This is part three of a series that offers some helpful tips to avoid caregiver burnout when dealing with someone suffering with Alzheimer’s disease. Learning as much as possible about Alzheimer’s can help alleviate burnout and make life easier for you and the person afflicted with this disease. This part discusses realistic expectations and setting up a game plan. This is the final part of that series.
Not having a clear picture of your situation or the prognosis sets you up for rude awakenings or a lot of unnecessary struggle. Once you know what to expect, you can adjust your expectations accordingly. This process also makes it easier to accept his fate.
Learn as much as you can about Alzheimer’s and stay abreast of what to expect at different stages of the disease. Talk to others who’ve lived through the caregiving experience on message boards or in support groups. You’ll be better able to deal with what you’re going through and gain a peek at what could lie ahead.
You’ll learn from experience to be realistic about expectations for the person with Alzheimer’s. Keep outings with friends relatively brief and uncomplicated. Figure out what kinds of food, activities, music, and other daily routines work — and stick to them.
Be realistic, too, about your expectations for family members. Distant siblings may simply not be able to devote the same time to caregiving as those nearby, for example. Children may be disturbed or frightened by the changes in a grandparent and shouldn’t be expected to understand the disease and pursue the same kind of relationship as before.
A Game Plan
Alzheimer’s disease is progressive, which means that while the person with Alzheimer’s may stabilize for a long stretch of time, he’ll never recover lost abilities. He’ll only gradually worsen over time.
It’s one thing to understand the progression of the disease but a different matter to put a corresponding action plan in place. Having a plan makes the emotional transition easier and helps everyone understand the needs involved, financial and otherwise.
You may not be able to address every possibility, but you can start by researching what’s likely to happen when — and your corresponding options. Start by dividing your planning into stages:
- What needs to happen at this stage in terms of care?
- Who will provide care?
- Where will he live?
For example, soon after diagnosis you’ll need to arrange access to medical, legal, and financial records, as well as the transfer of decision-making authority to you, another family member, or a close friend. By the end stage, someone with Alzheimer’s needs round-the-clock care, and you can start to figure out where that would take place and by whom.
Start conversing with family members about these things now, even if they’re difficult. Get the input of the doctor, a geriatric care manager, and other professionals involved in her case. Knowing all about Alzheimer’s disease will save everyone time and help get things coordinated.