Available through My Health Care Manager
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Tuesday, June 29, 2010
MY MOTHER DOESN'T KNOW ME
The saddest thing for an adult is to feel that the care of a parent is emotionally pointless. Of course, they know the parent must be cared for when dementia has diminished capacity to manage life safely.
“My mother doesn’t even know me,” they’ll say.
“Dad doesn’t even know my name.”
However, it is very clear to me, as a 20-year caregiver of people with dementia that this great divide is not being read accurately by the caregiver or care home visitor. Dementia doesn’t attack the feelings. In fact, many people with dementia come closer to their own feelings than they ever did before their illness. But dementia certainly attacks a person’s ability to communicate clearly.
It also, of course, attacks memory. Short-term can be extremely fragmented. Days, months, years and even decades can be lost to recall. This is what dementia does. Everyone pretty much knows this.
What very few people seem to understand is how this dismantling of memory complicates other issues. Here’s the thing, almost all older people enter life recall at very deep levels. By that I mean, they re-examine, review and possibly revise their life story at great depth. This is a normal and actually very spiritually healthy activity appropriate to old age.
In fact, it is probably healthy and appropriate at any age to try to understand our lives, what made us and what perhaps we need to remake. It is especially significant for elders because of the approach of death. The push for peace, resolution and final understanding of the course of a life is the deep work of age. It is not useless “living in the past.” It is the deep human search to understand life at its most profound level.
Talk to any older person and you’ll find this is a universal concern. Those people sitting around doing nothing? They may be doing something deeper and more spiritually profound than you’ve ever done. So there!
Interestingly, people with dementia do this too. We know this because, if we listened to them — and in my extended experience, most people do NOT listen to those with dementia, even when it may be their own parent — we’d know they’re talking about Mom and Dad, the family home way back and far away, the stuff of upbringing.
But here’s the big complication that dementia brings. Where healthy elders know that they’re simply recalling intense memories of previous times, elders with dementia have no such terms of reference. What they recall, they live, because they do not have the internal calendar of this time and this year with these people.
Effectively, this means that elders with dementia actually reside in former time zones in their own heart, feelings and fractured memory. The really interesting thing about this is their recall is often extremely accurate. They know who lived in that time zone and they get the names right. AND if you are their child now, seventy to ninety years later, they cannot get your name right. How could they? They’re still sixteen.
Therefore, if your mother is living in a different time zone, you need to be listening for the names she does use or the things she’s telling you.
If she calls you Violet — her long dead sister’s name — or jokes about the things you did together, then she is saying, “You’re family, we’re close, I know you.”
And you know what? You need to get over yourself. Because your parent’s dementia is actually NOT all about you. So, listen, think and forgive. You’ll feel much better.
Article Source: http://EzineArticles.com/?expert=Frena_Gray-Davidson
http://www.boomertoboomeronline.ca/2010/05/my-mother-doesnt-know-me/
“My mother doesn’t even know me,” they’ll say.
“Dad doesn’t even know my name.”
However, it is very clear to me, as a 20-year caregiver of people with dementia that this great divide is not being read accurately by the caregiver or care home visitor. Dementia doesn’t attack the feelings. In fact, many people with dementia come closer to their own feelings than they ever did before their illness. But dementia certainly attacks a person’s ability to communicate clearly.
It also, of course, attacks memory. Short-term can be extremely fragmented. Days, months, years and even decades can be lost to recall. This is what dementia does. Everyone pretty much knows this.
What very few people seem to understand is how this dismantling of memory complicates other issues. Here’s the thing, almost all older people enter life recall at very deep levels. By that I mean, they re-examine, review and possibly revise their life story at great depth. This is a normal and actually very spiritually healthy activity appropriate to old age.
In fact, it is probably healthy and appropriate at any age to try to understand our lives, what made us and what perhaps we need to remake. It is especially significant for elders because of the approach of death. The push for peace, resolution and final understanding of the course of a life is the deep work of age. It is not useless “living in the past.” It is the deep human search to understand life at its most profound level.
