In the past months, I have been navigating the rough and turbulent waters of dementia, trying to cope with the changes I observe in my mother’s behavior.
I was oblivious at first – or perhaps I overlooked the signs. I hoped the dementia problem would simply go away or sort itself out. Neither happened, and I continue to battle, question, blame, and at long last, accept what I cannot change.
When I was younger, a friend mentioned their fear of dementia and Alzheimer’s because it ran in her family. I hardly gave it a thought at the time because I knew of no family member who had succumbed to either. I felt relieved and unburdened.
As a volunteer Emergency Medical Technician, I dealt with numerous patients and found it easy to talk with them and give comfort. But it wasn’t until my mother was stricken with dementia that I discovered the number of afflicted and their many facets of dementia.
The hurts and hurdles one must suffer through or go over are challenging both for the person experiencing the problem and their caregiver. It can begin with forgetting, misplacing, and confusing people, issues, and things, and continues forward with accusing others of stealing.
To the patient, time appears mixed up. They forget when you visited last or who visited and gave them the box of chocolates.
One day, you can become the bad person who hurt them, even if you didn’t. They can watch television and believe something happened to them. Relatives who died may be living in their world. You may be blamed for things you didn’t say or do.
Names and simple information told a minute ago is forgotten a minute later. If a woman is newly pregnant, the person may expect the baby to arrive the next day. Things mentioned one day are not recalled the next day, and it leads to arguments.
The fights begin when one attempts to correct the dementia patient’s mistake. I made these errors at first, but now I don’t argue or make attempts at any explanation. Both of us experienced the discomfort, pain, and humbling experience of futile arguments that went nowhere.
Now I gently accept my mother’s world view and we travel the road together. I learned to take her lead and accept her reality. I was not successful overnight, and I still work on acceptance.
A dementia patient will not remember an experience just because you give reminders or repeat the episode with actions and words. I tried that. It is difficult to jog their memory or push them to deduce something with an array of facts.
Sometimes they are aware of mixing things up, especially in the beginning stages. They hate it more than family members do, but they can’t make it stop.
They may introduce you to people you met before. Say hello and move on. It is quick and simple, and everyone is safe and happy. Keep conversations positive and joyful. Tell stories that are simple to follow and drop any subject that creates fear or annoyance to the patient.
Caregivers coping with a person who has dementia must try to understand and be patient. They may refuse to choose lunch from a menu because they have forgotten how to do it and are embarrassed.
One woman I knew always chose to have the lunch the previous person ordered. She would say, “I’ll have what she ordered. It sounds good.”
Another woman always stated she wasn’t hungry, so that she didn’t have to order. I always suggest something to my mother and she immediately accepts and feels proud that she ordered dinner.
They repeat news and stories because they don’t recall having said it before. It is easier to listen again or attempt to change a subject to something new.
People who have dementia like to keep precious items with them at all times. It is their survival kit, and without it they feel helpless.
They know things changed, and they attempt to carry their personal world with them. It promotes security for them. They may even take items from your house or a store on a survival instinct.
Allow them to keep items close and overlook the drama or inconvenience. This makes them relax. They are not mean when they accuse you of stealing. It comes from their insecurity of being fragile and helpless.
They don’t understand how to deal with any loss of their items. Instead, the patient lives in a wild world and doesn’t know how to get the items they need.
We work at home, have a job or babysit the grandchildren. Now we add the responsibility of being caregiver to an aged parent, spouse, or friend.
But we often get tired and need a break – physically, emotionally, and mentally. We are not robots and our feelings get hurt, especially when we aren’t recognized anymore by loved ones with dementia.
We appreciate who they were as an individual and all the wonderful things they accomplished. But their identity dissipates slowly, and it can be torturing if we let it. We have memories from long ago, to remind us.
At times, there is a spark of the person our loved one once was, and we must grasp that moment of knowledge and appreciate it. For some, the body slips away first, but for others, it is the mind. Don’t beat yourself up when you fail to understand. Just do your best.
We don’t have many choices with dementia, but we can control our attitude. We can make many short visits or phone calls and express our love to the people we care about. The alternative is to be anxious and angry about what could or should have been.
Guilt can devour us when we realize time has passed and is now limited. Happy memories and precious current moments of pleasure spent with a loved one are not over. It would be a waste if we don’t attempt to connect in new ways with the changed person beside us whom we continue to love.
We can’t know nor control our time on earth, but we can control to whom and when we send our love. The past is gone, so don’t carry burdens of guilt. Live your life in the present.
What impact has dementia had on your life? Do you know someone who suffers from this illness? How have they changed as the illness developed? What can you tell others who deal with dementia in their family? Please share your thoughts in the box below.