When Your Loved One is Diagnosed With Dementia
I’m so sorry you are having to deal with this. Take some comfort in knowing that you are one of millions of caregivers that were thrust into this caregiver role with no training and no financial compensation. It’s critical for you to focus on self-care as you navigate this journey.
Be sure your loved one is diagnosed and treated by a dementia medical specialist. Many of these practices offer lots of resources for caregivers.
Be sure you speak to your loved one’s primary doctor to make sure s/he doesn’t have a Urinary Tract Infection (UTI) which can cause confusion and changes in behavior. Also go over the medications that s/he is taking to make sure there are no drug interactions that might be causing changes in behavior or cognition.
Be aware that Medicare does not pay for long term assisted living or memory care. This results in a potential for very expensive care care down the road as the disease progresses and independence is lost. Once this happens, there are few options for families living with dementia. Conversations with elder care attorneys and/or senior financial advisors can guide you through the process.
These few options include:
The primary caregiver will need to quit his or her job to become a full-time caregiver which is really not sustainable as the condition declines
Hire outside help for the home
Transition to Assisted Living or Memory Care
You should research Home Health Care agencies in your area so you know what’s available when the need inevitably arises. While your loved one may not need that level of care now, it’s good to know what’s available in your community and how much that care costs. A home companion is acceptable. A nurse is not necessary. Most Home Health agencies have a minimum of 4 hours per visit. Call your local hospital for agency referrals.
Reach out to your local county Agency on Aging for resources. Ask them about availability of senior resources. Also ask them about helping you apply for Medicaid for your loved one if resources for care are minimal. You can call Medicaid directly to see about eligibility. Ask Medicaid if he might be eligible for a Medicare Savings Program (MSP). Ask about Medicare and Medicaid Services -at 866-232-4528 or 844-757-3047.
Call your local County for Social Services for the same purpose as noted above.
Call your local energy provider and see if your loved is eligible for any energy relief.
Older adults with low income may be able to get free home weatherization services through the Weatherization Assistance Program (WAP).
Free legal advice: freelegaltuneup.org
carewell.com - online shop for caregivers.
If your loved one is a Veteran:
Veteran’s Crisis Hotline - 800-273-8255
Veteran’s Services -800- 827-1000; ask about any resources; ask about the Veteran’s Aid and Attendance Pension program.
Patriot Angels - www.patriotangels.com; charge a fee for service; offers eligible wartime vets money for long term care.
If your loved one was in the Army, s/he may be eligible for assistance through the Army Emergency Relief Fund:
https://www.armyemergencyrelief.org/assistance
Explore ElderCareMatters.com
www.samaritansfeet.org/seniors - shoes for needy adults.
Reach out to the Alzheimers Foundation of America @ 866-232-8484.
Call the Alzheimer’s Association 24/7 hotline at 800-272-3900
Sign up to receive caring.com emails. Offers great senior and caregiver info.
Research if there are any memory cafes in your community. Do they provide transportation?
Research local churches or senior centers that might offer resources.
Urgent Care on Demand App - Urgent Care in your home.
CompassionateCallers.com - a group that will call your loved one to make sure all is well.
Dementia is a family affair. The responsibilities are way too much for one caregiver to deal with. It can be so stressful that the primary caregiver often dies before the patient. It is critical for caregivers to focus on their own physical and mental health. Attempt to involve appropriate family and friends in the caregiving journey. Assign them what you need them to do. If they can’t donate dollars towards physical care, they can still make phone calls, do research, make appointments, talk to the pharmacy, do grocery shopping, transportation, etc.
Employees covered under the federal Family & Medical Leave Act may be able to take up to 12 weeks of unpaid leave a year to care for relatives. Talk to your HR office about this.
Research your loved ones monthly income so you know exactly what the resources are and can budget for same. You may want to have your loved one’s home assessed by a realtor so you know what it’s worth in case you need the asset for future full time care.
Have the Stop Driving conversation with the family. Get your loved one’s primary doctor, trusted clergy or attorney onboard. Figure in the annual out-of-pocket expenses of the car when you work on a budget.
No matter what the outcome, you should not feel guilty! You must participate in self care. Taking care of your loved one is a very loving and noble act. But this is not your sole responsibility. Don’t let others take advantage of /or abuse you in your caregiver role. Be assertive in what YOU need as a caregiver in order to do this successfully while maintaining your emotional and physical well-being.