Talk to any older person and you’ll find this is a universal concern. Those people sitting around doing nothing? They may be doing something deeper and more spiritually profound than you’ve ever done. So there!
Interestingly, people with dementia do this too. We know this because, if we listened to them — and in my extended experience, most people do NOT listen to those with dementia, even when it may be their own parent — we’d know they’re talking about Mom and Dad, the family home way back and far away, the stuff of upbringing.
But here’s the big complication that dementia brings. Where healthy elders know that they’re simply recalling intense memories of previous times, elders with dementia have no such terms of reference. What they recall, they live, because they do not have the internal calendar of this time and this year with these people.
Effectively, this means that elders with dementia actually reside in former time zones in their own heart, feelings and fractured memory. The really interesting thing about this is their recall is often extremely accurate. They know who lived in that time zone and they get the names right. AND if you are their child now, seventy to ninety years later, they cannot get your name right. How could they? They’re still sixteen.
Therefore, if your mother is living in a different time zone, you need to be listening for the names she does use or the things she’s telling you.
If she calls you Violet — her long dead sister’s name — or jokes about the things you did together, then she is saying, “You’re family, we’re close, I know you.”
And you know what? You need to get over yourself. Because your parent’s dementia is actually NOT all about you. So, listen, think and forgive. You’ll feel much better.
Article Source: http://EzineArticles.com/?expert=Frena_Gray-Davidson
http://www.boomertoboomeronline.ca/2010/05/my-mother-doesnt-know-me/
DEMENTIA SUNDOWNING CARE PLAN
Or maybe it’s your Dad. He wants to go home too. But he gets mad about it. He rants. He rages. He wants to go to work. To school. To war. He berates you. Harangues you. Sundowning is transitional for people with dementia but wrenching for their caregivers. Caregivers feel wrung out long after it’s over for the person with dementia. That’s why it’s so important to have a care plan.
Sundowning is a universal phenomenon, not confined to those with dementia. At close of day, emotional feelings intensify. Babies get fretful, people feel their loneliness most, even birds go flying around energetically. It’s a very intensified time throughout the whole of nature. So, keep a sense of proportion.
Each person has sundowning his or her own way, but normal sundowning does not become violent, crazed or last all night. That would be a sign expert psychiatric intervention might be needed, for possible PTSD, undiagnosed schizophrenia or some other serious mental illness or neurological issues.
Normal sundowning typically lasts about two hours. It involves intense feelings of loss, anger, longing, unhappiness, with agitated or anxious behaviors, often repeating the same thing over and over.
Typical might be:
“I have to go home now.”
“Is my mother coming?”
“It’s time for work.”
“Nobody knows where I am.”
Pay close attention to these, because they express real emotional issues. Your support helps genuine emotional issues, but your planning is needed for sundowning. Before you plan, observe.
When does it start? When does it finish? What helps? Since we don’t truly know what sundowning is, we take a multi-tasking approach. Assume hunger and hydration are issues. Assume redirection could help. Assume emotional support, not suppression, is needed. Don’t be afraid. Sundowning doesn’t harm anyone — it’s just distressing. Don’t take on the agitation. This will pass in a given period of time.
The Care Plan:
1. About an hour before sundowning usually starts, give a nutritious snack and both juice and water;
2. When it starts, be supportive, don’t argue, do console. Don’t say, “Your mother died forty years ago,” but “I know you miss your Mom,” and then act motherly;
3. Have your distraction activity ready — a drive in the car, a favorite movie, a cd of waltzes and you two waltzing, an old family photo album, consolation and Kleenex;
4. Relax and breathe deep, don’t get swept up into agitation and do not think it’s all failed brain cells. That’s abandonment of the worst kind.
