Caregivers need to care about their own health

hedaojun

New member
Mar 17, 2022
1
0
Hi everyone, I'm a student major in design and now i'm researching how to make Alzheimer's caregivers prioritize their own health. The following is a script I wrote, and I will implement my design according to the content of the script.
I wonder if this script could convince you to prioritize your own health? Or at least generate the will to take care of yourself. It would be great if you guys could give me some advice on where the script falls short!
(Since I'm not a native English speaker, there may be some grammatical mistakes and odd statements in the script, please forgive me)


When your partner, your parent, develops Alzheimer's, you are grieving, helpless, and yet feel an intense responsibility to care. You devoted almost all of your time and energy to your beloved patient, and you swallowed all your exhaustion and emotions in your heart. Finally one day, when your lover suddenly fell down again, a part of your heart suddenly collapsed... (Triggers happen in different ways. One common burnout trigger amongst caregivers is fecal incontinence. Or it could be another event the patient cannot control, like a fall.)
Like them, you are getting older, your legs and feet are inflexible, and your responsiveness is not as good as when you were young. (23% of older caregivers caring for persons 65+ report a higher degree of physical strain compared to 17% who are younger.) Your current job, let a young man with vigor and vigor do it, he is completely competent. However, you are no longer. You should be someone who deserves to be taken care of, but your status as a caregiver keeps you from getting the care you deserve, and even you gradually forget to take care of yourself. When you start to gradually become forgetful, have difficulty concentrating, have difficulty falling asleep at night, and have more and more headaches, it is already a sign of burnout, but you do not realize the seriousness of the problem because you lack an evaluation of your own physical and mental state. (Many caregivers cannot recognize when they are suffering the early signs of burnout and eventually get to the point where they cannot function effectively.) The guidance has never been told to you: caregivers also need to be cared for. So, we're here to tell you that you need to prioritize your own health! Caregiver is the one who deserve the care! Your own health and your loved one's health are interrelated. You have been forgetting to take care of yourself, and your neglect of your own health has indirectly led to harm to the person being cared for. What you need to know is that the care is together and mutual. Caring for you is a way of caring for them, so there is no shame in entertaining and relaxing for yourself! We know your care and love for the person you are caring for, especially when he is your partner, but this kind of love may bring extra stress to you, (Those caring for a spouse are most like to report fair or poor health (27% versus 15% for all other relationships)) You sometimes need to change your mind from "I will never put you into a nursing home!" to "I don't know what the future holds, but I promise I 'll do my best to provide you with the quality care you deserve.". If part of your stress comes from unreasonable demands from family members, talk to them about sharing your caregiving responsibilities and emphasizing the importance of your own health. If unskilled operation puts you under pressure, we will provide basic operation training to help you master it. In conclusion, your physical and mental health should be your priority, and if you are already showing some signs of burnout, don't hesitate to seek help from your GP immediately. Caring yourself is the easiest thing to initiate, start taking care of yourself before the worst happens!
 

Agzy

Registered User
Nov 16, 2016
3,776
0
Moreton, Wirral. UK.
Hi everyone, I'm a student major in design and now i'm researching how to make Alzheimer's caregivers prioritize their own health. The following is a script I wrote, and I will implement my design according to the content of the script.
I wonder if this script could convince you to prioritize your own health? Or at least generate the will to take care of yourself. It would be great if you guys could give me some advice on where the script falls short!
(Since I'm not a native English speaker, there may be some grammatical mistakes and odd statements in the script, please forgive me)


