The past five days have been incredibly hectic. I’ve spent hours and hours on the phone with my mother and my sister as we try to co-ordinate my father’s care. My mother’s shaky, naturally enough, and since she’s hard of hearing and terrified of what’s just happened, she’s having trouble understanding what the nurses are telling her. But the hospital will be holding a ‘Care Conference’ apparently involving a hospital social worker, the nurses, and other people involved in Dad’s care. Mom has asked me to go with her – something I’d been about to suggest anyway.
Yesterday I spent quite a while on the phone with the Alzheimer’s Society of Durham. What a terrific resource. (I know where my next charitable donation will be.) The lady I spoke with from Family Support, Brenda, spent at least an hour patiently talking to me and prepared a huge package of information for me to pick up. From what she’s included I can tell she really listened to everything I’d told her – there’s sheets on:
- Vascular Dementia – Dad’s condition;
- how to handle aggressive behaviour in dementia patients;
- a list of all the nursing homes in the area and how to choose one, what questions to ask, what to look for;
- information about Power of Attorney for Personal Care – thankfully Mum and Dad already had that looked after. Important note that I just discovered: there are three types of Power of Attorneys. Power of Attorney for Property gives your attorney (by this they don’t mean an actual lawyer but whoever you name to act on your behalf) the power to make decisions about your finances, home and possessions. PoA for Personal Care deals only with personal care decisions – treatment, housing, clothing, etc. Both are incredibly important legally or else strangers will make decisions about your spouse’s care, and you’ll have no access to their bank accounts or even their car or your home if it’s in that person’s name. That’s especially important if you’re reliant upon the other person’s pension/income. If you haven’t, GET IT! (Although there are some caveats about the property one – the person you give PoA to had better be reliable or they can sell your house from under you as soon as you sign the document even if you’re competent.)
- information about driving and dementia patients – do you know having a diagnosis of dementia does not automatically get your license suspended? Or that 25% of dementia patients continue to drive anyway, sometimes with the blessing of their caregiver. (Even though Dad was incredibly confused, was hardly able to walk, and was completely ‘out there’ Mum let him drive to the hospital because he would have refused to go otherwise!)
- a sheet for enrolling Dad in a Safely Home program – think of the programs where we fingerprint out kids and keep records of scars/birthmarks so if they ever go missing.It’s a similar type program where the person is registered with the Police so if they ever go missing a type of Elder Amber Alert is put out across Ontario.
- information on all the Support Groups and services in the area; websites to check out; a brochure on what the Alzheimer Society can help you with, how to care for someone with Alzheimers, and how to care for the caregiver – which is equally important
- a sheet on a Family Caregiver Education Series. There are two workshops coming up I’ve enrolled in, one where a lawyer discusses the legal considerations when someone has dementia, and an accountant that discusses tax credits and Government of Canada revenue programs, claiming expenses, deductions for caregivers …
- and probably most important a sheaf of papers about how to advocate for the patient, advising you to record everything. I’ve already found this helpful – noting down not only who you’ve spoken to but when and what they said they’d do and when it would be done, what you’ve agreed to do, etc. There’s so much going on, that it’s so easy for things to get lost in a shuffle.
One thing the lady I spoke with yesterday said I was really lucky that my family all agreed with the way to proceed, that my sister and I were in accord. Unfortunately, some families face a bitter struggle when there are disagreements that can tear the family apart. Let’s just hope that tentative accord holds.