Aricept's arid reception
By MP on Monday 4 September 2006, 13:45 - Journal - Permalink
I received a call from Patrice at the Sydney Home Nursing Service (SHNS) this morning. It seems my mother has been causing trouble again.
Ostensibly the call was to discuss the efficacy of the Aricept treatment my mother has been receiving. Patrice told me that SHNS had been in touch with my mother's GP, Dr Patella, and that the doctor said that no improvement in my mother had been noted. I cannot understand this, as Dr Patella hasn't seen my mother since the treatment started. I said as much, and Patrice simply stated that she was only telling me what she had been told. Here we go again, multiple parties cutting across each other's path, and we'll all end up chasing each other's tails, I thought. I offered my opinion, which is that, though it is far from conclusive, I think my mother's speech has improved since the dosage has been raised to 10 mg.Patrice acknowledged my point of view, but then went on to say that perhaps the treatment ought to be stopped, particularly as my mother had been violent on several occasions. Violent? This was news to me, too. The details were that over the weekend mum had hit one of the nurses over the head with the packet of tablets. While hardly decorous, I didn't feel this behaviour was too alarming. Patrice didn't cite any evidence of other violent incidents, so I presume it is the only one. I offered my opinion on this too, which is that I think it is highly unlikely that my mother would be enraged to the extent of hitting someone if all they'd done was gently offer her a pill. Patrice, to her credit, agreed, and said that perhaps some of the nurses who did not know mum well were a little too forceful in manner. Nevertheless, she still pressed for me to agree to dropping the treatment - or at least that is how the conversation felt. She did mention that if they continued under these conditions, the service would have to send two nurses.
Now I had all the facts it was time for me to say what I wanted to happen, which was this:
- continue the treatment - with only one nurse
- do not force the medicine on my mother
- continue to review the treatment's effectiveness
I mentioned that since the nurses are bound to visit the house to administer dad's pill, I cannot see why a gentle suggestion that my mother also take one couldn't be made. Patrice agreed, though I have the feeling that this issue is not going to go away. Despite my constant advice, the probability of an overforceful approach by a nurse eliciting an angry reaction from my mother remains, I would guess, quite high. And when that happens SHNS is going to harden in its position, and refuse to administer the medicine. At that point we will have to decide whether the improvement we currently perceive is real, and whether intermittent administration of Aricept on the occasions that Greg or I are there is advisable.
It seems nothing is ever simple in Alzheimer's land.
Post script: One of Patrice's colleagues called later, saying that SHNS were now legally bound to send two nurses. I said this was asking for trouble, and asked if it would not be better to just offer the pill rather than insist on it. After a long discussion of the history and pros and cons, she said she would ask her head office if this could be done. We also agreed that after three more weeks we would review progress and decide whether then to continue with the treatment. My guess is that SHNS head office is unlikely to depart from policy, two nurses will now attend, the manner of administration will not change, my mother will get angry on her bad days, and the minimal improvement we have seen will be outweighed by all the unnecessary strife. We'll see. Better to be a pleasantly surprised pessimist than a disappointed optimist.

Comments
Whoa, man! This is so familiar to me: The definition of "trouble" being when social services (including medical services) aren't served (when they're supposed to be serving). The funny thing is, the angrier your mother becomes, the more I like her. Not that anger is always admirable: Certainly, unfocused, free-ranging anger that hasn't figured itself out can be dangerous and tragic. But, while I may be wrong, your mother's anger, while likely "freed" by Alzheimer's (as was my aunt's) seems neither unfocused nor free-ranging; she appears to be fighting what she considers a threat, and the threat may not be the pill. Even when she gets angry with your Dad, I don't sense that her anger is isolated from what she perceives to be "the situation". I am, of course, making this observation from halfway around the world. A pity that SHNS, being so much closer than me, has trouble being other-oriented. You'd think that being other-oriented would be a part of their "mission".
No advice, really. I know what it's like to both stick to my guns and give in when it comes to the social service of medicine, and, a few others as well. Ahhh, Mike. Just that. Ahhh, Mike.
Gail Rae
You're right. My mum doesn't get mad for no reason at all. She is always mad about something particular, even if she's wrong (like when she accused my dad of wearing her clothes). Even the nurses, even the ones that have that 'right, let's get the job done now!' attitude seem to understand that her anger is reactive rather than endogenous, they just don't seem to be able to modulate their behaviour accordingly - so something else (eg, the patient, the treatment) has to change to suit them.
While I'm on the subject. Every time I see a mission statement or vision statement attached to the literature of one of the social services I inwardly despair. Did they really need a brainstorming session to figure out what they ought to be doing?
Mike--There have been so many times during the past year when I have been glad to be thickheaded and stubborn. These qualities can come in handy when dealing with the caregiving bureaucracy. I remember a visiting nurse who used to sit right next to my mother and STILL refer to her in the third person. Unacceptable!! I don't know how strongly to counsel you to fight back because I'm not sure what your back-up plan will be if SHNS refuses to administer the med to your Mom. My only suggestion is--is Namenda available in Australia? My mother couldn't take Aricept and was given a related drug--Namenda (Memantine, I think)--which is for moderate to severe AD. She's done pretty well on it. Maybe that's an option for your Mom?