Just an observation...I recall that there used to be periods of time in my life where I could have something called "fun". It might have been on a vacation, or during a period of time where all was particularly going well and I was engaged in some particular activity. I recall one summer we spent quite a bit of extended time at Decatur when the kids were young, and it was weeks of tennis, crabbing, good food and friends, playing "capture the flag" - without much of a care for things outside that bubble. That was definitely fun. Certainly with a growing family and work responsibilities and school and working on the spousal relationship there were stressful periods and hard periods, but usually we had something to look forward to that we knew would be a stress relief - a ski vacation or trip to Hawaii - a period of time when you could (even if artificially) pack your troubles away and enjoy life. In hindsight I can see that a lot of what I considered stresses back then were peanuts compared to today, and I should have been much more grateful for the everyday life we had and found more fun in that, rather than just waiting for a particular period of time like a vacation.
Today the situation is very different, and not in a good way. I don't think I've had any fun for a couple years now, since Meagan and I had a vacation in Hawaii in the Fall of '09. I've definitely had enjoyable moments - such as dinner with friends, a bike ride, going to a game with my boys - but it always comes with the backdrop of the disease and Meagan's condition. It's like a little cloud of doom that follows you everywhere. You can't really get it out of your head. That, coupled with the added burden of being the caregiver, the family emotional rock, the kid supporter, the information liaison, the researcher, etc. puts you in a state that pretty much precludes "fun" being a part of one's life. And there is no end in sight for that changing. I know I should be grateful for the privileged life we lead, compared to so many others throughout the world who have wretched living conditions with no possibility of improvement. I know that at some point in the future, beyond what I can see today, our situation will change and likely "fun" will come back into my life.
I'm not morose about this, I have far bigger things to attend to. But it does give me pause and has caused me to reflect on how to at least find some measure of goodness in life. It really gets down to gratitude and appreciation for the positive things I have - friends and family who show their love and support. It's deeper than fun, and more meaningful and valuable. But I do miss the fun.
Showing posts with label what to say to caregivers. Show all posts
Showing posts with label what to say to caregivers. Show all posts
Thursday, September 22, 2011
Wednesday, September 7, 2011
The Caregiver Burden
Over the past number of months I have had the opportunity to talk with others who have caretaker roles for loved ones. The burdens and responsibilities vary, as do the circumstances and timeframes. We share some commonalities though. I thought I'd list some (not all) from my personal experience and communications.
1. Treatment decisions, especially if the person affected is incapable of making the decision on their own. It means you have to do the research, have the questions ready for the doctors, and then help the person affected understand as much as they can and make as much of the decision as they can. In many situations involving life ending diseases or natural end of life conditions - there are a number of options with different consequences. Balancing quality of life with treatment impacts is challenging. Especially because humans are remarkably resilient and can surprise with their ability to bounce back from dips. And the technology is evolving rapidly - end of life and cutting edge life extension treatments can be enormously expensive (thank goodness for insurance) - but not always available where you are - so travel to treatment facilities becomes a huge issue. Is it worth traveling to get treatment which might be quite debilitating but has a chance of meaningful life extension, but also has a larger chance of not working and you end up in your final days away from loved ones in a lousy condition?
2. Duration of condition - whether it's long-term (a marathon) or short-term (a sprint). The physical and mental toll of caring for someone over the long haul is huge. It becomes all consuming. It's hard to pace yourself, because you are responding to the crises de jour - which is largely outside your control. Adopting a long term mindset helps, as does building your own support network and not being afraid to reach out and ask others to help. But there are some tasks and support which cannot be outsourced and it is simply necessary to have the emotional capacity and endurance to weather it long term.
3. Logistics - appointments and treatments - scheduling, travel to and fro, emotional support before and after, medication administration. Certainly technology helps - having all this on my iPhone with alerts is invaluable. You can make the best of plans though, including ones for yourself, and then have things change rapidly, which sets off a cascade of changes to the appointment diary and logistics arrangements. You just have to be flexible and expect the unexpected. You also have to be prepared to wait a lot.
4. Lack of independence. Even though the person affected is now dependent on you, it works the other way. You are tied to that person and lack independence yourself. Between work and caregiving, that may be all the life you have. It can sorely test your relationship and you can start to feel resentful. That's when its good to reflect that the person did not do this intentionally, that you are in the best position to provide the support you are giving, and that your sacrifice (which indeed it is) is the best gift you can offer your loved one.
