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Comfort verses Intellectual Capacities

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Posted 5/20/2008 1:44 AM (GMT 0)
I'm currently seriously ill and although I have most aspects of my life well planned, there is one left I'd like some advice on.  I'm terminal, but I don't know yet when I'l be closing the books, depends on many factors.

Some doctors want to make my last months/years/... as comfortable as possible, both from a practical point of view as well as from a medical point of view.  I'm surely going for the practical point of view (new seats, sofa's, TV, etc.) but it's the medical "comfort" that I don't trust.

I'm still working, and I want to keep doing so until I go.  But I fear some doctors might give me medication that will reduce my intellectual capacity and that's basicly the only thing I've left. I keep working, not only because I have my life planned according to military rules and regulations, but also because I promised my collegues I'd help them out right up till the end (that has become a sort of tradition in my line of work).

On the other hand, when the pain becomes too much as to become incapacitating, then I'll have to use some morepainkillers I suppose; otherwise my work will be wothless anyway.

ANy help here?

Posted 5/20/2008 1:52 AM (GMT 0)
Morgoth,
I'm so sorry to learn of the seriousness of your condition. Your courage in wanting to live your ife to the fullest is an example for us all, as we all are terminal, ultimately.

Do you have something equivalent to hospice in Belgium? The hospice philosophy, which I believe was created in Holland or England (not quite sure) is all about making someone as comfortable as possible, but losing as little functioning as possible. Are your doctors skilled in the best kind of pain management, to help titrate various medication levels, get creative, etc. to help you stay alert and mentally sharp for as long as possible? I think hospice physicians are. You may need very close monitoring with meds to make small changes, depending on your medical condition.

It might also help to look at your work and ask yourself what aspects could you continue doing even if you lose some sharpness, intellectual capacity? For many of us who have stopped working, the lack of mental clarity and lack of stamina play significant roles. At some point you will likely have to cut back, and possibly stop, but if you know some parts of the job you could keep doing, that might help you stay functional up until the end, or as close as possible.

It's none of my business, but is there also room in all this for family and/or friends?

I don't know if this helps, but hopefully others will add.

PaLady

Post Edited (PAlady) : 5/19/2008 7:55:29 PM (GMT-6)

Posted 5/20/2008 2:11 AM (GMT 0)
Thank you for your response.
1) I've never heard of hospice, maybe I did under a different name, I'll have it checked out.
2) My familiy and friends are kept as far away from my work as possible, company regulations. Three of my friends, who have all been cleared by the proper services, will become the executers of my last will and testament. Even then it is better they know as little as possible about my work and I'm sure security concurrs.
3) Re-arraging my day might indeed improve my health and my performance. Nice thinking!

Thanks a bundle.
Posted 5/20/2008 2:24 AM (GMT 0)
Morgoth:

First, I want to say how much I admire your grace and dignity in the face of serious illness. As PAlady said, we are all in some sense terminal, but there are those who live with their focus on the end of things and then those, like you, who live with their focus on the "right now." You remind me of my grandfather, who died of cancer. I should say he lived in spite of cancer, because he did LIVE right up until the last few weeks of his life. At that point, the cancer overtook him, and he was forced to take powerful medications to combat the pain. I am not wise enough to give you advice, but I wanted to tell you about my grandfather because I remember that his intellect was sharp even after he became confined to his bed. His doctors worked together with him (this was before hospice was really available where we lived) to find the best balance between pain relief and alertness.

I understand your desire to keep your head in the game. I think that if you have found doctors you feel you can trust and also if you have some trusted friends or family members whom you trust enough to act as advocates on your behalf, you will be able to retain control of your treatment.

I pray you will have many years before you get to that point and that your pain is being well controlled now as well.

Ry
Posted 5/20/2008 2:28 AM (GMT 0)
Morgoth:

You must have posted while I was writing, so I guess my comment about friends and family might not be an option. One thought... As you begin to consider exactly what parts of your work you want most to keep up (like PAlady suggested), perhaps you can spell out in writing with your doctors how that should look for you.
Posted 5/20/2008 2:50 AM (GMT 0)
Morgoth,
I guess I was a bit unclear. I was asking about friends and family in terms of closeness to you, not necessarily your work. In other words, is there anything/anyone else that's also important to you in all this other than your work?

If you do a search for Hospice, it will be easy to find books, etc. Davis Kessler is credible, as is Elisabeth Kubler-Ross, whose material was very foundational in the area of dying and death. She's been deceased for quite a few years, so there is more current material.

Particular for your purpose seems to be medical personnel who are superbly skilled in the area of pain management, especially as it relates to your particular illness and how it's likely to progress. A good pharmacist can also be important; in the U.S. we have some pharmacists who still make unique medications from scratch - they're called "compound pharmacists". They are thus able to make blends suited more precisely for a given individual, although this may be costly. I don't know what your finances are, or health care/pharmacy resources in Belguim. You may have to some research on your condition and see what state of the art pain control might be for you, and what functions you'll likely lose, but what you may retain. This can help you plan for realistic functioning in the future.

If I think of anything else I'll let you know.

PaLady
Posted 5/20/2008 6:15 PM (GMT 0)
Morgoth - I second those here who are complimenting your strength. I hope that when if I ever receive similar news that I can remain as strong as you.

From the sounds of things your job is similar to my fathers where a question about how his day was is a simple good/bad/ok and no details. His work is in the higher clearance area of the military to the point where each few years when his clearance is up for review we all endure security clearance checks of our own.

I admire you for continuing your work as long as possible, I also have an idea it is no where near as easy as it sounds to be.

I think PaLady's mention of rearranging your day has a great deal of merrit. Also her mention of your doctor's helping you combat medication side effects is a great idea as well.

A good pain doctor will be able to help you find medications that will allow you to remain mentally in the game, but will also alleviate your pain. Personally I have found that long acting pain medication - I'm taking Kadian, but also MS Contin, pain patches and the like - seem to not mess with your mental capacity as much as short acting medications. There are also options for things like muscle relaxers that are the same way, some will make you sleepy - others wont. Asking your doctor's to research medications, or knowing they already have is a great step.

The difference between my mental clarity now - versus when I was on Percocet and Soma - is quite large. about 20 minutes after taking a soma I was ready to be knocked out, and had a huge mental cloud. The percocet at times hit me so hard that I wasn't good at standing up. Now taking Kadian, and Baclofen my mind is clear as long as my pain isn't interfearing too much.

I hope that life gives you all you've hoped from it. I'm not sure about how your family may or may not play into things, but your focus right now is on work. If you are married or have children - please remember that while your job surely helps more people, your family is going to know that you love them too. If you have a family - remember to make time for them - and put some time with them in too.

Tammy
Posted 6/4/2008 10:44 PM (GMT 0)
Thank you all for your support and input.

Although hospice care exists here, the Company has decided against it as they often work with volunteers here. They'll provide me with extra staff to take care of the house, the garden, the cat, etc. I have two doctors on fullstandby who live in the same street. An ambulance is always on standby and private quarters have been reserved at the local hospital. Everything that humanly could be planned has been planned and taken care of.

My doctors are changing my medication. I will decrease other painkillers, but my Opium dose will be increased sevenfold as it is known I react very well to opium.

Also have a new daily schedule that is far less stressing than the previous ones. Have been trying this for more than a week now and it has done wonders.

Feeling much better these past days. Thanks.
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