Part of how I deal with my mom’s diagnosis of dementia is by listening to a Podcast hosted by two very smart female comedians. It’s called GUYS WE F****D: THE ANTI SLUT-SHAMING PODCAST. It’s a great distraction, especially when driving home from spending time with my mom, which can be one of the most heart-wrenching times to be alone. Before I found the podcast I used to cry all the way home. It’s a welcomed distraction and very educational. 😉
On their most recent explode Krystyna Hutchinson disclosed that her mom was recently diagnosed with dementia. She asked for listeners to write in with some personal experiences. So rather than writing a letter to the show, I created a blog with a list of 12 things you need to know when a parent is diagnosed with dementia.
My mom was diagnosed with dementia in January 2016 and over the last 12 months it’s felt like a rollercoaster ride of shit. I can’t tell you how often I have cried because something reminded me of my mom.
Ok Krystyna here’s what you need to know: Having a parent diagnosed with dementia is a F****n Cosmic Prank! To be straight: I haven’t found anything good about this illness, and from the people I’ve talked to, no one is finding joy in living with someone who has dementia and not one person has said to me: “its ok Leslie, it gets better.” Not one.
With that said here are some things I have found to lessen the sting of reconciling the parent/child relationship to the new child is now the parent in the relationship and to assist in supporting my mom. Yes, I’m still angry about this and am working on it.
Use local community organizations to educate yourself about illness – In Toronto, I connected to the Alzheimers Society – They have a social worker that helped my sister, and I learn about the disease and offered resources like peer support groups to help navigate this new life.
No matter where you live, learn as much as possible about the illness, and how to begin supporting your parent. The Alzheimers Society has been an invaluable resource. From connecting with other people in a similar situation to learning about resources to understanding the illness at a deeper level, it’s made the challenging situations with my mom easier to accept. With understanding comes acceptance. Of course, acceptance doesn’t mean I have to like what’s happening however it has made it simpler to understand.
2) Unprepared Emotionally:
As the child, you are not emotionally prepared for this illness and what it does to you. How many times did I say this to my mentor? How many times did I ask (the universe) where is the training for this new way of operating with my mom?
I recently realized I’d upped the level of control I place over things, more so than I have ever before. I’m pretty sure this is coping strategy I use to overcome the emotional and physical stress I’m experiencing. My total inability to manage the onslaught of emotions is paralyzing. I don’t know how to feel about my mom, I’m not familiar with these new feelings. All of this compounds the stress and my experience is an increase in pressure. I knew I was having trouble because I couldn’t deal with the little things I normally deal with easily. I want so badly to go back to how it was, when she lived on her own, able to navigate day to day living and so full of life. Understanding the emotional effect this change has on me feels tricky and slippery (I’m still not sure I’ve got a handle on it), and I would suggest having someone in your life to help you sort it out would be priceless.
3) Balancing Her Independence and Safety
There will be a need to balance independence and their safety.
At the beginning of the year, my sister and I had some systems in place to help my mom remember things for herself. What we didn’t realize was even though we called and made sure she took her medication each day, part of the illness was having her believe she had taken the pills, so she was telling us that. We soon found out that unless we were going to her place and seeing her take them, we couldn’t trust the information she was giving us. We found out she was missing days. It was the same with food; we didn’t know if she was eating properly. We struggled a lot over how to bring a sense of independence and to add in some controls for her safety and security. In September she ended up in the hospital for ten days where the doctors told us she could not go home and live alone. We had to find her an assisted living residence. We did, and she has been there now for 3.5 months. While we are confident she is safe and looked after well, she has lost a lot of her independence. Her residence offers services to all levels of dementia patients. She says staying at the residence is like the boarding school she was at when she was ten years old. It breaks my heart to see her there.
4) Express Your Feelings about the Illness
Know that you need to express your feelings about this illness and what it does to your mom. Make sure you have an outlet for this. Find yourself a peer support group, therapist, or coach who can provide guidance. In the beginning, I wasn’t taking care of myself in that way. Hence my higher levels of control that I described in 2 above. It wasn’t until recently that I opened up about what’s happened to my life since my mom was diagnosed. The best thing about opening up is it’s easier the next time you do it.
5) Don’t Bottle up Your Emotions
Similar to number 4, allow yourself to cry, get angry, be frustrated whatever – don’t hold that shit in – life is too short to keep it bottled up!