When your partner, your parent, develops Alzheimer's, you are grieving, helpless, and yet feel an intense responsibility to care. You devoted almost all of your time and energy to your beloved patient, and you swallowed all your exhaustion and emotions in your heart. Finally one day, when your lover suddenly fell down again, a part of your heart suddenly collapsed... (Triggers happen in different ways. One common burnout trigger amongst caregivers is fecal incontinence. Or it could be another event the patient cannot control, like a fall.)
Like them, you are getting older, your legs and feet are inflexible, and your responsiveness is not as good as when you were young. (23% of older caregivers caring for persons 65+ report a higher degree of physical strain compared to 17% who are younger.) Your current job, let a young man with vigor and vigor do it, he is completely competent. However, you are no longer. You should be someone who deserves to be taken care of, but your status as a caregiver keeps you from getting the care you deserve, and even you gradually forget to take care of yourself. When you start to gradually become forgetful, have difficulty concentrating, have difficulty falling asleep at night, and have more and more headaches, it is already a sign of burnout, but you do not realize the seriousness of the problem because you lack an evaluation of your own physical and mental state. (Many caregivers cannot recognize when they are suffering the early signs of burnout and eventually get to the point where they cannot function effectively.) The guidance has never been told to you: caregivers also need to be cared for. So, we're here to tell you that you need to prioritize your own health! Caregiver is the one who deserve the care! Your own health and your loved one's health are interrelated. You have been forgetting to take care of yourself, and your neglect of your own health has indirectly led to harm to the person being cared for. What you need to know is that the care is together and mutual. Caring for you is a way of caring for them, so there is no shame in entertaining and relaxing for yourself! We know your care and love for the person you are caring for, especially when he is your partner, but this kind of love may bring extra stress to you, (Those caring for a spouse are most like to report fair or poor health (27% versus 15% for all other relationships)) You sometimes need to change your mind from "I will never put you into a nursing home!" to "I don't know what the future holds, but I promise I 'll do my best to provide you with the quality care you deserve.". If part of your stress comes from unreasonable demands from family members, talk to them about sharing your caregiving responsibilities and emphasizing the importance of your own health. If unskilled operation puts you under pressure, we will provide basic operation training to help you master it. In conclusion, your physical and mental health should be your priority, and if you are already showing some signs of burnout, don't hesitate to seek help from your GP immediately. Caring yourself is the easiest thing to initiate, start taking care of yourself before the worst happens!
With you throughout and could see my pattern within and then I read the bit about talking to family about shared care and the world stops. Getting family who have abdicated responsibility to you (with relief no doubt) is almost impossible in my circumstance and I fear many others. It is the how of pursuading them that needs to be addressed I feel.
 

silkiest

Registered User
Feb 9, 2017
865
0
hi @hedaojun,
the problem in most cases is not that we don't want to prioritise ourselves it is that we cannot. We need more help but cant get it.
Many carers do this alone for a variety of reasons.
I care for mum and mum in law with alzheimers and dad who is blind and deaf. My husband has had to give up work early to help. Husbands family all live abroad so no help there. My brother lives abroad, no help there, they are all self funding so no help from social services. Parents decline carers more than once daily, scream and shout if I try to get carers to do anything.
MIL's carers have a long list of things they should be doing - clean bathrooms when she has faecal accidents, change the bed, do the washing, take the rubbish out etc. She declines all this and again screams, shouts and even pushes them out of the door if they try to do anything other than give her her medication. Husband has to take her out so I can clean faeces off the floor, throw away clothes covered in faeces etc etc. Do you really think we want to be doing any of this.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,258
0
High Peak
It's all very well telling carers to look after themselves. The reality is it often isn't possible - they simply don't have the time or energy to do anything in between caring other than collapse in an exhausted heap.

How can you take a couple of hours for yourself when the person with dementia needs constant attention and cannot be left unsupervised?
 

Dunroamin

Registered User
May 5, 2019
418
0
UK
Firstly there is the academic point of view at one end of the spectrum. Secondly the point of reality which is where the carer(s) of a PWD (person with dementia) stands.

No way can anyone who has never cared for a PWD begin to understand the unremitting pressures the caring role can bring. Taking time out for be cared for, rather than be a caregiver is mission impossible for most.

