Expert: Mary Gordon - 2/22/2008

Question
Hi mary,

I wrote to you in Jan about my mother ( 78 years) who is in stage 7 she is incontinent and needs to be feed.  She is also immobile.  She is also suffering from parkinsons.  As previously mentioned there is no communication she is sleeping most of the time and when she is awake she stares vacantly ahead without blinking. Her muscles are quite rigid and she has a parkinsons tremor constantly I have noticed that when I try to massage her hands they cannot open without pain.  I mentioned this to the matron and she said that they had increased her sinemet for her parkinsons because when they tried to bathe and dress her she was screaming from the pain and her muscles were going into spasm.  I spoke with her doctor and she said she would put her on some pain relief starting with paracetamol.  The doctor said this is the starting point and the pain releif meds will get stronger if necessary after giving the paracetamol 2 weeks.  Should I ask for her to go on stronger pain relief from the outset.  I feel so helpless. The doctor said even though she has been in stage 7 for 3 years now her immune system and organs are strong and she could stay like this for quite a period of time.  The doctor also said that she is amazed that her body has become so stiff and rigid in a very short period of time.  She has noticed that change since Chritmas.  I know at this stage it is downing just being with my mother and since last writing to you I  am more able to do this but to see her in pain is breaking my heart and making me feel totally empty.  I never thought at the outset that this horrible disease could be so cruel we are now heading for our 12th year since diagnosis.  My mother in health was an amazing woman and in her illness she is still amazing.  It sounds totally strange but I feel priviliged to have come this Journey with her.  I am blessed to have her as my mother I just wish for her pain and suffering to end so she can fly free again.

Answer
It's terrible to watch anyone in pain and not be able to help. I also know how distressing this stage is, and how conflicted a person can feel about praying for the release of their loved one.

I'd ask the doctor why she wants to start with paramecetol (http://www.assistpainrelief.com/info/paracetamol/) As you can see from this link, its recommended for mild to moderate pain - and your poor mom's discomfort seems to be beyond that -more in the moderate to severe category.  If she really wants to give paramecetol it a try, why two whole weeks?  They'll know pretty quick if it's working - within a couple of days.

You have to be insistent with the doctor - you do not want your mum uncomfortable or in pain, and you want this attended to aggressively and immediately. There may be other drugs they can give her to help reduce her spasticity and rigidity beyond painkillers, and they can certainly be watching closely and going to a higher dosage or other painkiller within days if it appears not be working. After all at this point, she already has a terminal illness with her dementia, so its not as if there is worry about side effects or addiction. It must be extremely hard on her - its exhausting to endure chronic pain. The priority is that she be as peaceful, relaxed and comfortable as can be achieved, as fast as possible. Can you imagine them being so leisurely if she didn't have dementia?

Thinking of you.  Hang in there.

Mary G.