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The Security of a Routine
January 2024
Survival is on most caregivers’ mind: “How am I going to get through this?” “When will it ever end?” are thoughts we caregivers experience. Thus, we look for survival tips such as creating special moments, taking a break, developing a care team which involves delegating responsibilities, joining a support group, and above all watching our attitude.
Another way to survive is to develop a routine. Sounds boring. Maybe, if not done properly. But a routine gives the patient security, a rhythm and a way to relate to life. It is a way to keep a calm environment. A routine puts things in their place and as with any schedule it gives us more time to get things done or more time to have fun.
Why does a routine provide security for the memory patient? The Alzheimer’s Project answers that question in their June 7th, 2020 *blog:
“Memory loss and other changes to the brain caused by dementia can create stress, anxiety, and irrational behaviors. The importance of routine and familiarity to persons with dementia is profound! Daily structure can help decrease these undesired behaviors such as aggression, restlessness and agitation. As a result, the caregiver will experience less stress and be able to give better care.”
The Unspoken A Word
Over the years I have watched the awareness of memory disease increase. Back in 1988 dementia, especially Alzheimer’s dementia, remained a complete mystery to the average person, me included. My introduction began when I spoke with a surgeon about a potential triple by-pass surgery for my father. At that point, my father had been a heart patient for fourteen years. He had been one of the first triple by-pass heart patients twelve years before. His arteries were so clogged again he needed a second surgery. This new surgeon refused to do surgery on my father. My goal was to find out why.
When he said the word “dementia” to me I paused…I had heard that word before. What did it mean? It seemed shameful, embarrassing. He bluntly refused to extend my father’s life. He said my father would become like an animal if he lived longer. Those words stung and added to the shameful perspective. Now I realize this surgeon did not completely understand dementia, he just knew it could be a horrible existence. If properly cared for, dementia patients can avoid such behaviors and some never even have such tendencies. In fact, our knowledge of the disease has drastically improved since the 1980’s.
Thanks to the work of the Alzheimer’s Association and many other wonderful organizations, awareness of memory disease has increased. The average person probably knows at least one individual with memory disease. However, there are still people who are not familiar with memory disease. There are still people whose response is to hibernate with their loved one who has Alzheimer’s, never saying the A word, complicating their journey all the more.
September 2019
How to approach your loved one with memory disease is confusing if you are new to the journey. When the loved one is acting like a child it is easy to slip into becoming the parent. Instead of getting the response we want, we instigate confusion. Yet the memory patient needs guidance. Our loved on needs us to come alongside and join them in their reality. The outline above is excellent guideline for the family caregiver who is just starting the journey or needs a reminder of how to direct in a loving, respectful way.
The Alzheimer's Association has good suggestions on their website. Check out: https://www.alz.org/help-support/caregiving/stages-behaviors/memory-loss-confusion and click on "How to Respond."
In A Gradual Disappearance I have a chapter on this topic called "Coming Alongside."
Shower and Bathing Issues with Memory Patients
Often I am asked for tips on how to get a memory patient to bathe, either during the question/answer period of a presentation or afterwards. There are a myriad of reasons dementia patients resist bathing. The hard part for the family caregiver is to figure out the reason. Once we know the cause we can address the issue and hopefully come up with a positive solution.
Lighting in the shower might be too bright for one patient, while seeming too dark and dim for the next. Thinking they just bathed an hour ago when in reality it was four days ago could be another reason. Water temperature, fear of water, modesty, and a shrinking of personal space can be other possibilities. Maybe in their mind they are 5 years old again and a rubber ducky or another bath toy would entice them to bathe. Sometimes a “dirty” baby doll or truck that needs to be washed makes bathing possible.
My mother was not a good swimmer and fear of water became part of the issue for her. I discovered that because her personal space was shrinking she was not aware of the hand held shower. So a stream of water coming out of nowhere scared her. Talking her through the process step by step seemed to help take away some of the fear. Explaining the next step, such as, “now I am going to run the water. I am getting the washcloth wet and will rub your back. Now I am going to run some water over your back.” The step-by-step explanation helped put her at ease.
Breaks for The Caregiver
May 2022
Due to various circumstances, we find ourselves taking care of our parents or spouse with dementia. This role is not a childhood dream fulfilled. Rather an unexpected duty we must perform. Caregiving can claim years of our lives – eight to twenty years in some cases. The toll it takes on our lives can be devastating, if not approached the right way.
There are many ways we can take care of ourselves on this journey, but one of the best is to take breaks. Big and small breaks become a necessity if we are to carry on. That is why developing a family team is so important. If we are the only available family member, close friends, adult day care, or a part time caregiver can also fulfill that role. Some paid caregivers take memory patients for rides in the car to see familiar sights giving us caregivers needed time at home. Someone coming in for an hour or two, so that we can take a walk, go to lunch with a friend, go shopping, biking, lay out by a pool, go swimming, or whatever it takes to be us again, is a necessity. Each week should have time built in so we can get away or be alone. It helps balance our perspective and gives us needed energy to continue.
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Most photos are taken by Stanley J Lonseth, capistranobeachphotography.com