How to communicate with a parent who has Alzheimer'sWe’re back looking at families who did things the hard way with their elderly parents.
The first call was straightforward enough. Dad’s live-in caregiver was moving on and they’d found a retirement home suite – could I help them downsize and move in? Sure!
The move went well, condo staged, sold and emptied – bill paid thanks very much, the daughter drove back to her home in Montreal, case closed.
But no – six months later, another call – we’ve found a better place for Dad, can I help again? Of course! Another project, another bill for moving, packing, unpacking and set-up – once again, the china cabinet, book collections, bed linens and clothes, this time, in a snowstorm.
Summer arrives – another call! OK, time to sit down with this family to see what’s really going on.
What’s really going on here?
In fact, I had never met the dad – each visit, I had dealt with the adult daughter, while the dad was at the hotel with the son-in-law ‘for a day or two’. So this time, the dad, daughter and son-in-law were all there to meet me at Dad’s retirement home suite.
The dad was beautifully dressed, sitting quietly. When I approached to be introduced, he smiled, took my hand, and twisted it savagely, grinning and grunting as he saw me wincing in pain.
Gradually the true situation emerged – Dad had dementia, was non-verbal, acts out and was often violent. Several live-in caregivers had fled, and the previous retirement home had advised he’d have to leave.
Then earlier this week, the Executive Director of this home advised that they had a zero-tolerance policy for violence against staff, as well as a responsibility to keeping other residents safe. Once again, dad was being shown the door.
‘I don’t know why these places treat Dad so shabbily. For the money we pay, they should be able to handle him.’
Facing the root cause
I requested a meeting with the Director of Care to get the full picture.
Yes, Dad had a degree of dementia; he was on some medication but the staff doctor’s suggestion of mood-enhancing drugs was flatly declined by the family.
Yes, Dad’s violent behavior was undoubtedly caused by his extreme frustration at not being able to make himself understood.
Was this a hopeless case? Must he take the drugs? Need he look for a new residence? Maybe not.
We arranged to speak to Dad without his daughter being present. Did he want to move again – a head-shake for ‘no’. Was he happy? – another ‘no’. What would he like to have happen? Vigorous grunts and gestures.
OK, I think I see what’s wrong here. Dad may well have dementia, but he’s still ‘there’. Does he feel managed, talked down to, not listened to? Wild head-shakes of ‘yes’.
It took several meetings and mediations between family and staff, but eventually Dad was able to assert his own preferences, providing he was asked directly. Since his stroke, no one had listened to HIM; his well-meaning daughter had interpreted everything for him but with her own spin, so that his frustration made him explode.
Medication was not the answer, but help was available.
- We engaged a speech-language pathologist to better understand and work with his speech deficits. She set up a communication board, using symbols and emoticons that he could point to in order to express himself.
- We also worked with the family to really, really listen; to take the time to make eye contact, to consider the emotional context of the situation, and to avoid projecting their own version of what Dad had to say.
- The family was also connected with support groups for aphasia - the loss of speech that may result from stroke or other neurological trauma – to share and learn with others in the same situation.
Everyone needs a ‘best friend’
The Executive Director, however, remained firm – absolute zero tolerance for physical or mental abuse toward staff or other residents. Despite his best efforts, Dad still often resorted to frustration and the residence was unwilling to take any chances.
We suggested hiring a private caregiver to help Dad on a one-on-one basis. ‘Too expensive’, said the daughter. Did Dad want to move again? ‘No’! Did he want to try this idea? ‘Yes’!
Another six months has passed, three of which were a probationary period enforced by the residence. Dad is feeling less lonely, better understood and more in control of his life. His frustration still surfaces, but does not result in violence; more likely in a rueful smile and a shrug. He is participating more fully in activities with his ‘new best friend’ at his side.
So why was this approach successful?
- Recognizing the denial the family had been in, that repeated situations indicated a problem
- Acknowledging the lasting effects of a catastrophic event – in this case, stroke-induced aphasia
- Giving Dad back a sense of control after the ‘assault’ of the stroke and its effects
- Being willing to compromise with the residence for a successful outcome that respects and protects others – staff, residents, management
- Providing a ‘best friend’ to ease the loneliness and help Dad back into acceptable social behavior
I hope this topic was helpful. Next time, we’ll switch to family who had a more successful eldercare journey.
Have you had difficulty finding housing for your parent with Alzheimer's? How did you resolve the issue? Share your comments below.