Alzheimer’s disease can potentially disrupt and devastate a family. For many years I worked as a healthcare provider. On several occasions, I assisted patients diagnosed with Alzheimer’s.
I noticed that primary caregivers didn’t have much support outside their immediate households. Family members who lived elsewhere weren’t able to handle the complex situations. Even those within the home sometimes struggled to cope.
One time, I was assigned a patient who had progressed to the stage where she could no longer talk and wasn’t responsive to instructions. The caregiver asked me to bathe my patient. Her way of preparing me for what was to come was to say that she couldn’t help me with the task.
While assisting my patient with getting into the bathtub, she screamed for her life! That’s when I realized why the caregiver said she couldn’t help me. Once my patient was inside the tub, she stopped screaming and became calm.
Upon close observation, I discovered she was afraid to cross over the side of the bathtub. Perhaps a walk-in tub or shower could’ve given the caregiver a little relief.
At this point, you may want to know just what Alzheimer’s disease is.
What is Alzheimer’s Disease Anyway?
According to the Alzheimer’s Association, “Alzheimer’s is a type of dementia that affects memory, thinking, and behavior.” The organization also notes that the disease never improves but tends to intensify, affecting all aspects of one’s life. Although most Alzheimer’s patients are over 65, it can affect younger people.
Alzheimer’s has stages. Experts don’t seem to agree on the exact number. Some say there’s four stages, but others say seven. However, each expert’s description contains a variation of the 4 stages defined by Johns Hopkins Medicine:
- Preclinical– The brain is going through changes; no symptoms
- Mild– Symptoms are beginning to surface; not causing alarm
- Moderate– Symptoms are becoming noticeable; some help is needed
- Severe– Symptoms are intense; total dependence on others
Because Alzheimer’s is progressive, it starts mildly. For instance, a person may forget:
- Where they left their keys
- How to write a check
- What time an event is going to be held
As the disease advances, the symptoms begin to worsen. For example, an individual may not remember:
- How to get home
- Job functions
- When to take medication
- To turn off the stove
As the disease progresses and memory loss worsens, a person’s speech may become unclear or non-existent. The individual might forget how to walk and require a wheelchair.
The development of extreme mood and behavioral changes could also occur. Some individuals scream for various reasons, while others become aggressive and sometimes violent.
Once a person with Alzheimer’s reaches the point where they can no longer live safely and independently, a primary caregiver is up for consideration.
How Does Alzheimer’s Affect the Primary Caregiver?
As a primary caregiver, you are probably responsible for making all decisions for your family member. Your life might’ve been disrupted by ensuring that your loved one with Alzheimer’s receives proper care in whatever setting they’re in.
You may need to relocate to another city or state to perform your caregiver duties. If you’re taking your loved one into your home, tension could arise within your household.
Becoming a primary caregiver could also be problematic, especially if you are employed or have underaged children.
The CDC states that caring for a loved one with Alzheimer’s disease sometimes causes caregivers to experience mental health conditions like anxiety and depression.
Although it’s suggested that the responsibility of caring for a loved one with Alzheimer’s should be shared between able-bodied family members, that’s not always the case. There is the possibility that you may be left taking care of your loved one alone or with just your household.
You might complain about handling all the responsibilities, but that may not lead to any changes. Family criticism of the type of care being provided is not unheard of when a primary caregiver has all the responsibility.
Ultimately, you may need support so that you don’t burn out or become ill.
Does Your Family Need Alzheimer’s Support?
As a caregiver, you might not have a support system for yourself or your family and are unsure where or how to find one. You may also need respite and not know what’s available.
One place to start looking for a support group would be the Alzheimer’s Association. The organization offers virtual and in-person support groups across the country, and they have an online community.
WebMD also has a support and resources listing for the Alzheimer’s community. Their site contains resources for counseling and a list of organizations that will help caregivers.
For more information on Alzheimer’s disease, finding support, and locating respite sites, go ahead and check out the links in the article. Help is just a few clicks away!
