Dementia is a cruel disease that doesn’t just impact the one diagnosed—it impacts the whole family. When a loved one is diagnosed with dementia, caregivers are often filled with fear, concern, and dread. Caregivers often don’t know what questions to ask because the experience is so new. In today’s post, I’ve continued an interview with a caregiver whose wife was diagnosed with dementia, about the most difficult aspect of his experience dealing with her dementia and his advice for others in a similar situation.
In part 1 of this 5 part series, we discussed the signs and symptoms that led up to a medical diagnosis for dementia: Ask Dr. B: Lessons from a Dementia Caregiver Part 1
In part 3, we discussed the importance of the caregiver joining support groups: Ask Dr. B: Lessons from a Dementia Caregiver Part 3
In part 4, we discussed the importance of the dementia patient receiving respite care as well as the caregiver and a caregiver support group to prevent burnout: Ask Dr. B: Lessons from a Dementia Caregiver Part 4
In part 5, the caregiver and I discussed the power of redirection for the dementia patient as well as the frustration of dealing with a loved one’s memory loss: Ask Dr. B: Lessons from a Dementia Caregiver Part 5
DrB: “What was the most difficult aspect of dealing with your wife’s dementia?”
Caregiver: “Well, there were many difficult aspects, but one of the most difficult aspects was that my time was no longer my time. My time was just filled with distractions of one type of another. Like when my wife would maybe bring me the coffee pot and put it on the keyboard of my computer, or bring the newspaper in and put it in front of the screen, and many other interruptions such as that.”
DrB: “So then you had to change your focus from what you were originally focused on to what the current situation demanded, and it often didn’t make any sense.”
Caregiver: “Right. And then I had to start all over again.”
DrB: “And over again. And over again.”
DrB: “Was there anything you figured out you could do to make those situations easier?”
Caregiver: “Let me just reverse that question just a little bit and tell you some of the things I did wrong. Because now, looking back on it, I realize that many of those interruptions were really an act of love. Like when she brought me coffee or the newspaper, even though I didn’t need them and I didn’t want them. She brought them either to demonstrate her concern or love for me, or to get attention. Sometimes it made me very angry because it was interrupting my work.”
Caregiver: “In fact occasionally, I was even so frustrated and angry that I yelled at her. And I can imagine her reaction now when she was just trying to do something or give me something to be kind to me and she was greeted with an outburst of anger. “
DrB: “Sure. So now, knowing what you know, because you didn’t have the benefit of that information back then, what advice would you give someone who is in the early walk of the journey being greeted with such displays of interruption which were really affection?”
Caregiver: “Just patience, patience, patience. And understanding, but mostly just patience. And grinning and bearing it.
DrB: “Thank you for sharing from your experience.”
Let me just encourage you today that if you are in the early stages of finding out that a loved one has dementia, do what you can to educate yourself and get more information, be understanding and recognize that this is not something that they are doing to try to be an interruption or frustrate you. They don’t know any better.
For more information and to get additional tips, go to my website, http://www.DrMichelleBengtson.com
Because of Him,
(If you have a question you’d like Dr. B to answer, contact her here now. Your name and identity will be kept confidential.)
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