There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.
Stage One: Confusion
The caregiver knows something is wrong, but doesn’t have a diagnosis yet. For those with Lewy Body Dementia, this stage often lasts a year or more as the caregiver and their loved one sees several doctors before finally finding one that offers a diagnosis. Sometimes, the caregiver loses faith in the medical community and begins searching for answers on her own. Emotions often felt are: fear, frustration, anger
Stage Two: Shock
The point the caregiver discovers their loved one has Lewy Body Dementia (or another dementia) either through a doctor’s diagnosis or from doing their own research. The realization of the dramatic changes that will affect their lives can cause panic, fear, anger, and grief. This stage usually lasts anywhere from a few moments to a few months.
Stage Three: Searching
Once the shock of diagnosis wears off, the caregiver kicks into an attack mode, searching for information, treatments, etc. They often join support groups at this time. This stage can last for several months. Emotions often felt: Fear, panic, grief.
Stage Four: Denial
Medications are started or the fluctuations associated with Lewy kick in and their loved one seems to improve. The caregiver begins doubting the diagnosis. Maybe the doctors were wrong? Maybe their loved one has Lymes disease, or a vitamin deficiency? The caregiver will often try alternate treatments or insist on testing for other conditions. If more testing does not provide a different diagnosis, this stage lasts until the symptoms begin manifesting more strongly and the caregiver has no choice but accept the diagnosis. Emotions: hope, relief
Stage Five: Engagement
At this point, the caregiver is forced to accept that the diagnosis was correct and tackles active caregiving. This stage is usually the longest and can last years, depending on the rate of progression for their loved one’s illness. The duties of caregiving are minor at first, but eventually morph into a full time job and the caregiver begins to feel isolated and exhausted. Emotions: Anger, loneliness, determination, jealousy toward those who have normal lives.
Stage Six: Crisis
This is the most critical stage for caregivers and is suffered during the point when their loved one is at their worst. Exhaustion- both physical and mental- begins to take its toll. The caregiver’s emotional state becomes fragile and they wonder how much longer they can survive. The caregiver often feels guilt for wishing the ordeal would end. This stage lasts until the caregiver either gets help, places their loved one in a facility or their loved one declines to the point where they are sleeping most of the day. Emotions often felt: anger, depression, anxiety, guilt
Stage Seven: Acceptance
“It is what it is.”
After getting help in the form of hiring aides, placing their loved one in a care facility, or the loved one declines to an easier state of care, the caregiver settles in for the long haul. This stage is usually associated with a plateau in the loved ones condition. The caregiver has adjusted to the caregiving lifestyle and it has become the new “normal” in their life. They often begin searching out ways to get relief from the stress of their duties. The help they’ve obtained allows them to reconnect with friends or other activities that allow them to begin rebuilding their lives. They long for a life free from caregiving duties. More on that can be found here. Emotions often felt: sadness, resignation, anger, depression, guilt.
Stage Eight: Anticipatory Grief
This stage comes when the loved one has declined to the point that death could occur at any time. The caregiver grieves for the passing of their loved one even though they are still living. With this stage often comes intensified guilt for wanting the situation to end. The caregiver is torn between relief for the end of the journey, and grief for losing their loved one. More information on Anticipatory Grief can be found here and here. Emotions often felt: deep sadness, guilt, active grieving.
Stage Nine: Grief
The death of their loved one ends the caregiving duties, and the caregiver then begins the stages of grief found here, however, since the caregiver has been grieving for a period of years prior to that actual death, they usually reach the acceptance stage more quickly than those dealing with a sudden death scenario.
Not all will go through each stage or will go through them in the same order. It’s also possible that a caregiver will cycle through different stages or return to one as the condition of their loved one changes. For example, I personally never went through denial as I had figured out my husband’s diagnosis two years before the doctor finally confirmed it. It’s also possible for some of the stages to overlap. I began feeling anticipatory grief during the acceptance stage, though it intensified as my husband declined.
Another way to explain the journey can be found here.
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