All of us can attest to the fact that living with dying is a long, arduous journey. Whether the process takes three weeks or three years, each day seems to have 36 hours. The line between the beginning of one day and the end of another disappears. Normalcy and routine cease to exist. Values are re-prioritized. Massive amounts of energy are spent making every minute count.
When death finally comes, there is an actual feeling of relief. The grieving can start, and the living can work to refocus, perhaps regain fragments of former lives. There is sequence to this. Progress can be measured. Decades of psychological study have given us all the information we need to be successful at it. We know what to look for if things are not going well, and know ways to fix it.
All this goes out the window, however, in the case of Alzheimers disease.
Before we go further, though, let's define some terms.
In Western culture, people are living longer all the time. Modern medicine has wrought many advances in a relatively short time. Only 100 years ago, the average life expectancy was 20 to 30 years less than it is now. To put that into perspective, the 'old school marm' was considered a spinster at 35, because she only had a few good years left in her, and those would be dedicated to her students. She had eschewed a family of her own in order to fulfill her educational calling. Now, women are having their first children at that age, and surviving it. 100 years ago, dying in childbirth was very common.
While science has figured out how to prolong the body, the mind and soul have only recently garnered attention. 'Old' people - who used to be 50 - would get forgetful. People took it in stride, because they'd be gone soon. Today we have seperate fields of study for Dementia and Alzheimers.
Dementia - what used to be called forgetfulness - is just about guaranteed in folks in their 80s and 90s.They're not sure what day - or year - it is. They can tell you when they last took their medications, but the information isn't reliable. Questions are asked repeatedly. They forget to turn off the stove, if they remember how to prepare the food at all. They'll tell you they haven't seen someone, and are upset at their absence. You happen to know that person had just visited. It is extremely dangerous for a person in this frame of mind to be alone.
Alzheimers has all these characteristics. But it also may include severe personality changes. Unfortunately, such changes can also be brought on by conflicting medications or biological imbalances.
So how is it determined which disease is actually present? Even for medical professionals, it's a guessing game. Alzheimers, in its true form, is only verified by autopsy. But specialists now have criteria that allows them to be fairly certain while the person still lives. Medications are being developed, and research advancing, even as you read this. The topic of prevention is growing. So to know for nearly certain, a medical professional must be consulted, and many other factors ruled out.
In most cases, the terms Dementia and Alzheimers are used interchangably. So it will be in this article.
Call it what you will, this ailment is very, very hard on a family. It is devastating for the one whose primary responsibility is the care of the elder. As pastor and chaplain, I have buried many more care givers than crazy old people. That fact is stunning and disconcerting.
The particular issue we're dealing with here is when 'death' occurs for a victim. Those who live with someone losing their faculties see bits and pieces of them die on a daily basis. It's hard and it's sad. Sometimes it takes a while before we realize a new outburst or issue is part of the problem, and shouldn't be taken personally.
At this point a recommendation will be made for the book The 36 Hour Day by Nancy Mace and Peter Rabins. It's an oldie, but not hard to find. It was written when Alzheimers was first getting to be so prevalent. It decodes some of the things that don't make sense, and gives many suggestions for coping. A lot of people may experience life with an Alzheimers patient, but it's a new experience for you. So the book can be very helpful still.
But nothing prepares you for the moment that your own parent/grandparent no longer recognizes you. The first few occurances are usually chalked up to confusion. Slowly, horribly, you realize it is now fact. You are a total stranger to the one who gave you birth, that you grew up with, were close to, who knew you better than you knew yourself. Your mother is dead. It rocks you as badly as if you had witnessed her last breath.
The audacity of this ailment, however, is that she isn't dead, technically. So how can you mourn her when she still sits at your table? People who have lost their mothers tell you they'd give anything to have their mothers back for a day, even if she didn't know them. So how do you deal with the guilt of having your mother, but not having her? You feel betrayed, but have no logical explanation for it. You're an orphan with a parent who is no longer a parent. There are lots of tears. And a whole lot of anger.
Most people feel there is no one to understand this. They feel foolish, selfish for even thinking this way. So, we hide it away. We don't dare mention it, for fear of being reproached. We grieve in small, private increments, then put on a stoic face and carry on. The result of this can be that at the time of actual, physical death, this dam bursts and can be destructive.
The first thing you need to know is that hiding it isn't healthy. Accept that your mother has died - to you. When people ask what's wrong, give a short explanation. If they don't get it, be happy for them, and move on. But you'll be surprised at the number of people who DO understand, and will cry with you. These days, way too many of us have been there and done that. It is devastating. We get it.
It's okay to hold your mother and cry. Cry hard. This person who no longer knows you may react in a number of ways, and that's okay. Hold her and cry anyway. If you're lucky enough that she recognizes a hurt human being and offers comfort, take it. Breathe it in and digest it. Treasure it. Let it heal you. If mom asks why you're sad, reply that you've lost someone close to you. Enough said.
In the future, people will ask when you lost your mother. Simply answer "I lost her to Alzheimers'.
Blessings on your recovery.