The Importance of Being A Patient Advocate For Older Relatives

September 20th, 2011

It is amazing how long it has been since I posted. The summer has been very busy with building a patio (that we didn’t actually use) and then going away to my country of birth for a few weeks of family visiting. Now it is back to regular life and the daily grind.

While I was away, I had to deal with parental health issues. My mother is in her 70s and suffers from a heart defect that affects the flexibility of her heart. As a consequence, her heart doesn’t pump as efficiently and she has developed an enlarged heart to compensate. With this comes an increased risk of heart attack and stroke.

Unfortunately, where I am from, the medical system is still a bit behind the times in some ways. We certainly have access to excellent care if we can pay for it and if we have the connections to make sure it happens. On the other hand, little will happen if you don’t work out “an arrangment” to ensure adequate care and patient supervision. However, at the same time, being a patient advocate is considered stepping on the toes of the doctors as they know what is “best”.

Being that my mother has grown up in this patriarchal society with doctor’s in charge, she has not been one to question their judgement. I, on the other hand, have been defiant from birth and with my nursing education, am quite comfortable in telling doctors when their conclusions are flawed or at least questionable. Thus, when I found that doctors were recommending that my mother avoid physicial extertion of any sort, I decided it was time to talk to them.

They tried to explain to me that physical activity would put a strain on her heart that could be dangerous. They assumed that I was as uneducated as the nurses in my home country. They talked down to me and tried to cut off communications. When I was persistent and continued asking smart questions, they were eventually quite surprised that I was able to cite studies regarding the need for physical activity at some level.

Finally, I managed to get my point across and they conceded that she would do well to walk and to lose some weight. This was good news for my mother because it was a recommendation “coming from the doctor”. Although it took days and numerous doctor’s visits, I got my mother into a position where the doctor is actually helping her. I just wonder how many other older mothers and fathers receive substandard treatment and poor treatment recommendations because nobody is fighting for them.

While the situation here isn’t likely to be as bad as in other places in the world, its always important to be your own patient advocate and an advocate for your loved ones. That is the only way that you can ensure that proper health care is delivered. My husband and I have both agreed to be aggressive advocates for one another should the need arise. In the most likely event, that will be when we are older and more vulnerable.

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The Frustrations of Being Dependent on Others

July 18th, 2011

The summer has certainly been going way too fast. I have not written a post in quite some time with all the outdoor projects I have on the go that have been taking all my free time. I am originally from southern climates so when it gets hot outside, I have to take advantage of the weather before it cools down again in the fall.

This year, I started gardening, not because I have a green thumb or even wanted to learn gardening, but because our backyard was starting to look like jungle in some areas. We had weeds up to my waist and although I am not that tall, the weeds were still  was still rather high. Where ever the mower could go, we were in control, but those areas near the corners or near the fenced had been neglected.

Since moving into our house we had focused on painting, some renovations and other activities with the consequence being that our back yard was not cared for to the level required. In any case, I decided to clean things up and I was happy that I could tackle the work a bit at a time as I had energy and time. The work was under my control.

On the other hand however, the patio that we started two months ago has been quite the opposite. We had delays from the people who take away the dirt we had excavated. We had delays from the people who deliver the stone to put in the hole and we had delays from the people who deliver the patio stones. Meanwhile weekend after summer weekend has disappeared without us able to complete our patio or better still, use it.

This has been an exercise in frustration for me and more so for my husband who has been interacting with the people bringing us our supplies. So much time has been wasted because we needed to depend on others. Furthermore, now that the stones finally arrived and I have days off, I have been unable to make progress on my own because my hands just can’t take the weight of lifting the heavy patio stones. Again I am waiting on someone else.

Of course I am not blaming my husband. He has worked hard in the evenings on the patio. Its simply the frustration of having to depend on other people to get things done.

However, such is the life with rheumatoid arthritis. I really wish it weren’t because I am a take charge type. I like to work things from start to finish. You have to have this mindset to survive in the ICU arguing with doctors who sometimes think they know more about everything than the nurse does. You need to to keep patients as healthy as possible in precarious circumstances. But, some days your own body poops out on you and just won’t give you the energy you need. Some days you are stuck because you can’t do something as a result of the pain that would be involved. Some activities are just too hard on the fragile joints and you have to pass them along to others.

It is these days when I feel more humble and when I am glad that I my illness is not as severe as what others face. I can choose to fight the weeds and make my backyard pleasing to the eye. I can choose to help my husband build a patio. Or I can choose to take a day off and visit friends. I just can’t do everything and sometimes I need a hand. But, we all do at one point or another and that’s a not a bad thing.

I know I am not the only one facing such frustrations and being mindful of my limitations. What about you? Where do you find yourself held back and having to adapt?

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Too Fast Into the Swing of Things

May 26th, 2011

Now a number of weeks after our exotic travels, I have been getting back into my regular, sometimes boring life. Having observed an insufficient level of social interaction, I decided that building a patio would be a good idea. I managed to convince my husband that it is a good idea too. This is important because he will be doing most of the heavy lifting…

The idea of patio was not new for us. In fact we already have a patio. Except, its not very attractive. The prior owners of the house were extremely frugal (read cheap) and managed to scrounge about 4 different types of bricks to lay into the earth. The colors were pink, terra cotta, red and dark red. It wasn’t some beautifully executed mosaic either, just bricks embedded in the ground. I have considered the patio an eye sore for 3 years now.

So, my husband agreed to replace the patio despite his already having in-progress projects around the house that he would like to complete. We went to a aggregates company to find the stone to use for the patio. We got quotes for the stones and hints on construction. It was all getting very exciting.

