About eight years ago, my Hubby who had been my true soul-mate, and a wonderful husband over more than forty years of marriage (at that time… even more), began to “lose his filter.” He would get angry when we went to someone’s dinner party because he said that I was always more interested in the other person sitting to my side, than my Hubby. We garnered a rather awkward reputation for not wanting to sit together, so that Hubby “would not need to look at the back of my head” all night. In and of itself, it might not have been an indicator of what was to come, but the fact that the issue came up every week-end at someone’s home, was rather unsettling. Then there were his repeated complaints about my cooking, when with friends. It is true that chemotherapy and radiation treatments changed his ability to enjoy savory foods, but then again, it was the repetition of the comment “If you had to eat in the same restaurant for 45 years, you would be bored too!” Why would someone choose to repeat the exact same phrase at every opportunity?
In retrospect, I believe that one of the clues of the early stage of the onset of dementia, is the repetition of certain concepts, phrases, and comments frequently, and doing so without realizing that these statements are identical to what was said a bit earlier. I have observed this behavior in others and then been informed later, that their memory was in serious decline.
We all repeat ourselves. We do it partly because it is easy, and partly because we don’t realize that we have said the same things before. It is all a matter of degree. I suspect that repeating phrases in an identical fashion, and often, suggests that the brain is not capable of new ideas or thoughts, and hence pulls out convenient phrases without a great deal of effort.
Spouses are generally the first to notice a decline in memory and other behavior which may indicate that dementia has begun. It is a difficult concept to accept and many people go into denial. If the person of concern claims that there is nothing wrong with them, it may force their spouse to doubt their own judgement. Then a time comes when patterns of behavior become more pronounced and the spouse, adult child, possibly even a grandchild, who cares for the loved one, may look for support from other family members who visit only occasionally. It is shocking how many care-givers are left to fend for a loved one, alone, because others in the family deny that there are any real problems.
This inability to face the facts of a loved one’s decline has many causes. There are many situations where siblings refuse to accept that a parent’s mental faculties have declined and therefore leave the care to the willing brother, sister, grand-child or mate of that parent. I participate in many on-line groups for care-givers who deal with dementia, Alzheimer’s, Parkinson’s, Lewy-Body disease, and other conditions of a similar nature. It is quite shocking how many people (around the globe) write that they have been abandoned by family members who do not want to recognize the seriousness of the decline of the individual.
There are many reasons for this abandonment. Some individuals cannot accept emotionally that a loved one is declining. Others do not want to accept the responsibilities which would be expected of them if they were to acknowledge the situation. Some fear possible financial obligations and turn their backs on those prepared to shoulder the burden. Some people are simply without compassion.
Among those who do not recognize the extreme burden of this decline upon the spouse or family member who has willingly accepted the responsibility for the care of the loved one, are also those who simply have no clue just how difficult the situation is behind closed doors. This is actually why I began writing The Dementia Diary. I wanted to try to explain to those who might need to understand their own family dynamics just what is occurring and how their support is truly needed and of value.
No one actually wants to believe that one of their parents, or another family member is in decline. Subconsciously there may be concerns that it is a genetic condition, which might have been passed on to the children. I suspect that there are specific diseases where that is the case, but dementia is far more common in the current elderly population quite simply because medical science has done such an amazing job of keeping us alive with surgeries, medications, cancer treatments etc., while the body’s defenses weaken in other areas undetected.
The average human life expectancy varies from country to country, but in general, the United Nations reports show that an average lifespan of 75-79 years is recorded in most Western countries with good medical and hospital care. That is an average, so many people are also living into their 80’s, 90’s and upwards. In the United States, as an example, the average life expectancy in 2022 is now 79 years of age. Twenty years ago, it was 77 years of age, and twenty years before that in 1982, it was only 74 years of age. The longer we all survive, the more individuals we will see with dementia, and the greater the odds are that we will need to deal with it directly affecting a close family member.
It is not unusual for one to try to comfort a friend whose spouse is exhibiting behaviors connected to memory loss. “He/she looks great!”, “He/she is so much better than I expected!” Often well-intended words are actually unhelpful. When a spouse or family member who is dealing with the very real day-to-day issues of caregiving, has others around them who deny that there is anything wrong with the loved one, during the few hours they spend together, it demeans the situation and isolates the ones bearing the brunt of the responsibility from day to day.
A dear friend of ours has a favorite saying: “De Nile is a river in Egypt.” It is also a convenient excuse for not showing active support and concern. Denial does not make anything better. It does however, sometimes tear families apart. Be on board when the signs become apparent – your loved ones really need your involvement on so many levels.