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Daily Life

When you get the first diagnosis there will be a whole rush of emotions about how this is going to affect daily life.  One big thought may be, “How long have we got, and how should we use the available time?”  I guess in many cases you will not be given a time prediction and you are likely to be told that there are many levels of treatment available, so don’t give up.

As you begin to come to terms with the situation I hope you will get round to a position where you feel that life can continue largely as normal, and you will see what adjustments are necessary in the light of experience.  Don’t make any big decisions at the start of this journey - wait and see.

As time goes on, and depending on the side effects of the treatment you are having, you may well find that there are things your wife can no longer do around the home.  I found this quite tricky to handle, so pass on my experience here!

There will be some things which your wife is happy to hand over.  There came a point when she was happy with my suggestion that we get a professional gardener to take over the heavier work which she had done in the garden for many years.  On the other hand, my suggestion that we investigate an outside caterer for a dinner party at home was not well received.  In retrospect it became clear that there are some activities that she will not wish to admit she needed to hand over to another person, until she felt the time was right.

Most of us do not like to admit that we should not be driving the car; I was sure that there were times when the effects of treatment were such that her reactions were impaired.  I feel, for safety’s sake, this is one case where we have to insist on taking over.

My advice is to go slowly in suggesting that household activities should be handed over to another - try to wait until the suggestion is coming from her if you possibly can, as she does not want to feel that she is becoming useless, or an unnecessary burden when you already have extra things to do.

I was happy to carry the shopping, etc., and help with the heavier jobs in the house and garden, but I have always tried to leave the decision making - what to buy, what to plant - with her, so that she does not feel her responsibilities are being taken over.

Obviously we don’t want to give up more than we have to, or drop things sooner than necessary.  It is best to continue with outside interests as much as you can, particularly if you are both involved in helping other people.  That helps to keep your own problems in perspective, and gives you other things to think about that will take you out of yourselves to some degree.  In our case we were able to occupy ourselves with the work of our charity in Romania

We had (well-meaning) friends who would keep telling Abigail that she was doing too much.  This is most unhelpful advice!  She was an adult who had a functioning mind, and was capable of deciding for herself when to stop doing something - in fact she was in the best possible position to know her capabilities at any stage of the journey!  Not only is this advice insulting to the intelligence, but it also points towards giving up on life, and sitting at home looking at the wall.  We need the opposite - targets of things we want to achieve and future events to strive towards.

Try to set yourselves targets - places to visit, friends to see, birthday celebrations, etc.

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