Once again @Jaded'n'faded hits the nail on the head.
 

jennifer1967

Registered User
Mar 15, 2020
23,131
0
Southampton
where i would find the time in between caring for PWD, all the jobs associated with it eg. washing, drying, bed changing, cleaning bathroom, showering them, meds, hoovering, helping to dress or get ready to go anywhere, answering repeated questions, ad infinitum i dont know. i have a few health issues which treatment has had to be halted because of caring for PWD. these are medical people or counsellors that cant offer some treatments or stop some treatments because i cant find the time to accept it. so caring for the carer has already got conditions of when and how the carer can be treated or not. great theory but in practice, impossible
 

Mahonia

Registered User
Apr 17, 2017
15
0
Hi everyone, I'm a student major in design and now i'm researching how to make Alzheimer's caregivers prioritize their own health. The following is a script I wrote, and I will implement my design according to the content of the script.
I wonder if this script could convince you to prioritize your own health? Or at least generate the will to take care of yourself. It would be great if you guys could give me some advice on where the script falls short!
(Since I'm not a native English speaker, there may be some grammatical mistakes and odd statements in the script, please forgive me)


When your partner, your parent, develops Alzheimer's, you are grieving, helpless, and yet feel an intense responsibility to care. You devoted almost all of your time and energy to your beloved patient, and you swallowed all your exhaustion and emotions in your heart. Finally one day, when your lover suddenly fell down again, a part of your heart suddenly collapsed... (Triggers happen in different ways. One common burnout trigger amongst caregivers is fecal incontinence. Or it could be another event the patient cannot control, like a fall.)
Like them, you are getting older, your legs and feet are inflexible, and your responsiveness is not as good as when you were young. (23% of older caregivers caring for persons 65+ report a higher degree of physical strain compared to 17% who are younger.) Your current job, let a young man with vigor and vigor do it, he is completely competent. However, you are no longer. You should be someone who deserves to be taken care of, but your status as a caregiver keeps you from getting the care you deserve, and even you gradually forget to take care of yourself. When you start to gradually become forgetful, have difficulty concentrating, have difficulty falling asleep at night, and have more and more headaches, it is already a sign of burnout, but you do not realize the seriousness of the problem because you lack an evaluation of your own physical and mental state. (Many caregivers cannot recognize when they are suffering the early signs of burnout and eventually get to the point where they cannot function effectively.) The guidance has never been told to you: caregivers also need to be cared for. So, we're here to tell you that you need to prioritize your own health! Caregiver is the one who deserve the care! Your own health and your loved one's health are interrelated. You have been forgetting to take care of yourself, and your neglect of your own health has indirectly led to harm to the person being cared for. What you need to know is that the care is together and mutual. Caring for you is a way of caring for them, so there is no shame in entertaining and relaxing for yourself! We know your care and love for the person you are caring for, especially when he is your partner, but this kind of love may bring extra stress to you, (Those caring for a spouse are most like to report fair or poor health (27% versus 15% for all other relationships)) You sometimes need to change your mind from "I will never put you into a nursing home!" to "I don't know what the future holds, but I promise I 'll do my best to provide you with the quality care you deserve.". If part of your stress comes from unreasonable demands from family members, talk to them about sharing your caregiving responsibilities and emphasizing the importance of your own health. If unskilled operation puts you under pressure, we will provide basic operation training to help you master it. In conclusion, your physical and mental health should be your priority, and if you are already showing some signs of burnout, don't hesitate to seek help from your GP immediately. Caring yourself is the easiest thing to initiate, start taking care of yourself before the worst happens!

I think you should redraft this in a way that's more specific about the information you want or the points you're trying to make. I think you're trying to say that carers shouldn't martyr themselves because that might not be in the plwds best interests. I agree that the narrative of people giving up their lives just so the pwld can live at home might be harmful to both is important to address.
Im picking up from the perspective of your script, there's a family breakdown of some kind and that certainly happened to me. The matriarch is suddenly the child, the children trying to be parents, their relationship bound by the roles they take on or expect of each other. In the end, someone needs to take on the job. You help them or you don't. But one person needs to be given the freedom of responsibility and get the support they deserve, that includes training about how to do the care fully and effectively.
 

