When Frank’s mom was diagnosed with Alzheimer’s disease, I think each one of the family members had the same reaction at first – grief. However, over time we dealt with her illness in different ways. Frank’s sister and brother quickly moved into the denial stage and remained there until their mother’s death. Frank himself stayed in the grief phase for quite a while, but then moved on to acceptance. “Acceptance” didn’t mean, of course, that he gave up all hope – he still longed to see moments of lucidity in his mother.
If I had any advice to others who face taking care of a loved one with Alzheimer’s, it would be to first seek the support of others who have gone through or are going through this same devastation. The Alzheimer’s Association is a wonderful place to start – or visit your doctor or geriatric hospital. Listen to as many people as you can and form your approach from there.
Frank and I deliberately chose to use humor as much as possible. While it might not work for everyone, for us it helped relieve the overwhelming sense of helplessness we often felt. My goal was to keep his mother happy and not agitated, and I saw no harm in agreeing to some of her most outlandish comments or suggestions, just to keep her calm (as long as she was physically safe, of course). Agreeing with her when she was upset seemed to help ease her agitation. Why try to win an argument that will never have a winner? A case in point – Frank’s mom loved to drink wine, but since she was diabetic and her Alzheimer’s had progressed to the point that she couldn’t control her sugar levels, wine was out of the question. When she asked for wine, I didn’t argue. Instead, since she could no longer read, I served her sparkling apple cider or something similar. As long as it came out of a wine-shaped bottle, she was happy.
One more piece of advice: the family must make sure that the primary caregiver has plenty of support and the opportunity to get away from the situation as often as possible. Typically an elderly spouse has the role of primary caregiver; often, he or she – acting as a parent – will protect the rest of the family from knowing what a truly difficult challenge caregiving is. I think Frank’s dad sometimes felt as if he were a prisoner in his own home – the doors had to be locked at all times (and preferably with locks out of the patient’s reach). Because most Alzheimer’s patients don’t have a true concept of time, caregivers often find it difficult to rest at night. We think Frank’s dad’s taking care of his wife for two years at home contributed to his death as well – he simply wore himself out physically and emotionally. -Norma
Wisdom for the Caregiver (from Yvonne Jonker)
- Exercise lots of patience.
- Establish routines. Alzheimer’s patients can become very confused and disoriented, and rely heavily on a routine for everything they do. For example, one caregiver takes his patients for an ice cream cone at approximately the same time every day.
- Use distraction tactics when disciplining. Avoid scolding or reprimanding For example, if the patient is misusing a piece of kitchen equipment or a tool, tell him he could hurt himself by holding it that way, then gently show him the right way to operate it.
- Use compassion as memory begins to fade.
- Humor the patient by diplomatically conceding to his or her own wishes. One Alzheimer’s patient insisted that she to go Canada. Instead of chiding her by explaining why this was impossible, her daughter asked, “What do you remember about Canada? What would you like to see there?” This enabled her mom to “travel” there in her mind.
- Deal with stubbornness diplomatically. Be creative when dealing with hygiene issues. For example, if the patient refuses to take a shower, make a game of it by taking one together or by scrubbing him or her down while he or she is seated on the toilet seat lid down.
- Reassure frequently. Give the patient as little to worry about as possible. His or her life is fraught with disease. Nothing is the same as it used to be. He or she needs to be assured that all is well.
- Be constantly attentive when walking or doing chores/projects. Loss of balance and concentration are noticeable symptoms.
- Entertain your patient with simple activities, preferably things he or she enjoyed doing prior to the onset of the disease. In the early stages of the disease, perusing photograph albums, cooking, woodworking, walking or gardening are all possibilities. In an article for Guideposts (June 1995), Cynthia Hall tells how her father, an Alzheimer’s sufferer, became productively happy once again after she encouraged him to paint wooden tulips to place on trays for shut-ins receiving .Meals-on-Wheels.
- Use humor to lighten the mood.
- Treat the patient in a way that respects his or her dignity. Validate feelings and actions. Let the patient know what you are going to do before you do it. For example, “I am going to help you get dressed. Then we can go for a walk.”
- Realize that many patients respond only on the spiritual level. Touch, a shared passage of Scripture, and prayer are reassuring and comforting. The Holy Spirit can make inroads in the mind when it seems virtually impossible.
The above advice is from The Compassionate Congregation, pages 44-47.