Buy The Caregiving Years, by Denise Brown of caregiving.com, and follow two family caregivers through the six stages.
http://www.lulu.com/product/paperback/the-caregiving-years-six-stages-to-a-meaningful-journey/4295503
Tuesday, June 15, 2010
The Caregiving Years by Denise Brown
Buy The Caregiving Years, by Denise Brown of caregiving.com, and follow two family caregivers through the six stages.
http://www.lulu.com/product/paperback/the-caregiving-years-six-stages-to-a-meaningful-journey/4295503
Stage 6: The Godspeed Caregiver
My caregiving has ended.
Who are you?
Your role as caregiver ended more than two years ago. You find yourself compelled to make a difference in the lives of other caregivers. You share information readily with caregivers in the earlier stages, or you start a business dedicated to helping family caregivers, or you find a job in which you assist family caregivers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.
Your Keyword: Treasure
–Treasure your dreams;
–Treasure your challenges which led to your opportunities and new skills;
–Treasure your opportunities to share lessons learned;
–Treasure memories of your care recipient.
Your Purpose:
To implement your lessons learned from your role as caregiver, from your care recipient and from your family members and friends. During this stage, which can last as long you wish–even your lifetime–you reap the benefits of your efforts.
As a “Godspeed Caregiver”, what can you do?
1. Follow your dreams.
Make your goals your achievements.
2. Family caregivers will look to you as a mentor and leader.
Allow caregivers in earlier stages the same freedom to stumble and steady themselves that you had. All worthwhile journeys have trips and wrong turns; the journeys become meaningful as we learn from our mis-steps.
Share your experiences with expectant caregivers, freshman caregivers, entrenched caregivers and pragmatic caregivers. They can learn from you! (Many of the books, web sites, audio tapes and videos which helped you along your journey were developed by Godspeed Caregivers. !)
3. Treasure the memories you have of your care recipient.
Continue to remember your care recipient regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in her name. Reading and reviewing your diary will be a great way to remember.
Of course, your best memorial to your care recipient’s memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.
http://www.caregiving.com/the-caregiving-years/stage-6/
Who are you?
Your role as caregiver ended more than two years ago. You find yourself compelled to make a difference in the lives of other caregivers. You share information readily with caregivers in the earlier stages, or you start a business dedicated to helping family caregivers, or you find a job in which you assist family caregivers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.
Your Keyword: Treasure
–Treasure your dreams;
–Treasure your challenges which led to your opportunities and new skills;
–Treasure your opportunities to share lessons learned;
–Treasure memories of your care recipient.
Your Purpose:
To implement your lessons learned from your role as caregiver, from your care recipient and from your family members and friends. During this stage, which can last as long you wish–even your lifetime–you reap the benefits of your efforts.
As a “Godspeed Caregiver”, what can you do?
1. Follow your dreams.
Make your goals your achievements.
2. Family caregivers will look to you as a mentor and leader.
Allow caregivers in earlier stages the same freedom to stumble and steady themselves that you had. All worthwhile journeys have trips and wrong turns; the journeys become meaningful as we learn from our mis-steps.
Share your experiences with expectant caregivers, freshman caregivers, entrenched caregivers and pragmatic caregivers. They can learn from you! (Many of the books, web sites, audio tapes and videos which helped you along your journey were developed by Godspeed Caregivers. !)
3. Treasure the memories you have of your care recipient.
Continue to remember your care recipient regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in her name. Reading and reviewing your diary will be a great way to remember.
Of course, your best memorial to your care recipient’s memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.
http://www.caregiving.com/the-caregiving-years/stage-6/
Stage 5: The Transitioning Caregiver
My role is changing.
Who are you?
You’ve been a caregiver over a period of several years and have recently made a decision about your role as caregiver. Or, your care recipient’s condition has taken a turn for the worse and you know his time is very limited.
As a result, you’ve changed your role–or are just about to.