Snuffette

Registered User
Jan 11, 2021
150
0
It's all very well telling carers to look after themselves. The reality is it often isn't possible - they simply don't have the time or energy to do anything in between caring other than collapse in an exhausted heap.

How can you take a couple of hours for yourself when the person with dementia needs constant attention and cannot be left unsupervised?
?Spot on Jaded 'n' faded. Unfortunately, it is (I don't want to say easy but I will)"easy" to write about when there is no experience in this awful disease.
 

Minniemop

New member
Sep 14, 2022
4
0
Totally agree with you. I have my own medical problems, but they take back seat. I’ve not time to worry about myself. I’d like to know how people think we can take time out.
 

Bakerst

Registered User
Mar 4, 2022
319
0
Hi everyone, I'm a student major in design and now i'm researching how to make Alzheimer's caregivers prioritize their own health. The following is a script I wrote, and I will implement my design according to the content of the script.
I wonder if this script could convince you to prioritize your own health? Or at least generate the will to take care of yourself. It would be great if you guys could give me some advice on where the script falls short!
(Since I'm not a native English speaker, there may be some grammatical mistakes and odd statements in the script, please forgive me)


When your partner, your parent, develops Alzheimer's, you are grieving, helpless, and yet feel an intense responsibility to care. You devoted almost all of your time and energy to your beloved patient, and you swallowed all your exhaustion and emotions in your heart. Finally one day, when your lover suddenly fell down again, a part of your heart suddenly collapsed... (Triggers happen in different ways. One common burnout trigger amongst caregivers is fecal incontinence. Or it could be another event the patient cannot control, like a fall.)
Like them, you are getting older, your legs and feet are inflexible, and your responsiveness is not as good as when you were young. (23% of older caregivers caring for persons 65+ report a higher degree of physical strain compared to 17% who are younger.) Your current job, let a young man with vigor and vigor do it, he is completely competent. However, you are no longer. You should be someone who deserves to be taken care of, but your status as a caregiver keeps you from getting the care you deserve, and even you gradually forget to take care of yourself. When you start to gradually become forgetful, have difficulty concentrating, have difficulty falling asleep at night, and have more and more headaches, it is already a sign of burnout, but you do not realize the seriousness of the problem because you lack an evaluation of your own physical and mental state. (Many caregivers cannot recognize when they are suffering the early signs of burnout and eventually get to the point where they cannot function effectively.) The guidance has never been told to you: caregivers also need to be cared for. So, we're here to tell you that you need to prioritize your own health! Caregiver is the one who deserve the care! Your own health and your loved one's health are interrelated. You have been forgetting to take care of yourself, and your neglect of your own health has indirectly led to harm to the person being cared for. What you need to know is that the care is together and mutual. Caring for you is a way of caring for them, so there is no shame in entertaining and relaxing for yourself! We know your care and love for the person you are caring for, especially when he is your partner, but this kind of love may bring extra stress to you, (Those caring for a spouse are most like to report fair or poor health (27% versus 15% for all other relationships)) You sometimes need to change your mind from "I will never put you into a nursing home!" to "I don't know what the future holds, but I promise I 'll do my best to provide you with the quality care you deserve.". If part of your stress comes from unreasonable demands from family members, talk to them about sharing your caregiving responsibilities and emphasizing the importance of your own health. If unskilled operation puts you under pressure, we will provide basic operation training to help you master it. In conclusion, your physical and mental health should be your priority, and if you are already showing some signs of burnout, don't hesitate to seek help from your GP immediately. Caring yourself is the easiest thing to initiate, start taking care of yourself before the worst happens!
Tried gp..no use
Tried family..limited
Tried ss...still trying
Can't exercise
Can't socialise
Can't spend time on myself in any way
There needs to be a complete overhaul of attitude towards all Caregivers
 

Firecatcher

Registered User
Jan 6, 2020
576
0
I’m sick and tired of privileged professionals trying to sugarcoat things. What carers need is to not feel they are forced to do things that they don’t particularly want to and that help is available when they can no longer cope. I’m seen accounts on here where people are literally on their knees. If I was in this position I wouldn’t be doing anything to look after my health because I’d simply want it all to end. Please remember that not everyone had a warm and fuzzy relationship with the PWD prior to the onset of this devastating disease.
 

