The Long Goodbye

The Long Goodbye

By Becky Tallent

It is often called “the long goodbye.” 

People living with dementia frequently have 10 years to say farewell to their loved ones; but unfortunately, those years are often muddled with confusion. The person involved does not realize they are losing their memories, basic knowledge of self-care and themselves.

The view from the family’s side isn’t much better. Guilt often overshadows everything as debates are held on when to place the loved one into care, forcing caregivers to acknowledge the person’s condition has progressed where the family can no longer care for them.

I know all of this because my mother has dementia. 

At first, it was easy to dismiss her lapses as someone who was “just getting older.” As her disease progressed, we have watched her turn from a vivacious woman into someone who is fretful, lost over everyday things. 

Initially the slide seemed slow, but the progression quickly picked up, and now the family – my brothers and I – are debating moving Mom into a memory care facility.  

Logically, I know dementia comes in many forms – Alzheimer’s, Lewy Body Dementia, vascular, fronto-temporal, etc. I know there are seven stages to dementia, and I know there is no cure. Sure, there are drugs to help alleviate some of the symptoms, but no cure yet. Most people will die about 10 years after the diagnosis. Full stop. Emotionally, it is hard to take.

The cause? Again, it varies. It can be from a head injury, heart attack, stroke, or other illness or injury earlier in life. It can also be metabolic disorders, advanced age, alcohol abuse – the list is long.

What makes this even more difficult are the comments from well-meaning people who ask why Mom just cannot be taken into someone’s home. Depending on the type of dementia and the actual condition of the person involved, that is a very complicated issue. No one wants to admit their loved one can no longer remember to sleep at night or to eat. Families do not want to discuss the fights held over going to doctor’s appointments or just getting dressed. 

The conversational “loops” are also very frustrating. The person with dementia reaches a point where their chats consist of repeating the same question or sentence. Eventually, the person cannot understand simple words said to them, so real communication stops.

As for the caregivers, research has proven that family members serving as caregivers are more likely to suffer a stroke, heart attack, or another life-threatening issue due to the stress of care than the person under care. As children of older adults are also aging, this is a real issue. A child of an 88-year-old (or older) dementia patient is usually a 60-plus-year-old adult with a spouse and children along with a job and other outside commitments. It becomes overwhelming. Think of it: No vacation or even get a day’s reprieve from the demands their parent is unknowingly placing on them. 

But dementia isn’t limited to the very elderly. Some people are diagnosed in their 40s or 50s. It is now more common for people to receive such a diagnosis in their 60s rather than their 80s. 

What should people understand about talking with someone who is trying to make decisions about a loved one’s care? The list is short and simple:

• Please do not try to make them feel guilty about placing Mom or Dad into a care facility. This is a last resort because the person needs more specialized care than the family can give.
• Please realize family relationships have changed, while the older person may be respected as an elder, they are no longer capable of safely making their own decisions.

Please do offer support to the caregiver, even if it is just to run an errand for them or to sit with the parent for an hour. Every little bit helps. Family members are not looking for sympathy, only understanding.

Recently, a cousin who was unaware of Mom’s condition said she hoped her aunt would make it to a 100^thbirthday. I carefully explained why I hoped not. Mom is currently 93, and the idea of her living another seven years of not knowing who she is, who her family members are (even when they are standing in front of her) and lacking any quality of life due to the dementia seems cruel to me. The woman my cousin remembers is no longer here, she is adrift in a fog, mostly bits and pieces of yesteryear and her imagination.

Like many, in her long goodbye Mom has already forgotten that she is saying farewell. 

For more information about dementia, please visit the Alzheimer’s Association website at www.alz.org. Here one can find information about all forms of dementia, care and resources.