7 things to do after a dementia diagnosis
by Marissa Steingold
Your mom got lost at the shopping mall, misplaced her wallet and called you in a panic. Her house looks disorganized, and you notice unpaid bills on the kitchen counter. Something is off.
You arrange for a doctor’s visit, confirming your worst suspicion: your mom has Alzheimer’s disease.
What to do next?
Alzheimer’s is the most common type of dementia, responsible for 60-80% of cases. Due to this progressive disease, your mom will gradually lose the ability to live independently, recognize family members, and accomplish basic tasks. But for now, she might be in relatively good shape, and there’s no telling how long each stage will last. So how do you prepare for the future—financially, logistically and emotionally?
Expect to feel all kinds of emotions, ranging from confusion to grief. Please allow yourself to mourn your loss, even if it feels odd to grieve while a person is still alive.
The heartbreak is unavoidable, but it may comfort you to prepare for the future. Here are some tasks to focus on today:
1. Get your ducks in a row.
Some people are superstitious about planning for death or incapacitation in advance, but avoidance won’t delay the reality of dementia. By preparing paperwork and logistics now, you will have more time to concentrate on your loved one’s well-being when the time does come. Dementia sufferers typically struggle to locate paperwork, so it’s also a good plan to collect these items while the patient can still help.
Documents to collect:
-marriage, divorce and birth certificates
-last will and testament
-social security number
-home deed/mortgage info
-power of attorney papers
2. Archive Memories.
Archiving biographical information about your loved one might be enjoyable for you and your mom. Write down or record reveries, family tree information and anything else future generations might want to know. Typically, Alzheimer’s patients lose short term memory before long term, so your mother will probably retain childhood for some time. Dementia sufferers don’t always remember facts accurately, but you are also documenting your mom’s outlook, humor and spin on things. If she wants to talk, do your best to listen!
3. Tell People
You have the right to privacy, so you don’t have to tell others about your loved one’s diagnosis. But telling people can prove beneficial. For example, if there is a new baby in the family, let the new parents know about your mother’s diagnosis so they can visit now, while your mom might still appreciate the encounter. Neighbors and friends can also look out for your mom if alerted to her condition.
Perhaps you’re feeling uncertain about telling others, so remember that your mom hasn’t “gone crazy” or misbehaved; she has a medical disease. Dementia isn’t anyone’s fault.
4. Plan logistics
How should the patient’s life be set up now…and later? Discuss at length with the entire family. This is not a one-size-fits-all decision, since each patient is unique.
In an ideal world, all dementia patients would live out their final days in their own homes, enjoying their favorite activities, surrounded by the people they love. But this disease is challenging. Not every home is safe for those with advanced dementia, and many patients require professional caregivers. If things don’t end up going according to plan, give yourself some alternatives. Sometimes a little trial and error is needed when navigating these turbulent waters. There’s no rulebook here.
5. Research local resources.
Lots of resources exist for seniors and family members. Don’t be shy about taking advantage of services funded by your tax dollars. Here are some topics to consider:
-Meals on wheels. Check with your county, or your local chapter of the Alzheimer’s Association (als.org). You may be eligible for free or low-cost meals or other services. (See https://www.mealsonwheelsamerica.org/find-meals)
-Adult day care centers. Local day care centers offer earlier-stage dementia sufferers an opportunity to socialize with other seniors and participate in cognitively appropriate activities. Not only does this give patients somewhere to go, but it affords caregivers flex time as well.
-Transportation. It’s common sense that dementia sufferers should not drive, but patients often balk at the loss of independence. This affects everyone on the road, so be tough! Don’t wait for something tragic to happen.
At a certain point, riding a public bus (alone) also becomes problematic for dementia sufferers. Fortunately, many communities provide free or low-cost rides to seniors. Find out what’s available in your neighborhood.
-Caregivers. Interview professional caregivers and/or discuss whether a family member could care for the patient. If an unpaid family member assumes full responsibility, make sure that person has backup and regular breaks.
-Memory care living facilities. Get recommendations from friends, and tour local memory care living facilities. Even if you decide against a home now, you might change your mind later. Many facilities have a waiting list, so plan early.
6. If your loved one is still living at home, begin the process of safeguarding the house.
Look for tripping hazards, such as throw rugs, and consider safety measures like shower seats and bathroom bars. If stairs are an issue, perhaps the patient could move to a first-floor bedroom. Attempt to declutter, organize and streamline the home, which may enable your loved one to remain there longer.
7. Take care of yourself.
You might feel guilty worrying about your own life when your loved one is suffering from this disease, but your feelings and health are important too. Keep up your doctor’s visits, in addition to the patient’s. Look for local or online support groups for caregivers and family members, and lean on others. This is a lengthy disease, so you will need whatever long term support you can get.
Remember that you’re doing the best you can for your loved one. Be kind to yourself.