5. Communication to others. It is quite challenging to navigate the relationship network about who the person affected wants to see versus who wants to see them. Deciding who communicates about the state of the disease and progression - and how much, while respecting the inherent dignity and needs of the person to make their own choices as they are able. Further - what if there are differences in how it is presented or understood between you and your loved one? You are not just balancing communication of facts, you are balancing emotional support and motivation.
6. Playing social secretary. It's not just about scheduling and helping the person while they figure out who to see and when. It's about making sure all the elements are considered - like need for downtime and rest. And capabilities versus desires. It's also about communicating with people who have their own agenda, and buffering the affected person. It's a thankless task and one you can get falsely blamed for gatekeeping or screening. But you have to suck it up so as not to burden the loved one.
7. Arranging in advance additional supportive care when the need comes to that point - either in home care, in home hospice or in a supportive care facility. Figuring out end of life considerations that the person might want if they haven't expressed that need previously - such as burial or cremation preferences and arrangements. How do you do the research without the other person thinking it's a foregone conclusion? (One answer - do the research on line before they wake up...and make the calls when they are in treatment or napping).
8. Making sure all administrative details are taken care of - will, medical care directives, power of attorney, discussion about Death with Dignity (legal in the State of Washington). Bringing up the issue is stressful, as are the conversations. You have to be ready to have the conversation at an appropriate moment and then memorialize it.
9. Taking care of yourself. Find an outlet for emotional expression. Therapy or close friends helps. Expect a lack of sleep due to worry and schedules being thrown off. It's important to find the time to exercise (even twenty minutes of in-home yoga, stretching and calisthenics works - even if you were a former gym rat or exercise junkie. You have to get over the notion that it's all or nothing - either I go to the yoga class or I don't. You do what you can when you can - get up and move) and eat well (get off sugar and white carbs). Avoid the temptation to get by long term on coffee and pastries or energy bars. Get a team to support you.
10. Trying to maintain life and the household as it was before. Let the little things slide. There is a temptation to try to keep other things as normal as possible while your life is upside down. Let the mess happen, it's unimportant in the scheme of things.
I realize there are lots more - but these strike me as large burdens. I have already written before about the huge emotional issues associated with the loss one has with the affected person - whether as spouse, parent, or other loved one. That is a burden unto itself - as you move from a co-equal, mutually reciprocal relationship to a caregiver relationship. And recognizing that the basis for the relationship changes because the person changes. This is perhaps the hardest burden of all.
1. Treatment decisions, especially if the person affected is incapable of making the decision on their own. It means you have to do the research, have the questions ready for the doctors, and then help the person affected understand as much as they can and make as much of the decision as they can. In many situations involving life ending diseases or natural end of life conditions - there are a number of options with different consequences. Balancing quality of life with treatment impacts is challenging. Especially because humans are remarkably resilient and can surprise with their ability to bounce back from dips. And the technology is evolving rapidly - end of life and cutting edge life extension treatments can be enormously expensive (thank goodness for insurance) - but not always available where you are - so travel to treatment facilities becomes a huge issue. Is it worth traveling to get treatment which might be quite debilitating but has a chance of meaningful life extension, but also has a larger chance of not working and you end up in your final days away from loved ones in a lousy condition?
2. Duration of condition - whether it's long-term (a marathon) or short-term (a sprint). The physical and mental toll of caring for someone over the long haul is huge. It becomes all consuming. It's hard to pace yourself, because you are responding to the crises de jour - which is largely outside your control. Adopting a long term mindset helps, as does building your own support network and not being afraid to reach out and ask others to help. But there are some tasks and support which cannot be outsourced and it is simply necessary to have the emotional capacity and endurance to weather it long term.
3. Logistics - appointments and treatments - scheduling, travel to and fro, emotional support before and after, medication administration. Certainly technology helps - having all this on my iPhone with alerts is invaluable. You can make the best of plans though, including ones for yourself, and then have things change rapidly, which sets off a cascade of changes to the appointment diary and logistics arrangements. You just have to be flexible and expect the unexpected. You also have to be prepared to wait a lot.
