How to Cope With the "Living Death" of Dementia and Alzheimer's:
Anticipatory Grief
For many caretakers, daily care isn't the worst part of dealing with Alzheimer's or other dementias - Grief is.
By Paula Spencer Scott, Caring.com senior editor
What is anticipatory grief?
Anticipatory grief is the emotional pain of losing a loved one, felt in advance of the person's death. It's a common phenomenon among those who care for the terminally ill.
It may be experienced at any time by anyone connected to someone with Alzheimer's, but it's especially common at the middle and late stages of the disease.
-----------------
· Do Tap into hospice. Do look into palliative care help or Phone 1800 772 273. Know that asking for help as the person in your care descends into end-stage Alzheimer's, isn't, as some people mistakenly believe, a secret death wish. You can't control the timing of the end. But it does come eventually, and you deserve the skilled guidance that experts in this passage can offer you, even if it's still months (or more) in the unknowable future.
To understand the Pharmaceutical Benefits for Palliative Care go to
PREPARATIONS WHICH MAY BE PRESCRIBED FOR PATIENTS RECEIVING PALLIATIVE CARE
-----------------
Why Alzheimer's caregivers are vulnerable to anticipatory grief
Good-byes are always painful, and Alzheimer's is the ultimate "long good-bye." Anticipatory grief is rampant, and perhaps inevitable, among Alzheimer's caregivers because of the slow, progressive, and incurable nature of the disease. University of Indianapolis researchers asked more than 400 caregivers the open-ended question, "What would you say is the biggest barrier you have faced as a caregiver?" The majority -- more than 80 percent -- referred to the loss of the person they used to know.
The friends and family of someone with dementia experience two difficult psychological states at once:
· Anticipatory grief, coping with the very real feelings of loss for someone who is still alive
· Ambiguous loss, interacting with someone who's not fully present socially or psychologically
That's a tough mix. Little wonder that more than a quarter of all dementia caregivers suffer from depression. They're in mourning even as they're still doing the hard work of taking care of someone with a difficult disease. Depressed caregivers, more than other depressed people, tend to display symptoms that center on sadness, lack of hope, and guilt.
One of the most difficult aspects of the effects of dementia, no matter what the name of the disease, is that the person we’ve known for all our lives, or all our married lives, begins to change in the way they relate to us. With many thanks for this most well written article...
https://www.dementiadaily.org.au/where-did-you-go/
What you can do when anticipatory grief strikes
· Know your feelings are normal. It can help simply to know that anticipatory grief exists. Just because the person you're caring for still lives doesn't mean you don't get to show dark emotions. Don't feel guilty for experiencing these difficult feelings. Nor should you hold them in.
· Understand that it's "real" grief. A 2001 study in The Gerontologist called anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: Anticipatory grief prepares us for the end. It's a long, slow, painful warm-up, but it is a warm-up.
Click here for some Strategies to help YOU cope and understand. This is not just an end of life loss. This loss is occurring even as you are trying to cope on a day-to-day basis with the difficult care of someone with Dementia. Many of these strategies will be of ongoing help for you.
· Don't try to put a gloss on dementia care. Many caregivers wax poetic about those unexpected "I love you" or sudden bursts of clarity and gratitude. They're fulfilling and should be embraced. But the rest of the time -- well, there's the rest of the time. Don't beat yourself up if you struggle with some aspects of caregiving.
· Be nice to yourself. Grief (anticipatory or otherwise) puts you at risk for depression. Depression puts you at risk for dementia. How to get off this vicious cycle? Start small -- enlist a regular volunteer or paid aide to take over while you do something positive for your own health, such as working out.
· Rely on a support network for an emotional outlet. Long-term studies have found that Alzheimer's caregivers who receive counselling and support, formal or informal, have better health and a lower incidence of depression. You may feel the need to put on a "brave face" in front of the sick person all the time, when expressing your conflicting feelings is what would serve you better. Here to find a support network - you are looking for Dementia Australia - phone (07) 5594 0270, lets you do this. Venting on paper -- writing about your feelings -- can help during those moments when you can't see someone face to face.
and do remember that:
Gold Coast - 2nd April and 21st May
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helplineon 1800 100 500.
9th May - Gold Coast
Considering Residential Care
In this program we discuss the issues and decisions around residential care as well as the barriers to making the decision. Information is provided about the types of residential care, the residential care system, including different types of care available as well as the key features of a good facility. Important legal issues are also outlined. The emotional issues regarding the placement of a loved one in residential care are also discussed.
Cost: Free (funded by the Australian Government)
Suitable for: Family carers at the point of considering the option of residential care for their loved one with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helplineon 1800 100 500.
