Alzheimer’s scares people.
You hear that dreaded diagnosis and you imagine yelling, screaming, chaos, and then silence.
Whether the diagnosis is for you or a loved one, it’s now more dreaded than cancer.
Many people are afraid to talk with someone who has Alzheimer’s.
Notice I didn’t write, “talk to.” So many times, we talk to or talk at people–not with them.
But there are a lot of misconceptions of Alzheimer’s:
- You’ll no longer be yourself
- You’ll basically go mad
- You’ll forget everything and everyone
- It’ll happen rather quickly–months, maybe a couple of years
- People will avoid you and then leave you for good
- You’ll be uncontrollable, you’ll yell, bite, or kick
- You’ll have to be put in a care facility and no one will visit you
- You’ll die alone after years of not knowing who you are or who anyone else is
First, know that you can have many good years even after the diagnosis of Alzheimer’s. There are several medications, that work well during the early stage of Alzheimer’s and can delay the “forgetting.” You can live at home with your spouse or loved one and be safe–for a very long time. You are not a burden. Your loved one/caregiver will value this time with you. You have time to talk, spend meaningful time together, take some trips, make a living will and name someone a health surrogate–and know that your wishes will be honored.
You can even continue to live at home or in an assisted care facility even during mid-stage Alzheimer’s. You can hire home health aids who have worked with other Alzheimer’s patients. Your loved one has many resources to help–adult day care, respite care, community care, and many good books, forums, and websites to help educate you and them to make the most of your time together. Even when you begin forgetting, there are safety precautions that can allow you to stay in your own environment for quite some time. Also know that there are many good memory care units in care facilities across the country that know how to take care of you and protect you. You and your loved ones need to plan for this possibility so you have as many choices as possible.
Know that not all Alzheimer’s patients become violent. Not all lose their ability to speak. Some become quite sweet and funny. Know that even as you forget, you don’t forget all at once–it comes and goes. This isn’t straight downhill, there are many twists, turns, and pleasant stops along the way.
There are meds that help deal with combativeness, and there are behavior techniques that your loved one can learn that help and allow you to remain together.
Know that you’ll still be yourself. Many aspects of your personality will remain. “You,” your dry wit, or your quirky style of dressing, or your dislike of mushrooms will most likely remain the same. Studies have shown that you will still prefer the music and art you’ve always enjoyed. You’ll still be you, in many ways.
HOW TO TALK TO SOMEONE WHO HAS MID TO LATE-STAGE ALZHEIMER’S:
- Come to a person with Alzheimer’s peacefully–try not to startle them. Prepare your heart and spirit to relax and really be present.
- Realize that elders don’t have as good peripheral vision, so coming at them from the side can be the equivalent of sneaking up on them.
- Talking isn’t the only way to communicate. One of the last things my mother did was wink.
- Always introduce yourself. Say your name. If your “position,” of nurse, daughter, son seems to confuse them, then just say your name. They can begin to forget what nouns stand for, (what’s a nurse? a daughter? They might not know what that means)
- People watch, gossip, do anything that interest them. Even after my mother couldn’t remember who I was, she still liked people watching. We’d sit side-by-side and comment on someone’s strange hair or how big their butt was–I was up for anything that could bring a smile to her face.
- Smile, but don’t look freakish. People tend to over-exaggerate with babies and elders–and no wonder they run off shrieking and crying!
- Many elders have great hearing, so don’t assume they’re deaf and start yelling–this could scare them.
- If they get startled, they might yell, shake, pull back–don’t take this offensively–realize you scared them and back down. You may have to give them several minutes to calm down. You may want to try another day.
- If you have a yeller, then don’t let it bother you. Just realize your mother’s a yeller, or a crier, or a pounder. By fighting it, you only give it fuel.
- Observe them and see what they like. Are they tactile? Do they like to run their fingers over cloth or texture? Or are they ultra sensitive and can’t stand to have anything touch their skin. The brain does funny things. Some people become fascinated with a taste or touch while other recoil with too much stimulus. Watch them and see what they do. Is there a way you can capitalize on that? This can give you clues. Would they like to hold hands or be given a doll? Is this why they’re always undressing? Do clothes bother their skin?
- Use clear, positive language and short sentences.
- Understand that their brain’s going kaflooey. Grieve it, yes, but don’t take it personal.
- Don’t get caught in the million question game–where are we, will you take me home, what’s your name, where’s my husband, where am I…this will never end. Change the subject, or change it to, “I bet you miss your husband, George. What was he like?”
- Realize they aren’t as interested in the “coming and going” of this world as you are. TV may fail to keep their attention. Music can be a good tool, but don’t beat them over the head with 40s tunes if they don’t want them.
- Don’t treat your elder like the foreign kid in the room who you can talk about in front of them because they won’t know what you’re saying. They do. Much comprehension still remains even after the ability to communicate verbally begins to wane.
- Consider reading to your loved one or telling a story. Sometimes, they just like the sound of your voice.
- Don’t try to make them remember–you, or their husband. It’s okay to forget. You can remember for them.
- Allow yourself to start seeing their essence–wrinkles, veins, white hair, they way they cross their legs or push the hair out of their eyes as a familiar gesture to it and the softening of muscles can have an ethereal beauty. Appreciate the holy.
- Elders don’t need as much stimulus as we do. They can be perfectly content looking out a window at a cardinal. In other words, they might not be as bored as you think. Really take the time to watch and observe them before you intervene and try to get them all wound up when they might already be happy just sitting or resting.
- Avoid the word, “don’t,” such as “don’t spill your milk.” The brain is slower and it’ll drop the first word and follow the instruction, “spill your milk.”
- Try to give them their personal space. People tend to get right in the face or body space of children and elders as if they don’t mind just because they need physical care. They mind. Treat them as you would a dear friend and back off. If you do need to come up close on them, then let them know, keep talking as you do it, keep eye contact (such as changing a diaper) and give them the space, dignity, and respect they deserve.
- Don’t push your kids or grandkids to “see” Grand-ma-ma. Ask them, invite them, but then if they refuse because they’re scared or uncomfortable, then go a few times yourself and come back with a smile and good report. Try not get hung up on the “you shoulds.” This is hard, and sometimes you just have to give someone a break.
- Look past the rigidness, the masked face/lack of expression, continue to talk to the person you’ve always known that is nestled deep inside
- Be content with one or two moments of connection. Sometimes, they look at you and you know that you’ve reached something in them. Savor that moment and let all the other moments go. Be grateful for these times, even if they’re once a week, or once a month, be grateful.
- Go ahead and have that heart-to-heart talk, ask forgiveness, give forgiveness, and say goodbye. None of us have any guarantees, and it’s best to be at peace now so that if anything happens, you had your moment.
Talking with and enjoying the company of a loved one with Alzheimer’s isn’t as scary or as hard as you think. Start small. Be okay with your mistakes, but keep trying. Enjoy and savor every sweet, crazy, funny, silly, tender moment you have.
Family Advisor at www.Caring.com