I can't tell you how many times I heard that statement from the adult children of a dementia patient struggling with the issue of whether Mom actually had dementia or not. The behaviors were already there -- the constant anxiety about insignificant things that had progressed into paranoia, the constant nattering chatter that no longer had any censor on it at all or, conversely, the tendency to be depressed that had progressed into a complete withdrawal from the world. And now that I live in close proximity to someone who exhibits these characteristics I understand more fully the underlying question: if these obvious signs of dysfunctional behavior were there all along to a lesser extent is this really dementia? And if it is dementia were they always suffering from dementia? As a Family Consultant it led me to question what dementia actually is. And what, if anything, could have been done about it from a behavioral point of view?
There have been multiple studies that have correlated the incidence of Alzheimer's Disease with a much higher then average incidence of depression or excessive anxiety earlier in life. There is also fairly conclusive evidence that people who stay happily actively engaged in life and who use their minds more regularly are more likely to keep their ability to function -- even with the supposedly tell-tale indicators of Alzheimer's Disease that are used to give a more precise "diagnosis" after death. The famous Alzheimer's Disease Nun study is a good place to learn more about that. I was fairly convinced as a Family Consultant that something could have been done, should have been done, but the "what" eluded me then, continues to confuse me now.
On what level is one allowed to confront a family member with the news that not only are they driving everyone around them crazy, in a very literal sense they might be driving themselves crazy, too?!!! Well, I don't have an obvious answer to that -- and when it's progressed too far, it's in many cases too late!
Perhaps that's why I'm sharing this with you right now. I don't have to do this. I no longer get paid to write these things. But maybe, just maybe, if this message is put out there well enough and often enough by people who do care the idea will get across. Having a happy healthy attitude makes for a better life. Cultivate yours. Help your friends cultivate theirs. And do what you can in your family of origin, too.
Showing posts with label choice. Show all posts
Showing posts with label choice. Show all posts
Monday, March 8, 2010
Thursday, August 21, 2008
How Do You Perceive Your Caregiving Role?
An excerpt from The Spiritual Journey of Family Caregiving:
On the assessment form we use to judge a caregiver's level of stress, there's a section about how the person perceives his or her caregiving role. As that section is written, I find it fairly useless for my purposes as a family consultant but it occurred to me the other day that the topic in general is actually quite significant. You see, how a person thinks of themselves in relationship to family caregiving determines how they interpret what happens in that experience and, subsequently, how they respond.
For example, when you think about your caregiving situation, do you think of yourself as a prisoner? If so, your patient or the other family members you think cast you into this role must look like jailers. Within such a perspective every additional caregiving task becomes a symbol of oppression, family interactions become battlegrounds, and caregiving is nothing more than a nightmare to somehow survive.
But what would happen if you changed your perspective? I've met other caregivers who thought of their caregiving as a mission from God. One person even told me that he believed his life was saved from a near fatal heart attack so he could come back and provide assistance for his wife. For him, every new caregiving task was further evidence of how important and needed he was and provided him with yet another opportunity to show his love and devotion. He was proud of his mission and was doing everything he could -- including calling me for respite assistance -- so he could do God's work and be of service to his wife until the day she died. What a contrast!
Most people I meet fall somewhere in the middle of these two ends of the spectrum and many change their perspectives from day to day depending on how they feel or how well their own needs are being met. It's become really clear to me that I can't work with a caregiver well unless I know what mindset they are living in.
My greatest joy as a family consultant is when I can help a person step outside of a life-limiting perspective and choose a more empowering approach. Nobody has to be a prisoner -- on some level caregiving is always a choice. When someone feels like a prisoner it's because they don't want to face the consequences of breaking out of jail. Someone will be mad at them or they might feel guilty if they back away from the job, they might have to put their relative into a nursing home or use resources to pay for in-home care the caregiver was hoping to keep for themselves. There's always something the person doesn't want to face. . . but it's always a choice!
Very often, there isn't anything a caregiver really wants to do to change their situations when they consider the alternatives but they can always change their point of view. "I'm not a prisoner --I chose this life and if I want to change it, I'll just face what I don't want to face and do it !"
On the assessment form we use to judge a caregiver's level of stress, there's a section about how the person perceives his or her caregiving role. As that section is written, I find it fairly useless for my purposes as a family consultant but it occurred to me the other day that the topic in general is actually quite significant. You see, how a person thinks of themselves in relationship to family caregiving determines how they interpret what happens in that experience and, subsequently, how they respond.
