This year was a hard one. We have been doing our best to help my mother manage her diagnosis of dementia. Dementia and Alzheimer’s Disease are heartbreaking and it can be devastating to watch. As words disappear and memories start to fade your loved one, can often end up being explosive. It’s not uncommon at all and is completely understandable. Over the last couple of years I have noted numerous Alzheimer’s Disease triggers. Here’s a bit more about what Alzheimer’s Disease triggers look like and how to cope.
Alzheimer’s Disease triggers
This past year was, at times, a glorious mess. I am a mom of two, a parent well versed in the language of special needs. For many years, I have also been an advocate and a daughter caring for a parent, diagnosed not so long ago with Alzheimer’s Disease. It’s our second year living with diagnosis now. My Mom recently celebrated her one year anniversary of living in London, my stomping ground. There are days in the spring and summer when she is well enough to walk to my house and visit. And there are days when she is not able to do that. These days my MOM is happy and loved. This she knows, even on days when the words are less readily available than they once were.
It is still raw. An open wound that I cannot fully examine or let heal entirely yet. By it, I mean, diagnosis, relationships, change and this new family dynamic. This new life is ever evolving and slightly bipolar. I mean no slight to the word bipolar, but there are days when this disease makes me swing from deeply devastated and heartsick for my parent, to nervous and worried for the future. Then out of the blue I am blindsided by deliriously happy and in love with life because some small gesture of brilliance was glimpsed and held close to heart. Fuel for the bad and sad and tricky times.
Alzheimer’s Disease is nothing if not a learning experience and I am on a sharp learning curve. There are many tools and insights from the past year and I hope someone out there who can benefit from this post. My children have triggers, both as adoptees, and as children with some special needs. Each of my beautiful girls has a different pattern of behaviour, triggers, solutions and strategies. Parenting them, has taught me how to think outside the box and I have gained a toolbox of skills that some days works well.
Parenting these girls has prepared me in some ways for this journey with Mom.
Over the past year to two years I have learned there are Dementia and Alzheimer’s Disease triggers too. Here are a few of these and some ideas on how to handle them when they arise.
Five Alzheimer’s Disease Triggers for Behavioural Upsets:
Sensory issues are huge for people with neurological symptoms and disorders. I have witnessed my mother swing into a deeply distraught downward spiral of tears or anger over sensory issues. Everything is amplified, just as it is for my daughter who has sensory processing disorder and FASD (fetal alcohol spectrum disorder)
The sensation of feeling wet or cold is a huge trigger for my Mom now. Once I took her to have her hair done outside the hospital – one year ago. This was one of the biggest mistakes I have made. Environment was all wrong. Being with a hairdresser she did not know, and feeling the water drip down the back of her shirt as her hair was being shampooed was too much. The wet sensation triggered a gigantic tearful explosion that could have easily been a violent outburst. That took a lot of energy and emotion. Trying to smooth it out and work through that situation was hard. Even dampness and cold feels different and seems like wetness to her now.
Solutions: I don’t argue if I walk into her retirement home suite and see all the clothes hanging up to dry, because they feel wet. Some materials naturally feel cold and wet, like synthetics and also silks. Avoid buying. Also change the clothing fast if it feels wet. It’s not worth arguing or the aggravation.
Mom has great difficulty with people she doesn’t recognize. If they are in her room or near her unit she feels nervous, anxious and threatened. So repair people, the cable guy and student doctors that are replacing the usual doctors are not good at all. This can even trigger a paranoid episode.
Solutions: Someone familiar is there when a stranger has to visit. If she can see me nearby and I can tell her it’s okay that’s just the cable guy hooking up the TV, then she feels safe. If you can limit strangers, try to do so. This is one of the most common Alzheimer’s Disease triggers.
Schedule changes make lots of people anxious. Anxiety is acute when you are already feeling off because of dementia or Alzheimer’s Disease.
Solutions: Visual reinforcements on calendars, big white boards and notes as reminders. I leave voicemail too sometimes. Not unlike the PEC system used for Autism and SPD, which my daughter often uses.
4. Urinary Tract Infections:
Super common in seniors and not sure why that is, but I became ninja like in determining if my Mom had a UTI last year. Each time she came right off the rails and was completely agitated and moody. Maybe because she felt off and couldn’t communicate to us why that was. It is profound how this small and repairable ailment caused extreme behavioural issues.
Solutions: Look for antecedents and clues and then also make sure that bathing is happening as necessary. Also check that your parent is getting enough fluids.
Unfortunately when I take a vacation or have to go somewhere on a business trip my Mom often loses some skills. This is as upsetting to me as it is to her, but I can’t take care of her if I never ever get a break. I also can’t help her if I lose my livelihood. I don’t have a great solution to this yet. I understand that I am a consistent sight and person and a link that is familiar to her and it doesn’t take a brain surgeon to realize that when I go away she probably feels abandoned.
Solutions: I try to clearly show her when I am returning with indications of dates on her calendar and notes. This is better when my sibling, my brother, shares more care by phone if I am away. Him, reinforcing when I will return, helps all of us.
These Alzheimer’s Disease triggers are common and they are mostly manageable. Thankfully, My Mom is doing much better now that she has some friends, and she really loves at her retirement home. This journey is not an easy one at all. You can get through it with knowledge, hope and understanding. And a massive dose of compassion and patience helps too.