Then we started working…

Of course the first task was to lift the existing bricks out of the ground. This was my husband’s job because my hands can’t take that amount of effort. This, of course, proved far more work as roots had grown through the holes in the brick binding them together into a big blanket of bricks. My job became separating the bricks. Even with tools this proved a lot of work.

Quickly my hands were so sore and we were making such slow progress that I was completely disheartened. My husband was sweating and straining to get the bricks out of the ground while I separated them. At some point, I just had to quit from the pain. My illness was once again putting a limit on me. My husband offered to continue and worked for another few hours. In the end, it didn’t look much different than when we had started.

All of this quickly reminded me of my limitations and the need to do my best to live within them. I had to remind myself that all things take time and that for some of us, such things can take a bit longer than for others. I also had to remind myself that we are sometimes dependent on others in ways we would really rather not be. We will get a patio, this year, but its going to take longer than I had imagined.

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The Benefits of Changing Pace

May 6th, 2011

Well, my husband and I just got back from a very long vacation last week. It was very relaxing not having the responsibilities of work and daily life. I was also very lucky that my RA was largely under control for the duration of the trip. This was good because we were in a 3rd world country and if things had gone bad, it could have resulted in an airlift home covered by our health insurance. That would have put a damper on the trip. But, we arrived home healthy in much the same state as we left though my husband seemed to have a mild but lingering case of diarrhea to overcome.

Though everything worked out well, seeing the poverty in another country does tend to make one think about what we take for granted at home. In particular, I am referring to health care and health coverage. Over the course of our trip we saw more than a few people whose poor health puts them at a significant disadvantage in such an environment. Whether it was the man with sandals on his hands dragging around legs that lacked muscle tone or the child with a cleft palate, it was plain to see the effects that poor access to health care can have on people. Except for our own poor, we are very lucky to have access to health services when we need them.

However, coming back, I am also reminded of the certainly selfish and sometimes ignorant mindsets that view access to healthcare as some sort of entitlement program that makes people dependent on their government. The view that everything is fine because “I am alright” points to the selfishness of our society in the face of suffering. My view is that if these individuals spent a day or a week in the shoes of someone with a chronic illness, their same selfish outlook would have them demanding that the government do something for them.

Don’t get me wrong however, I don’t think that healthcare is a right in the way that we have other rights. I have come to this view after caring for far too many self-destructive individuals in the ICU. I have seen the many thousands of dollars per day that are spent on these individuals who don’t even care about themselves. These are not the severe alcoholics living on the streets and trying to drown their depression in a bottle, but rather the drunk driver who still has something to lose and continues to hurt others in the process. Its the obese man whose wife begs him to take care of himself, but instead chooses to eat ribs and be an armchair quarterback with all his free time.

In my view, I see that health care should be a priviledge, but one that the government grants. It should be something that is ours to lose. For those fearing socialism, this differs from situations like in Canada where I understand from friends that all of society covers the costs of care for those who are sick. In Canada, tax payers have little ability to control the costs of their system because their health system doesn’t draw the line when people abuse their health. This represents the other end of the spectrum and is likely what provides ammunition to the conservative thinkers who shudder at the thought of such systems.

Its amazing what a little time away can do for critical thinking. Maybe it is time to send our elite at both ends of the political spectrum to live with the people in a 3rd world country to gain some perspective on the importance of health care. I certainly believe that we can do better than the systems in Canada, the UK and the US if we apply some critical thinking to how much health care is enough. We really need to understand the value of not denying coverage to those who need it and denying it to those who don’t appreciate it.

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Exerting Self Control Makes You Cranky

March 21st, 2011

Generally, nobody likes to be in a situation where they have to do something. We all like to feel that we can choose what we do. As a consequence, the whole idea of an obligation is generally not something we look forward to especially when we are the ones who are responsible to do it.

Granted, we all take on responsibilities voluntarily and are, in many cases, happy to do them. However, even these responsibilities can wear on us if they seem unrelenting. Thus, it is not all surprising that that a recent study on self-control lead by researchers at Northwestern University found that those who must exert such self-control tend to be more aggressive and irritable than those who do not.

While their study focused on people who were trying to manage their weight by exerting the self-control required of a diet, I suspect that the findings would also hold true for those with chronic illness. If you think about all that is required to maintain one’s health in spite of a chronic illness, there is actually a lot of discipline and self-control required.

This is especially the case amongst those with a constant need to take medications according to a fixed routine, those who require regular testing, those who need to get the appropriate amount of rest and those who must exercise just to maintain a basic quality of of life. This isn’t the discipline required to achieve some lofty or ambitious goals, it is simply an everyday requirement.

The reason that I raise this is because of the other results that the researchers found from this study. They discovered that people who were already exerting self control were the least likely to respond positively to any communications that suggested what they should be doing. This has significant implications ranging from the tone required in public service announcements related to health promotion as well as how are doctors talk to us.

This also rings true for me at a personal level when my husband tries to suggest that I should be doing something else in a particular area to look after myself in light of my RA. While he is definitely trying to be helpful, his message is going to be lost on me because I am already working at exerting the self control to manage my weight, my medications, my levels of sleep, etc, etc.

The research also tells me that I have be careful of not being dismissive when such messages are being sent my way. A rheumatologist or family physician who hasn’t been made aware of how this communication comes across could be telling me something of value that truly would help me, but I wouldn’t be as open as I should. I could say that we should all keep this in mind, but apparently that wouldn’t be very productive at all…

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