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Monday, May 5, 2014

"You're Not Helping" May 5, 2014

Happy Cinquo de Mayo everyone. It is surely a huge holiday here in Arizona. Even in the nursing home they had a celebratory luncheon  featuring Mexican rice and beans and an enchilada!
Of course the traditonal fiestas include cervesa, which is beer to all you non-Hispanics.

I am continuing to learn new lessons and to re-learn old lessons I thought I had mastered when it comes to caring for a loved one who has dementia. 

Whenever as adults we are in a caregiver mode, we cannot expect anytning from the care receiver to meet our emotional needs. We need to rely on equal partners for our needs to be met--lovers, spouses,friends--or  when we are lucky enough or young enough--our healthy parents, siblings or other relatives.
 
This is a lesson that needs repeating all the time because we trick ourselves into believing a dependent person can be there for us. They may love us, be grateful to us, make us rise to a level of caring we never knew we were capable of achieving. We may be proud of them "chip off the old block" and all of that- but the caregiver is always in that dominant unequal position vis-a-vis the person or persons receiving care.It is very hard to switch into that role and equally difficult to switch out of it when the children are grown for example or when a person who is ill, recovers.

When a spouse or a parent develops dementia and more specifically Alzheimer's disease or fronto-temporal lobe dementia the balance shifts and it is no longer about the caregiver--it is only about the care receiver. It becomes the caregiver's responsiblity to make life as pleasant as possible for their loved one while also finding other sources of emotional sustenance for themselves. That's the main reason why support groups are so important.

Being angry when a care receiver refuses a request is about you, not the person you are caring for. Feeling abandoned when the care receiver no longer can say your name is also not about the care receiver. Their forgetfulness has an effect on us, but it is the disease not the person that causes those feelings and the loved one cannot be made to feel responsible for his or her forgetfulness.

Also when we visit or spend time with a care receiver they want our full attention. A toddler who acts up when we are on the phone is a perfect example from child-parent relationships. And with my husband this week, a care worker asked innocently what he was like before he became ill. I spent a few minutes standing next to my husband tellling her all good things about my husband when he stopped me and said, "You're not helping."

At first I thought he didn't like the topic of conversation, that he was chastising me for reminding him of his past life, but no, he wanted to walk and I was standing still. His immediate needs were not being met and he let us know it.

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