Your Keyword: Allow
–Allow time to mourn and grieve;
–Allow remembrances to remain;
–Allow reflections of your experiences.
Your Purpose:
To walk with your care recipient during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1. This stage is about loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grieve. As you mourn, you might find yourself questioning what will be the next chapter in your life. You’ve been a caregiver for so long, how can you possibly do anything else?
As a “transitioning caregiver”, what can you do?
1. Allow yourself time to mourn and grief.
A nursing home placement may have been as painful a loss as a death. Both experiences are tremendous losses–and need to be respected with time to process, and then heal, the emotions.
2. Remember your care recipient.
You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your care recipient (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.
3. Reflect back on your caregiving responsibilities and decisions with pride.
Find comfort in knowing that you did the best you could. You did your best, which is the very best you can hope to do.
4. Review your journal.
How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?
http://www.caregiving.com/the-caregiving-years/stage-5/
Who are you?
You’ve been a caregiver over a period of several years and have recently made a decision about your role as caregiver. Or, your care recipient’s condition has taken a turn for the worse and you know his time is very limited.
As a result, you’ve changed your role–or are just about to.
Your Keyword: Allow
–Allow time to mourn and grieve;
–Allow remembrances to remain;
–Allow reflections of your experiences.
Your Purpose:
To walk with your care recipient during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1. This stage is about loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grieve. As you mourn, you might find yourself questioning what will be the next chapter in your life. You’ve been a caregiver for so long, how can you possibly do anything else?
As a “transitioning caregiver”, what can you do?
1. Allow yourself time to mourn and grief.
A nursing home placement may have been as painful a loss as a death. Both experiences are tremendous losses–and need to be respected with time to process, and then heal, the emotions.
2. Remember your care recipient.
You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your care recipient (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.
3. Reflect back on your caregiving responsibilities and decisions with pride.
Find comfort in knowing that you did the best you could. You did your best, which is the very best you can hope to do.
4. Review your journal.
How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?
http://www.caregiving.com/the-caregiving-years/stage-5/
Stage 4: The Pragmatic Caregiver
I am still helping an aging relative.
Who are you?
You’ve been caregiver for an extended period of time. You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind.
Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring”. Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.
Your Keyword: Welcome
–Welcome the joys of your relationship;
–Welcome forgiveness (of yourself, of your care recipient, of other family members and friends, of the health care system, of your community, of your Higher Power);
–Welcome shared activities.
Your Purpose:
To gain a better understanding of yourself and your care recipient. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.
As a “pragmatic caregiver”, what can you do?
1. Work on finding joy in your relationship with your care recipient.
The biggest joy-killers may be your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: Sing songs, tell jokes, share goals and dreams.
2. Work on forgiving your care recipient for past hurts.
Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive.
3. Develop a habit of enjoying shared activities.
Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and care recipient. Releasing the roles of caregiver and care recipient allows you to enjoy each other.
4. Begin to think about your future.
What goals have you yet to achieve? How can you achieve them? Can your care recipient help you achieve them?
http://www.caregiving.com/the-caregiving-years/stage-4/
Who are you?
You’ve been caregiver for an extended period of time. You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind.
Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring”. Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.
Your Keyword: Welcome
–Welcome the joys of your relationship;
–Welcome forgiveness (of yourself, of your care recipient, of other family members and friends, of the health care system, of your community, of your Higher Power);
–Welcome shared activities.
Your Purpose:
To gain a better understanding of yourself and your care recipient. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.
As a “pragmatic caregiver”, what can you do?
1. Work on finding joy in your relationship with your care recipient.
The biggest joy-killers may be your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: Sing songs, tell jokes, share goals and dreams.
2. Work on forgiving your care recipient for past hurts.
Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive.
3. Develop a habit of enjoying shared activities.
Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and care recipient. Releasing the roles of caregiver and care recipient allows you to enjoy each other.
