One of the most-dreaded conditions of old age is any form of dementia. There are many. Not all dementia is Alzheimer’s.
However dementia comes, we all dread it. I would far rather lose my physical abilities than to lose my cognitive abilities. The dread of just being a living body with no sentient mind is a spectre that we all dread.
So, what does the word dementia really mean? Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior.
Senility is a form of dementia. So is Alzheimer’s. There are many others, and since I’m not a medical expert I’m going to give you a website that is far more authoritative than I am for your further study:
http://www.webmd.com/alzheimers/guide/alzheimers-dementia
What I would like to share with you today is some of the practical things I’ve learned as an observer, student, and therapist about how you, the relative, friend, or caregiver, can help the person who is experiencing dementia.
First, you MUST not take your loved one’s dementia as a personal insult to you. The victim of dementia has no control over what he remembers, who he knows, how he treats the people in his life. It is helpful for you to think of the person as someone who is being slowly, methodically robbed of himself, and who is no longer the person you have known and loved for years. It’s not his fault; it’s not your fault.
If you take her dementia personally, you are setting yourself up for years of ongoing hurt. She would hate knowing what you are experiencing. She is not being mean or hateful or malicious. She can’t help it. Her brain is disappearing, and she can’t make it stop. It doesn’t matter how deeply she may have loved you. Dementia is a horrible thing. It is the long goodbye, because you begin to lose the person long before she dies.
It would be helpful, perhaps, for you to find a support group of others who are caregivers for dementia patients. You will find understanding and sympathy, as well as practical things you can do to relieve the pain of your loss.
Second, learn not to try to convince the person with dementia of things he simply cannot understand. It is futile to argue, and will only serve to upset him more than he already is.
When I was doing a year of practicum in a nursing home, I was included in a training for working with dementia patients. We watched a video showing the same scenario handled in two different way. In the first, a woman’s elderly mother was convinced that she had to go look for her husband. He had died many years earlier. The daughter argued with her, telling her over and over that Daddy was dead and it was freezing outside and she would not allow her to leave the house. The mother became agitated to the point of striking out physically, convinced that her daughter was holding her prisoner against her will.
The second scenario started the same way. When the mother said she was going out to look for her husband, the daughter calmly said, “Ok, Mom, I’ll go with you. Just let me finish getting supper under way, and we’ll get our coats on and go out together.” The mother agreed, although she was impatient. The daughter then asked for her help with some task that would hurry the completion of the meal, and Mom obliged. When they were finished, the daughter said, “Mom, are you ready to go?” Mom replied, “Are we going somewhere?”
Of course, in real life it doesn’t always work out so smoothly, but the prinicple applies. Don’t argue. Don’t insist that Mom be told the bare, unvarnished truth. She can’t take it in. Calm her by seeming to go along, but do your best to redirect her with something that will take her mind off her fixation, and the chances are pretty good that she’ll forget about it quickly. If you treat her as you would a recalcitrant child, you will do more harm than good.
Third, learn to bear with the repetition of stories you’ve already heard a million times; with questions you’ve already answered a million times. He doesn’t know, and if you tell him he won’t remember two minutes later. Let him talk. If you can, ask him a question about something else that will get his mind off the story he’s just told for the tenth time in ten minutes. He’s not being deliberately difficult. No, he’s not.
Fourth, don’t allow yourself to become the burden-bearer for the whole family. Insist that others step up and become involved in taking Mom for a day so you can get a bath and maybe get your hair cut. If you have to arrange for day care, insist that other family members contribute financially. She’s their mother too, but if you quietly assume the whole burden, they will let you. We teach people how to treat us, says Dr. Phil. It’s the truth.
Finally, don’t be a martyred saint by insisting that you will NEVER put your loved one in a facility. Sometimes it’s the only thing that makes sense. By the time you have to make that decision, your loved one is usually beyond knowing where he is. He won’t be hurt that you’re leaving him in an unfamiliar place, because EVERY place is unfamiliar to him now.
In this same context, don’t be caught in the trap of promising your loved one that you will never put him in a home. That’s a promise that dooms you to, perhaps, years of uncompromising misery. Promise him that you will always do what is best for him. Period.
Dementia is one of the unkindest cuts of aging. The truth, however, is that it’s harder on the family than it is on the patient.
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