Survival. It is what all caregivers are trying to focus on. Just getting through each day. Sometimes, just getting through each moment of each day. It can be a struggle that is not only overwhelming, but is unfathomable to those not facing the grueling tasks faced by care providers.
If you are lucky enough to survive, you then face the guilt, the loneliness and the void left behind. The day you waited for and at times, ashamedly, looked forward to arrives and you long for the days of having your loved one back. Even if they weren’t really themselves.
I have tried over and over to put my finger on exactly why it is so much more difficult to be a caregiver for someone with dementia than say, a child, or a cancer patient or someone who has had an accident and is no longer able to care for themselves. What makes it more frustrating? More isolating? More incomprehensible?
Arguably, there are several reasons I have come up with and I am sure several I am missing.
I believe it starts with just trying to get a diagnosis. It isn’t a pain in your stomach or leg that leads you to the doctor to get tested. It is a change in your behavior. It is the inner workings of who a person is that’s morphing, almost at an indistinguishable rate, into a new and unknown being at times that causes the initial concern and frustration. So by the time you get to the doctor there is probably already family tension or things that have been said or done causing much stress. Then it isn’t a simple blood test you take, but a series of tests to tell you all of the things you don’t have. And you wait. And you wait. And you wait. Sometimes it can take years to actually get a diagnosis.
You are told it is Mild Cognitive Impairment (many doctors don’t go straight for the jugular with a dementia diagnosis, they lay it on easy at first). While giving this vague diagnosis, many families are not told what is REALLY going to happen. They aren’t told to get their legal affairs in order, get financially ready for help down the road, start taking those trips they have been putting off, making end of life decisions, funeral decisions, etc. All of these things should be done while the person afflicted still has some mental capacity to help, but all too often, no one is told. It seems they are fine for the most part and certainly will be for a while and things are put off. No one is there to guide you and tell you what is next, what you should be doing and what to prepare yourself for.
Time. Time is another component that makes this path unusual and stressful. I always thought I was just a morbid, uncaring person to want a timetable. I wanted to know how long we had as a family. I wanted to know how long Jim would be at home, how long he would be in a facility, how long he would be able to be a Dad, a husband, a lover. I kept focusing on how much time we may or may not have. It seems I am not alone in this thought process after all. As I speak about our journey and meet other caregivers I have learned most humans are programed to need some sort of guideline and have an idea of a start and finish. Dementia patients are all so different it is nearly impossible to get the timetable we search for.
Physical ailments are easier to spot, easier to understand and comprehend. Even with cancer, many going through treatments lose their hair, their skin changes, they may lose weight. It is something tangible to see, to understand and to empathize with. If you have a stroke and can not walk by yourself, it is visual. It is something you come up with a plan and a way to handle it and move forward. You may go to rehab. You may use a walker. You may eventually get a little better. Or not. Either way, you know the worst it is going to get and you restructure your world to fit your new self.
With dementia, you never know what the day will bring. The loss of faculties ebbs and flows with the growth of the plaques and tangles in the brain. One day they may block a persons ability to tie their shoes and the next day they may be able to recite word for word their favorite poem. They may know you, they may not. They may walk perfectly fine, they may shuffle along. They may understand time, they may not. It is all a crap shoot. Each day brings new challenges, new sadness and at times, lights of awareness and happiness that comes with a person you love so much recognizing something that was special to you both years ago. And it isn’t physical until much later. There were so many times I was told how good Jim looked, how he didn’t look sick, that they didn’t think anything was wrong with him because he looked so healthy…. Over and over I felt as if I was either imagining all of the things that I knew were wrong with Jim, or I felt as if others were second guessing us all the time. If he acted fine one night out with friends then we must be imagining his varied symptoms at home.
Although Alzheimer’s is a disease, the care needed for a person with this disease is not covered by insurance. For example, if you have something broken such as your arm, your insurance covers the cast, the rehabilitation and any other items needed for your physical ailment. Alzheimer’s affects the brain and although we all know the brain controls every function in our bodies, the affects of this disease is not covered by insurance. So, insurance may cover the doctors visits, the medications and even some cognitive therapies or occupational therapies, the daily assisted living help needed is not covered. Only if another medical condition is warranting assistance, such as monitoring of blood pressure, diabetes, or the like. What is called companion care is not covered, even though it is needed just as much as a cast or a pacemaker may be. So, there is a stress financially that is seldom seen with other ailments. This isn’t to say there is not financial burdens incurred with other maladies, but the costs are extremely high and very hard to determine for how long these costs will be incurred (again, we go back to that time thing).
There is still so much misunderstood and unknown about Alzheimer’s Disease and other dementias. Most people aren’t comfortable talking about their diagnosis or their constantly changing mind. They are scared. They are unsure of what to do or where to turn and as a society we have not caught up with this crisis.
So, caregivers are just trying to survive. And they will. You will. It won’t be easy and it may not be pretty, but you will survive and you will one day look back and not know how in the world you did. Then you will look back and know you would do it all over again for just one more day with them. One more smile. One more conversation. One more chance to not get frustrated or to sit quietly and know that there will eventually be an end. Stay strong my friends. We are all in this together.