Good Afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.
Today’s topic is “What to Expect in the Severe Stage of Alzheimer’s.”
In the severe stage of Alzheimer’s, even long-term memory fails. It’s possible, however, to prompt some memory with pictures and sounds, bringing enjoyment to both the caregiver and their loved one.
As a caregiver, you must be prepared to accept that the individual with AD may vacillate in and out of lucidity. They may not recognize you or they may call you by someone else’s name. They’ll also vary in responsiveness. If you’re prepared for this, it will be easier to accept and move forward.
Communication also will be difficult in this stage, making it hard to determine how much your loved one can comprehend. Never assume they don’t understand what you’re saying, even if they don’t respond. They may recognize statements, phrases or movements.
As a caregiver, you must continue to look for new ways to use all five senses to communicate. You’ll have to learn to read nonverbal cues and be attuned to any type of communication.
· Accept—and expect—your loved one to communicate with single words or gestures.
· Be aware of nonverbal communication, like closing their lips tightly to refuse food or pulling on their clothes indicating anxiety or pain.
In the last stage of Alzheimer’s, plaques and tangles (the hardened areas of brain tissue that are the physical traces of the disease process) are widespread throughout the brain. The individual may be bedridden much or all of the time. The ability to do complex tasks has faded and they’re almost completely dependent on others for their care.
It’s important to alleviate your loved one’s fears and stress.
· Eliminate or hide locks with tape, especially in the bathroom, so they can’t lock themselves in. An alternative is to remove the doors and use curtains for privacy.
· Be cognizant of their needs during bath time. It may be difficult because they may have developed a fear of water. If possible, get in the shower with them. Another way to alleviate their fears is to use a bath or shower chair. You also can use flexible hand-held shower nozzles to bathe them. This eliminates having them get into the tub, which can cause agitation.
· Encourage as much independence as possible with any of their remaining abilities.
In this stage, Alzheimer’s sufferers tend to withdraw from social interaction and may have lost a sense of self. They also can have increased sleep time and incontinence. As a caregiver, you need to let go of expectations.
· Allow more time for eating.
· Look at holidays as a new adventure. Start new traditions that incorporate their remaining skills in family activities. This is particularly helpful if they can no longer participate in traditional family activities.
· Let your family and friends know that it’s important for you to talk about your loved one. They may be hesitant to mention them for fear of upsetting you. Share stories with them and be imaginative with your grief.
· Set realistic expectations. Realize that holidays can be difficult and plan accordingly. Set limits about what you can and cannot do. It’s important to take care of yourself during this stage. Ask yourself if you’re doing what you want to do or what you think others want you to do. Conserve your energy to keep your balance so you can enjoy your friends and family members.
The person with Alzheimer’s also lacks the abilities necessary to have sound judgment or reasoning so it’s important to do your best to carry out their wishes.
· Have documents concerning your loved one’s end-of-life wishes readily available.
· Keep emergency contact information in your vehicle, pocket or purse and in a prominent place in your home in case of an emergency.
· Have your cell phone with you at all times.
As a caregiver, you’ll also need to make changes in the individual’s sexual behavior.
· Try to anticipate their bodily needs. If your loved one starts to undress or pull at their clothes, they may have to go to the bathroom or they’re too hot or in pain.
· Don’t overreact, get angry or make fun of their behavior if they’re engaging in unusual behavior with their genitals. Assess the situation. Maybe they have to go to the bathroom or their clothes may be too tight. They might want to go to bed but can’t verbalize it. Gently redirect their activity. Seek outside help if sexual issues continue to be a problem.
· Try to distract them with another activity, maybe in another room, if they get agitated when you try to stop the behavior.
· Have mattress protectors, flannel-covered rubber pads and other materials available when incontinence occurs.
Wandering and agitation are common in the severe stage. Your loved one can have difficulty getting in and out of chairs and may become bedridden. Be aware that a lack of mobility can result in skin breakdown and bed sores.
So be creative.
· Put the mattress and springs on the floor to protect them from being injured if falling out of bed becomes a problem. This also can reduce roaming.
· Seat your loved one near a window so they can look at the scenery.
· Find ways to bring them outside even it means pushing their bed or wheelchair out on a patio.
· Keep familiar robes, warm socks and blankets on hand if they develop poor circulation.
· Learn proper positioning to prevent skin breakdown if they’re immobile. Consult with hospice workers for more ways to move them.
Finally, while the individual loses their sense of reasoning, judgment and social skills, their senses remain somewhat intact. As a caregiver, your challenge is to be able to “read” their body language. Your voice or touch can be reassuring and lets them know you’re there.
Communicate with them through the senses.
· Touch them in a way they’ll accept, like brushing their hair or gently stroking their arm.
· Massage their hands and feet with lotion. Avoid scented products.
· Encourage friends and family members to visit.
· Give your loved one a stuffed animal, soft pillows or afghans to stimulate the sense of touch.
· Comfort them with music or pleasant sounds. While they may not be able to speak, they may be comforted by hearing sounds.
· Give them liquids, milkshakes or anything compatible with their diet and swallowing capabilities for them to enjoy. Use an oral syringe when they can no longer suck on a straw or swallow.
· Make their living space aesthetically pleasing with the use of colors, pictures and sounds.
· Accommodate your loved one’s spiritual needs.
Ethicist Gilbert Meilaender wrote recently in a paper presented to his colleagues on the President’s Council on Bioethics, “One might take the living body, not the immaterial will or the power of choice, as the locus of personal presence. We are not minds alone or bodies alone, but embodied souls and ensouled bodies. To understand this truth is to understand the dignity of those whose minds are fading, but whose presence as persons can never be in doubt.” —The Human Face of Alzheimer’s
That’s all for today. Thanks for listening. I hope this information was helpful.
Join me at 1 pm Saturday when I’ll discuss understanding the Alzheimer’s risks.