An easy thing to solve in the life of a dementia patient is frustration over getting dressed. Adaptive clothing is a great option to fix the daily struggle of tying a shoe, buttoning a shirt or pants and pulling on a garment by someone with decreased dexterity. Clothing is available with velcro closures, configured in a variety of ways, including: front blouses with velcro instead of buttons, wrap skirts with velcro, side opening pants with velcro, front closing bras, zipper front dresses and shoes with velcro closures. Many of these garments open completely, so it’s easier for you as the caregiver to help dress your parent. A great source for this type of clothing is Silvert’s. Find them online at www.silverts.com.
There are several helper devices that are extremely useful in the home and on the go. The initial struggle of the day can be simply finding a way to get out of bed. Even in households where there are two people, in an elderly couple many times the healthier person is still unable to lift the other from the bed. A triangle pull can be positioned over the bed so it can be used to pull one’s self up to a sitting position. This device is very low tech, yet it fosters the development of upper body strength and helps maintain personal independence and dignity.
Another option to help with the daily transition is to install a hospital-type bed, one that raises and lowers both the head and foot areas with the touch of a remote control. The idea of having a hospital bed at home can be an unpleasant thought, but it may mean the difference between being able to stay at home versus moving to an assisted living facility. Under the right circumstances, the motorized bed may be covered by Medicare as a medical expense if ordered by a physician.
If you find your parent is spending a good deal of time in bed, check into a pressure sensitive mattress. The last thing you want is the development of pressure ulcers (sometimes called pressure sores), which occur when the skin breaks down in areas from constant pressure against a surface, even a soft surface such as a bed or chair.
Pressure Guard® makes a series of specialized mattresses for preventing and managing pressure ulcers. Their Turn Select mattress slowly (very, very slowly) maneuvers your parent into different positions to minimize the effects of immobility on the skin.
Surprisingly, extended periods of simply sitting in a chair may lead to pressure sores. As long as movement is possible, encourage your parent to move as much as practical, at an activity level that is comfortable for him or her. Make sure the skin is examined carefully on a regular basis so any sores may be treated as quickly as possible. Bath time may be a good choice, if you (or another caregiver assisting with the bathing) can inspect without causing embarrassment to your parent.
Don’t rely on asking your parent if he is experiencing this type of condition; he may not even be aware of it due to reduced feeling in certain areas. Or, to avoid an uncomfortable examination, he may deny anything is wrong.
Pressure ulcers are a serious health complication that can cause pain and result in a slower recovery from other issues.
My mother was the epitome of independence and self-reliance. As her health began to change, our family witnessed a difficult transformation, as she needed more and more help with even the smallest everyday tasks. Mama smoked for almost thirty years, from the time she was fourteen years old until her late forties. As a consequence, she developed emphysema, a breathing disorder that makes it increasingly difficult for the lungs to function normally.
The effects of the emphysema grew over time. She was able to manage initially with an inhaler (using the medication Ventolin) and as the disease progressed, she became dependent upon oxygen, at first only at night and finally, she required it twenty-four hours a day. We learned about breathing treatments with nebulizers, portable oxygen tanks on wheeled carts and in shoulder bags, and concentrators that produce their own purified oxygen from the air around you.
What is oxygen? A colorless, odorless and tasteless gas that everyone needs to survive. An average breath takes in approximately twenty one percent oxygen into your lungs. Oxygen is necessary for our body to maintain life.
There are several things to know when dealing with oxygen. First, it must be ordered by a physician. Second, it is a covered expense with Medicare. Third, there are several suppliers from which to choose; depending on your particular city or town, there are likely several companies that could provide oxygen for your parent. And lastly, do not have an open flame near the source of oxygen. Clearly, no smoking is the rule when dealing with an explosive gas.
