Staying Independent – “Help me help myself”
After being diagnosed with Alzheimer’s disease, how long can you remain independent? In the early stages of the disease many people are able to retain their independence fairly well and the mental health benefits of remaining self-reliant are huge. Attempt to keep active and engaged, and continue doing the things you enjoy.
At the same time, it’s best to educate those around you about the changes that will occur as the disease progresses. Educating people helps them help you remain more independent. Talk to your employer about ways to continue working, perhaps reducing your hours or responsibilities. Ensure your home is safe; check your home for ways to reduce the chances of a fall or a fire. Consider finding alternatives to driving; remember the disease impacts your judgment as well as physical abilities, so you will have to make unpleasant adjustments as the disease progresses. Use the Alzheimer’s Navigator tool to help with mapping out your long-term care strategy, and get your legal and financial matters in order; do it while you can be an active participant and decision-maker.
Ask people to help you continue to do things yourself. Maybe that means helping you prepare meals to freeze for your week ahead, taking you grocery shopping or mowing your lawn (while you pull weeds). Keep doing your usual chores as long as you can. Set up as much of your paperwork as possible on “automatic”, such as using direct deposit for social security checks and using “auto-pay” for monthly bills.
Sticking to a routine will help, and start implementing memory prompting strategies. Carry a notepad or diary that you use to jot down things you want to remember, and use that to retain address/phone information and your daily schedule. Label things and have step-by-step instructions written out and handy for appliances and other devices you may need to use. A large clock with a date display is helpful to keep you aware of the time and date. Label people’s names on photos as another helpful aid.
Organize your daily “path” through your home; you can place reflective tape or nightlights in high traffic areas to reduce the chance of confusion and falls. Keep all of your important items (wallet, cell phone, money, glasses, etc.) in a centralized place.
There are many “technology solutions” that are available such as medication reminders and “personal emergency response systems (PERS)”, devices you wear that can alert someone that you need help. GPS bracelets are available, and MedicAlert®and Alzheimer’s Association Safe Return® programs are helpful should you wander.
Living with the dread of becoming dependent isn’t easy. Be sure to share your feelings with your family and friends or get professional help. Join an Alzheimer’s “Early Stage” support group. There are also other helpful resources available on the “Just for the person with early stage Alzheimer’s” page on our website. Consider signing up the “Living with Alzheimer’s” education series, featuring 3 day interactive workshops (one for you and one for your caregiver, offered concurrently) that provide detailed information, tips and resources specifically relating to diagnosis and early stage challenges.
For caregivers, research has shown that caregivers often underestimate their loved one’s abilities, so be aware of this. There is a difference between doing things for your loved one and helping them do it for themselves. Continually gauge their abilities to do things, don’t make assumptions. Do things together as a team! Break up tasks into smaller, more manageable tasks. Have them help with household duties, even if the “perfectionist” in you might want to redo the task later.
Help set up memory prompting strategies. Write up instructions for AM and PM…not only to keep your loved one on a routine, but to remind them to check their door locks before going to bed and ensuring appliances are turned off, etc. Make sure your loved one’s home is “Alzheimer’s proof”, keeping in mind the changes to physical abilities and one’s sense of time and place. More light is needed at night, grab bars and other helpful equipment is readily available. Pets can become a tripping hazard.
Prepare a caregiving team calendar to ensure that there are regular check-ins and safety checks, and that important tasks (medication management) occur on schedule. Monitor accidents, increasing signs of confusion or anxiety levels, or signs that basic needs (bathing, dressing, meals) are not being handled, to determine when more care is required. And remember that while it may seem easier to just do things yourself, your loved one will greatly benefit from your just helping them do things for themselves, for as long as possible.
Blog written by Alzheimer’s Association Volunteer Diane Blum