Denial: In the beginning, you start to notice things being a little off. This is a difficult stage because only someone close to the individual will pick on these oddities. Sometimes, this goes on for quite some time before someone other than you can start to recognize these changes. To tell the truth, this is when you get to pretend that everything is okay. You can make excuses for the behavior and attribute most of the incidences to age related decline. It really doesn’t matter how you handle this because people think you are overreacting or making things up.

Realization and Affirmation: This is when you finally realize that something is wrong. At this point you have a choice to make. Choice A- Make an appointment with a neurologist and start being proactive or Choice B- Stick your head in the sand and continue to pretend that everything is fine, and it is a normal part of aging. So, repeat step one denial.

Diagnosis: This stage is a total shit show from my perspective. There are several types of dementia. Call it Alzheimer’s or any of the other types of dementia, it doesn’t matter, they all suck the big one. This is when they prescribe a course of medication and tell your loved one to live as normally as possible, do things they enjoy and come back for a checkup in six weeks like this is no big deal.

Reality: Reality starts to set in when you return home from the appointment with the doctor. At first, you think the medicine will help and things will be wonderful. I am not knocking the medicine. It did help to delay the onset of some of the symptoms associated with the disease. Except, there is a giant flaw in this plan. The doctors and we as caregivers expect a dementia patient to remember to take medication at the same time each day. This is where insanity ensues, and the caregiver turns into a drug dealer for the patient. Caregivers count pills, order pills, pick up pills and hand out pills twice daily.

Anger: This is where it is okay to be angry. You can be mad at anyone over anything. You can cry because your loved one is slowly changing and slipping away or you as a caregiver can cry because your life got turned upside down and you didn’t have a choice in the matter. You can scream and stomp your feet and feel all the feels that you need to feel. You can even runaway and hide for a little while. However, once you have finished feeling all the emotions, you must get your act together and get on with the business with taking care of your loved one.

A New Normal: There is nothing normal about this disease. Just when you think you can manage what this terrible disease tries to throw your way, the ground falls out from under your feet. You do your best to make the correct decision for your loved one, but it is made difficult be the ever-evolving nature for this horrible beast called dementia.

Pity: This is where well-meaning people say things like; “I will pray for you,” “I just don’t know how you do it,” and the empty offer “Let us know if we can do anything.” As caregivers, we covet you prayers daily but mostly we need your support and understanding. We are not brave or super human. Caregivers just do what must be done. It would also be great if we could have five minutes alone or dinner out without having to worry about rushing back or finding a sitter to stay with our loved one.

Shooting from the Hip: There is no playbook, no manual to follow or guide to get a caregiver through this journey. The main priorities are to take care of your loved one and yourself. Try to find the humor and the joy in the little moments. Celebrate the good days and survive the bad days, because this battle is long but will not last forever.

Jennifer Lyell

Jennifer Lyell is a forty something wife, mother, daughter of an Alzheimer’s patient, educator and farm girl. She enjoys writing and rambling about her crazy beautiful messy life.  She aspires to share her everyday stories about life through her writing with grace and a little humor.

Written by Guest Author
The Caregiver Space accepts contributions from experts for The Caregiver's Toolbox and provides a platform for all caregivers in Caregiver Stories. Please read our author guidelines for more information and use our contact form to submit guest articles.

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