The Long Goodbye: Caring For Alzheimer’s Patients

The Long Goodbye: Caring For Alzheimer’s Patients

Caring For Alzheimer’s Patients   

Caring for an Alzheimer’s patient is perhaps second only in difficulty to tending to a chronically and persistently mentally ill loved one. In both cases, you never know if they are going to return to a state of sentience. And if they don’t, they are there but not there. Yet, they are not gone so caregivers can get on with life. In these instances, it is difficult for loved ones’ lives to normalize. The longer it goes on, the more family members wonder if they ever will.

What Is Normal Grief For Caregivers Of Alzheimer’s Patients?

Family caregivers experience an ambiguous loss of their loved one, where the patient is physically present but psychologically absent. These losses are very different from a clear cut loss that can be grieved so the caregiver can move on. It certainly feels like a loss, but it is not an actual one, in that there is no body to cremate or bury.

Research on ambiguous loss conducted by Pauline Boss at the University of Minnesota supports her hypothesis that ambiguous loss is the most difficult one to face. And the pain of the loss is doubled when family caregivers wrestle with whether or not to put an Alzheimer’s patient into a nursing home. Many family members report this is the single most difficult decision they have ever faced. Now, they experience the psychological loss of the loved one bundled with their actual absence plus the guilt many face for making this choice. Caregivers need to mourn all of these losses, in order to move on with their lives.

A Triple Challenge

Caregivers of Alzheimer’s patients experience a chronic and unresolved loss, combined with anticipatory and ambiguous grief. Any one of these is difficult. No wonder their situation provides a huge challenge. Imagine the bundling effect of having to face all three simultaneously when caregivers are already wearied by the demands of care giving.

Unlike losses in the acute phase, where the pain is sharp and virtually palpable, now the loss is experienced more as a sense of impending doom, intense loneliness, helplessness, and longing for what was. In an effort to cope, some psychological numbing is normal. Eventually, loved ones become anesthetized in an attempt to stop the emotional roller coaster. Until the next incident causes their grief to spike again.

However, freezing the grief becomes problematic and should be avoided. It prevents people from truly moving on with their life, in light of their loved one’s illness.

Because Alzheimer’s patients linger for seven to ten years, the predictable life span post diagnosis, the waiting, watching, and their ongoing care often become more burdensome the longer it drags on. After only occasional sightings of the person inside who once was, the burden for caregivers can seem too heavy to bear. So family members naturally tend to insulate themselves from the pain of their loss and of their own helplessness. However, this usually spells trouble.

What Is Grief Run Amuck?

The fear and avoidance of feelings that naturally accompany these seemingly endless ambiguous losses is intensified when caregivers have chronic and unresolved losses in their history. A stillbirth or infertility not grieved, a divorce not accepted, or abuse not healed are all examples of such losses. In order not to have to face an emotional “twofer,” some caregivers seal themselves off from the Alzheimer’s patient. To protect themselves from truly experiencing the seemingly irretrievable disappearance of their loved one, they make a covert and unconscious contract to keep this loss where the previous loss has always been: out of sight and out of mind. Because they can’t actually entomb their absent loved one, they may “bury” him/her emotionally in an effort to put a period at the end of a very long, sad sentence. And who could blame them for wanting their grief to end? However, this will backfire and become its own problem going forward.

What Is The Alternative?

Appropriate management of ambiguous loss and the accompanying psychological distress it generates is one of the most complex emotional tasks there is. Caregivers must attempt to stay connected with and caring for the patient who is slipping away into dementia while mourning the loss of the loved one who was. This is particularly poignant and difficult when the Alzheimer’s patient is a parent. With parents comes the normal, unconscious, infantile wish to be taken care of. This is made more intense when there is unfinished business from the past such as abuse or betrayal of a spouse. In these situations, feelings swirl like a maelstrom.

You need to grieve the loss of the person who was, without emotionally burying him/her in an attempt to get finality or to control the uncontrollable.

5 Do’s and Don’ts

What follows are my strongest recommendations for managing and grieving these overwhelming losses. Each is easy to say, but very difficult to do. So caregivers need to be gentle with themselves and avoid feeling guilty about their struggle to meet these challenges – or about anything else, for that matter.

• Allow yourself to be sad about the loved one who has disappeared because of this pernicious disease, without walking away from the patient.

• Allow yourself to reminisce about and remember all the wonderful times you shared, without letting go of the patient who remains captive of this disease in an attempt to stop your pain.

• Allow yourself to be angry about the patient’s disappearance, the ravages of the disease, or any experience, if that is how you feel, without being so enraged that you cut off the patient emotionally.

• Allow yourself to wish it were different, without living in the “la la land” of denial which will leave you totally unprepared to face the realities of your situation.

• Allow yourself to be taken care of, too, and ask for what you need, without feeling guilty because of your needs, your helplessness, and your limitations and for not focusing all of your attention on the patient.

A Final Word

Of course, all of these recommendations are easy to say. But they are very hard to do. And it will take longer than you want to follow them. But following the recommendations outlined above will keep you connected to the Alzheimer’s patient whose heart still beats, while helping you prepare for when it no longer does. This is the most and the best of what you can do.