5. Pay attention to the emotional issues and resolve to work with them. For example, if Dad wants to work, give him daily chores or gardening or something to do, so he can feel less useless. If Mom misses her mother so much, be more motherly to your Mom. That way, you may heal a wound she’s always had until now.
It takes planning, yes, but you’ll be glad you did it. I have found, in 20 years of working with people with dementia, it’s entirely possible to eliminate sundowning with a good all-round care plan.
Article Source: http://EzineArticles.com/?expert=Frena_Gray-Davidson
http://www.boomertoboomeronline.ca/2010/06/dementia-sundowning-care-plan/
Tuesday, June 22, 2010
"Caregiving Is" List
The National Family Caregivers Association has developed this "Caregiving Is" list to give you an idea of just how varied and complex family caregiving can be.
Caregiving itself is a multi-dimensional puzzle. For some it means providing 24-hour care for someone who can't dress, feed, go to the bathroom, or think for himself or herself. For others caregiving is an emotional roller coaster because a diagnosed condition has not exhibited debilitating symptoms - yet.
Caregiving can go on for a few years or for a lifetime. It means re-evaluating finances, re-evaluating job opportunities and making compromises.
Caregiving is learning how to work with doctors and other healthcare professionals so they treat you as an important member of your loved one's healthcare team.
Caregiving is worrying about what's wrong with dad. Why is he not remembering things anymore? Why is he acting so strangely? And then when you hear the diagnosis, your immediate reaction is you wish you had never asked.
Caregiving includes learning about wheelchairs, and lifts and little gadgets that help you button a shirt.
Caregiving is wondering why no one ever asks how you are.
Caregiving is dreaming about being alone in your own house.
Caregiving involves learning about Medicare, Medicaid, social security and other public programs.
Caregiving is learning what it means to die with dignity and making sure that your loved one's wishes will be honored.
Caregiving is the joy you feel when your child with mental retardation or a developmental disability learns a new skill.
Caregiving is the joy you feel when your spouse says he/she felt good today.
Caregiving is the relief you feel when your mother decides its time to move out of the big house and into an assisted living complex.
Caregiving is hard work. Caregiving is pain. Caregiving is loving and giving and sharing. Caregiving is accepting and learning new things and going on, and on, and on. Caregiving is lots of questions and very few answers. Caregiving is being out of the mainstream.
Caregiving is all these things and a whole lot more.
Saturday, June 19, 2010
Is This Normal??? Denise Brown
Caregiving stirs up so many emotions—emotions sometimes too embarrassing to acknowledge. You may wonder: Is this normal?
Take this quick test (just answer yes or no) to find out how normal your caregiving experience is:
1. I often long for the days prior to my caregiving role.
2. On a regular basis, I fight to maintain my composure.
3. Sometimes, I just dread interacting with my care recipient.
4. I often think I am not doing enough.
5. I feel shame about my emotions, particularly the resentment and anger.
6. I have wished that my caregiving days would end.
7. I have hidden from my care recipient (in another room, in my car, in the bathroom).
8. I am not the person I was.
9. I have lost my temper.
10. I am really, really tired.
Did you answer yes to any of the questions? To all of them?
Guess what? You’re normal!
Caregiving can test you unlike an other life experience. The emotions associated with a caregiving experience can be so negative—even if you really, really love your care recipient. These emotions can wear you down faster than the transfers you make from the bed to commode. To stay well emotionally, consider joining a support group, seeing a counselor, hiring a coach, or creating another way for you to vent regularly about what’s really happening.
The worst part about your caregiving challenges? Keeping it to yourself. Find a safe haven to be who you are.
http://www.caregiving.com/quizes/normal/
Take this quick test (just answer yes or no) to find out how normal your caregiving experience is:
1. I often long for the days prior to my caregiving role.
2. On a regular basis, I fight to maintain my composure.
3. Sometimes, I just dread interacting with my care recipient.
4. I often think I am not doing enough.
5. I feel shame about my emotions, particularly the resentment and anger.
6. I have wished that my caregiving days would end.
7. I have hidden from my care recipient (in another room, in my car, in the bathroom).
8. I am not the person I was.
9. I have lost my temper.
10. I am really, really tired.
Did you answer yes to any of the questions? To all of them?
