By: Gail Balfour
womenshealthmatters.ca
Within hours of her mother’s massive stroke, Caroline Tapp-McDougall’s life changed immeasurably.
Without any prior experience, warning or preparation, she found herself thrust into the role of a primary caregiver — a role she never expected.
‘My mother’s life had changed; my life had changed. Suddenly I was pushing a wheelchair, making all these medical and financial decisions,’ said Tapp-McDougall, author of The Complete Canadian Eldercare Guide and publisher of Solutions magazine.
‘Saying no was not an option — I was there and someone had to do it.’
This is a situation more and more people are finding themselves in — the majority of whom are women. According to Tapp-McDougall, the average age of a family caregiver is 46 and the average age of the recipient of care is 78.
On average, a person lives about 18 more years after retirement, and spends about seven of those years with some sort of disability.
‘The question is what that (disability) will be, and what kind of support system needs to be in place,’ she said during a presentation at the Women’s Health Matters Forum & Expo in Toronto. ‘It’s important to adjust your lifestyle and finances to cope with those years.’
Caregiving takes up an average of 35 hours per month, and requires an average of four hours of travel time (there and back) to be with elderly parents. Though caregivers can be all ages and backgrounds, ‘the need to cope and not collapse unites us.’
This distance and time spent away from doing other things in life is an immense source of stress, she said. ‘You are bombarded by issues with employers and family members.’
Often — as in her own case — snap decisions must be made in a time of crisis, despite the fact that in a stressful time, these choices are more difficult to make. There is no time to know all the options in order to make a rational assessment.
Obviously, this is not the best way to go about things, she said. A better situation would be to have early discussions with your loved ones and be prepared before something ever happens. Unfortunately this is never easy, but Tapp-McDougall offers some tips.
It’s important to take a no-nonsense, yet positive, approach and to not ‘be a bull in a china shop,’ she said. Respect your elders’ decision to continue to live at home, for example. Step back and give them some time.
There are five key areas you, as a potential caregiver, need to deal with, she said.
1. The Discussion
This step can be quite difficult because the caregiver is often the catalyst for action — suggesting the elder move into a nursing home, for example. Discussions like this can put a whole family at odds with one another. It’s important to be patient and think about the impact the suggestions will have.
- Prepare yourself to be open and honest — not argumentative
- Be ready to listen and hear what others have to say
- Do some homework ahead of time so you can answer knowledgeably
- Ask the elder’s advice
- Have the discussion early
- Understand what the options are
- Be gradual — don’t dump everything on them at once
- Know what you are prepared to put on the line
- Don’t let yourself be put on the spot
- Know your elder’s personality
2. Daily Living/Quality of Life
The home is where the loved one is going to want to stay, she said. Therefore, it’s important to figure out what that is going to cost and who is going to help.
Medication management is also something that needs to be addressed. She suggests brown-bagging the meds and bringing them to the pharmacy to find out exactly what they are taking and why.
Sometimes continuing to live in their home is not the best answer. Often, the loved one may be entering a ‘fragile period’ where they are more at risk than before.
There are stages to health decline to watch for, but they can be subtle.
‘You have to be a bit of a sleuth,’ she said. ‘Open their fridge — that will tell you a huge amount.’
If there is no food, or if the food is not being eaten or is mouldy and the milk has gone sour, that’s a good indication that they are not taking care of themselves as well as they should.
Tapp-McDougall offers these tips and warning signs to watch for in your loved one:
- Look at activity levels — are they still able to pursue hobbies?
- Grooming — have they had their hair cut recently, are their clothes clean?
- Bill payments may fall behind
- Watch for loss of appetite
‘Usually when someone is not doing so well, these things fall by the wayside.’
When living at home is no longer possible, it’s important to let your loved ones know they still have options. Involve them in the decision and go visit some nursing homes together.
‘Don’t shy away or be afraid of it,’ she advises. ‘And don’t feel guilty. Put that energy into providing care instead. Look what you can do daily, find creative ways to stay in touch.’
When buying equipment, look for quality accreditation and brand names. Get the advice of an occupational therapist and/or a registered nurse. Keep all receipts on file.
3. Finances
‘Some of us have a lot of money, but most of us don’t,’ she said. Therefore, it’s important to find out if you can pay for extra care, by getting an accurate assessment.
Think about ways to make things easier, such as automating bill payments. Too often, many elderly people are ‘still standing in line on a Friday with their pension cheques,’ she said.
Also, check their insurance coverage of home, auto, disability and long-term care. Another important thing to note is that many home insurance plans become void if a house sits empty for a certain length of time. So if your loved one has an extended stay in the hospital, their house may no longer be covered.
Educate yourself about which services your loved one may be covered for through the government and private companies. There are subsidies for many types of medical equipment, for example.
And there are other programs and services, such as Veteran’s Affairs, caregiver tax credits and disability credits, that offer substantial benefits.
These are very important to look into. There are many claims people can be eligible for, but these often go unsubmitted, she said, because the elderly person or their families may not be aware of their eligibilty for these programs. The person may end up spending thousands of dollars unecessarily.
4. Driving
One of the most difficult things to do is make someone realize that they can no longer drive safely. They will see it as a loss of freedom and independence.
One way to make it feel like they are involved in the decision is to encourage them to take a driving retest. If the loved one does poorly, he or she may come to terms with the outcome better.
It is also helpful to arrange alternate transportation for the person, so that they can see that they will still be able to get around.
In the worst-case scenario — when the person is at dire risk — you may have to seize or disable the car, or involve others in positions of authority, she said.
5. Organization
Keeping extensive records, having copies of everything at your disposal, and knowing exactly where they are kept is key in coping well in a crisis, she said.
Here are some of the things you will need on hand:
- Legal documents naming two people for power of attorney (one for finance and the other for health/personal care)
- Banking info
- Government health card
- An up-to-date will
- Other financial info
- Marriage certificate
- Pension info
- RRSP/RRIF info
- Mortgage documents
- Rental property info (if applicable)
- Birth certificate
- Social insurance number
- Passport
- Club memberships
- Contact info of relatives/friends
In conclusion, Tapp-McDougall offers some final advice. Get to know a lawyer before anything happens. Usually people don’t make this step ahead of time, she said.
Most importantly, get the help you need, whether it is from siblings, other relatives, friends or services. Don’t try to do it all yourself.
‘Burnout is a huge concern for caregivers. I have come to realise that I can’t worry about my loved one’s every meal, every bowel movement, all the time,’ she said.
‘Don’t lose sight of your own goals. Find the help you need.’
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