“My life is about to take care of myself”: therapeutic itineraries of care for frail older adults

Souza, Gislaine Alves de; Giacomin, Karla Cristina; Firmo, Josélia Oliveira Araújo

doi:10.1590/1413-81232023289.14372022EN

Gislaine Alves de Souza

conception and design of the article

analysis and interpretation of the data

writing of the article

conception and design of the article

writing of the article

final approval of the version to be published

all aspects of the work to ensure its accuracy and completeness of any part

Programa de Pós-Graduação em Saúde Coletiva, Instituto René Rachou - Fundação Oswaldo Cruz (Fiocruz Minas). R. Uberaba, 780, sala 6, Barro Preto. 30180-080 Belo Horizonte MG Brasil. gislaine.as@gmail.com

https://orcid.org/0000-0002-4556-2416

Karla Cristina Giacomin

all aspects of the work to ensure its accuracy and completeness of any part

Núcleo de Estudos em Saúde Pública e Envelhecimento (NESPE), Instituto René Rachou - Fundação Oswaldo Cruz (Fiocruz Minas). Belo Horizonte MG Brasil.

Secretaria Municipal de Saúde, Prefeitura de Belo Horizonte. Belo Horizonte MG Brasil.

https://orcid.org/0000-0002-9510-6953

Josélia Oliveira Araújo Firmo

conception and design of the article

final approval of the version to be published

all aspects of the work to ensure its accuracy and completeness of any part

Núcleo de Estudos em Saúde Pública e Envelhecimento (NESPE), Instituto René Rachou - Fundação Oswaldo Cruz (Fiocruz Minas). Belo Horizonte MG Brasil.

https://orcid.org/0000-0001-5330-476X

Chief editors:

Romeu Gomes, Antônio Augusto Moura da Silva

Person’s ID/ gender	Age	Family configuration*	Source of income (profession)	Description of health condition (main complaint)
M1	74	She lives with her husband, her son lives upstairs at the same property, and her brother-in-law lives next door	Retired (houseworker)	History of hypertension, suspected minor stroke, recent report of weakness, weight loss, and anemia
M2	72	She lives alone. Widowed and childless. A niece lives nearby, but she complains about being alone	Pensioner and retired (houseworker)	Peripheral neuropathy, depression, use of sleeping medication, history of falls, diabetes, hypertension, arthrosis, vertebral fracture, wear and tear of the spine, knee problems, headache, and reflux
H3	79	He lives with his wife and has two daughters	Retired (engine mechanic)	Trouble moving, burning in the leg, wear and tear of the cervical spine, high cholesterol, pre-diabetes, and history of kidney stones
M4	74	She lives with her husband and has two daughters	Retired (sewage worker, nutrition technician)	History of gallbladder, varicose vein, and cataract surgeries
M5	76	She lives with two grandchildren but has one more daughter who lives on the same land lot (with three grandchildren). Widow, has seven children (three died)	Cleaned houses at 70 years old because she was not retired	History of falls and fractures
M6	89	She lives with her husband. Three children take turns to be present	Retired (houseworker and sewage worker)	History of appendix and gallbladder surgery. Currently, tinnitus in the head, shaky leg, and “nerve” [anxiety]
