When I was caring for my mother, who had Alzheimer’s, I was told by many people that no two individuals will experience Alzheimer’s exactly the same way – that every situation is different.
I believe this is true. There is uniqueness in what every person with Alzheimer’s goes through. I also believe that there are many similarities in the disease across people, and that these similarities will be experienced by a person caring for someone with Alzheimer’s. These similarities of experience do not get talked about enough, however, to allow those caring for someone with the disease to understand that they are not alone in what they are going through. This is one attempt to talk about what is likely to be similar in the experience of a family member who is the primary caregiver for their loved one who has Alzheimer’s, or dementia.
What you will, or very likely will, experience:
1. When you are going through caring for a loved one with Alzheimer’s, it is so difficult, exhausting, and emotional.There is research that outlines why this is more the case for those caring for someone with Alzheimer’s, than for those caring for someone with another disease.
You may be lucky to be getting any sleep. If you do sleep, you likely wake up at the slightest noise and run to check on your loved one. Or if you have a bed alarm on her bed, which goes off in your room, when she moves or has an accident, you also go running to make sure she is safe or dry.
During the awake hours, your loved one needs you constantly. He does not have the ability to occupy his own time anymore. Even if he tries, you need to watch closely to make sure that he is safe. When you are trying to get some work done, she may sit in front of your desk watching you, and ask you if “you want to go out to play.”
At a certain stage, you cannot leave him or her alone at all. It is just not safe. She will not remember that you said you will be right back (or that you were even there ten minutes ago). She will get frightened, walk out of the house and wander away, usually trying to go “home” (to the house where they grew up). He may find the extra car keys and try to drive home.
In the cases when your loved one can no longer walk (for various reasons), you may be in physical pain in addition to being emotionally exhausted. If you need to “transfer” your loved one from bed to wheelchair to toilet to shower to back again, and you have no help, you will eventually have some physical strain. As a family caregiver (and not a professional one), you likelyhave not been trained about how to transfer a person in the easiest way and a way least likely to result in any personal physical trauma.
2. Every person with Alzheimer’s goes through the FAST (Functional Assessment Staging Test) stages. Medical professionals who use the stages for prognosis purposes tell you that they occur in order for every Alzheimer’s patient. The steps are never skipped.
While medical professionals are familiar with the FAST scale, it may not ever be mentioned to you. I found out about it only when it was time to have my mother admitted into the in-home hospice program. It is used by hospice professionals to determine if your loved one is ready for hospice care. And, they will reference the scale again and again in their evaluations of your loved one.
As shown in the FAST assessment, once a person is in stage 6, he or she loses the ability to perform the various activities of daily living (ADLs) fairly quickly, one after the other. Your loved one will need help dressing, bathing, and toileting. He or she will become incontinent, and will not understand what to do when this happens, perhaps trying to clean up on his own and making things worse. These things are part of the disease, beyond the control of your loved one. They are mentioned here only because they do not get talked about nearly enough, so perhaps family caregivers are unprepared when they happen.
3. While not every person with Alzheimer’s will wander, the majority do, and many are trying to “go home.” The Alzheimer’s Association notes that 6 in 10 people with dementia will wander. Ninety-four percent of people who wander are found within 1.5 miles of where they disappeared.
When your loved one says things like “I want to go home,” or “My mother needs me; I need to go home,” these are indications that she might be susceptible to wandering. Remember, your loved one really may have no idea whose home she is in (even when it is her own home). She may be remembering her childhood home and longing to be there again. She is likely frightened as she is with someone she cannot quite remember in a place she does not know.
As her caregiver, do everything you can in advance to prepare for this happening, and to keep your loved one safe. The Alzheimer’s Association website has many suggestions for how to prepare.
Just as importantly, make your loved one feel safe. Let him know through how you talk to him and what you do for him that even if he forgets who you are exactly, he knows he can trust you. He just feels it.
4. Your loved one will forget who you are, and will also get upset, angry, or frustrated. My mother certainly did forget who I was. Sometimes, she introduced me as her mother; other times, I was her sister. She asked me if I ever went with our dad (her dad) in his truck to sell chickens (like she did, and loved doing). She did not know I was her daughter. How could she? She did not realize that she ever had children, or grandchildren, or graduated high school, or got married.
Can you try to imagine?
It is a situation that cannot result in anything but anger, frustration, sadness, paranoia, or hysteria. Who are these strangers? What are they doing? Why won’t they take you home?
I was fortunate that my mother did not get angry very often. She was not physically or verbally abusive, as can be the case. She did get upset. She cried. She tried to get out of moving cars because she wanted to go home, and she was certain you were not going there. She was convinced that you were going to drive right into the water if you kept going!
Your loved one will forget who you are.
Your loved one will get upset, angry, or frustrated.
As difficult as these situations will be, you cannot take them personally. All of this is beyond your loved one’s control.
The only response that can be helpful in any way is empathy and love.