I was crying each time I left my mom at her residence. Each time I saw my mom the next couple of days were not ideal for me. And while the crying is good, it was decreasing my ability to be productive in my work. One of the best pieces of advice I received was from my Enneagram mentor she told me to compartmentalize the times I was sad. To have times when I’m alone where I can cry as much as I want. To build it into my day so that I wasn’t distracted by it all day long. Certainly, at the beginning it was very distracting, I’d hear something, look at a picture, anything would have me go off. Once I began seeing it as part of my self-care practice, it seemed fitting to let go after I had seen her.
6) Increase your Intimacy with Others
Be sure to be with people, really be with them. Your knee-jerk reaction will be to put up your (imaginary) shield and pretend you are ok, that it doesn’t hurt, pretend your heart isn’t broken, and pretend you don’t feel an emptiness growing inside you. At least that is my experience.
Here’s my advice when you feel that way let people know what’s happening for you. I think and know it’s easy to hide our feelings about this because it just hurts so f****n much. Let people see you, let them in. I believe it’s the only way to feel connected; I have found this an incredibly isolating illness for both the one diagnosed as well as the children living with the parent. I don’t advise you talk to your mom about this – I had that thought and realized it’s going to make it worst for her. Plus she may not be able to provide you with what you might want by telling her. Find the people in your life you can share with and do so. It will strengthen your relationship with them and in return provide you with some of the resilience you need to be with your mom.
7) Your Patience Will be Tested
Your experience with your mom and her illness will expand your level of patience to levels you never knew you had. In the beginning, I felt like I could handle everything, then I had a total meltdown and realized I wasn’t handling anything and needed to add in “wellness days” into my calendar, then I began to see my levels of patience start to increase again. Part of the challenge with this illness is the stuff you don’t know what you don’t know.
I believe I had to learn some hard lessons to get to this point.
I’d recommend taking up meditation if you don’t already do this, its one of the best ways to strengthen your patience muscle.
A few practical tips I picked up along the way:
My mom was having trouble remembering which day it was or what time of day ( morning, afternoon etc., especially when the weather made it dark outside). Also, we had some incidences that she’d be waiting for one of us to pick her and only to find out the arrangement was for the next day.
We got her 8” Digital Calendar Alarm Day Clock by Svinz with Extra Large Non-abbreviated Day and Month. You can find it on Amazon. It has been a tremendous help for mom.
Using stickers that you can write on. We use this system with some of the electronic items she has from clocks to fans to iPads. Using a label can help remind the parent of on /off buttons etc., This will make for increased independent living. (You won’t get as many calls about something is broken – only to find it’s been turned off)
10) Saving Face
Saving Face is mentioned in the research often. Use this tool when what your parent is saying you’ve heard before or is incorrect, just agree with them. It’s called saving face and is a valuable tool when communicating with someone with dementia. The way this looks with my mom is, she will tell me something she just said two minutes ago and I’ll listen to her like I’ve never heard it before. This took some practice because at first, it was just frustrating; however, I realized that I could be present with her in the moment ( no matter if we had that moment already). This realization was a gift for me. Knowing that over the next couple of months/years there are going to be many times she tells me the same thing or asks the same question over and over and I just get to be with her.
11) Ambiguous Loss – Pauline Boss
I realized I needed to understand grief and loss so I began looking for a podcast about grief and came across one at On Being with Krista Tippett who interviewed Pauline Boss. I highly recommend listening to it. Pauline Boss has studied ambiguous loss over the last three decades and has written lots about this. First to understand when dealing with someone with dementia we are dealing with an ambiguous loss.
“A Loss that occurs without closure or understanding. This kind of loss leaves a person searching for answers, and thus complicates and delays the process of grieving, and often results in unresolved grief.”
12) Dementia affects the “reasoning” part of their brain
“All dementias affect what is called “executive function” chiefly by affecting the frontal lobes – the reasoning part of the brain – so that it is difficult for the person to make sound decisions. Being a good decision maker requires the ability to move from one perspective of a problem to the next and make a reasoned decision about what is the best option.”
This was brought to my attention in the peer support group I’ve been attending at the Alzheimer’s Society. It explained a lot of why my mom does what she does and asks the questions she does. It may sound quite abstract now, and I urge you to be watching for this. In some ways, my mom has all her reasoning abilities, and in others, she is totally affected by dementia. It seems random and just knowing that she doesn’t have the ability to fully reason helps when my sister and I are trying to understand her actions.
I have found it helpful to cry about other things other than my mom. Facebook is a great source of videos for just this kind of need – not to mention the number of kitten and puppy videos that can help when you need to laugh. In the meantime, I found this video on Facebook and found it to be very helpful:
Wendy Mitchell: What Happens When You Have Alzheimer’s Disease
What other strategies do you use to manage the emotional stress of having a parent with dementia?