For years now I've been helping a loved one with Alzheimer's. My role as a caregiver has changed over time since I share the care with many others. I've learned a lot throughout this journey.
Alzheimer's is not a one-size-fits-all definition
Cognitive illnesses like Alzheimer's have some general similarities and many, many differences. Just by noting that an individual has Alzheimer's says very little about how the person presents. There's variation in this diagnosis with relation to the stage a person is in, temperament, physicality, interests, and more. In my situation, my loved one is tremendously positive, able-bodied, curious, and helpful. This makes him a joy to be with.
Alzheimer's and similar cognitive illnesses change over time
The changes related to these diseases can be slow to occur or dramatic. In my situation, the changes have been quite slow which makes those changes difficult to discern if you are with the individual often. If you haven't seen him in a while, the changes will be more dramatic. In general over time, it's the change from full independence to full dependence. As the changes occur, so do the requirements for care with respect to time and task.
Caregivers are impacted by personal philosophy, experience, and knowledge
Caregivers including physicians, therapists, family members, home health aids and more bring their own philosophy, experience, expertise, and knowledge to the situation. This may result in disagreements amongst caregivers. When disagreement ensues, it's important to think about how important each disagreement is. In many cases, what caregivers disagree about makes little difference to the individual with Alzheimer's quality of life or health, but in some cases, the disagreements may relate to significant care issues. As caregivers disagree, it's critical to choose your battles and as much as possible respect one another's opinions, needs, and capacity. It's always best if a caregiving team can work together with good communication.
Know what you can do and what your limits are
No caregiver can be or do all things. A caregiving team is essential when it comes to Alzheimer's and similar cognitive diseases. As you work with the caregiver team, know your abilities and limitations. As much as possible, play to your strengths in this regard.
Utilize the expertise that exists
There are many experts available to support this journey, and it's valuable to reach out to these experts to learn about your loved one's cognitive decline and how to deal with it. These experts include associations dedicated to Alzheimer's/dementia, physicians, personal care attendants and more.
Take care of yourself
As noted, no caregiver can be all or do all, and it's critical that caregivers identify their needs and do what they can to live a healthy, positive lifestyle themselves.
For many, the journey of Alzheimer's and cognitive decline is a long journey of multiple years, and it's important to travel this journey with as much love, respect for self and others, support, and good knowledge as possible. Onward.