Guess what? You’re normal!
Caregiving can test you unlike an other life experience. The emotions associated with a caregiving experience can be so negative—even if you really, really love your care recipient. These emotions can wear you down faster than the transfers you make from the bed to commode. To stay well emotionally, consider joining a support group, seeing a counselor, hiring a coach, or creating another way for you to vent regularly about what’s really happening.
The worst part about your caregiving challenges? Keeping it to yourself. Find a safe haven to be who you are.
http://www.caregiving.com/quizes/normal/
Is Your Blow-Up Around the Corner? Denise Brown
Caregiving can test your patience like no other life experience. Day after day, it seems that caregiving chips away at your patience, bringing you closer and closer to a blow-up.
How close are you? Take our quick test to find out.
A. Your mother calls you to her room for the umpteenth time in 10 minutes. You know what she’ll ask before you reach her doorway. Sure enough: You find her in her bedroom, ruffling through her nightstand drawer. “Yes, Mom,” you say, in your calmest possible voice. “What do you need?”
Your mom turns around: “I need my Rosary,” she says, “that’s what I need. What did you do with it?”
You:
1. Say, “Mom, we’ve been through this 20 times already today. I don’t know where it is. I didn’t take it. You’ll just have to find it yourself” and leave the room. Thirty minutes later, you check back on your mom and find her room is disarray. An hour later, you’ve put her room back in place—and forgot to pick up your daughter from school.
2. Say, without a twinge of guilt, “Susie (your sister, your mom’s favorite) took it. I don’t know why she keeps taking your Rosary from you. She knows how important it is to you. I would never do that.” (Serves Susie right, you think, as you head out the door. She never helps, she might as well take some of the blame.) This, of course, becomes the only thing your mom remembers all day. She follows you from room to room asking, “Why doesn’t Susie love me? Why would she take my Rosary?”
3. Help her find it. You say, “I know how important the Rosary is to you,” you say. As you move things around in the drawer, you place one of the replacement Rosaries you keep handy in the drawer. You let your mom find it. “There it is,” you say. “I’m so glad you found it. Let’s go in the kitchen and make some tea.”
B. Your husband starts bellowing for you: “Take this oxygen tank outside,” he says. “I’m going to have a cigarette.”
You:
1. Take the oxygen tank outside, but make as much noise as you can and ding as many walls as you possible. You stand outside with the oxygen tank for 30 minutes (this will show him, you think!!) and, once you feel frostbite take hold of your fingers, drag the tank back inside. Your husband looks up from the paper as you bang, ding and swing the tank back into the living room. “You put some dents in the wall,” he says as he calmly points to the living room wall. “You’ll have to paint and spackle tomorrow.”
2. You scream and stomp one foot, then another: “You can’t smoke!! You can’t smoke!! I’m calling the doctor!” You call the doctor’s office; as a result of your phone call, the doctor prescribes valium—for you.
3. You say, “I think we’ll keep the oxygen tank in here. I’ll open the door for you so you can go outside and smoke.”
C. You finally are out of the house (your neighbor volunteered to stay with your care recipient), although it’s only to run to the grocery store. You’ve run out of hard candy, the only thing that seems to keep your care recipient calm in the afternoons. Sucking on the hard candy seems to keep her distracted, keeping her late afternoon agitation at bay. On your way to the store, an older driver pulls in front of you, almost causing an accident.
You:
1. Lay on the horn, which keeps blowing and blowing and blowing and… You applied so much pressure it seems you’ve stuck your horn. You drive to the store and all the way with your horning blowing. In addition to the hard candy, you also bring home a splitting headache.
