How Alzheimer’s Patients Grieve

For the last two days, I’ve talked about grief.  On Monday, I summarized and gave an introduction to caregiver grief and on Tuesday, I discussed specifically how Alzheimer’s caregivers grieve.  The premise of both posts was that grief occurs because of loss, not only because of death.  Therefore, as relationships, roles and responsibilities shift while the affected person progresses through the stages of Alzheimer’s disease, it is natural for the caregiver to begin grieving WHILE the person for whom she is caring is still alive and “well.”

There is a significant body of research on grieving, the stages of grief, caregiving and caregiver grief.  There has been much less research done on the how the Alzheimer’s patient grieves.  Part of the problem is that as the disease progresses, the affected person’s ability to articulate diminishes.  Thus, the opportunity is lost for the patient to express his or her feelings and frustrations with what is happening.  Another issue is that caregivers become so overwhelmed with day to day activities and problem solving that they don’t stop and think that as they are grieving, so is the one for whom they are caring.

Yet, we must STOP and think.  If it hurts us to see our loved ones “losing it,” how much more does it hurt them?  At first, they may dismiss the symptoms as stress, senior moments or just plain forgetfulness.  As time progresses and they realize that they are not getting any better, they must get very afraid.

Imagine how you would feel if you were to all of a sudden get lost going someplace you have been going for several years?  What must it be like for your children to tell you its time to stop driving?  What if you woke up and a “stranger” came into your room to help you get ready for the day? 

We don’t know a lot about how the Alzheimer’s patient grieves, but we know that grief is related to loss and before the Alzheimer’s patient loses his memory completely, he KNOWS that something is desperately wrong and he grieves the loss of his status and independence.  He grieves the loss of his position in the family.  Because the disease progresses s-l-o-w-l-y over a number of years, the affected person has time to feel the pain and recognize that things are different.  The family may have chosen to share the diagnosis and so he knows what is coming next, or he may not be aware of the diagnosis. 

So, as you navigate the waters of caregiving, assure your loved one that you will always be there.  Give him lots of hugs and smiles.  Remember, just as you grieve, your loved one is also grieving.  To what extent will depend on how early the diagnosis was made and whether or not the family shares the details of the diagnosis.  Either way, your loved one will certainly experience denial, anger, bargaining, depression and acceptance.  For the person affected with Alzheimer’s disease, “acceptance” may be more of a resignation that he has no control over what’s happening, than a conscious understanding the reality.   His feelings and emotions are compounded by the physiological changes in his brain and the resulting confusion and forgetfulness.  Hold him, love him, touch him and reassure him that you will be there to help him through this time.

               

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.