4. Begin to think about your future.
What goals have you yet to achieve? How can you achieve them? Can your care recipient help you achieve them?
http://www.caregiving.com/the-caregiving-years/stage-4/
Stage 3: The Entrenched Caregiver
I am helping an aging relative.
Who are you?
You’ve been involved in your care recipient’s care for a few years. Your involvement is almost daily–if not constant. Your care recipient may live with you–or your involvement means that your day is structured to be available to your care recipient. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your care recipient’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your care recipient’s abilities and functions and often long for the days before caregiving. And, you’re tired.
Your Keyword: Receive
–Receive help–from anyone who offers;
–Receive breaks from caregiving;
–Receive support.
Your Purpose:
To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient–this stage may be the most difficult for both of you. The changes you prepared for in Stage 1 and 2 are now a reality–you have become something of a lifeline to a family member or friend.
As an “entrenched caregiver”, what can you do?
1. Determine your limits.
How long can your care recipient remain at home? What’s your comfort level in providing care in your home? For instance, some caregivers feel uncomfortable providing care when their care recipients become incontinent. Others determine they can provide care at home as long as Medicare or insurance benefits offset some of the home care expenses. Others feel that they can provide care as long as their other family members, like spouses and adult children, will put up with it.
But, everyone has limits. What are yours?
2. Continue regular breaks.
Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can.
3. Keep up with a support system–a caregiver’s support group or empathetic and understanding family members or friends.
And, if you find yourself struggling to stay sane, consider finding help through a counselor or therapist. In addition, check with your doctor about a screening for depression; if you are depressed, ask about treatment and medication options.
4. Continue to learn about your care recipient’s illness or condition.
What’s next for your care recipient? Are you up to the next stages in his or her illness?
5. Start a second journal that you use to detail your care recipient’s needs and your caregiving responsibilities.
Bring the journal to all physician appointments; reference the journal in all meetings with health care professionals.
Note any changes in your care recipient’s health and condition so that you can confidently discuss your concerns during physician appointments. Continue to chronicle your caregiving journey in your first journal. What causes you to mourn?
http://www.caregiving.com/the-caregiving-years/stage-3/
Who are you?
You’ve been involved in your care recipient’s care for a few years. Your involvement is almost daily–if not constant. Your care recipient may live with you–or your involvement means that your day is structured to be available to your care recipient. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your care recipient’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your care recipient’s abilities and functions and often long for the days before caregiving. And, you’re tired.
Your Keyword: Receive
–Receive help–from anyone who offers;
–Receive breaks from caregiving;
–Receive support.
Your Purpose:
To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient–this stage may be the most difficult for both of you. The changes you prepared for in Stage 1 and 2 are now a reality–you have become something of a lifeline to a family member or friend.
As an “entrenched caregiver”, what can you do?
1. Determine your limits.
How long can your care recipient remain at home? What’s your comfort level in providing care in your home? For instance, some caregivers feel uncomfortable providing care when their care recipients become incontinent. Others determine they can provide care at home as long as Medicare or insurance benefits offset some of the home care expenses. Others feel that they can provide care as long as their other family members, like spouses and adult children, will put up with it.
But, everyone has limits. What are yours?
2. Continue regular breaks.
Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can.
| A Quick Tip: In order to survive a trying and emotionally-charged experience, we need to find the meaning. Your experience has a family caregiver is meaningful. You can find the meaning when: –You receive help for yourself and your care recipient from community organizations, your house of worship, your family members, your care recipient’s friends and neighbors. Regular breaks mean you can gain a healthier perspective. –You allow yourself, and your care recipient, to feel the emotions of the experience. Is your care recipient angry that she has had to leave her own home? Allow her to tell you about it. Do you miss your old life–its action, its freedom, its spontaneity? Allow yourself to vent your frustration in a healthy way, in your journal, to your support group, in your artwork. When you receive and allow, you make room for meaningful moments between you and your care recipient. And, that’s when you find the meaning of your caregiving journey. |
And, if you find yourself struggling to stay sane, consider finding help through a counselor or therapist. In addition, check with your doctor about a screening for depression; if you are depressed, ask about treatment and medication options.
