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No doubt about it: when someone you love is diagnosed with Alzheimer’s disease or some other cause of dementia, it’s a crushing blow.
Not only must you face the fact that your loved one has a degenerative and ultimately fatal condition, you also have to deal with a plethora of increasingly strange behaviors. Mother tells the same story 50 times a day and wanders the house all night, or dad compulsively loads and then unloads the dishwasher.
Or your devoted spouse of 30 years is suddenly convinced you’re cheating on him with the next-door neighbor.
If you feel confused, worried, frustrated, or even angry about the bewildering behaviors exhibited by your family member, congratulations. But now it’s time to come to terms with a hard truth: the real source of your negative reaction is not necessarily the patient. It’s you.
While every case of Alzheimer’s disease and dementia is different, Rubinstein says there are practical ways for caregivers to successfully deal with the behavioral changes that result from a patient’s memory loss.
Your loved one with Alzheimer’s may constantly check to see if the door is locked, empty or rearrange wallets or purses, pack and repack clothing, or things like that. These things are all manifestations of anxiety.
The patient knows he has something important to remember but has forgotten what it was and this causes his repetitive behaviors.
First, ignore the behavior and remember that although it seems strange to you, it’s probably not doing any real harm. Giving cease-and-desist advice to your loved one will only spark stress and arguments. Plus, if a behavior isn’t reinforced, it may stop.
At their cores, Alzheimer’s and dementia are diseases of forgetting. As these illnesses progress, patients live increasingly “in the moment,” and they lose the ability to think and process information. For someone in this situation, repetition — whether it’s asking a question, stating a fact, or telling a story — is comforting.
It will take patience on your part, but it’s usually best for everyone if you answer the same question or listen to the same story again and again. Handling repetitiveness in this manner doesn’t hurt you, it helps your loved one, and it can prevent much more serious episodes of agitation, confusion, or aggression. Also, when dealing with an Alzheimer’s or dementia patient, it’s always best to keep your conversation as simple and direct as possible in order to avoid miscommunications that might spark confusion and repetitive questions.
Also, an Alzheimer’s or dementia patient who once paid scrupulous attention to her grooming and beauty rituals may gradually begin to let themselves go.
In the beginning, you may not notice small changes, but it’s impossible to ignore when someone to whom you’re close wears the same clothes for days at a time.
Some patients actually believe that they have bathed recently, while others may have forgotten the steps it takes to clean oneself, think that there’s no need to bathe if they haven’t perspired, be afraid of water or showers, or not want to ruin a hairdo.
No matter the reason, refusal to bathe is a major issue for those who live in close proximity with the patient.
Know that forcing someone to bathe when they don’t want to isn’t an easy task and acknowledging that you aren’t being unreasonable in insisting that this happen. Your own physical and emotional well-being are in play here, too.
If appropriate, try to reason with your loved one by telling her that you’ll have visitors or must go to a doctor’s appointment and that you know she’ll want to look her best. Also, you can make showering easier by pre-measuring shampoo, setting water and room temperatures to the patient’s desired level or playing music.
Above all, keep in mind that a person with memory problems needs to feel safe and secure, so do everything possible to prevent her from feeling threatened or humiliated in this intimate setting.
Nataly Rubinstein is a certified geriatric care manager specializing in Alzheimer’s disease and other dementias. For 16 years, she was the primary caregiver for her mother, who was diagnosed with dementia.