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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Insights from a Doctor’s Personal Journey through Depression
Dr. Michelle Bengtson
Speaking from personal and professional experience, a neuropsychologist unpacks what depression is, shows how it affects us spiritually, and offers hope for living the abundant life.
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You are so right, frequently we don’t know the questions to ask. We can learn so much from the experiences of others. Thank you, Dr. Michelle Bengtson, and thank you to this dear man for sharing his heart.
Thank you for this interview Dr. Bengston. This was such a powerful series, and as someone who’s been exposed to dementia at such a young age (my great-grandmother had it when I was 6), I can tell you that being a caregiver requires a different type of patience. I didn’t know it then, but my grandma and mom, aunts and uncles sacrificed a tremendous amount of time to take care of my great-grandmom, and I could only imagine the string of patience they had to readjust their lives, routines, etc… to cater to her. This interview put it more into perspective for me. That time in their lives were difficult, and it makes me all the more thankful that I have such caring people in my life to be so selfless with their time.
Thank you so much for such a powerful piece, and for sharing it with our readers on #SHINEbloghop this week.
I used to work with dementia patients and can highly respect those who choose to take on the task themselves. Great interview!
Sorry, realized blog address was wrong. https://atattooonhispalm.wordpress.com
I cannot imagine living with some with dementia. My cousin lived with my great aunt caring for her. My aunt took care of her mother, my grandmother. I don’t think I will be faced with that issue. My husband doesn’t have dementia in his family tree. I do. My concern is for myself. He may be caring for me.
Thank you for the great insights into living with someone with dementia. My parents are aging, as are my inlaws, so, statistically, I’m sure it’s going to affect us sooner or later.
Thank you for this post. We have a family member who is in the early stages of dementia and I want to do my best for her. It’s so sad to see her slip away from us.
I’m so sorry you’re going through this. But there is hope. And the more you understand, the easier it is. Keep coming back for more information. This is just part 2 of a five part series. Because of Him, #HopePrevails!
Patience is key, and one that I lack. Then again, understanding is the key to patience, and the more research I do (such as reading this article), the more mistakes I realize I have made. I don’t know if what my loved one has is technically dementia or if it is induced by other factors, but I do know that I need to be more understanding and less judgmental. Thank you for this helpful information!
I suspect you did the best you could do with the information you had at the time. And the more information you get, the better you will do. Give yourself grace. Patience is hard. As you understand more, you will be more patient. Keep coming back for more understanding. Because of Him, #HopePrevails!