikes. There are flashes of her humor, her wit and her personality that appear every day. But we know that the Nancy we know is getting “thinner” every day as she slips further into her dementia-induced isolation. Right now, we are waiting until Nancy hits a point where even the most reluctant of our family members can no longer deny that Nancy needs specific help in Memory Care. And that will mean a harder, more difficult move to yet another facility that “specializes” in Memory Care. 

Nancy’s journey is ongoing. And by default, our family journey is too. So my final word to you is, “Do your homework up front!” When you are considering personal care, assisted living care or memory care for a loved one, think about the importance of having a continuum of care on one campus, with experts who know how to provide the expertise you might need within the framework of a community you will need. And if you are in the Bucks County, Newtown PA area, look into the wonderful programs at Chandler Hall where Person Centered Care is the hallmark of all that they do. 

Categories
Blog Dementia Memory care

Caregiver or Referee?

Hands down! The most difficult job that I have ever had was that of caregiver to my husband who was cognitively compromised. It took every ounce of emotional, intellectual and physical strength to be able to understand, empathize, manage and anticipate my loved one’s needs in the face of our communication breakdown. Add to that a marital dynamic that was already hardwired and – well, let’s just say it was more than a difficult time. 

Sadly, my situation is not uncommon. And while we all empathize and feel that we understand the frustration surrounding dementia or communication disorders, living the reality is an entirely different proposition from reading about it. But one thing that reading about dealing with difficult behaviors helped me to understand was that it was absolutely necessary to understand the source of the behavior and to have an arsenal of strategies available to help us both cope and communicate.

The Source of Frustration

Whether the source of the communication problem is from Alzheimer’s dementia, stroke, a brain tumor or bleed, understanding the center’s of the brain that are affected can help the caregiver better understand the patient’s frustrations and difficult behaviors. For example, anxiety and agitation is very common amongst Alzheimer’s patients. Like many of us who experience anxiety for a variety of reasons, Alzheimer’s patients or patients with frontotemporal dementia can experience anxiety due to an awareness of their declining condition. That can sometimes lead to oppositional behaviors or fretfulness. 

Patients with brain injury to a specific center of the brain that may affect their ability to speak or communicate will understandably experience frustrations that may lead to fits of anger or non-compliant behaviors such as “forgetting” that they need assistance to walk or perform certain tasks. And since they have difficulty communicating, they may resort to attempting to “do it themselves”. The desire to do it themselves or be the person they once were can lead to some dangerous situations that make the job of caregiving exponentially difficult. That is where safety becomes a primary concern.

It is Not About You – But Then it Is

It is important to remember that the journey of caregiving is really about making your loved one’s life easier and learning how to accommodate their needs. And while that puts the focus on them, the reality is that your job requires a herculean effort to stay calm, patient and objective enough to find innovative ways to handle your loved one’s difficult moments and demands.

As a caregiver we intellectually know that we must take care of ourselves and seek help and support. But when we are “in the moment” of a difficult behavior or meltdown, we need to have our tools and strategies ready to use. Because in moments of crisis we don’t really have time to Google an answer. We need to already know what to do or how to handle a difficult situation.

Dealing with Difficult Behaviors – Chandler Hall Speaker Series

As part of our mission of helping patients and families navigate the journey of aging not matter what form it takes, Chandler Hall is pleased to welcome Danielle Micale, MHA, LNHA, CTRS, CDP, CSDDCT, CDCM to our third and final Dementia Speaker Series Zoom seminar of 2020 entitled Dealing with Difficult Behaviors.  

In this session Ms. Micale will walk us through the ever diverging pathways of helping us to help our loved one find peace and comfort in the midst of anxieties, anger and other frustrations that are the foundations of non-compliant behaviors and difficult to fulfill demands. In this intimate Zoom setting, attendees will be able to interact and ask questions and hopefully find new understanding and new strategies

Please take a few minutes out of your Saturday morning on October 10, 2020 to participate in this sure to be important discussion of Dealing with Difficult Behaviors. RSVP today at 267-291-2302 or email your response to: jriegel@chandlerhall.org 

Categories
Family Stories Uncategorized

Barbara’s Family Story

Up until that moment, Barbara had been “managing” her memory losses. She had been functioning reasonably well with the help of family and outside organizations. You see, Barbara was adamant about staying in the familiar surroundings of her home and her routine. But as in most of these situations there came a time when the primary concern was no longer “comfort” but rather “safety”. By now, even Barbara herself knew this.