Pork Pie lady

Registered User
Mar 16, 2013
677
0
Anglia
I am quite offended by this post, you seem to think that we understand very little if anything about how harmful, and dangerous caring can be. You have got it all wrong, caring for yourself when you are a carer is the hardest thing in the world. We do not need to be convinced, coerced or persuaded, we do not need to be told to take a break, ask for help, visit a friend, see the doctor for our own issues or get plenty of sleep and eat well. Plenty of people tell us to do that but don't come up with a way of making it happen. We do not forget to look after ourselves and are not unaware of our needs, we are quite well aware of the seriousness of our physical and mental health issues. We are desperate to look after ourselves properly but for most of us it is totally impossible. Even if we had the time and energy, have you tried to get a GP appointment lately? I find it extremely hurtful to be told that our loved ones are being harmed because of our levels of physical and mental stress however indirectly, we already know that and have been trying to tell people for years. Very few people even listen and even fewer do something about it.

If you had bothered to take the time to talk to a carer before writing this or reading some of the other posts rather than assuming we don't understand you could have avoided causing a lot of unnecessary stress on top of the difficulties we already have.
 

Bakerst

Registered User
Mar 4, 2022
319
0
I am quite offended by this post, you seem to think that we understand very little if anything about how harmful, and dangerous caring can be. You have got it all wrong, caring for yourself when you are a carer is the hardest thing in the world. We do not need to be convinced, coerced or persuaded, we do not need to be told to take a break, ask for help, visit a friend, see the doctor for our own issues or get plenty of sleep and eat well. Plenty of people tell us to do that but don't come up with a way of making it happen. We do not forget to look after ourselves and are not unaware of our needs, we are quite well aware of the seriousness of our physical and mental health issues. We are desperate to look after ourselves properly but for most of us it is totally impossible. Even if we had the time and energy, have you tried to get a GP appointment lately? I find it extremely hurtful to be told that our loved ones are being harmed because of our levels of physical and mental stress however indirectly, we already know that and have been trying to tell people for years. Very few people even listen and even fewer do something about it.

If you had bothered to take the time to talk to a carer before writing this or reading some of the other posts rather than assuming we don't understand you could have avoided causing a lot of unnecessary stress on top of the difficulties we already have.
??thank you
 

jennifer1967

Registered User
Mar 15, 2020
23,131
0
Southampton
I am quite offended by this post, you seem to think that we understand very little if anything about how harmful, and dangerous caring can be. You have got it all wrong, caring for yourself when you are a carer is the hardest thing in the world. We do not need to be convinced, coerced or persuaded, we do not need to be told to take a break, ask for help, visit a friend, see the doctor for our own issues or get plenty of sleep and eat well. Plenty of people tell us to do that but don't come up with a way of making it happen. We do not forget to look after ourselves and are not unaware of our needs, we are quite well aware of the seriousness of our physical and mental health issues. We are desperate to look after ourselves properly but for most of us it is totally impossible. Even if we had the time and energy, have you tried to get a GP appointment lately? I find it extremely hurtful to be told that our loved ones are being harmed because of our levels of physical and mental stress however indirectly, we already know that and have been trying to tell people for years. Very few people even listen and even fewer do something about it.

If you had bothered to take the time to talk to a carer before writing this or reading some of the other posts rather than assuming we don't understand you could have avoided causing a lot of unnecessary stress on top of the difficulties we already have.
i agree. even if we say something like we need help or my health is suffering, they wouldnt listen anyway. i have spent too much time trying to make them listen be it doctors, chemist, that is why im stressed not because i care for my husband. hes a lot easier than getting people to understand what its like to be a carer and the fact you have your own issues. that would take the stress out of it for professionals to listen. the way the OP wrote it is back to front.