2. Without thinking, you raise a particular finger which relays a particular message. And, then because you know the driver is probably hard of hearing, you roll down your window and yell: “Don’t you know how to drive?? Get off the road!” Ten minutes later, the guilt is so great about the finger and the screaming that you purchase the wrong hard candy at the store. It’s a long evening for you and your care recipient.
3. Say a quick “Thanks”, with a look to the sky, that no one was hurt as you change lanes. “I think I’ll take the long way home,” you say to no one in particular. You call home and speak to your neighbor: “It’s such a nice day,” you say, “that I’m going to take 15 minutes to sit in the park.” “Good for you,” your neighbor says. “Enjoy!”
D. Your spouse is having a bad day today—so you’re having one, too. No matter what you do or how you do it, it’s not right. Now, she wants lunch and is requesting the very meal you don’t have.
You:
1. Run out to the store and buy what she wants. Inside, you’re cursing her. You call your daughter and say, “I can’t stand your mother today. You’ll have to come here and take over.” Your daughter arrives and takes advantage of the opportunity to lecture you: “I can’t keep rescuing you,” she says. “If you can’t handle this, we’ll have to talk about nursing home placement.
2. Fix the meal you had planned. You’re so burned up about her lack of gratitude that you burn lunch in the process. You tell her, “Too bad! It’s what we have, so it’s what you’re getting.” You and your spouse spend the rest of the day in silence. The silence lingers overnight and into the next day.
3. Stop for a minute to take a few deep breaths. “Let’s sit and talk for a minute,” you say to your spouse. “What’s going on today? We’re having such a bad day. I love you too much to spend a bad day with you. How can we make it a good one?”
How did you do?
Mostly 1’s: The bad news: You’re angling for a blow-up. The good news: It hasn’t happened yet. Take as much time on your own as you can; whether it be at night after your care recipient has gone to bed, or early in the morning before your care recipient gets up. And, give yourself a break from some scheduled activities when you can. Your rest is the top priority. And, continue to vent and rant to your support system—letting it out to them is healthy.
Mostly 2’s: The bad news: You’ve had your blow-up. The good news: What goes up, must come down. Give yourself a break, let anything but the most important caregiving responsibilities go. Call in the reserves, schedule extra help, go to bed early, get up late—whatever you can manage. Everyone has blow-ups. Move on, but be sure you move on by taking some important time to yourself. And, look to your support system to share those bad days; they often can turn a bad day into something that’s amazingly not so bad.
Mostly 3’s: The good news: You’re in good shape! The bad news: The challenge is keeping yourself in good shape. Give yourself time, even if you feel you don’t need it. And, continue to participate in your support system; they’ll be great to have on your bad days.
http://www.caregiving.com/quizes/blow-up/
How close are you? Take our quick test to find out.
A. Your mother calls you to her room for the umpteenth time in 10 minutes. You know what she’ll ask before you reach her doorway. Sure enough: You find her in her bedroom, ruffling through her nightstand drawer. “Yes, Mom,” you say, in your calmest possible voice. “What do you need?”
Your mom turns around: “I need my Rosary,” she says, “that’s what I need. What did you do with it?”
You:
1. Say, “Mom, we’ve been through this 20 times already today. I don’t know where it is. I didn’t take it. You’ll just have to find it yourself” and leave the room. Thirty minutes later, you check back on your mom and find her room is disarray. An hour later, you’ve put her room back in place—and forgot to pick up your daughter from school.
2. Say, without a twinge of guilt, “Susie (your sister, your mom’s favorite) took it. I don’t know why she keeps taking your Rosary from you. She knows how important it is to you. I would never do that.” (Serves Susie right, you think, as you head out the door. She never helps, she might as well take some of the blame.) This, of course, becomes the only thing your mom remembers all day. She follows you from room to room asking, “Why doesn’t Susie love me? Why would she take my Rosary?”
