A diagnosis of dementia or Alzheimer’s is a life-changing event with long-term implications that are both frightening and overwhelming—and not just for the patient. Unfortunately, it’s a common problem among older adults: One in three people over the age of 65 die with a diagnosis of Alzheimer’s or dementia.
For the family, this diagnosis may change a lot in your lives, including careers, living arrangements and finances. It’s essential to face the immediate future before considering what will happen in the following months and years. How you, as a caregiver, adapt to your new situation will have a profound effect on how your loved one begins to deal with their illness.
What to do right away
After you find out your loved one has either Alzheimer’s or dementia, you’ll likely work through a lot of emotions. While it’s crucial to face these responses with an open mind and heart, you’ll have practical matters to take care of as well.
Come to terms with the diagnosis and start planning for the future
Your feelings – and your loved one’s – will be a roller-coaster ride for a while after the initial shock has worn off. Allow yourself and others, especially the person with the diagnosis, to express their feelings and be honest about feeling angry, sad, scared or confused, all of which are normal. Reach out to organizations like the Alzheimer’s Association for help to guide you through the early days of being diagnosed. If your loved one has dementia, make sure you understand what kind of dementia it is.
Make sure all legal and financial documents are in order
Nothing is more difficult for a family than the need to make life-ending or life-sustaining decisions for a loved one without any guidance from them. Have an honest discussion about the choices your family member wants if they become seriously ill and need treatment such as intubation, a feeding tube, or a blood transfusion to sustain their life. If no documents exist that cover these decisions, have them drawn up right away.
These documents include:
- A durable power of attorney: This allows the person named to use a power of attorney after the family member with Alzheimer’s or dementia can no longer make decisions. Power of attorney is used when a person can no longer manage their affairs.
- Advanced directive or health care power of attorney: This gives the assigned person power to make all medical decisions when your loved one no longer can make decisions, including doctors, long-term care, and what treatments will be administered. Most importantly, the advanced directive states what types of life support or life-extending treatments are requested.
- Standard will: This names the executor and beneficiaries of the loved one’s estate.
- A living will: This is the document that specifies what the person wants regarding extraordinary life-saving measures.
In addition to these essential documents, it may also be important to make guardianship assignments.
Gather all passwords and IDs for online accounts
Everyone has private online information, and most people don’t share their passwords. Now’s the time to make sure you have the correct information about logging in to your loved one’s accounts. Gathering this will save you hours of hunting, calling and emailing all types of websites, from social media to Social Security.
Passwords and IDs you’ll need include:
- Banks, including a mortgage company, investment account, and checking account
- Email accounts
- Subscription services like Netflix, Pandora, Amazon, etc.
- Car lease or payment account
- Life insurance information
- Medical portals
- Smartphones, computers and other electronic devices
What to do as a caregiver to prepare
If you’re already a caregiver, your job just got bigger. If you’re new to caregiving, your life is going to change—a lot. You need to prepare yourself – and take care of yourself – both emotionally and physically for what’s ahead.
Seeking out a support system beyond your family can be an excellent outlet for your concerns and fears without making you feel you’re burdening others in your family.
Dr. Madhavi Vemireddy founded Caretribe – a service-based company focusing on solutions for caregivers – with her husband, Dr. Jeff Jacques, and told Seasons:
“Join a support group. It helps to be connected with others who are going through the journey with you, but also, it’s good to find others who have been on the journey for a while. If you are struggling, ask for help.”
Taking care of yourself is your biggest priority
Your ability to take care of your loved one with Alzheimer’s or dementia will depend on you taking good care of yourself. You can’t be the kind and patient person your family member needs if you’re exhausted, eating the wrong foods, or not exercising. Taking care of yourself means asking for help when you need it, accepting help when it’s offered, and making sure to find some time to relax and be good to yourself every day.
Caring for a loved one with dementia or Alzheimer’s can be rewarding and change your perspective about many things. Be patient with yourself and your loved one. Understanding that these conditions are medical problems can help make the experience less emotionally draining. Accepting the challenge ahead and doing all you can to prepare for it in the early stages will make it easier for everyone involved.