I Really Don't Like Being a Carer

The title reflects what I feel today.  This post is a day later than normal because I was to tired to sit down and concentrate.  I'll go back to my last post which was last Tuesday and we were waiting for the the Blue Care RN to check up on Margaret and give her a shower.

The first thing that the RN noted was that Margaret was less "with it" than normal.  She was also peeing almost continuously which could mean that her mineral levels, especially Phosphorus and Sodium could have dropped which can cause confusion and dementia.  Margaret's latest blood test showed that these were normal and not the cause of her problems.  Anyway I made a decision to reduce Margaret's Frusimide from 200mg a day to 120 mg a day which meant that she took two 40 mg tablets less each day.

Margaret wasn't up to going out for lunch so she spent most of her time in bed and grumbled  about her sore knee which actually doesn't appear to have anything wrong with it.  I believe that there is something there giving her problems so I will check it with her GP this Thursday (tomorrow).  She has got more confused as the week went on.  I had bought a plant for Margaret and put it in a large pot in such a place that she could see it while lying down in her bed.  The trouble is that she can't remember its name and asks me several times a day, sometimes with only minutes between her queries.  The plant is an Hibiscus with pretty red flowers.

The Friday Blue Care RN noted that Margaret showed signs of Cyanosis around her lips and also thought that she could have blood oxygenation problems and said  that I should keep a watch on her.

Over the weekend we have had a lot of activity in our little street, only five houses in a cul-de-sac.  Our neighbour's daughter has spent her whole life dealing with a major deformity which stunted her growth and subjected her to numerous medical problems.  Now in her early twenties her kidneys had failed completely.  After a short stay in hospital she had come home to die.   On Saturday the Blue Care nurses were with her most of the day and her family came to visit.  She died on Monday afternoon.  This has upset Margaret and while she knows that C is dead and at rest she still thinks that she is suffering.  Luckily for C she died at home with her loving family.  Her mother has been her full time carer for all C's life.

Since then Margaret has become very difficult to care for.  She has started refusing to take her morning tablets and screaming at me when I try to persuade her to take them.  As these tablets include her steroids which are vital to keep her going because of her Adrenal Gland Failure  and tablets to combat possible strokes and heart failure it is essential that she takes them.

Margaret is spending more and more time in bed but on Monday night I had a major problem getting her to go to bed and it took forty five minutes to get her to take her bedtime tablets and settle at about 10.45pm  I went to bed a little later but at 12.30 am she came an woke me demanding paracetamol tablets for pain.  I am under instruction to limit her to eight per day and only two in any four hours so I had to say no.  This set of a tirade of abuse and screaming at me.  She continued through out the night even after I gave her some at 2.00 am nearly an hour early.  I think that I got less the an hour and a half sleep and was even too tired to get up and give Louis his morning walk.

Yesterday the Blue Care RN again commented on Margaret's condition and noticed that, following the reduction in Frusimide, her feet were beginning to swell and the was getting fluid built up in her chest.  She may have to go back to the higher dose even though she is still peeing almost continously.

Last night Margaret refused to go to bed so I left her tablets for her to take and went to bed, exhausted, at 10.00 pm.  Margaret took all her tablets including two paracetamol bur half an hout later woke me up asking for them.  She wouldn't believe me that she had had them and spent the rest of the night watching TV in her room with the volume up high and calling out to me that she couldn't sleep.  At about 3.00 am I gave her more painkillers but when I got up at 5.00 am to shower then take Louis out she began screaming at me again.  I had actually managed to sleep for a few hours between interruptions one of which was when she wheeled into my room and yelled, "It's alright for you, you can sleep!".

Now she is settled and quite calm.  This afternoon I go to my Computer Club meeting and hand her over to a carer from Blue Care for four hours.

Tomorrow we see her GP  and next Monday we go away for s few days .