When we first hear the diagnosis of Alzheimer’s, dementia, or any other chronic disability, it’s overwhelming and, for most of us, uncharted waters. I’ve created a list of what I’ve learned and what others have shared. Collective wisdom is a powerful tool.
First, let’s get this part out of the way:
Depression and anxiety are common in those who are newly diagnosed - bring this up with her doctor so she can be treated if needed.
Also, no surprise here, depression and anxiety are common in caregivers as well. Keep an open mind and speak to your doctor sooner rather than later; there is no shame in asking for help - it’s one of the bravest things you can do. The closest thing I can think of to form an analogy for how this feels is watching a car accident unfold in excruciatingly slow motion. The anxiety is a slow build but can become overwhelming at times because you have an idea of how it ends but no idea how bad it’s going to get. You are needed and loved - put your care first on the list.
Seek counseling for her and you, if needed, individually or together. A sympathetic and objective ear can help with sorting out feelings of anger, frustration, and fear.
Here's a great place to start thanks to my friends, Kathy and Amy:
Take pictures of everything and keep them in their own photo file on your phone and cloud storage: a list of current prescriptions and dosage amounts, your parent’s/spouse’s SS card, her driver’s license, Medicare card, insurance cards, DNR (do not resuscitate) order, advanced directive, etc. While they’re still driving include pictures of them, their car, car tag, and anything that would help to locate them should they become lost. This is a “so easy, why didn’t I think about it” tip that can prove to be invaluable.
Now, let’s get down to business.
What services will she be needing?
*Housekeeping/shopping/meal prep
*Home health
*Companion care - drop in to assist with laundry, shopping list, prescriptions
*Transportation - compile a list of friends who can help or, if she’s comfortable, Uber, Lyft, or other transportation services
*Begin using her pharmacy’s or health insurance’s mail order service if available
Paperwork
*Update her will
*Create a list of accounts, car insurance, life insurance, homeowners/renters insurance
*Obtain passwords to accounts (this can be touchy - at the least have the list in a known safe place that can be accessed by you only when needed).
*Create a list of all monthly bills and subscriptions
*Update or obtain a living will
*Put assets into a trust
*Research power of attorney - if she’s willing to do this now, it will be in place when it’s needed
*Medical power of attorney - this will give you and chosen family members the right to make medical decisions
Prior to obtaining a power of attorney, designate a beneficiary or beneficiaries to establish a TOD (transfer on death) registration on all non-retirement accounts to avoid probate.
In addition, do not put your name on her accounts due to liability issues. For example - if she were involved in an accident where she was at fault, the injured party’s suit could include your assets as well. The same applies to you - her assets could be at risk if you are involved in a lawsuit. There are several other reasons why and you can take a quick look at them here: Never add your child's name to your bank account, here's why .
If there are siblings or other living relatives interested in being involved with care, establish who will take care of what preferably with input from your parent or spouse.
If it’s an option, start looking into memory care/assisted living now to avoid a scramble later. If your family member isn’t a “flight risk” consider assisted living to keep them as socially engaged as they can be for as long as they can be.
If you’ll be going to doctor appointments with her (someone should accompany her), discuss what questions you and she would like to ask the doctor beforehand; you’ll want to make sure she feels included in the discussion. Direct the questions to her for as long as you can and, if and when needed, answer for her in a way that includes her even if it’s just reaching for her hand as you answer.
Keep a notebook dedicated to writing down what the doctor says and suggests and be sure to include the date of the visit and the particular health care provider and location. Keeping a current list of prescriptions here would be a good idea as well.
I’ve included a few links that I’ve found helpful:
A Caregiver's Guide: Financial Protection for Those With Alzheimer's - this is a helpful link that was sent to me from creditcards.com. It lists some great tips to help you keep your loved one’s identity and credit safe.
Healthcare.com's guide is in place to help you shop and compare thousands of healthcare plans including Medicare in an easy to understand, personalized platform . There are also dedicated state guides to help users find the best available options in their area.
David Solie's blog. There are many parts that can be a huge help. From the menu on the right side, you may find the caregiver mind maps helpful.