3. Help her find it. You say, “I know how important the Rosary is to you,” you say. As you move things around in the drawer, you place one of the replacement Rosaries you keep handy in the drawer. You let your mom find it. “There it is,” you say. “I’m so glad you found it. Let’s go in the kitchen and make some tea.”
B. Your husband starts bellowing for you: “Take this oxygen tank outside,” he says. “I’m going to have a cigarette.”
You:
1. Take the oxygen tank outside, but make as much noise as you can and ding as many walls as you possible. You stand outside with the oxygen tank for 30 minutes (this will show him, you think!!) and, once you feel frostbite take hold of your fingers, drag the tank back inside. Your husband looks up from the paper as you bang, ding and swing the tank back into the living room. “You put some dents in the wall,” he says as he calmly points to the living room wall. “You’ll have to paint and spackle tomorrow.”
2. You scream and stomp one foot, then another: “You can’t smoke!! You can’t smoke!! I’m calling the doctor!” You call the doctor’s office; as a result of your phone call, the doctor prescribes valium—for you.
3. You say, “I think we’ll keep the oxygen tank in here. I’ll open the door for you so you can go outside and smoke.”
C. You finally are out of the house (your neighbor volunteered to stay with your care recipient), although it’s only to run to the grocery store. You’ve run out of hard candy, the only thing that seems to keep your care recipient calm in the afternoons. Sucking on the hard candy seems to keep her distracted, keeping her late afternoon agitation at bay. On your way to the store, an older driver pulls in front of you, almost causing an accident.
You:
1. Lay on the horn, which keeps blowing and blowing and blowing and… You applied so much pressure it seems you’ve stuck your horn. You drive to the store and all the way with your horning blowing. In addition to the hard candy, you also bring home a splitting headache.
2. Without thinking, you raise a particular finger which relays a particular message. And, then because you know the driver is probably hard of hearing, you roll down your window and yell: “Don’t you know how to drive?? Get off the road!” Ten minutes later, the guilt is so great about the finger and the screaming that you purchase the wrong hard candy at the store. It’s a long evening for you and your care recipient.
3. Say a quick “Thanks”, with a look to the sky, that no one was hurt as you change lanes. “I think I’ll take the long way home,” you say to no one in particular. You call home and speak to your neighbor: “It’s such a nice day,” you say, “that I’m going to take 15 minutes to sit in the park.” “Good for you,” your neighbor says. “Enjoy!”
D. Your spouse is having a bad day today—so you’re having one, too. No matter what you do or how you do it, it’s not right. Now, she wants lunch and is requesting the very meal you don’t have.
You:
1. Run out to the store and buy what she wants. Inside, you’re cursing her. You call your daughter and say, “I can’t stand your mother today. You’ll have to come here and take over.” Your daughter arrives and takes advantage of the opportunity to lecture you: “I can’t keep rescuing you,” she says. “If you can’t handle this, we’ll have to talk about nursing home placement.
2. Fix the meal you had planned. You’re so burned up about her lack of gratitude that you burn lunch in the process. You tell her, “Too bad! It’s what we have, so it’s what you’re getting.” You and your spouse spend the rest of the day in silence. The silence lingers overnight and into the next day.
3. Stop for a minute to take a few deep breaths. “Let’s sit and talk for a minute,” you say to your spouse. “What’s going on today? We’re having such a bad day. I love you too much to spend a bad day with you. How can we make it a good one?”
How did you do?
Mostly 1’s: The bad news: You’re angling for a blow-up. The good news: It hasn’t happened yet. Take as much time on your own as you can; whether it be at night after your care recipient has gone to bed, or early in the morning before your care recipient gets up. And, give yourself a break from some scheduled activities when you can. Your rest is the top priority. And, continue to vent and rant to your support system—letting it out to them is healthy.