Close to Home

It was important to Barbara and her family that she stay close to home. She was a lower Bucks’ County girl. Yardley to be exact. While they researched many fine facilities close to home, it was Chandler Hall that felt right. It was 5 years ago that Barbara moved into Chandler Hall’s Phelps Manor House. The family was attracted by the Quaker values knowing that their Mother would be not only well cared for but given the respect that she deserved.

As Barbara was very social, she enjoyed the other residents and the Manor House staff and caregivers. And they enjoyed her. She made fast friends and enjoyed the many activities and programs designed to stimulate and challenge her cognitive skills.

When more intensive care is needed, Hicks Memory Care is here to help

Almost two years ago, Barbara’s dementia progressed to the point where she needed more intensive care and supervision. She was re-housed at Chandler Hall’s Hicks Memory Care building. Here she continues to receive personalized care and mental stimulation in a more secure environment suitable to her evolving needs.

Barbara’s daughter Laurie and her son Pete love the frequent Skype phone calls allowing friends and family to stay in constant touch with Barbara – a contact that is increasingly important in this time of covid-19 accommodations and social distancing. Laurie is also comforted by the weekly phone calls with her Mother’s medical team updating the family on Barbara’s health status, as well as the additional communications she receives from her Mother’s caregivers. Laurie and Pete feel that their Mother is receiving excellent care.

Barbara with her daughter, Laurie

As Hospice care becomes necessary….

… Barbara continues to be surrounded by the caring Hicks staff. Scheduled Zoom and Skype calls help to keep the family informed on Barbara’s health status. The family is able to have brief conversations with Barbara as she is able. Barbara’s daughter Laurie is appreciative of the extra effort that the Hicks unit staff takes to make sure that the family is informed when there is any change in Barbara’s health status. 

A Critical Part of the Community

Barbara’s Chandler Hall experience has encompassed 5+ years of care. From her beginnings at the Phelp’s Manor House to Hicks Memory Care and finally Hospice services, Barbara has experienced a continuum of person centered care in the Quaker tradition of individual need and individual respect.

As Barbara’s journey is continuing to her final chapter, her daughter Laurie shared her thoughts about her Mother’s time here; 

“I know that my Mother is warm, safe and cared for. I really believe in Chandler Hall. It is a critical resource in the community.”

Categories
Blog

Support for Those Caring for Someone with Dementia

Family members caring for loved ones with dementia find understanding and helpful advice at meetings of the two Alzheimer’s Association caregiver support groups at Chandler Hall in Newtown, Pennsylvania.
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Categories
Blog

3 Things to Look for in a Memory Support Residence

Finding a memory support residence for a loved one can be challenging. We published an article recently in the Bucks County Courier-Times about it.  You can click here to get to the original article we have republished below.

For many people, the post-retirement chapter of life means having the freedom to pursue hobbies and activities or the ability to travel and explore. As people age, and specific health care needs develop, sometimes certain living accommodations must be considered, such as personal care or memory support residences.

If you are considering a memory support residence for a loved one, it can be quite a difficult decision. Knowing what to look for in this type of residence — and being familiar with the importance of person-centered care — can make taking this step much easier. Here are three things to look for in a residence for aging adults who live with memory problems such as Alzheimer’s disease or other forms of dementia.

1. Seek out a person-centered care model

A person-centered care model is critical for ensuring your loved one receives the best possible care at a residence. Residences with this model typically schedule events and activities that evoke pleasant memories and interactions with familiar surroundings to ensure residents are happy. This model promotes personal preferences and tailors care approaches for each resident to be independent for as long as possible. Residents’ family members are welcome to join their loved one throughout the day.

2. Look for a therapy program that specializes in Alzheimer’s and Dementia-related diagnoses

Residents’ needs change over time, and the support they receive should constantly be evolving with those needs. Look for a home that implements new and proven memory support techniques to meet the needs of your loved one. Nursing, dietary, housekeeping and activities staff should be specially trained through a program that focuses on Alzheimer’s habilitation therapy, one that focuses on meeting the needs of each resident “at the moment,” with dignity and respect.

3. Find a place that offers a well-rounded support system

While the safety, comfort and happiness of your loved one in a memory support residence is of utmost importance, being a family member of someone with Alzheimer’s or dementia can also require special support. Look for a residence that offers a well-rounded support system for both residents and their family members. Some places work with local specialists in the field of dementia — such as psychologists, medical social workers and geriatric physicians — ensuring residents the care they need as well as being able to give peace of mind to their loved ones.