Oxygen tanks are heavy. They come in various sizes and it’s always a good idea to have several back-up tanks in case of an emergency, such as a power outage. If you have the very large rocket-shaped tank in your home, it will be placed in a secure base. All oxygen tanks require a key to turn them on - make sure the key is provided when the tanks are delivered. Ask for an extra key, just in case.
The smaller tanks are somewhat more portable. Those that are two and a half to three feet tall can be maneuvered by a wheeled cart. When used for traveling, you will have a choice of settings. You can either have it blow oxygen continuously or puff on a predetermined rate. The second option is usually called the “conserve” setting. You will gain a longer usage time on the conserve setting, but only do so if the patient can remain comfortable at that level. Please note that even on the wheeled cart, the entire assembly may be easier to roll, but is still quite heavy to pick up and put into a vehicle. Make sure if your parent is driving himself or herself, that he or she will have assistance if needed to transfer the oxygen cart to and from the car or van.
Before setting out for the first time, make sure the parent and any caregivers or traveling companions know how to change to a new tank when the first one is empty. The regulator is fairly simple to understand and basically screws onto the top of the tank. Once the regulator is firmly in place, use the key to turn on the flow of oxygen. If the regulator is not seated firmly in place, you will know immediately! A loud sound will alert you that oxygen is escaping. Turn it off and try again. Once you have the regulator properly installed and the flow turned on, the gauge on the regulator will indicate full.
For shorter trips, there are over the shoulder bags concealing much smaller oxygen tanks or portable concentrators. For someone who doesn’t have a great deal of strength to pick up the wheeled cart alone, the over the shoulder bag can be a welcome alternative. It’s extremely important to make sure you have enough back-up tanks in the car to cover the length of the trip or a charger cord and a back-up charger cord to maintain a portable concentrator. Leave a window open slightly for ventilation to avoid the accumulation of oxygen inside the cabin of the vehicle if your parent is using the portable during the car ride.
Things can change quickly with the health status of your parent. You may be forced to make quick decisions and critical choices that can have a significant impact on the life and well-being of your loved one. It is for this reason you need to establish your personal Caregiving Plan. By developing a strategy in advance, it will help guide you through times when you’re forced to act without much time to consider the consequences. Being prepared is vital.
The elements of your caregiving plan should be:
When you stop to consider the factors involved in your parent’s care, you will gain insight from the process and be able to quickly articulate your needs to doctors, nurses and service providers.
After you’ve written the narrative, conduct a general needs assessment of the family member or members involved. By looking at the tasks your loved one could use assistance with, you will start to get a better idea of what your present and future needs will be as a caregiver.
An excellent publication to review is Prepare to Care: A Planning Guide for Families, produced by the AARP Foundation’s Benefits Outreach Program. This booklet is available to download at https://www.aarp.org/benefits-discounts/all/prepare-to-care/. It provides a step by step approach to developing your Caregiver’s Plan.
Don’t let the idea of creating a Caregiver’s Plan overwhelm you. We all make plans every day for one thing or another; this plan is just an extension of an idea that you will be ready for whatever comes. It doesn’t have to be a formal document, an outline of what your action will be based on changes in circumstance is sufficient.
Knowing in advance what your loved one wants as his or her condition progresses will give you comfort and peace that you are making the right decision. Take time to sit down and discuss the options. Research your parent’s illness or medical condition so you’ll have an idea of what to expect as time goes on; the primary care physician could offer valuable information in this area. I found a chart format easy to create and refer back to throughout the months. Regardless of the method you choose, being proactive instead of reactive will serve you well.
While caring for my parents, one of the best things I did was create my Caregiver’s Notebook. It became my guidebook as I worked tirelessly to keep up with all of the details of the separate (and different) illnesses that were factors in caring for both my mother and father. This technique will work if you’re responsible for caring for an elderly friend or relative and could be even more important in that set of circumstances, as you may not know many of the intimate details required to manage the daily routine and medical needs of your charge.
