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.

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