How Alzheimer’s Caregivers Grieve

  I talked with a friend yesterday. She could relate to the paradox of caregiver grief.  Being sad, on one hand, as she watches the disease slowly takes her mother away and on the other hand, being grateful that she still has her mother and is able to connect with her, from time to time. The conversation reminded me that caregiving and grief tend to go hand in hand; because caregiving usually causes a role-reversal, or at best a shift in previously established roles.  Yesterday, I talked about the fact that caregivers begin greiving while their loved ones are still alive. Today, I’ll talk about HOW caregivers grieve.

You have probably heard of Elizabeth Kubler Ross.  Regarding end of life issues, she was the uncontested expert.  She started out studying those who were diagnosed with terminal illnesses and she looked at the ups, downs, phases and stages they experienced.  Eventually, she discovered that those who have lost a loved one experience the same stages.  It is now widely accepted that the stages of grief that she described are applicable to grief associated with a myriad of losses.  With that foundation, let’s look specifically at caregiver grief that begins prior to the death of person receiving care

The word stage is a bit of a misnomer, in that it implies that you neatly move from one to the next and then to the end.  That is NOT the case with grief, rather you move in and out and back and forth through the stages. It’s not neat or clear cut, but at least you can put a label on what you, as a caregiver are experiencing, as you grieve while your loved one still lives.

Denial-“I can’t believe this is happening!”  You just cannot wrap your reality around the fact that your loved one is losing the battle against the monster, Alzheimer’s disease.  A part of you believes and holds on to the fact that, “we’ve had hard times before, everything will be just fine.”

Anger-this is when you come to the harsh reality that everything is not fine and you don’t like it at all.  I remember I wanted to punch someone.  I wanted someone to pay for and explain this horrible thing that was happening. Your anger can be directed at the affected person, your spouse or children, other family members, anyone in your path or even God Himself.

Bargaining-You know you are trying to strike up a bargain when you are willing to put your elderly and frail loved one through a barrage of uncomfortable tests or into a clinical study that clearly won’t provide relief; or when you scour the internet and medical journals searching for new treatments and go to specialist after specialist looking for the “cure.”

Depression-Now you get it.  Your reality is that your loved one is very sick and is going to ultimately lose the battle against Alzheimer’s disease.  As a caregiver you may get physically ill yourself, you may cry a lot, seemingly for no reason.  You may socially and spiritually isolate yourself and pull away from friends, family and your faith for a while.

Acceptance-I’d love to have a conversation with Mrs. Kubler Ross on this one. I mean, acceptance has a bit of a positive ring to it.  We accept the illness and the impending death because we don’t have a choice, not because it’s an Emmy award that we have long coveted.  At any rate, our minds and breaking hearts eventually come to grips with the fact that, “there is a time to die.”

Again, the paradox here is that you are going through all of these stages while you go about the business of caregiving.  While your loved one is alive and with you; it feels strange and wrong, but in truth, its right.  Grief, at its core is about acknowledging a loss and even though your loved one is still alive, the relationship is changing and you are losing your loved one.  Denial, anger, bargaining, depression and acceptance are your heart’s response to the losses you are experiencing.

Tomorrow, I’ll talk about the grieving Alzheimer’s patient.