How could my paternal grandmother take off from an isolated nursing home perched on a hill in the countryside and begin walking to an unknown destination that lingered only in her memory? Why didn’t she ask someone to take her? Why didn’t she even say something to someone? Secured areas in retirement facilities and an understanding of Alzheimer’s did not exist decades ago. I remember the questions I had and the fear as well. Years later when my grandmother was confined in bed at the home I did not want to see her. I knew she would not know me and in all honesty I did not want to see her either. Years later my uncle, my mother’s brother-in-law, came to dinner with my aunt and another aunt and uncle. He also had been diagnosed with Alzheimer’s and his lively personality was muffled by the confusion of the neural connections in his brain. However unexpectedly from a moment of a clear memory he joked about the possibility of salt in the sugar bowl which my mother had accidentally mixed up for a meal years earlier. His words brought tears to my aunt’s eyes and left a deep impression on my heart. I hardly knew anything about the disease at that time, yet I know now how those moments of connectedness comfort grieving hearts, the hearts of those who watch helplessly as their loved one slowly slips away from them.
Relatives on both sides of me have grappled and are grappling with Alzheimer’s; the closest one being my mother who passed away the spring of 2015. Possibly my sister also has it but it’s hard to determine since she’s been mentally handicapped since birth and suffers with a personality disorder. Presently I have a part-time job that has allowed me to receive more training about dementia and also interact with those who have it. I am finding out that oftentimes people with dementia and their families are ostracized and are found on the fringes of society. Perhaps some of this is due to ignorance and misunderstanding of the disease.
So here are a few things I have learned — in a summary form.
1. Dementia is a group of SYMPTOMS which includes forgetfulness. Alzheimer’s (AD) is a DISEASE that is the main cause of dementia. And there is no cure. Early on-set Alzheimer’s seems to be more hereditary (that is occurring before 65 years old) than the disease that strikes older people.
2. Signs of AD— Simply stated: it is NOT forgetting where one’s car keys are, it’s forgetting what they are used for or placing them in an illogical place. Think — bizarre, strange, or unusual. My mother would perhaps forget a name or call me by my sister’s name, and that’s okay. Many of us mix up names. However when she would question if I was her daughter or forget I wasn’t married and had no children, that was more alarming. There are also other telltale signs: the inability to make change when paying for something and or to draw the face of a clock. Handling numbers, banking, scheduling, etc. may become more difficult. Be aware that someone else may be helping them out more in these areas than before (especially a spouse). We realized later that our sister who sometimes lived with our mother would remind her of times, days, appointments and even the right road to take.
3. Stages — Material about Alzheimer’s will explain the stages and some are in great detail. All kinds of resources are available online. However the disease will affect different parts of the brain in each person, so not every stage would look exactly the same for each person. My mother was a lively talker until she had a massive stroke. However, the “conversation” rarely made sense even though to her it seemed to. Once and a while she would say a sentence or phrase that was understood. She also used Pennsylvania Dutch words which was her first language. She eventually let others feed her when she stopped doing it herself, but sometimes she would still talk away in between mouthfuls. However, other AD folk may not talk at all or only a few words, but continue to feed themselves or respond to music or a movie.
4. Triggers— Strong emotions of anger, fear, sadness even laughter will erupt and sometimes it’s hard to know what the triggers are. Many times the negative ones are linked to needs not being met. But how does one figure that out? One tries to address the need whether it’s a physical need or an emotional or social need. During the earlier stages the AD person often is frustrated and scared about the cognitive abilities they are losing. Looking back I saw many struggles my mother was having early in the disease and we did offer help and suggestions. However, she was a stubborn and proud woman and a survivor in many ways. Of course she didn’t want our help and got quite angry about it at times. She finally did allow me to help her balance her checkbook– a monthly task she did flawlessly for decades. I knew so little of AD then but now I might have done more… but then again maybe she would not have allowed me.
5. Help Needed— Someone cannot handle the needs of an AD loved one alone. Even during the early stages one needs family and close friends to be aware of the concern and to begin to help. Sadly many go into denial of a problem or they hide it from the very ones who may help and care. Tests can be made to verify if something cognitively or physically is wrong. Dementia symptoms do not mean one has Alzheimer’s; a curable cause could be the problem. More and more training, support groups and resources are available for those facing Alzheimer’s. Someone should never face it alone nor be ostracized in any way.
Churches and those who call themselves followers of Jesus should be aware of the growing number of those whose lives have been touched with Alzheimer’s. Not only do the those who come down with the disease need love, care and encouragement but also the care-takers and their loved ones do. These lives will never be the same. They need community and empathy, not just sympathy or pity or prayers.
Those facing AD in the eyes and bodies of their loved ones need to cherish the moments of connection– the shared words, laughter, jokes, music, photos, and meals. And then they should be allowed to share those moments with others who would listen and not fear or judge… and cry and grieve … together.