Mostly 2’s: The bad news: You’ve had your blow-up. The good news: What goes up, must come down. Give yourself a break, let anything but the most important caregiving responsibilities go. Call in the reserves, schedule extra help, go to bed early, get up late—whatever you can manage. Everyone has blow-ups. Move on, but be sure you move on by taking some important time to yourself. And, look to your support system to share those bad days; they often can turn a bad day into something that’s amazingly not so bad.
Mostly 3’s: The good news: You’re in good shape! The bad news: The challenge is keeping yourself in good shape. Give yourself time, even if you feel you don’t need it. And, continue to participate in your support system; they’ll be great to have on your bad days.
http://www.caregiving.com/quizes/blow-up/
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/
Stage 1: The Expectant Caregiver
In the near future, I may help an aging relative.
Who are you?
You have a growing concern that, in the near future, your aging relative will need more and more of your assistance and time. You’re concerned because of your relative’s age, past and present medical condition, and current living condition.
Your keyword: Ask
–Ask questions of your care recipient.
–Ask questions of health care professionals.
–Ask questions of lawyers and financial planners.
–Ask questions of your family members who may be involved in the caregiving role.
Your Purpose:
You expect to become a caregiver; this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values. This is also your time to concentrate on taking care of yourself–keeping up with family and friends, enjoying your hobbies and interests, pursing your career goals, taking trips you’ve always dreamed of.
Although an immediate crisis may not face you, the threat of one seems to hang in the horizon. Rather than closing your eyes to avoid seeing that horizon, you can take some proactive steps now that will make your future caregiving days easier.
As an “expectant caregiver”, what can you do?
1. Consult with a good lawyer familiar with eldercare issues.
Find out about durable powers of attorney for health care and living wills; start the process to ensure that the necessary legal papers are in order.
2. Determine financial situations.
Knowing the financial status can help determine future health care choices. Determine monthly income from pensions and social security; learn about annuities, stock investments and bank accounts.
3. Investigate community health care options.
What home health care agencies in your area offer quality, affordable home care? What housing options are available: retirement communities, assisted living centers? Contact community organizations to request brochures and pamphlets.
In addition, consider your aging relative’s current living condition. Will your aging relative be able to reside safely in her home if she uses a wheelchair, becomes bedbound? What changes can you make today that will prevent future barriers to providing care in her home? Or, are the necessary changes almost an impossibility? If so, what other options do you have: your home, an assisted living facility, a retirement community?
And, if you are working (or your spouse is), check with your employer about Work/Life benefits and an Employee Assistance Program. These benefits will be useful to you as you look for help and as you struggle with your own emotional well-being.
You can search for providers here: SeniorClix.org.
4. Begin discussions with your aging relative about his or her wishes.
Asking questions now about your relative’s care preferences will help you provide the care your relative wants. Where does your relative want to die? At home? At a care facility? What type of funeral would your relative want? Does your relative have a preference as to whom in the family provides care? How does your relative feel about end-of-life care decisions?
Although you may not be able to meet all your relative’s wishes, you can begin to plan now to meet at least the most important.
5. Determine the current health care providers.
Who are the physicians, what is the diagnosis? In addition, learn about medications and why the medications have been prescribed.
6. Concentrate on the reality of the situations.
Keep a realistic view of their situations: What’s the worst that could happen? What’s the best possible outcome? Then, determine what options are available for each of these outcomes.
7. Start a journal; chronicle your feelings, your concerns and your actions.
You may be surprised at your feelings of loss. Your preparation of the future allows you to see what your care recipient–and you–might lose. You both will experience changes in your relationship, your schedules, your amount of freedom. Write down your thoughts about the potential losses–and how you might be able to hang on to them, through minor adjustments and changes, for a little longer.
8. Organize forms and documents that you’ll need in the future.
You can find free forms to download to help you get started here: SeniorClix.org.
http://www.caregiving.com/the-caregiving-years/stage-1-the-expectant-caregiver/
Who are you?
