I saw this comment on an Instagram post recently from someone who’s been caring for an elderly loved one who has dementia.
It’s a cruel disease, and is often referred to as “the long goodbye”. Caregivers, family members and friends must bear witness over time to the loss of the person they once knew. The unpredictable speed and way in which dementia progresses are major parts of the stress and overwhelm felt by family and friends alike. Seeing your loved one change in their abilities and often their behaviour, is tough, especially with the role reversal that happens as your loved one’s capacity to care for themselves declines.
You also have to be mindful of how you are feeling about your role; understanding that it will shift and/or intensify as time goes on.
There are so many moving pieces to this challenge, and while you can’t plan for every possible situation that might come up, the more proactive you can be, the better. This may well include difficult conversations with your loved ones, but they are necessary, as well as being a fraction of the difficulty, stress and overwhelm of trying to manage their care when they are no longer able to communicate their wishes further down the road. Add possible push-back from other family members – especially those who are not involved in the day-to-day care decisions – and you can have the makings of a breakdown of relationships within a family struggling to cope.
Finding the information and resources you need can be daunting. What questions do you ask? In what priority order, and to whom?
The best place to start on the healthcare side of things is with their GP. The pre-requisite here is that you have to be assigned in your loved one’s Representation Agreement (RA), which gives you legal authority to make these sorts of decisions in partnership with their healthcare service providers. If you have established yourself over time as a responsible advocate in your love one’s care, a Representative Agreement may not be required.
Getting as best informed about the particular issues central to your loved one’s care goes beyond just their healthcare needs. If you do have Power of Attorney (POA) in addition to the RA designation for making healthcare decisions and managing their day-to-day needs, you’ll be involved in their financial and legal matters, and needing to be informed of best future housing options available when the time comes.
Ideally, if you are the caregiver, having been assigned to either one, or both, of these documents makes life a bit easier with decision-making, especially if a situation comes up where you need to respond quickly. If another family member has POA, it may take more time for decisions to be implemented if they’re not available or, as sometimes happens, there is disagreement as to how to proceed. If the caregiver and the POA are two different people, it’s critical that they work collaboratively to make the decisions that will provide timely and appropriate care.
There are good, reliable resources available in your community and on-line to help better inform you on the nature of dementia. While a sad reality, it will actually help you to understand the particulars; what type of dementia does your loved one have, how does is show itself, how it progresses, etc. Having some understanding on what, in general terms, you can expect allows you be a bit more proactive and plan issues around finances, legal matters, housing and what types of support will be needed. This is crucial in helping you gain a bit more confidence in your ability to make the necessary decisions for your loved one’s best care.
A great place to start is with the BC Alzheimer Society https://alzheimer.ca/bc/en. as they have a wealth of information.
Yes, gathering the information and finding the resources you need is no doubt something done with a heavy heart, but at the very least, you’ll have some peace of mind that the support you put in place from your efforts will make sure your loved will be provided with the quality of care they desire and deserve. You’ll have less balls to juggle and fewer fires to put out, and it will go far to better prepare you for what is to come.
Planning for your loved one’s future care will help free you up to live in and savour the moment. That’s all we ever really have, isn’t it?
And please remember to breathe.
© Nancy Glover | Aging With Grace www.AgingwithGrace.ca
Do you need help with taking care of your elderly?
Contact Nancy to inquire about a Caregiver Action Plan assessment where all aspects of care are reviewed in order to help families create a more dynamic and positive experience for the care of their loved ones.
If you wish to use this article in your own ezine or blog include this footer:
Nancy Glover, a healthy aging advocate, mentors extraordinary women and men who have stepped into the challenging role of caring for their elderly spouse or parent by managing their well-being in the later stages of life. Blending first-hand expertise with practical step by step systems to support the needs, goals, and desires of the elderly spouse or parent, Nancy helps caregivers maneuver the complex and often challenging role with supportive advocacy and resources that equally focus on everyone’s well-being. Learn more about her at www.agingwithgrace.ca and sign up to receive timely information and strategies to empower caregivers and families in transition.