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Wednesday, August 26, 2015

The Slow Fade of Dementia, Ambiguous and Anticipatory Loss, Grief

Caregivers bear the tremendous burden of witnessing the early signs of change in the behavior of their loved one and dealing with the anger and denial of trying to get through to the rest of the family. One very important thing family members don't understand is that unless you actually live with someone day in and day out you just don't see the same person as does the caregiver. The social stimulation of visits and the fussing from loved ones brought out conversation and smiles, only to return home and sink right back down under that black cloud.

Taking care of my mother for over two years has left me a puddle of tearful grief for the slow fading of my precious Mom and the bewildering, questioning of my own sanity. Changes in behavior brought the constant questions of what is normal for her personality, what is part of her condition, what could be a side effect from medications? Dealing with memory loss and confusion is bad enough for a person, but to add a chronic condition such as COPD on top of that and the resulting depression was enough to pull her down into a pit of despair. My desperation for her to fight only resulted in the wall between us to build brick by brick.

Together, we went through all the stages of grief: denial, anger, bargaining, depression and acceptance. Accepting this "new normal" as her life, having no choice but to leave her home and give up control and independence, was incomprehensible.  My reaction was to push, nag, beg, cry, whatever it took to get her to fight to maintain her strength, physically and mentally.  It was all- consuming, while my Mom continued to slowly lose a bit more of her spirit with each new day she woke to realize she had to get through another day. Fast forward three years and now that another sibling is caring for our mother, she is a medicated, zombie of her former self. The solution to the constant anxiety of struggling to breathe is that if the anxiety is relieved we can avoid the tendency to hyperventilate and thus panic. Welcome to the world of narcotics.

The stage of acceptance has arrived and she just doesn't care anymore. The version of Mom that is in the present is what the siblings actually interpret as her being "better". There is quiet and peace in the household only because there is no longer anyone "making waves" by pushing for alternatives and therapies. Palliative care is all there is now.

Gone is the frustration between what she "won't" versus "can't" do for herself. Now it is just the tender care as though she were our child. Now we deal with the guilt associated with our past reactions and emotions while dealing at that time with the craziness. But at that time we didn't understand what was going on. To reflect back now, bits and pieces make more sense. But that war of guilt continues to rage within our own minds, struggling for self-forgiveness for whatever we imagine we did so wrong.

Ambiguous loss and Anticipatory grief can be described as unresolved grief. It is different from the loss and grief surrounding a death. Closure is not possible and there is no peace because the loved one is still physically alive. This is the world surrounding and consuming a family dealing with dementia. This is the world of the patient herself as she must accept the slow loss of her own self and be very aware of it while it is happening.

There is confusion of the use of the words dementia and Alzheimer's disease. They are used interchangeably, but are not the same thing. Alzheimer's is a disease, dementia is not. Dementia is group of symptoms that affect mental tasks like memory and reasoning. Dementia can be caused by a variety of conditions, with Alzheimer's being the most common.

One of those conditions is called Vascular Dementia which is problems with the blood vessels. The brain needs a good supply of oxygen rich blood and if this supply is hindered and the brain is deprived of enough oxygen, as is with COPD, the brain cells could die. Symptoms may appear suddenly or gradually. A major stroke will cause symptoms to appear suddenly, while a series of mini strokes that may have happened over time, will cause a slower progression of symptoms.

There are several ways that COPD may affect thinking and memory. As less air is taken into the lungs, over time the blood oxygen levels in the blood become too low. Low levels of oxygen to the brain may cause neural damage with could increase the risk for memory problems. One big problem with a condition like COPD is that there is inflammation not just with the lungs, but inflammation of the entire body. Elevated levels of certain body chemicals related to inflammation can be linked to memory problems. Another issue is that because the body is working so hard to breathe and get enough oxygen there is the need to sleep more. If a person has trouble sleeping, the resulting fatigue can further interfere with thinking straight.

Since behavior changes can be so subtle, they may only be noticed by the patient himself/herself or by those who live with him or her. So the battle can begin with getting the message across to other family members that something is wrong and getting them to respect the patient or the caregiver's suspicions. It is interesting how differently people react to a physical condition versus something being wrong with the mind. At a time when family should be sticking together and supporting one another, it can become a nightmare when denial, fear, and/or the need for control over decisions, interferes with the big picture of what is best for the loved one.

Aside from going on and on with that, what it all boils down to is the fact that we miss our Mom. I miss the phone calls to rehash whatever event just happened in the family. I miss rambling on and on about the busy lives of our children. Gone is the interest she used to have in our world. Our children are going through the most exciting times in their lives with graduations, weddings, new careers, new homes...and though their beloved Nana is physically here, there is no longer the two way street of sharing in all those precious moments. The conversation is sadly one sided and often forgotten by the next day.
The strain to maintain a close relationship is becoming more difficult and though they call and visit, their lives are going on and their Nana is being left behind.

Witnessing the slow fade of someone we love is heart wrenching and everyone reacts differently in terms of their personal loss. Some hover and some run. We all deal with grief and loss in our own way and we need to respect one another without judgement. The emotional strain and pain of losing someone bit by bit is such a crazy state of limbo to have to go through. Though the mind may come to terms with the realities of the disease and expected outcome, it is unrealistic to expect the heart to be on the same time schedule. We have no choice but to anticipate that final loss, but to have to play the waiting game can be a horrendous, surreal roller coaster ride.

The best medicine in this world is love. When there is little else anyone can do, it is time to up the dose!