H7	81	He lives with his wife and has three children	Retired (banking and law graduate)	Hepatitis virus, hernia surgery, pressure change, and ear obstruction
M8	93	She lives with her niece, a professional caregiver. Single, used to lived alone	Retired (teacher)	Three falls [Parkinson’s disease]
H9	76	He lives with his wife and a child. He has two children	Retired (automotive mechanical engineer)	Diabetes, neuropathy, cataract surgery, lower back pain, and vitamin B12 replacement
H10	79	He lives with his wife and one daughter but has two more daughters who live on the same land lot. He has eight children	Retired (mailman)	Takes medicine for his thyroid and reports a history of dizziness and nervousness. Has headache and suffers from alcoholism
M11	86	She lives with two daughters; one works, and the other is bedridden. She has a professional caregiver at home. A widow, she has 12 children (two died)	Retired (teacher)	History of arthrosis that limits her movement, recent conjunctivitis, and onset of pneumonia
H12	86	He lives alone and pays two full-time caregivers. He is divorced and has eight children	Retired (road manager)	He's been on dialysis, has a history of 11 surgeries, and has a femur fracture
M13	74	She lives with her husband and daughter and has two other daughters who live on the same land lot. She has eight children	Beneficiary of the Continuing Benefit (day houseworker)	Diabetes with food restriction and difficulty healing - reports wound that took ten years to heal, led to hospitalization and limited functionality
M14	78	She lives with her husband and has three children	Retired (higher education teacher, psychology graduate)	She has a stent in her heart
M15	83	She lives with her husband (dependent person); a son lives on the same land lot	She works in a fair, selling snacks. (She provided no information about social security)	She is under oncology treatment and requires hernia surgery
M16	83	She has lived with her daughter's family for 10 years. Widowed, she has three children. She lived in the countryside until her husband's death	She provided no information	Shoulder fracture, body pain, cervical spine problem - lordosis; blood pressure and cholesterol treatment
H17	86	He lives with his wife and special needs daughter. He has three children. Another daughter lives nearby	Retired (architect and engineer)	Early-stage Alzheimer's dementia
H18	69	He lives with his wife. He has four children and six grandchildren	He provided no information	He treats chronic myeloid leukemia and had prostate surgery
M19	74	She lives with her husband. He has three married children	Retired (nursing technician in hospital)	She reports some insomnia
M20	72	She lives with her husband (frail). At the time of the interview, there were two sons, a daughter-in-law, grandchildren, and grandchildren’s friends	She provided no information. She takes care of her husband and domestic activities	Complains about her balance
M21	74	She lives with a mentally ill brother	Retired (does not detail professional activity)	Heart problem.
H22	74	He lives with his wife and three daughters. The daughters help with the bills, in paying for health insurance	Retired (theologian)	He lost 50% of the vision in one eye and 90% in the other due to maternal toxoplasmosis. Hypertension

