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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/
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