©Di Patterson, MSG, CPG
Dealing with dementia in your home can be the single most frustrating experience of your adult life. Depending on your view of aging, it can be bearable or intolerable. Whichever, until you can change the situation, here are some helpful, ethical tips on caring for your loved one, and importantly: yourself.
Completely stop reminding your loved one of anything. You must find a way that satisfies your ethical need to transfer information without robbing your demented loved one of his dignity. Suggestion: Frame your comment to tell him what you want. If you frame your request as a question, both of you will become frustrated, impatient and resentful. Makes for a lousy relationship, and since this is an earlier vs. later stage of loss, make these the “good old days”. This plays off the famous Alzheimer’s Association’s phrase: “Dementia always wins.” Their advice: “Never fight with it, bargain with it, or argue with it…dementia ALWAYS wins.” You will truly win when you communicate in this new way.
Phrase your comments in the affirmative. Affirmation is actually a form of love, the key to happy aging, and a communication technique used by caring people throughout their lifespan. Example: When looking at photographs of a trip you both took: “We saw this place together in 1986 and loved it!” You are remembering it for him; if he has a memory to add, he will. Give him your joy and enthusiasm, sharing the experience through your eyes for the both of you. Chances are, he will respond with his own good feelings, whether he can add to the memory or not. Good news/bad news: The older the memory, the better chance he will remember it; the newer the memory (like yesterday’s dinner or last Thanksgiving) probably didn’t stick.
Tell him what you want him to do. He will do it if he can because he loves you; or because he realizes you are part of his present environment, so you must be important. Suggestion: When you stay consistently patient, and repeat your request like you are saying it for the first time, he will probably try to do what you ask. Whether he remembers that he loves you or that you love him is less the point. If you are a kind human in his new world, that usually is enough for your demented loved one.
When he is sure he is right, let him be right; unless there is danger to life and limb. When I was my wonderful mother-in-law’s 24/7 caregiver, I learned the key to speaking successfully to dementia. Early on, I had to take her car keys away, but refused to take her dignity, too. So I came up with the axiom: “Speak Mom. Do Right.” The concept: “Listen and affirm, then DO what’s ethical.” Using a form of emotive therapy, which affirms the feelings of the patient though not necessarily appealing to the cognitive self, communicate your agreement with what your loved one is really trying to tell you. By using emotive therapy, you, the caregiver, can connect in a positive and enthusiastic way to your loved one’s feelings and new communication style: his less-than cognitive speech.
Example: Mom, who held a PhD and was a practicing psychologist for many years, in time became fascinated with nature as she observed the great outdoors in our backyard. Dogs, cats and birds filled her days with joy. The trees swayed in the wind until the yearly trimming, when she mourned that loss as if a natural disaster had befallen us: she didn’t remember that trees grow back. One day, Mom exclaimed admiringly, “My, how purple the grass is today!” My happy response was: “I just love that shade, don’t you?” She was so pleased! She “knew” I got it, which meant she had communicated it correctly. Her feeling of accomplishment was a moment I will remember a long time!
Celebrate his accomplishments of today, today. Tomorrow will bring its own challenges, so tell him when he does something well. Find ways to help your demented loved one feel good about himself. Suggestion: Waiting to recap the day’s events will become frustrating if you are expecting him to remember his victories of just a few hours ago. He might not remember breakfast, that you worked your hindquarters off this afternoon cleaning his favorite space, or that you served him a yummy dinner. He likely will start the day tomorrow putting on the exact same clothes he took off tonight, unless you toss them in the washer when he falls asleep or at least is tucked into bed. When you can celebrate the moments for the sake of bringing celebration into both your lives, you will ease both of your cares. Don’t forget, he probably knows he is dementing. He is probably trying to “be good” for you!
If he starts “sundownning”, get help immediately! “Sundownning” means getting confused when lighting changes. When the sun sets for the day, demented people with sundowner syndrome get confused and emotional. Sometimes the emotion is sadness or fearfulness, and sometimes it is an anger (which springs from fear) that can turn violent. In either case, call his doctor immediately and clearly communicate your loved one’s sundowner condition. Sedatives, herbal remedies, and acupuncture can help. If violence occurs, call 911 for paramedic assistance. Case history: In my husband’s elder law practice, one of his conservators reported a very, very sad turn of events for his family. His sister had moved into their mother’s house to care for her. In one of his weekly out-of-state calls, he asked to speak to his sister. “She’s taking a nap” was his mother’s reply, and he thought nothing of it, asking his mother to write a note for his sister to call him back, for which their mother still had capacity. Thinking his sister was busy caregiving, he called again the next day to speak to his sister. His mother’s response was the same: “She’s taking a nap”. He called the next-door neighbor, who reported nothing out of the ordinary, but admitting to not seeing his sister for a few days. Sensing a problem, the son flew into town and went straight to the house. Opening the lock with his key, he had to push hard to open the door. To his shock and sorrow, his sister’s body was lying cold, blocking the entrance. Their mother had entered a sundownning phase, and caught her frightened daughter from behind, hitting her on the head with a frying pan, and killing her. This story is severe, but true.
Dementia is a thief. No doubt about it. But it does not have to rob YOU any further; you can use your considerable skills to out-think it, out-maneuver it, and out-pace it. It will take monthly, weekly and daily planning, readjustment of your time, and using muscles in places you probably thought were already well-worked. Caregiving a demented loved one takes amazing love, patience, perseverance, grace and mercy. It will require self-love, too, for caregiving another requires you to rest, recreate, and respect yourself. Turning to family members, friends, social groups and community agencies designed for just this kind of assistance for times just as these are your best support network. When you can embrace this time in your life as honoring your loved one in the faithful ways you can, you will remember your own kindnesses and peace will follow.
“No one WANTS to age, but EVERYBODY wants to age well!” © Di Patterson, MSG, CPG