Living with Memory Loss
Living with Memory Loss courses are run throughout the year and dates can be tailored to suit the needs of participants. Phone 1800 100 500
The Living with Memory Loss program is designed specifically for people in the early stages of dementia who want to share their experiences or feelings with others in the same situation. Participants are able to bring a carer, family member or friend with them if they like. The program provides accurate information about brain function and focuses on ways to help maintain a person's abilities as well as offering practical strategies for living with dementia.
There are also programs for people with younger onset dementia (diagnosis of dementia before the age of 65 years).
Cost: Free (funded by the Australian Government)
Suitable for: Participants must have a diagnosis of dementia or be accompanying a person with a diagnosis.
Content covered includes:
ATSA Independent Living Expo - 15 - 16 May - Brisbane
The ATSA Independent Living Expo will be back and bigger than ever in 2019, with two shows in Sydney (8-9 May) and Brisbane (15-16 May).
Brisbane: Wednesday 15 May – Thursday 16 May 2019.
Royal International Convention Centre, Brisbane – 600 Gregory Terrace, Bowen Hills QLD 4006.
A key feature of the Expo is the FREE Conference Program – run in rooms conveniently located next to the exhibition floor.
Admission is free to therapists, the general public, end users & ATSA members.
To register, visit: www.atsaindependentlivingexpo.com.au
Gold Coast 21st May
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.
Gold Coast and 18th June
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.
20th and 21st June
Living with Change
This special group program spans over two days and is designed to support and assist with the feelings experienced by carers, family members and friends of people with dementia.
Interactive group discussions include:
Suitable for: Carers, family members and friends of people with dementia
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.
Anticipatory Grief
For many caretakers, daily care isn't the worst part of dealing with Alzheimer's or other dementias - Grief is.
By Paula Spencer Scott, Caring.com senior editor
What is anticipatory grief?
Anticipatory grief is the emotional pain of losing a loved one, felt in advance of the person's death. It's a common phenomenon among those who care for the terminally ill.
It may be experienced at any time by anyone connected to someone with Alzheimer's, but it's especially common at the middle and late stages of the disease.
-----------------
· Do Tap into hospice. Do look into palliative care help or Phone 1800 772 273. Know that asking for help as the person in your care descends into end-stage Alzheimer's, isn't, as some people mistakenly believe, a secret death wish. You can't control the timing of the end. But it does come eventually, and you deserve the skilled guidance that experts in this passage can offer you, even if it's still months (or more) in the unknowable future.
To understand the Pharmaceutical Benefits for Palliative Care go to
PREPARATIONS WHICH MAY BE PRESCRIBED FOR PATIENTS RECEIVING PALLIATIVE CARE
-----------------
Why Alzheimer's caregivers are vulnerable to anticipatory grief
Good-byes are always painful, and Alzheimer's is the ultimate "long good-bye." Anticipatory grief is rampant, and perhaps inevitable, among Alzheimer's caregivers because of the slow, progressive, and incurable nature of the disease. University of Indianapolis researchers asked more than 400 caregivers the open-ended question, "What would you say is the biggest barrier you have faced as a caregiver?" The majority -- more than 80 percent -- referred to the loss of the person they used to know.
The friends and family of someone with dementia experience two difficult psychological states at once:
· Anticipatory grief, coping with the very real feelings of loss for someone who is still alive
· Ambiguous loss, interacting with someone who's not fully present socially or psychologically
That's a tough mix. Little wonder that more than a quarter of all dementia caregivers suffer from depression. They're in mourning even as they're still doing the hard work of taking care of someone with a difficult disease. Depressed caregivers, more than other depressed people, tend to display symptoms that center on sadness, lack of hope, and guilt.
One of the most difficult aspects of the effects of dementia, no matter what the name of the disease, is that the person we’ve known for all our lives, or all our married lives, begins to change in the way they relate to us. With many thanks for this most well written article...
https://www.dementiadaily.org.au/where-did-you-go/
What you can do when anticipatory grief strikes
· Know your feelings are normal. It can help simply to know that anticipatory grief exists. Just because the person you're caring for still lives doesn't mean you don't get to show dark emotions. Don't feel guilty for experiencing these difficult feelings. Nor should you hold them in.
· Understand that it's "real" grief. A 2001 study in The Gerontologist called anticipatory grief equivalent in intensity and breadth to the response to death. The odd silver lining: Anticipatory grief prepares us for the end. It's a long, slow, painful warm-up, but it is a warm-up.
Click here for some Strategies to help YOU cope and understand. This is not just an end of life loss. This loss is occurring even as you are trying to cope on a day-to-day basis with the difficult care of someone with Dementia. Many of these strategies will be of ongoing help for you.
· Don't try to put a gloss on dementia care. Many caregivers wax poetic about those unexpected "I love you" or sudden bursts of clarity and gratitude. They're fulfilling and should be embraced. But the rest of the time -- well, there's the rest of the time. Don't beat yourself up if you struggle with some aspects of caregiving.
