Interview with a caregiver
This past week, I was able to sit down with my grandma and ask her questions about taking care of my grandpa. Here are the questions that Janie and I wrote:
1. What was day-to-day life like in the beginning? When did you first start noticing signs of Alzheimerās?
2. Do you recall anything that was particularly frustrating to them early on? What about now?
3. In early stages, what tasks became most difficult first? For you and for your loved one?
4. Did they understand what was happening to them? If so, how did they react to it or what did they say about it? If not, was there any sign that they saw changes in themselves? How did they cope?
5. Was it gradual or instantaneous when your loved one began to lose a certain ability?Ā
6. Was your loved one open to receiving help with these tasks as they began to have a hard time with them?
7. Were there any tools or technology that you used with this person, whether it be to keep them safe or aide them in any way?
8. Can you think of anything that would have been helpful in caring for this person? Or made things easier?
9. What are some tactics youāve used/tried to make certain tasks easier?How do these things affect you? Your loved one? How have they been successful or unsuccessful?
10. What daily tasks have proved to be the most difficult for you and your loved one? Are they different now from early-on?
11. How much time does a particular task take you both? Is there a wide range or is it pretty consistent?
12. What emotions do you feel when trying to complete these tasks with your loved one? How do you think they feel throughout the process?
Asking her these questions, some of her answers answered multiple questions, so I started taking notes and trying to skip over questions that would be redundant. Here are my key takeaways and things that I found particularly informative:
He tends to do things that just donāt make sense. When asked to put things away, heāll do it but in the wrong room or wrong drawer.Ā
Another example of this is that he lays out 10 pairs of socks on his dresser occasionally, all in a line, for no apparent reason.
He lays his handkerchiefs out all over the house.
He saw the signs before she did
One of the earliest signs of memory loss, and in turn Alzheimerās, was that he stopped flying his plane, which he had been doing for 15-20 years. He came home one day and told his wife that he was going to stop flying; when she asked him why, he said that he got in the plane, looked at the control panel, and had no idea what to do with any of the controls.
Since heās always been a relatively quiet person, she didnāt really notice when it happened exactly. He didnāt talk much about his struggles, and they have just taken on the changes that were taking place as they happened. (not much preparation)
Once they started noticing the signs of dementia/Alzheimerās, he was very open to help, and the transition to their roles now came very easily.
Heāll often mention or apologize for being forgetful, and most of the time, she tells him that the reason why is that he has Alzheimerās. She says that he doesnāt respond negatively, but heāll ask what it is and accepts it quietly.
His personality is exaggerated now that he has Alzheimerās
He was always easy-going and quiet, and that is magnified now. He isnāt angry or vocal about his frustrations, he takes the challenges as they come and doesnāt seem to be too disturbed by the disease.
He loved to be around people and tell jokes, which he relies upon now. With anyone other than my grandma, he is quiet and reserved, but likes to contribute to conversations by tellings jokes because itās something he can think of in the moment and doesnāt rely on memory.
Safety isnāt much of a concern for them.
He doesnāt wander off, and typically clings to my grandma since she is one of the few things he remembers now.
He still drives- which scared me at first - but she said she watches him and moniters his basic skills of driving. He knows how to use his turn signals, watches for traffic lights, checks his mirrors, etc. He still does all of this well, he just has no idea where heās going.
She didnāt find many resources that helped her. She received a few books from people that would prepare her for caregiving for him, but she stopped reading/using them because they scared her.
Tactics tried to help daily tasks:
She put a piece of paper in the shower with simple instructions for using shampoo and it did not help at all.
She tries to keep the same things in the same place, to maintain a routine the best she can. Rather than moving things around to how she might like, she has kept things organized exactly how it was before he was diagnosed.
He doesnāt do any tasks independently anymore
innate abilities, things that have always come easy for him have remained. When I got there, he was cleaning a fan. Heād even taken it apart and was cleaning the inside. He has always been very handy and fixed things around the house intuitively.
One particularly frustrating task is getting ready/preparing to leave the house.Ā
he changes his outfit multiple times, even when she lays out an outfit for him
this can takeĀ āat leastā 30 minutes and up to and over an hour.
Emotional toll:
frustration was the most mentioned feeling when asked about completing daily tasks.
She admitted that she yells and said thatĀ ā[they] sound terribleā but they moved on and forget that it happened.
She feels guilty about her reactions in the moment but that something inside of her tells her itās okay to have feelings.
One more thing I found interesting, but did not pertain to any question I asked her, is the amount of people diagnosed with Alzheimerās in her neighborhood. Of the 10 houses on their street, there are 5 people with Alzheimerās.Ā
A little background: Most of the couples living on their street all moved in around the same time, before they had kids, and they are all around the same age.Ā
My grandma took note that while those 5 people all have the same disease, it manifests itself so differently each of them. This is important for my project because it means that our solution will not be able to help all of them, but it may be able to help some of them.