The team at Above and Beyond Home Health Care and Hospice has seen this with many of our clients, and medical research backs up our observations that there can be plenty of changes taking place in people as they approach the end of their life.
While every medical condition is unique and can cause changes to the mind and body, there are sometimes similar behaviors that are seen.
For instance, progressive forms of dementia such as Alzheimer’s disease can eventually lead to a lack of mental and physical activity and responses. Some aggressive cancers can eventually cause the body to shut down. Other neurological diseases can also cause body processes to slow down and eventually stop, often triggering everything else to stop too.
But different personality changes are sometimes seen.
In some cases, these can be expected due to the reality of their situation: no one wants to think about their death and them not being around anymore. But sometimes other emotional changes are observed.
This can sometimes be a challenge to caregivers, who may not be expecting these behaviors, including outbursts of anger from people who have usually been calm, or surprising and unusual statements from people who have had certain opinions and behaviors most of their life.
Some of the changes can be a consequence of what their brain and body are going through.
For instance, advanced dementia may cause physical, permanent damage to the brain. A loss of memory is one of the more noticeable changes, but advanced cases can alter parts of the brain that regulate things like conversation filters, so someone may begin saying things that they may have kept to themselves in the past. Brain damage from a stroke or a tumor can also change part of the brain to rewire itself.
One of the biggest influencers of personality at this time can be fear of the unknown, which can manifest itself in different emotions, including anger, sadness, impatience, and strong feelings.
There are all sorts of things they can fear, including the next few months, weeks, or days. Since they’ve never experienced death before, there’s no telling if it could be painful. There’s also the very human question of what if anything is next for their consciousness.
For much of their life, this may have been an abstract, perhaps theological question, but now it’s becoming real, and it might be a scary situation.
This fear can also turn into anger at their situation. They may not want to leave everything behind, including their family and friends. They may want more time or become mad at their body. Or they might be made at other people or situations.
They may be tired of the pain and feeling weaker and weaker, especially if they are dealing with a progressive disease that affects them physically.
Chronic pain also affects mood so someone may not be at their best. Or they could be on strong medications to counter the pain or reduce anxiety, which could also affect their personality, such as being generally sedated and mellow or fearful.
The body also may begin shutting down toward the end, and they may not be as hungry or as thirsty. What they talk about might be unusual as well since they may not have as much energy to hold a lucid conversation.
Help For Caregivers
Certainly, dealing with people in this situation can be challenging. Being a caregiver is always challenging at any stage. But people who may react differently, say unexpected things, or act differently than expected can add some layers of complexity.
This can be especially difficult if it’s someone you’ve known for a long time, such as a parent. Yes, you can celebrate Respect for Parents Day on Aug. 1 each year, which can be a good opportunity to learn about them and tell them you’ll be there for them in the future.
Even if you have a general idea of why their personalities are changing, it still can be concerning to live through it. In some cases, the person may not even know they feel differently or say things differently than usual.
In other situations, they may feel that there is something different that they’re feeling. Or they know how they feel, and they don’t feel good and want to take out their fear and anger on the caregiver.
In these situations, there are a variety of resources available for caregivers and clients.
There may be support groups in your area for caregivers to learn from each other and talk about strategies to help people stay calm at this time of their life.
Home health care employees may be able to discuss their experiences with clients or share some strategies for providing care but be aware of the possible changes.
They can also give info about programs like respite care when a trained caregiver can take your place for a few hours or a day. This can be a good opportunity for the caregiver to have a break, something that’s essential especially as a client progressively declines.