Checking it twice.

The facet of dementia that has tripped me up more than any other is the sheer unpredictability of it.  You never know when you open the door or pick up the phone what you are going to find.  At this end of the disease the changes can be very rapid.  The stress lies in the uncertainty.  The challenge lies in coping effectively with the changes whilst remaining compassionate.

As with all very sick people, the thought of the looming festivities can make the disease worse, so, bearing last week’s posting in mind I was not terribly surprised when first my mother received visitors while she was in bed and subsequently became very aggressive.

There are two difficulties over the season that hold the key to getting through it without making the patient worse.  The first is controlling the visitors so they don’t arrive two days running.  This, of course, is impossible.  The weekend before Christmas my mother had three visits which was much too much.  It is unfair that the visitors in the middle who my mother received in bed were the ones who had checked with me to see if my mother was up to a visit and had rung her before.  The others were unarranged and the third was turned away by the carer.

Visiting people in the later stages of dementia is similar to visiting any one else with a terminal illness; pre-arranged is good, brief is better.  Lengthy and unannounced are really not advisable or kind.

So, tired out, it was fairly inevitable that my mother would become aggressive.  On Monday there was a tirade about the wicked carers who had been moving her clothes about without her permission.  I had checked back with the agency about the running order for carers, which they hadn’t finalised at the start of the month.  I feel sorry for the carers, doing shift work with my mother over Christmas.  I wanted to prepare my mother for two new people appearing briefly and one that she doesn’t like, who is being phased out, appearing twice.  When I rang with this news all hell broke out and in the end she slammed the phone down on me.  The second difficulty, also impossible, is managing my mother’s mood so that she, and everyone around her, can get through the day without sky high adrenaline.

So there went another sleepless night wondering how on earth I was going to talk her down.  She was threatening to expel the carer physically.  This would be a bad move as the community mental health nurse has stated that there is to be no more ejection of carers, my mother holding what I believe may be a record for the county of refusing seventeen carers.  As I’m sure you remember, I had an accident in the car back in the summer, rehearsing the Mental Health Act 1983, the first time we were in an imminent detention situation.  In the eighteenth century my mother would have been banged up with no delay and probably end up tearing her hair out in the middle of a Hogarth painting.  Whilst today our compassion and understanding of disease has grown, I do sometimes feel we have gone too far in the other direction, especially when I spend the night practising Acts of Parliament, in order  to explain them to my aggressive, ill mother, to stop her hurting people and keep her in her own home.  I tossed and turned and ground my teeth to razors and then used the resulting razors to grind down as many indigestion tablets as I could find while the acid bubbled up and down my Barrett’s oesophagus like a lava lamp.

So I nerved myself for the phone call this morning and the third day of rampant aggression against all the evil carers and for lo!  Nothing.  Nice as ninepence.

I am now hoping there will be no more exhausting visitors before Friday.  Being a lonely demented person is sometimes better than being an over-excited demented person.  Tomorrow we’re off for the usual midweek visit and I’m going to do the posh seafood dinner I used to do on Christmas eve.  My mother, who was insistent at first that I stay the night and do the dinner on Christmas eve, is now admitting that  a heavy dinner the night before the Christmas dinner the next day and twenty-four hour visitors would actually be too much for a sick person to manage and enjoy.

But I do look forward to a Christmas that I would like.  Four in a row dreadful is a bit much and I did so want to have a Christmas with my new granddaughter without having to fit her in briefly round my sick mother.  As I get up at crack of dawn to flee from the safety of here to the aggression of there I’ll be reminding myself that a lot of people will be spending the holiday as real refugees in war zones.

I hope we all have peace over the holidays, it’s the best present you can’t wrap.

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hohoho  ohohoh .com

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