How a story is told…through the eyes of a loved one and caregiver.
I work in a variety of settings. Sometimes a nursing home assisted living, hospital, mental health unit, or a patient’s home. There are times I visit patients in other facilities that I am not affiliated with but have been in my past. All provide insights and experiences, and information that can be used during my next encounter with the patient and caregiver.
The home setting is unique. It’s the most profound representation of a person’s life. It presents the outside image and tells the story of the client and family unit that grew into a family. The pictures tell a life story of achievements and adventures, family values and what is important to the person I am visiting. The furniture gives me a hint of comfort and décor of the home, utilitarian or for show. The papers and books tell me of one’s interests and ability to organize them. The lack of content or excess helps me determine the need for outside assistance, or the need to investigate why the clutter exists. I look for fall risks (e.g., runners, and loose rug edges, pulled up carpet or clutter in the path of walking) and lighting. I check the stability of stair handrails and clutter on steps.
During a home visit, I want to learn about the client, their expectations and needs; and the caregiver too. Both are integral to the support and care to be planned and the safety of the client. Although the patient is the primary concern, the family unit and caregivers must be educated about health, management of behaviors and medications. The stories and observations from the moment I enter a home or room can be brought into conversation and connect with a person during my current or next visit. It’s a link to their past and path to learning more about the individual.
Over time, with the development of trust, everyone in the setting feels supported and important. The client gets stabilized and is encouraged to do as much as possible with minimal assistance so that integrity and self-esteem can be maintained. Regardless of the disease process, humans need a sense of identity and self-worth. That can only happen when everyone understands that mutual respect and health is the focus of each intervention and recommendation.
This process is no different in a person’s room at an Assisted Living or nursing home, where their clothing, demeanor, and activities for the day, along with limited decorations (only due to space) permit a glimpse inside their hallowed life. With less environmental cues of personal touches that tell their life story, being sensitive to what is present is greatly appreciated.
In an isolated and secluded environment the individual may be more distant and forgetful, debilitated, and the environment more pragmatic to the care needs at hand. It is very different until you take the client’s hand and sit next to them, speak to them with good eye contact and diction and tone so they can hear what you are saying. The individual can sense your presence and caring demeanor, and they can sense if you are interested or just passing information on to them; they can make a connection, forget it and make it again, depending on how the initial connection is established. When dementia is present, and as it advances difficulty is faced by everyone, yet more heartfelt for the caregiver and family member.
With advancing dementia, there is a slow, progressive loss of the person who was so special to you. It doesn’t mean they are gone; it means that you have to be persistent in trying to get them to come out! And if their demeanor has changed, or they become more easily irritated, sleepy, sluggish, reclusive, annoying by repeating the same story or talking to shadows or people you cannot see, just take a deep breath and relax. They are comfortable with your presence and voice to be in the moment of their mind and life and share it with you. If you are impatient, you may want to visit at another time. Engaging the person with dementia gives hope for their recall, acknowledgment of you in their past and present life, and a distraction from where their mind was focused—deep into the past.
Patience, love, kindness, gentle hand holding or touch, and a soft voice of a familiar song is calming and relaxing for both you and your loved one. Be sure to use medication as a last resort as it can further distort their reality and push them back in time even more, or increase their agitation. Redirection, gentleness, and your presence is vital to how their day will begin or end.
If we can give few moments of quiet redirection, a gentle touch, stories, and memories shared, we offer them supportive kindness to get through a turbulent, and stressful experience that is unknown to them, as many were unknown to us as we too were growing up. Lend a hand. Share a soft voice, story, or song. Be present at the moment when you are with them, so you experience the moment together, and the guilt that many may feel in the long run may be quite less, knowing you tried and you showed you cared.
Each time I experience this kind of caring, it permits me to feel the gratitude for the individual’s life and what they and their family share with me. It is beyond what anyone could purchase or design, and has no price except love, positive energy, and wisdom.This is the adventure through aging and dementia. It is best experienced with loved ones and those who know and care about the individual.