Alzheimer’s is scary.
It is a disease that totally transforms someone you love… into someone you don’t know. That person can be sweet and kind; we’ll say ‘pleasantly confused’ in the place of a once brilliant CEO. That person can be mean and hateful, spitting out streams of curses when they once were an agreeable, fun-loving piano teacher. What is this disease?

Alzheimer’s (ALLS-high-merz) is a form of dementia – where brain functions and neurotransmitters in the brain slowly deteriorate, leaving their user in a regressed state. This loss causes changes in many ways. One can expect to experience some loss of function and memory, and possibly mild to severe personality changes. From those I’ve met with the beginning stages they tell me how they can’t remember where they put their car keys. They forget grandchildren’s names. They put the milk in the cabinet with the plates and forget about it. Then it progresses. Forgetting names of common objects, being unsure of who friends are – to not knowing how to use utensils, getting lost when out for a walk… forgetting your children.

To imagine yourself or even those you cherish in this predicament can be a fearful, painful place. My heart is with those who must deal with it every day, whether for themselves or for a loved one.
For many families their initial response is to care for this member at home. This may be feasible and reasonable to do at first. But what happens as the deterioration in mental status occurs is that just keeping them safe can be an overwhelming responsibility. Many families report ‘grandma’ wandering off at night, outside of the house. Perhaps the stove has been left on and abandoned, food no longer seems important – or they just forget to eat; personal hygiene and toileting habits neglected and forgotten. Often when one tries to help their family member ‘grandma’ becomes angry and resentful, fending off help, feeling harassed, sometimes to the point of aggression.

When nursing home care is considered families regularly feel guilty, thinking there must be something else they could have, should have done. However this level of care may become ultimately necessary for their safety and this cannot usually be achieved at home. Many cities around the United States now have special homes designed specifically to cater to the Alzheimer’s patient.

A coworker of mine has graciously allowed me to share this story with you. We’ll call her Alice for privacy. Alice relayed to me one night her experience working on the Alzheimer’s floor of a nursing home. She had found, during her first week there that many of the residents were wearing diapers, as they were often having accidents being unable to remember the way to the bathroom. They frequently would not finish their meals, unable to concentrate on eating; or perhaps becoming too frustrated with the utensils or the staff trying to help them that they would walk away. After several months there, Alice was able to recognize the personal habits and mannerisms of each of these special people well enough, that by acting on these observations she had each patient out of diapers and participating in their care as much as possible. One of the residents on occasion thought that Alice was her daughter and would talk to her as such, seeming to be calmed by her presence. When this lady became ill and required a trip to the hospital Alice accompanied her as she was best able to help keep the patient calm. Alice observed that the quick, hurried movements and attitudes of the nursing staff in the ER caused the patient a good deal of distress and agitation. The patient would become angry and fight against the nurses trying to help her. Alice intervened, asking them to allow her to do as much as possible to help and explain what was going on and she found that just by giving the patient a few extra minutes of patience and taking the time to explain, they avoided having to use further physical or chemical intervention to calm the patient. Alice remembered that not too long before she left this facility the family of one of the residents who had passed away sent her a thank you card. A thank you for the notes she’d helped their mother write, a thank you for loving care, and a thank you – just for being there for her when it was too hard or too painful for them to come. She calmly exclaimed to me then, "You have to enter their world, when they can't enter yours."

This is not a disease currently with a cure. There are medications out there that can help slow the progression of the disease, and may help with some of the memory loss. Here are some tips to help those in the caregiver role and some of these may be helpful for those still living alone.
- Establish a routine that you follow every day possible – meal time, potty time, nap time etc.
- Place pictures on the door of rooms that are important – bedroom, bathroom, laundry, kitchen
- Caregiver specific: if you have come to fear for yours or their safety and still want to continue care at home – implement similar things you would do for a small child: place knives out of reach, use child-proof outlet covers, oven knobs, doorknob covers, baby monitors, security/alarm systems, gates to stairs
- Make a chart of commonly used items – picture/word/illustration – laminate it and place it anywhere you need- it sounds silly but is great for giving a loved one some control over their situation. We all have pride! They may HATE to ask you what something is or what it’s for and feel ridiculous for having to ask.
- Get a ‘grandma’ (or whatever other title) sitter and take some time for yourself
- If your loved one is in a facility – don’t feel bad for the times it is too painful to visit

- Always remember to enjoy each day for what it is because tomorrow will be different.