Living on the edge

For some time now I have been wanting to bring to the attention of my readers the nature of my daily regimen, so they can understand the things that take place in my life on a regular basis, things that I regard as an impediment to the daily life that I would like to have and that I suspect most people would like to have.

The daily regimen that is listed below will help all of my readers to understand some of the difficulties that face both Leanne and myself a daily basis. This is why I have called this particular entry "Living on the edge".

I don't think it is possible for many people to realise how difficult it can be for one person to have to wake up out of a lovely nights sleep at 5 AM simply because that person's partner requires assistance with both the preparation and insertion of medication and food into a Peg tube.

It is equally difficult I suspect, for people to understand how difficult it is, to stay up every night until 11 PM and once again both prepare and assist with the delivery of medication and liquid food.

This may not mean full time daily care, it does however mean that a person's life is disrupted and generally unavailable on a full-time basis.

The daily regimen:

5 AM -- medicines inserted into Peg tube
-- food tube detached
-- feed pole and container removed

11 AM
-- medicines inserted into Peg tube

5 PM
--medicines inserted into Peg tube
-- food container attached to feed pole
-- food tube attached to Peg tube

9 PM
--food container detached from feed pole
-- new food container attached to feeding pole

11 PM
-- food tube detached
--medicines inserted into Peg tube
-- food tube reattached

There are of course some different medicines inserted into Peg tube at each of these times, some remain the same. Dosages are generally the same however there is permission provided to alter some of the dosages dependent on the level of pain in my right hand.

Generally the food supply going into the Peg tube ends at just after 5 AM and starts again at 5 PM. This is generally varied only on weekends when some additional food is provided to ensure that the adequate dosage recommended by the nutritionist has been provided.

Suffice it to say that this regimen is enough to eat into a normal "working day" to the point that no working day is really possible.

If the nature of work was such, that it could be done from home with the breaks required by these feeding and medication hiccups, as well as all of the work required to clean and maintain the equipment and of course to assist me, the patient, with daily chores that are required to be done, but which need both hands - everything from tying one's shoe laces to providing assistance with daily ablutions and so on.

We are extremely fortunate to have a workplace that permit carers leave. I have no idea how we would cope were it not for the kindness and understanding of the senior management in the institution in which she works.

Anyway enough of this exploration of the dark side of life.

The bright side of life these days is made up of the opportunities that we have to meet with friends and to enjoy their company in spite of the limitations of the daily regimen. It is these opportunities that I suspect keeps us both sane and able to continue with the daily grind that is imposed by the daily regimen.