4. Lack of independence. Even though the person affected is now dependent on you, it works the other way. You are tied to that person and lack independence yourself. Between work and caregiving, that may be all the life you have. It can sorely test your relationship and you can start to feel resentful. That's when its good to reflect that the person did not do this intentionally, that you are in the best position to provide the support you are giving, and that your sacrifice (which indeed it is) is the best gift you can offer your loved one.
5. Communication to others. It is quite challenging to navigate the relationship network about who the person affected wants to see versus who wants to see them. Deciding who communicates about the state of the disease and progression - and how much, while respecting the inherent dignity and needs of the person to make their own choices as they are able. Further - what if there are differences in how it is presented or understood between you and your loved one? You are not just balancing communication of facts, you are balancing emotional support and motivation.
6. Playing social secretary. It's not just about scheduling and helping the person while they figure out who to see and when. It's about making sure all the elements are considered - like need for downtime and rest. And capabilities versus desires. It's also about communicating with people who have their own agenda, and buffering the affected person. It's a thankless task and one you can get falsely blamed for gatekeeping or screening. But you have to suck it up so as not to burden the loved one.
7. Arranging in advance additional supportive care when the need comes to that point - either in home care, in home hospice or in a supportive care facility. Figuring out end of life considerations that the person might want if they haven't expressed that need previously - such as burial or cremation preferences and arrangements. How do you do the research without the other person thinking it's a foregone conclusion? (One answer - do the research on line before they wake up...and make the calls when they are in treatment or napping).
8. Making sure all administrative details are taken care of - will, medical care directives, power of attorney, discussion about Death with Dignity (legal in the State of Washington). Bringing up the issue is stressful, as are the conversations. You have to be ready to have the conversation at an appropriate moment and then memorialize it.
9. Taking care of yourself. Find an outlet for emotional expression. Therapy or close friends helps. Expect a lack of sleep due to worry and schedules being thrown off. It's important to find the time to exercise (even twenty minutes of in-home yoga, stretching and calisthenics works - even if you were a former gym rat or exercise junkie. You have to get over the notion that it's all or nothing - either I go to the yoga class or I don't. You do what you can when you can - get up and move) and eat well (get off sugar and white carbs). Avoid the temptation to get by long term on coffee and pastries or energy bars. Get a team to support you.
10. Trying to maintain life and the household as it was before. Let the little things slide. There is a temptation to try to keep other things as normal as possible while your life is upside down. Let the mess happen, it's unimportant in the scheme of things.
I realize there are lots more - but these strike me as large burdens. I have already written before about the huge emotional issues associated with the loss one has with the affected person - whether as spouse, parent, or other loved one. That is a burden unto itself - as you move from a co-equal, mutually reciprocal relationship to a caregiver relationship. And recognizing that the basis for the relationship changes because the person changes. This is perhaps the hardest burden of all.
Tuesday, August 30, 2011
Guys: Part Deux
I've had the enormous good fortune to become friends with one of Meagan's oldest male friends. He responded to my earlier post about guys. I think his insight is brilliant and wanted to share it, with his permission.
I think we men are full of fear. Fear that comes in a variety of flavors.
Nick, you are a strong, extremely successful man. That's enough to deter most guys right there. What could we possibly offer that you couldn't supply yourself, and probably better than we could at our best? Who are we to offer insight? Perspective? Like it or not you are an alpha. To admit to ourselves that you require assistance . . . well, what does that mean for us? If you can be vulnerable, what chance have we?
Yes, I'm also convinced that we eventually turn any situation back on ourselves. That's not necessarily narcissistic. It's human. A survival trait.
There is also the fear, through our inability to 'fix' the situation for you, that we might make things worse.
There is the fear - a basic, primal, 'magical thinking' - that tells us that if we give voice and recognize the severity, the reality of what you are experiencing, that somehow we will also somehow be touched or bring illness into our lives.
There is the fear that if we talk, we will feel. And, among most men, feeling is weakness.
There is also the fear that we are interfering in an extremely personal time for all of you.
And we are afraid of a thousand other major and minor things that twist inside until all we can do is offer platitudes and change the subject.
Pretty interesting perspectives. Much to ponder here. What can I do to help my male friends and acquaintances feel safe asking questions (it's not necessary to offer advice)? What can I do to make them comfortable hearing about my feelings? Or is anything I do useless in the face of biology?
I don't mean to blast all my my male acquaintances and friends. I just think this is a very interesting issue and certainly one that I care about for individual and broader reasons.
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