Theme

Experience

Insights of home caregivers

Burden and strain from

the care

Personal time limit. Family members

affected by entertainment activities.

Family member 1: “Limited to one position, one mode every day, I can’t go out, can’t do anything, but take care of the patient day and night. There is no communication with her.”

Family member 4: “I used to like running. I haven’t run since my father got sick. I used to travel with my husband, but now I can’t go out.”

Family member 6: “I dare not leave him for fear of an accident to him. I used to go out for square dancing, but now I can’t go. I have to watch him.”

Family member 7: “Now I keep looking at her for fear that something bad may happen to her.”

The communication and relationship between family members are affected.

Family member 4: “There are some things I can’t say to my sister. I feel disgusted with my father if I talk too much. Telling my mother that she doesn’t understand and feels psychologically inseparable. Originally,

I made an agreement with my mother to let my father go to the hospital, but my eldest sister came and stopped it. She was in the countryside and didn’t know much about the disease. She said that our father would not go to the hospital if he didn’t admit the fact he was ill. I was very uncomfortable, but I’m not the boss and my words didn’t carry any weight.”

Family member 5: “Knowing that our family conditions are good, my parents have salaries, and people who sell health products often come to our home to chat. They have spent a lot of money on health products alone, and they don’t listen to me. It is not easy to care for the elderly, while my brothers and sisters also make trouble with each other, my mother does not understand. Now my brother is retired and takes care of the elderly at home. My father’s salary card has also been given to him, but my mother still asks us for money and gave it to my brother. I was very angry.”

Family member 10: “I serve my mother all the time. People thought I was an only child, but actually I had several brothers and sisters.”

Lack of relevant nursing knowledge

Family member 5: “He sleeps upside down, does not sleep at night, sleeping during the day tortures people.”

Family member 6: “How can he get better with this disease? How do you think you can treat it?”

Family member 8: “He doesn’t sleep at night, but he sleeps during the day.

Is there any way to change it?”

Family member 9: “I think the less I communicate with others, the higher the probability of getting dementia.” I hope to provide me with professional nursing knowledge.”

Family member 10: “I don’t know anything about this disease, and I don’t know how to take care of my mother, especially incontinence. Is there any good nursing method?”

Lack of trust in pension institutions

Family member 1: “The nursing home can’t take care of herself in all aspects, so we are worried that pension institutions can’t take care of her well. It is better to hire a nanny so that the elderly can be better taken care of. I have a relative who also has Alzheimer’s disease. Nobody could take care of him at home. He died three months after he was sent to a nursing home.”

Family member 4: “My younger sister said that my father has a salary and he should be sent to a nursing home, but I’m afraid my father can’t be taken

care of in a nursing home. But my older sister thinks it costs too much to send to a nursing home.”

Family member 5: “My mother is reluctant to send my father to a nursing home because she is worried about the condition there. My brother also thinks it costs too much to send to a nursing home.”

Family member 6: “I didn’t want to go to a nursing home.

I’ll just take care of the patient myself.”

Experience and

comprehensions of care

Diet care

Family member 1: “When the patient doesn’t eat well, or when he doesn’t eat, I will say to him that the food was given by the doctor. If you don’t listen, the doctor won’t treat you.”

Family member 2: “I just coax her, this is what you like to eat, this is candy, sometimes she doesn’t not eat at the right time, I will give it to him later.”

Family member 4: “The patient seems doesn’t know if he is full already. I just feed him a certain amount of food.”

Excretion care

Family member 1: “Put open-crotch pants on her, like a child, I estimate her time to pee, then take her to the toilet chair.”

Family member 5: “I bought him a wheelchair and a toilet. I also bought a hairdresser and a razor to clean up for him, which is better than what he did himself.”

Exercise

Family member 1: “In order to exercise her fingers, I give her a box with paper in it, tell her to clean it up, and she would tear or tidy up the paper.”

Family member 3: “I tell her to raise her hand when she wants to pee.”

Family member 4: “He used to be a cashier and liked to calculate, but now I use a small book for him to calculate.”

Communication

Family member 1: “When she was folding the paper, I told her that what she did was really good, that the leader of our city praised you, then she was extremely happy about the compliment. Give her a thumbs up, she is also extremely happy, just like coaxing a child.”

Family member 4: “He was disobedient and angry, so I ignored him and hid. When he’s not angry, I’ll joke with him again.”

Carefulness and patience

Family member 1: “I often nurse her so I know that when she has to urinate, when she takes paper or grabs something else, or scratches her hand on her waist, then I know what she is going to do.”

Family member 2: “In taking care, you should be careful and learn to explore experience.”

Patience

Family member 3: “Sometimes one same question is asked several times. I understand that is due to the illness.”

Self-adjusting

Family member 2: “At the beginning of care, I didn’t not adapt, with the passage of time, I have to adjust the state of my mind.”

Family member 3: “If you can’t accept it at first, adjust your mindset slowly.”

Family member 9: “Sometimes when I was taking care of him, he suddenly hit me. I couldn’t accept and stand it. I adjusted my mindset.”