Stages of Caregiving

To help the person with a memory disorder, the caregiver must be helped.
Unless someone dies suddenly, each person will either be a caregiver or need a caregiver.
As soon as a dementia diagnosis is made, the lives of everyone involved are irrevocably changed.
Not everyone experiences all the stages of caregiving.

Subtle effects of dementia occur before signs of memory loss are noticed.
- Self-absorption
- Emotional blunting
  - Losing the capacity to love
- Poor communication
- Intact social skills mask memory changes
- Strained interpersonal relationships
Identifying the subtle effects of dementia can be a relief to family members who have felt the person no longer loved them.
The upcoming caregiving role is influenced by the pre-existing relationship between individuals.

The caregiver experiences wishing and hoping.
Noticeable memory deficits are starting to appear with greater frequency.
Each morning the caregiver arises hoping not to see any major memory failings and when noticed, wishing this was not happening because of what it means for the future.
This is an emotional rollercoaster for the caregiver who fears the impact on their lives.

The caregiver is in the trenches.
The caregiver knows what is happening and what they are up against.
The amount of time the person spends caregiving increases dramatically.
The relationship is no longer equal.
Dealing with the effects of memory loss including repetitive questions, delusions, and anger cause exhaustion.
Fatigue occurs that is resistant to sleep.
Loneliness occurs that is resistant to support from friends and family.

Prolonged stress, feelings of being overwhelmed, and constantly watching a tragedy unfold lead to the switch being thrown FOR the caregiver.
It is not a purposeful act by the caregiver.
Emotional attachment and compassion can only be provided for period of time then the switch is thrown and the emotional attachment and compassion disappear.
The checklist of care items that need done is still managed.
“I can’t do this anymore” and “I wish it was over” are common feelings. Wishing the person with dementia was no longer here brings feelings of guilt and inadequacy.

Recovery from the caregiving experience and dealing with loss
The relief one thought they would feel doesn’t come immediately.
There is a giant hole in the person’s life who has been a long term dedicated caregiver.
No pressure should be put on the caregiver to fill this void. Major decisions should be delayed.
With healthy grieving, over time, sad memories will be replaced by pleasant ones.