[Magdalen] Rant

[sally.davies at gmail.com]

Amen.

Jim, you know this but just to reaffirm: these frustrating behaviours are
not Marcy's free and personal expressions of her self, but are part of the
disease process of ALS. As I understand it, as many as 50% of people with
ALS experience changes in thinking and behaviour, just more evidence if any
were needed of its capacity to steal and destroy.

So - the problem is not with Marcy, but rather with care aides who lack the
knowledge, skill and training to deal effectively with the situation. Could
your local MND association or support group help you find caregivers with a
better understanding of nursing, specifically with patients who expess
irritability and even aggression as part of their illness? Or perhaps offer
training to the caregivers you have so that they have more insight and feel
less disabled in the face of ALS?

Patients with neurone loss from whatever cause (fronto-temporal demential,
Alzheimer's, chronic mental illness etc etc) may all be found in this
situation and these other disorders are relatively common... so to my way
of thinking it is essential that professional caregivers are trained and
guided in order to respond appropriately and to provide the service they're
paid for.

It is very difficult, yet sacred work...maybe Jay or Brud Jon could chime
in with some better-informed wisdom on that subject?

Sally D
On Wed, 25 Feb 2015 at 06:47 Brian Reid <reid at mejac.palo-alto.ca.us> wrote:

> Jim, all of us are amazed at the strength and patience and love that you
> have brought to this. We admire you and we pray for you. Just a little
> harder after hearing this.
>
>
>
> > Dealing with Marcy's disease is hard enough on its own. Last night, her
> G-tube pulled out and I ended up taking her to Northside ER.  She was
> admitted and a new G-tube was inserted this morning.
> >
> > After a night of very little sleep for either of us, she started ranting
> about another home care aide who now says she doesn't want to return. This
> is the fifth aide she has driven off. It's hard enough to deal with this
> goddamned disease without having to do battle with Marcy as well. I'm very
> discouraged tonight.
> >
> > Jim Handsfield
> > Sent from my iPad
> >
>