Sections	Meaning
He [the doctor] said I would have to get it. I already had surgery on both shoulders, but it didn't help because I have arthrosis. [...] I have my knee here; Doctor C2 sees this as more swollen than that. There are days when it is really [swollen]. [Due to] attrition, he ordered me to have a shoulder replacement. I don't feel like it at all. Maybe it will get worse later; I've seen two people who got worse and can't stand walking. (W2)	Insufficient
God takes care of the older adults because waiting for medicine is a failure for them unless they have a lot of money, which I don't. I trust God, and I'm standing; if I weren't, I'd be in a wheelchair. I went to get an X-ray. I couldn't stand to stay there to do it. I was forced to do that in terrible pain. It looks like the fracture is even worse. They are professionals [...] who are not prepared to mess with injured older adults. [...] I have a cardiologist. He's old; he knows my frailty. I get there; he doesn't treat me like an equal; he feels young, but I think he's older than me. (W5)	Unprepared
If we go to the doctor, he doesn't ask me how I'm feeling; he asks the girls [daughters]. If I go alone, they don't even consult me. 'Do you know you have to have someone [with you], a companion?' I know what I'm feeling. Do I need a companion to tell me!? But it's their way, right!? They think we don't know or making up that we're feeling something, anything, '-Oh, but we need to have a companion'... -as if we were a child; I don't like to be treated like this because we are just lowering more and more, we see that we're not worth anything, that we don't know anything, I don't know, that we're not telling the truth, I don't know, being an old person is not good! It's not good! Like if I were maybe an old person who attended a club, who was like that, who went out, who was in a park, something like that, perhaps it would be better, but I'm not going anywhere [...] then I talked to the doctor [at the Health Center], I asked the doctor: "I need a geriatrician." He said-But what? Ma'am, are you tearing up money? I said, no.-Are you getting lost on your way home? I said no, like that.-So you don't need one, you don't need a geriatrician." (W13)	Prejudiced
[...] the street passes, on the top side is a vacant land plot with a bit of bush, and on the bottom side is the asylum, and she was sitting there; I said, oh, what will it be, that she had already passed in life? It's there like that, didn't the family want her? Is she so bad that her family doesn't want her? Being at home, they put her there because she's not that old, she's not that old, and she's a corpulent older woman; what is she doing there? And I got this in my head, thinking, how life is ungrateful, how we don't know how it's going to be, the end of life. [...] [if someone] says they want to get old and go to the asylum, I will say, don't go, don't go! There it's like every person for themselves, every person for themselves. (W13)	Discomfort
[...] this medicine is ruining another one, you know? So I stopped [taking it] by myself. I said I'm not going to take this, and I'm going to do what's best for me, so I'm going to reduce excess work, medication, and I'm going to police myself more. [...] I have to know if I'm benefiting from that medication and if it is doing me good or hurting me. (W5)	Contradictory
I went to do some tests. I went to ECU there to do a blood test, and it resulted in anemia. Then the SUS doctor took the tests, but a SUS doctor, you know... It's a very time-consuming thing. Then the ECU doctor said, 'It is good for you to talk to your family, and each one helps and will pay for the blood test.' Then my sisters raised all [the money], each one gave a little, and I did the blood tests. All tests resulted in low [indices], all low. Then I said, 'Oh my God!' I went to the cardiologist, and they paid the cardiologist for me [...]; then he asked me to take medicine, I took medicine, and he said I should look for a SUS hospital to do the follow-up. I went to do the follow-up [...], measuring my blood pressure every day. (W1)	(Un)accessible
Every doctor says something, "There is no way," "This can't be fixed because of your age," then I met a physiatrist who said: No! You need to be treated so you can reach a healthy old age. Then I rejoiced, right, because I was 62. [...] so then I started to be treated, seek various treatments, with several professionals, and they, you know, cared little because the older adult is very like that, despised within the framework [...]. At that point, one thinks about oneself, that one is old, that the doctor said this, the doctor said that [...] And doctors always say that to the patient. And the patient believes it. Except I didn't go for him. I went to find someone who could talk to me better. (W5)	Realization
I would like to add that I don't have health insurance, and our health post, in the P. post, I'm very well received. I have been very successful with all the problems I have had, with them, regarding care; I think I'm very well respected. (M3)	Respectful
So you know, she has been my doctor for many years; I'm just [being seen] by her. I've been getting along very well, controlled health, I've done 52 tests, at her request [...] so you see I take care of my health, that way, every six months I go to the doctor, everything I have, everything I feel I report she refers me to other professionals if that's the case. [...] You will take this medicine here for cholesterol. But, doctor, cholesterol is a boy's. [issue] - It is not to avoid; it is to protect your heart because of your age (laughs). We see things happening. Every time I go there, she gives me another pill. There are times when I take it; there are times when I don't. It's not medicine to cure the disease, and it's medicine to protect [health]. Because of our age, we realize that. So that's it, we're living. (M9)	Excessive