· Be nice to yourself. Grief (anticipatory or otherwise) puts you at risk for depression. Depression puts you at risk for dementia. How to get off this vicious cycle? Start small -- enlist a regular volunteer or paid aide to take over while you do something positive for your own health, such as working out.
· Rely on a support network for an emotional outlet. Long-term studies have found that Alzheimer's caregivers who receive counselling and support, formal or informal, have better health and a lower incidence of depression. You may feel the need to put on a "brave face" in front of the sick person all the time, when expressing your conflicting feelings is what would serve you better. Here to find a support network - you are looking for Dementia Australia - phone (07) 5594 0270, lets you do this. Venting on paper -- writing about your feelings -- can help during those moments when you can't see someone face to face.
and do remember that:
- People lose functional abilities in the opposite order to which they acquire them
- ‘Early loss’ ADLs like housework, transport, handling money, managing medicines (domestic functioning) are gained last and lost first
- ‘Late loss’ ADLs like dressing, toileting, feeding and bed mobility (self-care) are gained 1st and lost last
- It is reasonable to assume that, if a person can do early loss ADLs, they can also do late loss (supports screening)
Gold Coast - 2nd April and 21st May
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
- The nature of dementia
- Effective communication
- The impact of dementia
- Activities for living and pleasure
- Understand and respond to behaviours of concern
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helplineon 1800 100 500.
9th May - Gold Coast
Considering Residential Care
In this program we discuss the issues and decisions around residential care as well as the barriers to making the decision. Information is provided about the types of residential care, the residential care system, including different types of care available as well as the key features of a good facility. Important legal issues are also outlined. The emotional issues regarding the placement of a loved one in residential care are also discussed.
Cost: Free (funded by the Australian Government)
Suitable for: Family carers at the point of considering the option of residential care for their loved one with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helplineon 1800 100 500.
Living with Memory Loss
Living with Memory Loss courses are run throughout the year and dates can be tailored to suit the needs of participants. Phone 1800 100 500
The Living with Memory Loss program is designed specifically for people in the early stages of dementia who want to share their experiences or feelings with others in the same situation. Participants are able to bring a carer, family member or friend with them if they like. The program provides accurate information about brain function and focuses on ways to help maintain a person's abilities as well as offering practical strategies for living with dementia.
There are also programs for people with younger onset dementia (diagnosis of dementia before the age of 65 years).
Cost: Free (funded by the Australian Government)
Suitable for: Participants must have a diagnosis of dementia or be accompanying a person with a diagnosis.
Content covered includes:
- Symptoms and diagnosis
- Adapting to change
- Research and new drug treatments
- Practical strategies for everyday living
- Relationships with family and friends
- Looking after yourself
- Planning for the future
- Community services
- Where to from here?
ATSA Independent Living Expo - 15 - 16 May - Brisbane
The ATSA Independent Living Expo will be back and bigger than ever in 2019, with two shows in Sydney (8-9 May) and Brisbane (15-16 May).
Brisbane: Wednesday 15 May – Thursday 16 May 2019.
Royal International Convention Centre, Brisbane – 600 Gregory Terrace, Bowen Hills QLD 4006.
- The 2019 ATSA Independent Living Expos will feature more than 100 exhibitors displaying a wide range of products and services in
- assistive technology,
- mobility solutions,
- pressure care,
- employment support,
- accessible recreation/holiday ideas,
- modified motor vehicles and more.
A key feature of the Expo is the FREE Conference Program – run in rooms conveniently located next to the exhibition floor.
Admission is free to therapists, the general public, end users & ATSA members.
To register, visit: www.atsaindependentlivingexpo.com.au
Gold Coast 21st May
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
- The nature of dementia
- Effective communication
- The impact of dementia
- Activities for living and pleasure
- Understand and respond to behaviours of concern
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.
Gold Coast and 18th June
Family Carers Course
Our carer education programs are designed to help you and your family with practical strategies for managing day-to-day and to better understand your own needs and the needs of those for whom you care. You will learn practical strategies and have an opportunity to share common experiences.
Topics include:
- The nature of dementia
- Effective communication
- The impact of dementia
- Activities for living and pleasure
- Understand and respond to behaviours of concern
Suitable for: Family and friends of a person diagnosed with dementia.
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.
20th and 21st June
Living with Change
This special group program spans over two days and is designed to support and assist with the feelings experienced by carers, family members and friends of people with dementia.
Interactive group discussions include:
- What has been lost
- The importance of caring for the carer
- Coping mechanisms
- Celebrating the present and looking towards the future
Suitable for: Carers, family members and friends of people with dementia
Bookings are essential. For more information, or to book, call the National Dementia Helpline on 1800 100 500.