Annabelle is a professional seamstress of more than 7 years. She also cares for her mother who was diagnosed with dementia.
Being a caregiver is one of the hardest, most demanding jobs that a person that undertakes. Having been a caregiver for some time now, I feel obligated to tell other people my story in the hopes that someone may be helped by it.
When She First Got Diagnosed
There’s some news that can be absolutely devastating when it’s dropped on you out of nowhere. When I found out that my Mom had dementia, it was like the floor had dropped out from under me. She called me to tell me just after leaving the appointment where she was diagnosed, so I was the first person to find out. I tried to remain as calm as possible, but I instantly started thinking about what would happen next.
After she was diagnosed, things got crazy for a little while. Mom went through a period of depression in the first couple of months after being diagnosed. She was a bit young to be diagnosed and it was clear that she went through a period of mourning the retirement that she had been so excited to have. I got her in to see a doctor, who gave her an antidepressant. It took some time to get through this stage, but we eventually were able to get life back on track.
A New Normal
After the initial chaos of her diagnosis settled down, we began to assimilate to the new normal of our lives. The first few weeks were hectic, with moving and other things that needed to be taken care of. After the initial chaos, we were able to settle in and try to adjust to the new dynamic.
Honestly, one of the hardest parts of adjusting was having Mom give up some control over her life. She had been having problems for a while before she was diagnosed, so by the time she moved in, her symptoms were becoming more prominent. One example is that Mom had started to wander a bit whenever she was out in public. This was actually one of the ways that we knew something was wrong before Mom got diagnosed.
It wasn’t until one particular trip out that I became really worried about Mom’s wandering. We had been out at the grocery store and she wandered out into the parking lot while I was walking to a different aisle. I had to search for her all over the store, only to find her trying to get into a stranger's car thinking it was her's. It was a terrifying experience but really opened my eyes to how much I needed to be watching Mom.
After Mom got lost, I knew that I couldn’t go through that again. I decided to get her a medical alert system so that I wouldn’t always have to worry if I had to be away from her. I decided on one of the systems that give the wearer a bracelet with a pendant on it. It has a GPS feature that allows the wearer to be tracked in the event that they get lost.
Mom was a bit reluctant to wear it in the beginning but understood that it was important for her safety. Now that she wears it every day, I no longer have to worry that I may not be able to find her if she wanders away.
Finding a Support System
Things with Mom have gotten so much easier now that we’ve adjusted to a new routine. The days are still long and stressful at times, but there aren’t as many surprises as there used to be. Building a support system has been a game-changer in how our lives run.
In the beginning, I found myself overwhelmed because I was trying to get everything done on my own. It felt like no matter how much I tried, there just wasn’t enough of me to go around. I finally had to break down and ask for help, which forced me to build the support system I had been lacking.
Since then, I no longer feel like I’m doing this all on my own, now that I have ample support from family, support groups, and her doctor. My husband has been a great help in particular. She’s known his for decades and he’s very familiar with her situation. So, I know if I need to go out for the day, she’s in capable hands.
Finding a Routine
Implementing strict daily and weekly routines make our schedules significantly easier to manage. I left my job a few months ago, in favor of one where I can work from home. Now I can get my work done, while also cleaning and taking care of Mom.
We have whiteboards with the daily and weekly schedules on them so it’s easy to remember when everything needs to be done. I found that getting out groceries delivered really cut down on the amount of stress in our lives. Going out for groceries used to mean having to worry that Mom could get lost or confused in the store. Now I can do all of the shopping online and have it delivered to the house, which really cuts down on stress.
Aside from just writing our daily schedule down, we try to keep that daily schedule constant. We eat our meals at the same time everyday and even try to schedule when we get up and go to bed. It’s really helpful for her to have a constant, normal routine she can depend on.
I've learned to manage Mom's symptoms a lot better since she came to live with me. Her confusion is the worst, as it frequently makes her upset and sometimes aggressive. I know it's not her fault, though, it's just a part of the disease. Her other symptoms have been manageable and we’re lucky to have a great team of doctors and family on our side.
Looking Towards the Future
Because dementia is a neurodegenerative disease, I’m always having to look to the future to anticipate how my Mom’s condition will progress. I’m always on the lookout for new symptoms or symptoms that seem to be getting worse.
As her symptoms progress, the responsibility of caring for her gets more difficult. I know that I will have to get more help with her care as her condition continues to deteriorate. I’m looking into home nurses who come a few times a week to assist with daily care and I talk to her doctor whenever I have any questions about what to expect. We’ve found that recognizing and adapting to new situations early is best for everyone involved.
I can’t be sure where the future is going to take us, but I know that we’re going to be able to handle whatever life throws at us. With the support of our friends, family, and Mom’s doctor, I know that we will be okay, even as Mom’s condition gets worse.
What I’ve done thus far hasn’t been out of a feeling of responsibility but from my love and appreciation for her. My mom and I have gone through a lot and have always been there for each other. This is another obstacle we’ll tackle together and we’re all learning how to handle things better with each passing day.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Lorna Lamon on July 16, 2019:
Hi Annabelle, I can relate to your article as my mother faced the same challenges with my Dad when he was diagnosed with Dementia. Even thought she had a good support group, and family who lived near her, it was the constant wandering through the night that she found the most difficult to cope with. Your article is really informative and gives a great insight into the complex role of a carer. Thank you for sharing.