THE CAREGIVERS: An Extraordinary Journey of Love
by Victor Good
Advice for Caregivers
Communication—As verbal communication disappears, you must rely on other methods. You have to be aware of signs of discomfort, the way your loved ones move, scratch an area, make a facial expression, or just a look in their eyes. This is how you get your answers and can see by their response, up to a point. You have to learn to be okay with their sometimes-irrational responses and always stay calm (which is not easy if someone is cursing you out). The caregiver has to always be smiling and cheerful in order to define the atmosphere /environment in which the afflicted person lives.
Be cognizant of your love for each other—As my parents’ mental decline progressed, I found myself so focused on the minute-to-minute, day-to-day needs that I was going about my days like some of the overworked nurses I had seen in nursing homes: going from patient to patient changing diapers and giving medications, with no time to sit and talk or socialize in anyway. That is why at one point I decided every time I moved Mom I would say “I love you” and give her a long hug. As my father’s needs increased, I did the same for him. Along the way, we recorded the instruction in my parents’ daily logs to begin each caregiver session with a hug. It had to be personal and caring, and the feeling had to be there. My parents may not have been able to always express the way they felt, but there is a certain feeling, a relaxing of the daily stressors, delivered with a good, sincere hug. It is food for the soul.
Family disputes—To be preoccupied with being judged or ridiculed by other family members or friends is a terrible distraction. As difficult as it may be, try to focus your energy and attention on the care of a loved one.
Familiarity—In order to create the most comfortable environment for a loved one with dementia, surround them with familiar items from throughout their lives.
Positive attitude—Try to stay positive and upbeat around your loved one. Encourage everyone who comes in contact with them to do the same.
Engagement—Keep them active. You shouldn’t raise your kids by simply sitting them in front of a television, and neither should you do that to your parents. Television time should be kept to a minimum and only to watching upbeat programming. Beware if someone becomes like my father when he started interacting with the programs after watching a couple of old westerns.
Lighting—The more natural light, the better.
Tripping hazards—The fewer stairs, the better. No stairs, the best. Area rugs need to go away. Beware of thresholds, I left only one small one in my parent’s apartment, and that is the one Dad fell over, causing him to break his hip (even though it had grab bars on either side).
Grab bars—Place as many as you can in the bathroom area, especially shower. Wherever possible, install them along walkways throughout the house and entryways.
Music—Make a list of their lifelong favorite songs and create CDs (playlists) of the music.
Maracas—These are a surprising good tool. The loved one can either shake them or knock them together to the beat of the music, for both mental stimulation and beneficial physical movement. Mom used them to hit the balloons and beach balls. (Supervision is necessary due to possible injury to peers.)
Exercise—Arm, leg, hand, even finger movement, it’s all good. Walking is the best exercise and best for the prevention of pressure sores.
“Dancing”—True dancing became impossible by the time my parents moved into our home, but simply taking their hands in yours and swaying to the music evokes smiles and helps keep arm, shoulder, and hand muscles limber.
Balloons and beach balls—These promote hand–eye coordination, exercise, and fun!
Nerf football or similar—Initially, we added in a verbal aspect by counting out loud each catch. My parents would count to one hundred catches, five times.
Phone / address book—(See the sample on page x.) This is an invaluable tool. Both of my parents used it frequently as their mental abilities declined. It was a resource and also entertainment, as Mom liked to sit and read through it, over and over.
Keep them reading and writing for as long as possible—Make it interesting and interactive. You could use workbooks to guide the sessions, read aloud, or engage them in discussions.
Get an aphasia rehabilitation workbook —This is available in print or on CD. Its primary purpose is stroke rehabilitation, but it was a helpful tool for us as we worked with my dad to manage his PPA symptoms.
Research hospice care—Find out what is available in your area. In our experience, no one clearly defines the parameters of care or the supplies available. You have to constantly research what you need for your situation. We found the name of the hospice supplier on a package we received (supplies ordered by the hospice provider), and Julie found a catalog of products on their website to use as a reference.
Medical and other useful tools
Hoyer Lift—Avoid the “mommy toss”! Save your spine—and hers—with this much gentler approach.
Transfer chair—This is, basically, a small wheelchair. Ours was extremely helpful as Mom lost her remaining mobility toward the end, as it was easy to use indoors to navigate through doorways and into bathrooms, etc.
Walker—The key to a comfortable walker is a proper fit. Its height, the biggest issue, can be easily adjusted. Some walkers accommodate special needs, such as those of people with Parkinson’s, and others offer attachments, such as those that help if the user has an immobile arm.
Wheelchair—This seems like a basic item: you need one, so you get one. In fact, not only are there numerous wheelchairs on the market, but there are huge differences between them. Julie and I were completely ignorant when Mom got her order for her wheelchair. Medicare pays for one every so many years, so once you’ve got it, you’re stuck with it. The local medical supply company we dealt with gave us a used, standard wheelchair, with no consideration for the size of the patient. They did no “fitting” of any sort. Julie and I realized early on that Mom’s rear end was smashed in between the sides. We eventually purchased a larger, reclining one that fit her perfectly and was comfortable enough for her to nap in.
Suction machine—This was a big help to Mom in her later days, but the hospice provider did not offer it; we had to request it. The inability to swallow was a major issue for both of my parents. My Dad suffered extensively with his choking, but at that time we did not know this device existed. I know now it could have provided some relief. To watch someone you love choke is simply devastating. This item can help. It cannot make it all the mucus go away, but it can provide some relief.
Supplemental oxygen—Mom’s oxygen levels were low, so she needed supplemental oxygen. Oxygen also improved her alertness when my parents lived in Colorado at an elevation of 7,000 feet. After Mom moved to our home in New Hampshire (at an elevation of 250 feet), her oxygen levels improved, so supplementation was not necessary at first. In her last months, we used it again, just to help her breathe. First, the supplier gave us no “humidifier” to add moisture, the oxygen dried out Mom’s mouth. Then they provided an in-line humidifier, which trapped water in the line—they did not provide the required “moisture trap.” The effect of this was to put water directly into Mom’s lungs.
Mouth swabs—These help keep the mouth moist but can also be used, soaked in mouthwash, to clean the mouth.
Barrier creams—These are helpful for treating and preventing bedsores and pressure sores. Before we began hospice care, we ordered most of these through Amazon. After hospice, we were able to get needed creams through the hospice supplier.
Plates and dishes—Use plates that have a small, raised edge that allows food to be more easily loaded onto the utensil. We found the ideal to be 8-inch pasta bowls made by Waechtersbach (a German company). They come in a bright red color, which has been suggested as a color that inspires appetite. Alternatively, you can purchase clip-on plastic rings made to fit on standard dishes. These are available through medical supply companies.
Flatware—Use weighted and bendable eating utensils, developed to help those with limited range of motion in their wrists or hands. The handles of these utensils are oversized, allowing for an easier grip. The metal ends of the fork or spoon can be bent in any direction or angle, allowing users to feed themselves with one simple motion.
Hand and finger exercises—You can find many tools for these, from simple squeeze balls to more technical finger exercisers.
Cups—Don’t use glassware. Unbreakable Tervis Tumblers were our preferred type of cup.
Weighted blankets—Some like these, some do not, but Mom’s weighted blanked seemed to give her comfort in her final months.
Aprons—These are a laundry saver. Dad’s disease caused him to frequently drop his food, so aprons were a big help.
Diapers and other needs by mail—HDIS.com offers a large selection, fair pricing, and quick delivery.
Pads—HDIS.com sells washable, disposable, and booster pads.
Julie and I ordered many additional items from Amazon.com.