The Patience and Planning if Alzheimer’s Disease
One of our clients at Miller Elder Law Firm, Dr. Curt DeGroff, has been caring for his mother for several years now since her diagnosis with Alzheimer’s disease. Even after a lifetime of loving relationships it has been extremely challenging for Dr. DeGroff, along with his wife and siblings, to help provide and find the best care possible for his mother.
He shares a practical, no nonsense roadmap for enduring one of the most difficult challenges a person may be confronted with, providing and coordinating caregiving for a loved one with dementia or Alzheimer’s Disease. The ability to establish a new normal for yourself and your loved one, knowing relationships and situations will never be the same, will allow you to work toward acceptance and a routine that works for everyone.
- Start a paper or electronic diary
- If your siblings live far away, document interactions via update emails to all your siblings (or perhaps only to those that agree to getting such updates)
2. Find a Geriatric medical team for your loved one who understand near end of life issues and decisions. Find a medical team with a:
- doctor who can balance the need for more medications and tests weighed against what the inevitable outcome will be.
- doctor who is not afraid to be on the leading edge of a home pain management plan rather than someone who requires a visit for every new episode.
- doctor who understands they can provide an important service to family caregivers by being the “bad guy” discussing with your loved one on each visit appropriate limitations (travel, financial management, need for assisted living or in-home care, etc).
- case manager who can help guide you through the processes of applying for community palliative care services (e.g. visiting nurses who work to minimize unnecessary doctor visits and hospital visits, in home psychiatric evaluation services, in home occupational and physical therapy resources, etc).
- case manager who can help guide you through the processes of applying for hospice care and help you understand the appropriate time for this.
- case manager who can help you find community resources for support groups, advocacy groups, etc.
- financial planning and estate planning (updating will, etc)
- declaring legal power of attorney
- declaring a medical surrogate or medical power of attorney
- assisted living facility or in home care if those are viable options
- nursing home if that is a viable option
- draft an Affidavit of Incapacity for your loved one’s doctor if needed and define financial protections it offers and does not offer.
- application for guardianship (or emergency guardianship) if needed
- opening a bank account with a small amount of money which your loved one has access to while considering limiting access to other bank accounts and investments for protection from themselves or financial predators.
- care at these facilities (even the best ones) requires a family member’s regular surveillance to make sure your loved one is getting the best care possible at that facility (from nursing care to cleaning services).
- regularly remind staff to document significant interactions that occur with your loved one.
- interact with the staff on a regular basis which often leads to them becoming more engaged with your loved one. And I’m sure they appreciate your thankfulness for what they do for your loved one.
- make sure your loved one’s doctors offices get regular reports from these facilities.
- ask if a pet is allowed. Pets can provide enormous comfort to a troubled mind.
- make a plan for when you are out of town and share it with the facility.