One of my word press reads talked about having a 26 hour day. It reminded me of the book about Alzheimer’s with that name. Living with someone whose mind is slipping away moment by moment is excruciating. It is hard on those who are losing themselves day after day but it is harder still on those who are watching it happen. Losing the person you love until they no longer know you is beyond terrible.
I have worked with families dealing with this crisis and it is so difficult and painful. It is so hard to cope when the muddled mind changes reality. Caregivers want so badly to correct the thinking and this exacerbates the situation. We want so much to bring them back to who they were and caregivers have to learn to live into the persons reality. I used to visit someone who thought he was living his 20 year ago life. When we talked I had to accept his viewpoint and talk with him about life as he was living it. This is much more difficult for the caregivers.
As the disease progresses management at home can become impossible. Frequently the patient has something called “sundowners.” This means that they are alert when everyone else needs to sleep. A friend of mine’s mother climbed out a window in the middle of the night to “go home.” How can the average family cope with someone who could leave the stove on starting a fire or turns on the bathtub faucet flooding the house? Caregivers are stressed and exhausted.
In the USA the other problem is the cost of care. Many people have to manage care at home with little help. Their day becomes the 26 hour day. Be kind and compassionate for those who are care-giving someone with this illness. Help where you can. Their life is disintegrating one moment at a time.
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