4. Continue to learn about your care recipient’s illness or condition.
What’s next for your care recipient? Are you up to the next stages in his or her illness?
5. Start a second journal that you use to detail your care recipient’s needs and your caregiving responsibilities.
Bring the journal to all physician appointments; reference the journal in all meetings with health care professionals.
Note any changes in your care recipient’s health and condition so that you can confidently discuss your concerns during physician appointments. Continue to chronicle your caregiving journey in your first journal. What causes you to mourn?
http://www.caregiving.com/the-caregiving-years/stage-3/
Stage 2: The Freshman Caregiver
I may starting to help an aging relative.
Who are you?
You have been helping an aging relative for a short time. Your duties range from errand-running and bill-paying to hands-on care.
Your keyword: Find
–Find services that help.
–Find support that comforts.
–Find ways to enjoy your hobbies and interest.
Your Purpose:
This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against, you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your care recipient getting along? What situations would create overwhelming stresses for both of you? What situations should you try to avoid because you know they will lead to nasty fights and bitter arguments?
You’ll get a feel for the present and future budgets needed to provide the care your care recipient requires.
In addition, keep up with your hobbies and interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own, enjoying yourself.
As a “freshman caregiver”, what can you do?
1. Learn as much as you can about your care recipient’s illness, disease or condition.
Consult the local branches or chapters of national organizations such as The Arthritis Foundation, the Alzheimer’s Association, The Cancer Society. What does the future hold for you and your care recipient?
2. Learn how to provide proper care from health care professionals or from health care videos, manuals or books.
If your care recipient is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving techniques: lifting, transfers, bathing. Or, search the Internet for hands-on care information.
It’s very difficult to provide care when you are unsure of what you’re doing. You’ll feel much better when you’re confident of your skills.
3. Join a support group–online or in your community.
It’s so isolating to be a caregiver! Support groups will hook you up with others in similar situations; often, you’ll learn of community resources and options from other caregivers that you were not aware of.
4. Count on regular breaks from caregiving.
You can’t be a good caregiver to someone else if you don’t take care of yourself. Plan for regular breaks–an hour daily, an afternoon weekly, or a day monthly–whatever you can manage. Enlist the help of relatives and community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways–through financial support, social support (calling the care recipient regularly just “to talk”), as well as respite support.
5. Rely on help from community organizations.
Meals on Wheels, home care agencies and day care centers, to name just a few, may offer services that your care recipient needs.
Contact your local Area Agency on Aging for a listing of services and organizations in your community. Visit your local medical equipment supply store to find devices and gadgets that enhance your care recipient’s abilities–and independence from you.
In addition, ask about local, state or federal programs that might provide financial assistance for you and/or your care recipient. As your care recipient’s care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your care recipient can afford, will help you plan appropriately for the future.
6. Keep in mind what your care recipient’s wishes are.
If appropriate, ask for his or her input and ideas.
Does your care recipient still feel good about living at home? What does your care recipient fear or dread? (These are also good questions to ask yourself!)
And, take this time to ask about your care recipient’s personal history. You can involve other generations in the story-telling; children in the family can help ask questions and record the answers. Resources to help get the story include Association of Personal Historians and books (Recovering Bodies: Illness, Disability, and Life Writing by Thomas G. Madison; The Wounded Storyteller by Arthur Frank; A Guide to Recalling and Telling Your Life Story, Hospice Foundation of America; Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn (Editor) (Includes information on life review.)
7. Reflect the changes in your journal.
How do you feel now? What are your concerns? Fears? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have given you comfort?
http://www.caregiving.com/the-caregiving-years/stage-2/
Who are you?
You have been helping an aging relative for a short time. Your duties range from errand-running and bill-paying to hands-on care.
Your keyword: Find
–Find services that help.
–Find support that comforts.
–Find ways to enjoy your hobbies and interest.