Narratives
What do I do? Oh, I take some pain medication, do some exercise, and put some hot water bags [...] I take care of myself as I told you, staying home, I go to the doctor, I take my medications [...] and my food; I don’t think it’s bad, it’s good, you know? that thank God I can buy dairy products [...] I like to stay up late watching television. After all, I can get up later, because I’m not sleepy early, you know? And then I’m living my little life here, quiet [...] water aerobics; you have to pay for that, right? It’s better to wait until you have the money [...] I’ll take care of myself. [...] doing the things I like [...] Sometimes someone is upset; sometimes, if it’s talk, you end up mistreating that person; I’d like to stay on my own. It’s good to stay away from those things that upset you; I’m not going to take this out of my life; you say this, stay quiet, and oh, you think that, oh, it’s when you have something, you do it, to see the consequences. [Q: But does it protect us?] A: Protect, and you get better. It depends on your faith, doesn’t it? On your courage, you talk to yourself, to God, and ask for protection because we have to have one protection, and God is one, and He doesn’t forsake His children! (W2)
I walk, I climb stairs, I just don’t run because age doesn’t allow it [...] I try to eat well, follow medical recommendations, go for walks, and do some leisure activities, and I go for a walk. When I can, I go to the theater [to see] a comedy, a movie, little things, and I like soccer on television. [...] So I don’t smoke. I try to get along with everyone, especially in the building. I live well with everyone; everyone respects me. [...] I used to go to the farm to travel there at night without a problem; I used to get there, play cards, drink liquor, and smoke a straw cigarette. Barbecue, let’s say, with no limits. But all of this, from about 15 years ago, I practically isolated myself from everything, and every man who values his health has to do it because this only creates problems for the person. (M3)
Nothing better than spiritual health [...] for the older adult, excellent medicine is to have friends, talk, speak [...] when I can, and go to church [...] if you know that your age does not allow you to take this medicine or do what you do, don’t do it! Older adults have to police themselves [...] It is not that you are old, but it is that the time of limitations has come, whether you want it or not [...] There is that medication that if I don’t take it, I will harm others and myself, so I have to take it [...] I always try to have my water bottle by my side, have a television for me to watch [...] avoid smoking, alcohol [...] look for healthy food [...] always try to sleep well [...] obey the rules of the body [...] do mental hygiene [...] physical activity is great, it is very good to walk [...] I come back immediately, and in addition, here in the neighborhood, I do not walk because life has also changed a lot; people don’t care much about others, and it doesn’t take much for them to throw you on the floor. (W5)
I went to the pharmacy, looked for homeopathic medicine, and bought the medicine because when allopathy offers no recourses, we should look at homeopathic medicine. Because I understand a little, I have already used homeopathic medicine, not exclusively; I also take the necessary allopathic medicine. Still, when there is no resource, we look for homeopathy [...] [I take] care not to climb a ladder that can slip [...] I don’t like to be stuck here in the house; I like to go out, talk, meet with friends, chat, and have a beer; it’s not because I’m old that I’m going to stop doing this, maybe I’m the oldest of them, but they accept me as young, the chat flows, the jokes, the soccer discussions [...] now when the environment is a healthy environment a good environment where the people you live with also stimulate you!? The physical and intellectual activities, you start to gain strength, of course, here at home, my children help me a lot in this part, you know, - Daddy, [there is a] good book, they launched a very good series on Netflix. [...] the environment you live in leads you to be positive or negative. Besides, the conviviality is also not only familiar, no, but I also have social conviviality [...] you have to go out, take a walk, let’s go there, let’s do it, help me do it, ok!? (M9)
But I’m taking it like this... it hurts, I take medicine that he prescribes, or if not, I stop moving a little, there’s a hot water bag, another time ... it passes, and I’m taking it... I don’t take it too seriously, no, you know... yeah, it’s too hard. (W16)
To reach this age, well, I think one must have patience, live together, try to avoid anything that can annoy us, and not suffer from anxiety [...] So that’s what we always try to do: live a quiet life within our reality. Good nutrition is also very important. Not having addictions like drinking, smoking, not having addictions like that; food as well, we eat lighter food, more suitable for our bodies. And, if possible, exercise, go for a walk, do Pilates to strengthen the muscles, this is very important. And... Be careful when walking to avoid falling-this is very dangerous at our age. (W19)
Here in the building, I get along with everyone. Everyone respects me. [...] So you have to have love, you have to have affection, you have to have a means of getting around [...] a healthy diet [...], you have to give hope in life [...] Dress the way the older adult likes to dress. [Listening to] music the way older adults like it. So, coexistence in everything. And I’m not disrespectful. (W20)
I got sick in 2007. I had a serious heart problem; I was hospitalized and disillusioned. [...] I was well-medicated, and great doctors took care of me and also with me-there is one thing that I value immensely, which is the spiritual side: I do spiritual treatment, spiritual surgery. And it gave me excellent results. [...] it helps doctors. (W21)

[1] Chief editors:

Romeu Gomes, Antônio Augusto Moura da Silva

Brasil

Brasil

“My life is about to take care of myself”: therapeutic itineraries of care for frail older adults

Abstract