Alzheimer’s Disease is a degenerative progressive neurological disorder that destroys memory and cognitive skills. Over time, Alzheimer’s robs its victims of their ability to manage their personal affairs, be they interpersonal, financial, or medical. This time of change can be frightening for both patients and their loved ones.
Caring for someone with Alzheimer’s disease can be a full-time commitment. Adjusting to the new reality can be an emotional and physical burden. While it can seem like loved ones are facing this difficulty alone, they should know that resources exist to help those helping their family and friends with Alzheimer’s. While not comprehensive, this guide is meant to help.
Early Stage Alzheimer’s Disease
Alheimer’s patients can typically live independently during the early onset of Alzheimer’s disease. During this stage, patients can still make cognitive decisions, so it is important to make creating an incapacity plan first priority while their wishes and preferences can be clearly expressed. An incapacity plan allows a loved one to authorize a trusted individual to make important financial and health care decisions on his or her behalf.
Incapacity Plan
An incapacity plan usually includes the following three documents:
- Durable Power of Attorney: Durable power of attorney allows a patient to choose a trusted individual to serve as his or her “agent” or “attorney-in-fact.” This person has the authority to manage the patient’s financial and legal affairs within the limits specified by the document.
- Durable Power of Attorney for Healthcare: This document allows an Alzheimer’s patient to select a trusted individual to make medical decisions on his or her behalf in case the patient is unable.
- Living Will: A living will expresses a patient’s wishes concerning end of life care. It includes whether or not life support should be withdrawn in the case of a terminal illness. A living will is sometimes combined with the durable power of attorney and called an Advance Health Care Directive.
Estate Planning
Because Alzheimer’s Disease is so disruptive in the lives of patients and their families, a diagnosis is an appropriately major life change that warrants reassessing an estate plan. This includes the patient’s will, trusts, and other beneficiary designations. An attorney can help ensure that an Alzheimer’s patient’s estate plan reflects their wishes and financial and care plans.
Middle Stage Alzheimer’s Disease
The middle stage of Alzheimer’s Disease is usually the longest, lasting years in most cases. In this stage, patients and their loved ones adjust to a new reality, where basic care responsibilities like dressing, eating, and bathing require assistance. At this point, care becomes full-time and more hands-on. Confusion for both patient and loved ones sets in as the disease takes hold and realities shift.
This stage requires a lot of adjustment as roles are reversed: often children must now take care of their parents. This can be especially difficult when patients are resistant to or even suspicious of help. If you are taking care of a loved one with Alzheimer’s, remember that you are not alone. Roughly 15 million Americans provide care for their parents or loved ones struggling with the disease.
Routine
In the midst of confusion and frustration that accompanies the degenerative disease, one way to establish a form of security is to have a routine. A daily routine helps to reduce anxiety, agitation, and boredom for both patient and caregiver, and it can help relieve sleep problems. Keeping the sleep routine consistent and planning around it is key. Meal times should also follow a routine schedule.
While allowing for (sometimes extra) time for daily basics like getting ready for the day and using the restroom, fill in the day with things your loved one enjoys. The day does not need to be planned to the minute, but offer some designated activities to look forward to and focus on. These may include spending time with others, spending time outside, preparing food, working on creative projects, and quieting down with a book or movie.
Where feasible, delegating out care-taking responsibilities or days can help the emotional and physical strain of being constantly attendant. This variety can be stimulating to patients as well, as can having alternative activities if a day doesn’t go as planned.
Patience is Paramount
The emotional difficulty for both Alzheimer’s patients and their loved ones cannot be overstated. It is a fearful and life-altering diagnosis and process. That being said, depending on the progression of the disease, caregivers generally have more control. This adds the additional responsibility of recognizing both sides of a tense or difficult situation and de-escalating it.
For example, if a caregiver’s mother refuses to get in the car to go to a family function, he needs to consider his options. Though emotions may run high on both sides, he needs to decide if he is going to push the issue or if an alternative is better. Caregivers will need to pick their battles.
Late Stage Alzheimer’s Disease
The final stages of Alzheimer’s disease usually require patients to have around-the-clock medical care. Patients often lose the ability to talk or to walk unassisted. If the patient is not already in residential care, it may be the next step. Though the choice is difficult for both patients and loved ones, the health and safety of both parties must be considered.