When I was caring for my parents, I did it old school: paper-based all the way. I purchased a standard three ring binder to use as my notebook. Initially, I used a one-inch binder, but very quickly discovered it didn’t have nearly enough room. The final notebook I used was a three-inch binder with several dividers and three-hole punched pockets that were double-sided. If you want to recreate this version, you can find a notebook, the dividers, pocket folders and business card holder sheets at most office supply stores. It doesn’t have to be fancy; a standard notebook will work.
I created a cover for the notebook, incorporating pictures of Mama and Daddy, along with the title, “Caregiver’s Notes.” Your cover can be as simple or elaborate as you wish; you can use a program such as Microsoft Word to typeset the basic information and print from your home computer. Or, you can download the forms as described here from www.caregiverstrainingprogram.com.
You’ll want to create tabs to separate the sections of your notebook with the following topics:
You can create several different “notebooks” within the app, so each section of the physical notebook can be created here. The great thing about the app is that it will let you collect snippets from the web, scan and upload physical documents you have or receive or type notes as needed.
For more information on creating a fully functional Caregiver’s Notebook, either paper-based or electronic, check out my book, The Caregiver’s Training Program: What You Need to Know to Take Care of Your Parents in their Golden Years, available on www.amazon.com.
I remember thinking when I was a child how lucky I was because my parents were older. My father was fifty five years old when I was born, so my parents were a bit older than most of my peers. It was a blessing to have the privilege of wonderful parents who taught me so much and set an incredible example for me. And, I hope, I turned out to be a blessing for them, as I had the honor of caring for them in the last years of their lives. I was thirty four years old when my mother passed away, the day after Christmas. She was seventy six. My father survived for ten more months in an assisted living/skilled nursing care facility. He was in the Alzheimer’s/Dementia Care Unit and it was one of the saddest things I have ever seen. Had he lived three more days, he would have been eighty nine. He remained in overall excellent health, except for his advancing dementia and memory loss.
By 2025, the U.S. Census Bureau and the Bureau of Labor Statistics project there will be almost fifty million persons over sixty five and not in the labor force – about twice the number there was in 1995. Of all the states in the United States, Florida has the highest percentage of senior citizens, followed closely by Maine, West Virginia, Vermont, Pennsylvania, Montana, Delaware, Hawaii, Oregon and Arizona.
The fastest growing segment of the U.S. workforce became retirement age in the year 2014, according to the U.S. Bureau of Labor Statistics. Seventy-eight million Baby Boomers, starting from the year 2006, will begin turning sixty years old, at the rate of almost 8,000 per day. The Boomers represent thirty seven percent of the nation’s population over the age of sixteen.
A study by AARP (American Association of Retired Persons) found that thirty three million Americans will take on the responsibility of caring for their aging relatives themselves, as unpaid caregivers. For many Americans, life at forty, fifty or even sixty years old will include care for an aging parent or relative.
As we grow older, the baby boomers, Generation X and everyone in between will be touched in some way by the issues of elder care. It is a never-ending maze of doctors, specialists, health care facility choices, hospice, estate planning, benefits and stress. You find yourself asking so many questions:
How do you know if your parents need an assisted living facility or skilled nursing care, or even what the distinctions between those two levels are?
When do you make a move, and better yet, how do you approach your parents with the discussion?
How do you know that one of your parents needs end-of-life care from hospice?
How do you convince your parent that it’s not safe for him to drive anymore?
How do you protect the family assets while maintaining eligibility for government benefits?
How do you pay for it all?
I’m here to tell you the answers are not easy, nor are they easily discovered. It is my hope that through my years of experience in the world of senior care, others may learn a few things to help their individual paths go a little more smoothly. Check back here often for information to help you care for your aging loved ones.
Melissa Sprouse Browne, senior care expert and author of The Caregiver's Training Program, My Best Friend is a Liar and the 755th Field Artillery Battalion: A Unit History. She is the owner of Cora Care and the founder of Seniors First Home Care. Her radio show, The Senior Smart Show, is available as a podcast.