Your Purpose:
This is your entry into the caregiving role. This is your time to experiment, to get your feet wet and see what works. This is your opportunity to learn how the health care industry works with, or in some cases, against, you. Now is the time to shape your caregiving personality: What duties are you comfortable with? What duties make you uncomfortable? How well are you and your care recipient getting along? What situations would create overwhelming stresses for both of you? What situations should you try to avoid because you know they will lead to nasty fights and bitter arguments?
You’ll get a feel for the present and future budgets needed to provide the care your care recipient requires.
In addition, keep up with your hobbies and interests (you may be able only to keep the ones that you enjoy most), ensuring you have made a habit of spending time on your own, enjoying yourself.
As a “freshman caregiver”, what can you do?
1. Learn as much as you can about your care recipient’s illness, disease or condition.
Consult the local branches or chapters of national organizations such as The Arthritis Foundation, the Alzheimer’s Association, The Cancer Society. What does the future hold for you and your care recipient?
2. Learn how to provide proper care from health care professionals or from health care videos, manuals or books.
If your care recipient is hospitalized or receives short-term therapy at a nursing home, ask the staff to show you proper caregiving techniques: lifting, transfers, bathing. Or, search the Internet for hands-on care information.
It’s very difficult to provide care when you are unsure of what you’re doing. You’ll feel much better when you’re confident of your skills.
3. Join a support group–online or in your community.
It’s so isolating to be a caregiver! Support groups will hook you up with others in similar situations; often, you’ll learn of community resources and options from other caregivers that you were not aware of.
| A Quick Tip: Making a decision on behalf of an aging relative can be intimidating, causing you anxiety, guilt and confusion. You may be plagued by this thought: What is your responsibility? Keep this in mind as you struggle to make the best decisions for an aging relative: You are responsible for providing a safe and healthy environment for your aging relative. That environment may be your care recipient’s home. It may be your home. Or, it may be the nursing home. It may be helpful to break down the decision and determine: Where will my care recipient be safest? Where will she enjoy the healthiest environment? Sometimes the answers become clearer when we have a goal to work toward. |
You can’t be a good caregiver to someone else if you don’t take care of yourself. Plan for regular breaks–an hour daily, an afternoon weekly, or a day monthly–whatever you can manage. Enlist the help of relatives and community services (such as a volunteer group at your local church) so you can take time off regularly. Relatives can help in many ways–through financial support, social support (calling the care recipient regularly just “to talk”), as well as respite support.
5. Rely on help from community organizations.
Meals on Wheels, home care agencies and day care centers, to name just a few, may offer services that your care recipient needs.
Contact your local Area Agency on Aging for a listing of services and organizations in your community. Visit your local medical equipment supply store to find devices and gadgets that enhance your care recipient’s abilities–and independence from you.
In addition, ask about local, state or federal programs that might provide financial assistance for you and/or your care recipient. As your care recipient’s care needs increase, so will the costs associated with his or her care. Understanding what programs can help, in addition to understanding what your care recipient can afford, will help you plan appropriately for the future.
6. Keep in mind what your care recipient’s wishes are.
If appropriate, ask for his or her input and ideas.
Does your care recipient still feel good about living at home? What does your care recipient fear or dread? (These are also good questions to ask yourself!)
And, take this time to ask about your care recipient’s personal history. You can involve other generations in the story-telling; children in the family can help ask questions and record the answers. Resources to help get the story include Association of Personal Historians and books (Recovering Bodies: Illness, Disability, and Life Writing by Thomas G. Madison; The Wounded Storyteller by Arthur Frank; A Guide to Recalling and Telling Your Life Story, Hospice Foundation of America; Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn (Editor) (Includes information on life review.)
7. Reflect the changes in your journal.
How do you feel now? What are your concerns? Fears? What outcomes are you working toward? What losses have you noticed during this period? What changes in the relationship cause you to feel sad? What changes have given you comfort?
http://www.caregiving.com/the-caregiving-years/stage-2/
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