Leah Abramowitz
The very words put fear into the hearts of everyone who hears them: dementia, Alzheimer's disease, cognitive decline, organic mental illness. We live in a generation when the number of people affected by dementia has ballooned beyond imagination. Everyone knows someone who suffers from a progressive deterioration of the mind: memory decline, inability to learn, impaired judgment, distorted orientation to time and place or behavior aberrations.
More money is presently being put into dementia research than into any other disease except cancer, yet at present there is no cure, only some medication that in the early stages helps to arrest the progress of diseases such as Parkinson's disease, Alzheimer's, Pick's Disease, Jacob Croetzer Disease, and the effects of stroke. In the early stages, the patient is usually aware that something is amiss. In later stages, thankfully, he is released from self-awareness-- but then it is the family members who become the real victims.
Spouses, adult children and even grandchildren are affected, each in his/her own way. The sudden role reversal, the need to do the family wash, cook or look after the household, for men in their advanced stage in life, is sometimes almost as devastating as losing their life partner.For the wives who are themselves usually aging, suddenly being in charge of finances, house repairs and car management can be as difficult as dealing with aggression, confusion, withdrawal, hallucinations or paranoia - all common symptoms in dementia. Moreover, spouses are less likely to admit to their problems, know less about their government rights, and are loath to take help.
Adult children, on the other hand, have less time and energy to devote to their ailing parents. They are torn between their conflicting responsibilities, resentful and angry at the change in their parent, and perhaps also fearful of what might happen to them when they get to that stage of life. Amid the care of demented fathers or mothers, sibling rivalries and quarrels can break out which often cause havoc and long-term splits in family unity.
But there have been some hopeful breakthroughs in the care of dementia patients. According to recent literature, there are a growing number of services for dementia patients and their families.A recent article in the New York Times stated that environmental manipulation is sometimes as beneficial to these elderly as medication.Participating in a day care center for Alzheimer's patients or being stimulated by special computer programs has been shown to improve the quality of life of participants and provide essential respite for family caregivers. Professional counseling for family members is another service that has proven essential.
Support groups for either spouses or adult children have also proven to be helpful. It's not only that "misery loves company," but that when people in this situation meet others in the same boat they find relief in many ways: the ability to open up and share their problems and feelings with people who will understand them; the chance to learn about methods of coping that have helped others; and an opportunity to offer support to one another.
At a recent support group for spouses, one woman complained that it was very difficult to get her husband to bathe. She received three or four suggestions from other participants for how to overcome his reluctance. When one member expressed her concern that she had to leave her ill spouse because she was going into the hospital for a procedure, another woman whom she had befriended offered to have him stay with her and be looked after along with her own husband who was also suffering from dementia.
Family members have shared with us their observations about some of the positive changes that dementia has brought about in their relationship."Once I got over the false expectations that I can talk to him logically, I learned to flow with the tide.It's not important, I now realize, to make him realistic.It's more important to make him feel accepted and loved."
Another man quipped, "The advantage of Alzheimer's Disease is that you can easily divert her attention. She may be fixated on getting dinner ready for the children (who've been out of the house for 25 years), but I can show her a photo album and she'll forget all about it." Also, pain, anger, distress and other negative emotions are readily forgotten, to the extent that a physiotherapist told me, "Getting a demented patient after hip replacement to start doing physiotherapy is easier than with others because they don't remember that it hurts."
No one chooses to become a cognitively impaired patient, just as nobody chooses any of life's difficulties. But with understanding, fortitude, faith and a little creativity, this state can also be dealt with positively by learning from the experience of others and maintaining the close family ties that provide the motivation to make it all work.
Leah Abramowitz, MSW, is co-chair of Nefesh Israel, coordinator of the Institute for Studies in Aging of Melabev at Shaare Zedek, and co-founder of Melabev.