You have a growing concern that, in the near future, your aging relative will need more and more of your assistance and time. You’re concerned because of your relative’s age, past and present medical condition, and current living condition.
Your keyword: Ask
–Ask questions of your care recipient.
–Ask questions of health care professionals.
–Ask questions of lawyers and financial planners.
–Ask questions of your family members who may be involved in the caregiving role.
Your Purpose:
You expect to become a caregiver; this is your time to prepare. You should research options, gather information, and provide the opportunity for your care recipient to share his or her feelings and values. This is also your time to concentrate on taking care of yourself–keeping up with family and friends, enjoying your hobbies and interests, pursing your career goals, taking trips you’ve always dreamed of.
Although an immediate crisis may not face you, the threat of one seems to hang in the horizon. Rather than closing your eyes to avoid seeing that horizon, you can take some proactive steps now that will make your future caregiving days easier.
As an “expectant caregiver”, what can you do?
1. Consult with a good lawyer familiar with eldercare issues.
Find out about durable powers of attorney for health care and living wills; start the process to ensure that the necessary legal papers are in order.
2. Determine financial situations.
Knowing the financial status can help determine future health care choices. Determine monthly income from pensions and social security; learn about annuities, stock investments and bank accounts.
A Quick Tip: You may find yourself “taking away” from your aging relative–the keys to the car, the solo trip to the grocery store, her hosting the large family get-togethers. To balance the scales, try to replace what you take away. The exchange may not be equal (and in most situations, it won’t be), but giving back some of what you take away will help your care recipient maintain her dignity and independence. For instance, you feel that it’s just too much for your mother to continue hosting Thanksgiving dinner every year. Your mother reluctantly relents to having the celebration at your house. As you plan for the day, try to incorporate some of your mother’s traditions in the celebration: her favorite recipes, her special dishes, her most honored prayer. While your mother may miss hosting the tradition at her home, she’ll feel that some of her house is at yours. |
What home health care agencies in your area offer quality, affordable home care? What housing options are available: retirement communities, assisted living centers? Contact community organizations to request brochures and pamphlets.
In addition, consider your aging relative’s current living condition. Will your aging relative be able to reside safely in her home if she uses a wheelchair, becomes bedbound? What changes can you make today that will prevent future barriers to providing care in her home? Or, are the necessary changes almost an impossibility? If so, what other options do you have: your home, an assisted living facility, a retirement community?
And, if you are working (or your spouse is), check with your employer about Work/Life benefits and an Employee Assistance Program. These benefits will be useful to you as you look for help and as you struggle with your own emotional well-being.
You can search for providers here: SeniorClix.org.
4. Begin discussions with your aging relative about his or her wishes.
Asking questions now about your relative’s care preferences will help you provide the care your relative wants. Where does your relative want to die? At home? At a care facility? What type of funeral would your relative want? Does your relative have a preference as to whom in the family provides care? How does your relative feel about end-of-life care decisions?
Although you may not be able to meet all your relative’s wishes, you can begin to plan now to meet at least the most important.
5. Determine the current health care providers.
Who are the physicians, what is the diagnosis? In addition, learn about medications and why the medications have been prescribed.
6. Concentrate on the reality of the situations.
Keep a realistic view of their situations: What’s the worst that could happen? What’s the best possible outcome? Then, determine what options are available for each of these outcomes.
7. Start a journal; chronicle your feelings, your concerns and your actions.
You may be surprised at your feelings of loss. Your preparation of the future allows you to see what your care recipient–and you–might lose. You both will experience changes in your relationship, your schedules, your amount of freedom. Write down your thoughts about the potential losses–and how you might be able to hang on to them, through minor adjustments and changes, for a little longer.
8. Organize forms and documents that you’ll need in the future.
You can find free forms to download to help you get started here: SeniorClix.org.
http://www.caregiving.com/the-caregiving-years/stage-1-the-expectant-caregiver/
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