Here are those markers:

1) When family members are no longer sleeping: If the person with dementia is up every night between two and four, for example, keeping the caregiver awake and on high alert, you can only go on for so long. “When the primary caregiver is reaching the point of exhaustion and their own mental and physical well-being is compromised that’s a big tipping point for families. There’s no point in killing off everybody else because we’re trying to keep Joe at home.”

2) Incontinence: This too affects everyone’s quality of life. “Incontinence, particularly fecal incontinence, can be pervasive and unrelenting,” says Mary. “It usually means you tend not to go out anymore, you’re constantly doing laundry and at increased risk of dealing with infections. It’s so labour intensive.”

3) Accept the progression of the disease: The bottom line is you are going to see more and more impairment as time goes on and sadly it’s only going to get worse. “This is a disease of the brain, but the brain directs all the bodily functions. Ultimately all the organs and all the bodily functions are going to shut down – not all at once and not right away – but as those physical changes happen there will be a need for more medical and nursing care.”

And no one will have an advantage when that time comes, Mary emphasizes.

“You can be extremely wealthy, have tons of siblings with everybody living in the same city like you’re the Waltons and you’re all doing beautifully – but are you ready, able and willing to make caring for this person an absolute full-time job, and I mean 24-seven, which means your house will become a mini hospital with medical people coming and going around the clock and you’re managing them like a business?”

Dealing with dementia and making the long-term care decision is “probably the most difficult decision that any family will make,” says Mary. That’s why she encourages people to be kind and forgiving when the time comes and remember this:

“If we’re talking about nursing homes, we’re not ‘the bad family’. We’re not the family that’s giving up early. We’re not the family that’s abandoning our mother or father, or who can’t get their act together. You are the norm. No one family can manage this alone.”

 

Copyright 2017 ZoomerMedia Limited

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