Letting Go
The amount of emotional pain experienced by caregivers of a loved one with dementia is hard to describe to those on the outside looking in. As I read hundreds of postings from exhausted, tormented, torn, insulted, verbally abused children, spouses, grandchildren, and siblings of dementia sufferers, I know that this must be addressed. I have been there. I am no longer there. We need to talk.
It was always my hope that this diary would be an opportunity to say things which are generally left unsaid. On the occasions where I have given advice similar to that which I will share now – the response has often been: “How do you stop caring?” That is not the intent. The goal is to be able to continue to be by the side of the loved one who has terrible memory loss, scrambled thinking, emotions out of control, a lack of appreciation, and even verbal abuse. Why would anyone want to stay by this person who bears no resemblance to the person that we knew for a good portion of our lifetime? Many pleas come forward;
“I hate this disease.”
“I can’t do this anymore.”
It is my contention that the exasperation which so many caregivers experience is a combination of exhaustion because of the physical necessities involved while being a caregiver, and the emotional gutting which is experienced from those we loved all our lives… who barely know us now, and are treating us poorly. It really is too much to be taken sitting down, as the saying goes. Since the loved one cannot change their behavior, we are the ones who must change. We must do this in order to keep our own heads clear, and not sink into an abyss.
There are many ways to improve the behavior of the patient, and I have tried to address them as thoroughly as possible in the chapters which I have written and continue to publish weekly on thedementiadiary.com. As their problems come mostly from brains which no longer can connect the dots, and are confused and stressed, medicines for the patient are essential to calm their behavior so that it does not become so destructive that others are unwilling to continue caring for them.
The psychological, emotional battering that most caregivers experience can be fought, like all battles, and the caregiver can not only survive, but flourish once on a path for self-preservation. On a strictly personal level, I am not sure that I could have accomplished my own turn-around without a prescription for an anti-depressant medication which made it possible for me to function under stresses and responsibilities never before experienced. I certainly could not have moved forward without finding time to myself, and getting assistance eventually with caring for Hubby. I did care for him on my own for about eight years before finally admitting that I needed help. Others begged me to let go of the feeling that I was the only person who could care properly for my husband. When I finally did let go, life became more positive and productive as the days progressed.
It is very difficult for us as human beings with deep emotions to separate the loved one with dementia from the person we loved so well and who loved us in return. It requires a tremendous effort. One must let go of many things which we always took for granted.
We must let go of expectations that our loved one will act in a specific way or act as they have in the past.
We must let go of the anger which we instinctively feel when something rude is said to us (or about us) by that loved one. He/she knows not what they are saying, and they no longer have the power to control what comes out of their mouths as they once did.
We must let go of the feeling of embarrassment when our loved one acts inappropriately. We are not responsible for their behavior and others will not judge us for their actions.
We must let go of the feeling of disappointment when others do not understand our journey, or when our loved one cannot remember our name or even our relationship to them. Why do we allow ourselves the destructive luxury of feeling hurt every time these issues rear their ugly heads?
We must let go of the guilt that we feel when we create time for ourselves; when we take a vacation break from caregiving, or spend an evening with others, while leaving our loved one at home in the care of another.
We must let go of any feelings of embarrassment that our loved one has dementia. It is no one’s fault. It is no more your fault (or theirs) than any other disease, or condition which evolves with time. No one blames the cancer patient for the cancer. No one blames the patient for having lost their memory. No one blames the caregiver for any of this. I am suggesting that one needs to stand proud with this condition, as with any other. Above and beyond, stand proud that you have not abandoned this human being who has loved you and been in your world. Life presents us all with challenges that we would have loved to avoid. This is but one of many which man and womankind must sometimes face with acceptance. So much is beyond our control. It is not anyone’s fault, certainly not the patients.
Laughter is a tremendous healer. In order to let go of the anger we feel. Laughing at the absurdity of a situation is quite refreshing. Better to laugh too often, than to continue crying, suppressing pain and emotions… destroying our own souls in the process. When possible, look to make a situation which has the possibility of getting unpleasant, fun or even silly. Make jokes, and try to make the patient laugh rather than remaining intense and trying to straighten them out. They cannot understand our logic, so a bit of humor and foolishness can replace an otherwise potentially unpleasant situation.
Our job as I view it, is to improve the quality of our own lives as well as that of our loved one- while facing dementia with courage. We only win this battle when we continue to discover that life has meaning and value for both ourselves and the patient.
The fact that we have loved this individual enough to remain by their side through what can be many, many years of decline earns us the right to make space for ourselves as well. I try to remind others, as I am doing right now, that the life of our loved one is important, but no more important than our own life. While we devote ourselves to the care of a loved one, it is not okay if we self-destruct in the process.
Letting go is actually a conscious decision which one must chose to make. It does not come easily. It is necessary to make a deliberate choice to let go of the grief we have repeatedly felt from the loss of what was. We must come to an understanding and accept that which will not return again. We must fill this void in a positive way which will allow us to keep a quality of life in our own existence as well.
Caregivers need to consciously decide to mentally separate themselves from their own repeated emotional reactions which are causing unintentional self-harm. We are, after all, in charge of our feelings. We can choose to be hurt over and over again, or simply refuse to accept that pain. I vote for refusal!
Try letting go. As difficult as it sounds, giving yourself the permission to let go will make your tomorrows better than your yesterdays.