For example, when you think about your caregiving situation, do you think of yourself as a prisoner? If so, your patient or the other family members you think cast you into this role must look like jailers. Within such a perspective every additional caregiving task becomes a symbol of oppression, family interactions become battlegrounds, and caregiving is nothing more than a nightmare to somehow survive.
But what would happen if you changed your perspective? I've met other caregivers who thought of their caregiving as a mission from God. One person even told me that he believed his life was saved from a near fatal heart attack so he could come back and provide assistance for his wife. For him, every new caregiving task was further evidence of how important and needed he was and provided him with yet another opportunity to show his love and devotion. He was proud of his mission and was doing everything he could -- including calling me for respite assistance -- so he could do God's work and be of service to his wife until the day she died. What a contrast!
Most people I meet fall somewhere in the middle of these two ends of the spectrum and many change their perspectives from day to day depending on how they feel or how well their own needs are being met. It's become really clear to me that I can't work with a caregiver well unless I know what mindset they are living in.
My greatest joy as a family consultant is when I can help a person step outside of a life-limiting perspective and choose a more empowering approach. Nobody has to be a prisoner -- on some level caregiving is always a choice. When someone feels like a prisoner it's because they don't want to face the consequences of breaking out of jail. Someone will be mad at them or they might feel guilty if they back away from the job, they might have to put their relative into a nursing home or use resources to pay for in-home care the caregiver was hoping to keep for themselves. There's always something the person doesn't want to face. . . but it's always a choice!
Very often, there isn't anything a caregiver really wants to do to change their situations when they consider the alternatives but they can always change their point of view. "I'm not a prisoner --I chose this life and if I want to change it, I'll just face what I don't want to face and do it !"
Tuesday, August 5, 2008
Give Yourself to Love
"Give yourself to love
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf
My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.
I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!
Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).
What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.
This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.
If love is what you're after.
Open up your hearts to
The tears and laughter.
Give yourself to love,
Give yourself to love."
--Kate Wolf
My clients have been teaching me some important life lessons. While I consider my job to be about helping people learn to set limits and boundaries so they can take care of themselves better, I've recently had a spate of caregivers tell me the importance of risking it all for a cause you believe in. When the universe sends me the same message over and over I sit up and take notice, so when three caregivers in a row told me about how important it was for them to have made family caregiving the center of their lives despite the toll it took I decided it was time to write about that.
I sometimes have clients who are literally killing themselves to keep loved ones at home. I beg and plead with them to get some rest, to take time off, to let more people help and they refuse. One person explained it to me like this: "I made a commitment to my husband to see him through this time in his life and, by God, I'm going to be there!" Another recounted the story of how her concerned children actually slipped her a sleeping pill without her knowledge to make her get some rest while they watched her husband. Something happened when she was asleep that she wasn't able to be there for and she has resented the interference ever since. She wanted to be there. It didn't matter that other people were there to take care of things for her -- this is what she wanted to do with this time of her life, period!
Many clients have told me how precious they consider the time they spent with their ailing loved ones to be. It's hard, almost unbelievably challenging, and yet something they would not have missed for the world. The studies that worry me about family caregiving show that elderly caregivers over the age of 65 taking care of someone with dementia have a 60% higher mortality rate than elderly people who are not caregiving. However, the latest studies show that family caregivers in general (all ages, all kinds of illnesses) score higher on tests of physical and emotional well-being after their caregiving days are over than those people who have not done family caregiving. The emotional satisfaction and self-esteem that come from having seen a loved one through a difficult time of crisis and transition appear to far outweigh the negatives (if you survive).
What this information has meant for me as a caregiving consultant is that I am far more reluctant to tell a client that she "can't" do what she is trying to do. I still want my clients to take breaks, get other people involved and make taking care of themselves their highest priority because I want them to survive their caregiving experience and actually succeed at doing the best job as caregivers that they possibly can. But I also have to respect that sometimes love demands a person to make sacrifices that seem over the top to those of us who are not in similar situations. Caregivers put in superhuman efforts to keep their loved ones at home, parents stay up round the clock with sick children, lovers leave promising careers, family and friends to be with their beloveds. I, myself, still grieve the loss of having left my native New England to be with my husband, now ex-husband, in Santa Cruz. I grieve my losses but I don't regret the decision because when loving someone means so much you do what needs to be done and, no matter how it ends up, the loving was not in vain.
This was an excerpt from my book The Spiritual Journey of Family Caregiving. Buy it directly from me, autographed, for $14.95 plus shipping.
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