Having been a caregiver for both dad and mom through these horrible disease’s I thought I’d put together a blog on some helpful tips to help anyone going through this right now. Let me tell you though, it isn’t an easy journey and there were days I wanted my dad and mom back. Not the human they had become. But since they have both passed, I never regret the work I put in to helping them every step of the way.
What may be different in my case is that as dad was going through violent Alzheimer’s mom was going through mean dementia. Something, I didn’t know until well after dad passed. This is why I’ve decided to share my story. Understanding the signs early enough can help detect what is going on.
In the early stages you may find your loved one is forgetting things they just did a few hours ago, or may be repeating themselves. Something we may chalk up to “old age”. Let me tell you right now that when they keep doing this more often, it is time to have them tested. The test is very simple and called Standard Mini-Mental State Examination (SMMSE). Your family doctor should be able to perform it in 10 minutes. The maximum score is 30 and anything above 25 is classified as normal and anything below 24 abnormal and requires further investigation.
Once your loved one has been diagnosed with Alzheimer’s disease or a related dementia it is important to get educated on what you as the caregiver can do, to ensure you support them and yourself effectively.
As the disease progresses your loved one may require help with personal activities, such as bathing, grooming, dressing and feeding or cooking for themselves. As I reflect back on dad’s condition, he really struggled to hold a fork and knife and sometimes didn’t know what to do with them. Therefore, I would cut the food for him and only hand him the fork to feed himself. As I stated before, I found out mom had dementia while dad was going through Alzheimer’s after dad died. Therefore, when I look back at her yelling at me that I shouldn’t be cutting his food and he should starve if he can’t cut his food on his own, I should have had her tested too. Therefore, please watch for signs of other loved ones.
Dad was put on a trial through UBC Alzheimer’s Hospital where he was given Aricept to help with the symptoms. And for 18 months it did. But soon after he went downhill. When we were at UBC on one occasion, they told him he could no longer drive. His BMW was his pride and joy and when we were driving home from that session, he yelled at me the whole time stating he would take the car and drive it off a bridge. I had to take the keys with me and mom had to hear him yell many times.
Dealing with dad, whose Alzheimer’s became violent was something I never thought I would see from my dad. Anyone that knew him, knew the man that always smiled and lived life to the fullest. So, when he picked me up and threw me against the wall the first time, it was very hard to take. What do you do when this happens, well first and foremost remember that it isn’t them. It’s the disease that is slowly taking them away from you.
With dad it got to the point where we had to put him into the hospital as he was hurting himself and I was afraid he would harm mom. When in the hospital, he reverted to only speaking Italian, therefore they would call me in the day and night to go calm him down. This was happening sometimes three times per day. It got to the point where I had to tell them to straight-jacket him as even with me there he wasn’t calming down. Soon after he was classified as a danger to himself and society and was put in a special hospital specifically trained to handle these cases. The day my daddy died; I knew his mind was finally at peace.
Mom was a different story. After dad passed, I started to notice she was becoming meaner and more forgetful. I got her tested not long after dad passed and she was diagnosed with dementia. At first it wasn’t too bad. I would reel her in when she would start yelling or saying things that were mean. But when we went to the grocery store and she yelled at the cashier for being Asian and not belonging in Maple Ridge, this is when I needed to have her further tested.
We saw a specialist and he said the disease was causing mom to lose her filter. As the layers of the brain shrank, she would lose control of functions like memory, personality, behaviour and speech. She also became very secluded. Didn’t want to go anywhere outside of her home. And because she had no filter, I’m sure she lost all her friends that once cared for her, because she probably said something she shouldn’t.
Before COVID I noticed she didn’t know how to use the stove, microwave or even alarm system. This got us really worried and we installed cameras in the living room and kitchen to make sure she wouldn’t do anything to harm herself. That is when we truly got the scope of her illness. She was up all time of the day and night searching for things. In the morning she would tell me she went places like church and shopping.
I started cooking for her and brought it to her everyday. I even had her medications dropped of by a nurse three times a day because she was overdosing even with blister packs. Once COVID hit and none of the kids could go visit is when I saw a drastic change in mom. She started to become meaner and more violent with me. She even threw me one day, and honestly, I have no idea how she got the strength but she did. I therefore called for help and on the day we were to have a video chat with the psychiatrist, mom was at her worst.
The doctor did SMMSE test and she got 3 out of 30 which was way worse than the 13 she had four months prior. She therefore consulted with our family doctor and I had to bring mom into emergency right away. The one good thing about COVID only being three weeks old, was that there was no-one in the hospital. Within 2 hours mom had every test possible to see what was going on. This is when I found out that mom had had dementia for at least 8 years. Based on how much her brain had shrunk, the specialist was able to state she was in true dementia state and would need 24/7 care.
Alzheimer’s had taken dad away from us at 75 years old and dementia took mom at 78. Both having lived with their disease for at least 8 years and putting strain on those that loved them. We got support from the Alzheimer’s and dementia program in British Columbia and for anyone that is going through this, I suggest you ask your doctor for any resources available in your area.
Here are some things I learned on how to manage mom’s behaviour
Calm them down – when tensions are high because your loved one is yelling or saying things that escalate their behaviour, start by reducing the stress. Turn off TV, ask others to leave, if you are finding yourself needing to cool down, count to ten. And remember this is the disease.
Comfort them – now take a deep breath, don’t argue and use a calming voice to reassure and comfort them. Ask questions to ensure they are not if pain or discomfort. Use short and direct sentences so they can understand you. Let them know you are here to help and respect their personal space.
Understand the trigger points – whenever something difficult arises, write down what happened, the time and the date. Keep a journal specific for this. Write down what was happening just before the behaviour started. Keeping track allows you to find possible causes for the behaviour. For example, mom’s trigger would be in the morning when the person that wouldn’t bring her drugs on time, she would call me in a tissy. Therefore, I would call or go to visit her before that time and calm her down prior to her getting agitated.
Day programs – this would have been something I would have loved mom to go to but she wasn’t getting out of her house. Even when I brought someone in to spend some time with her, she told the person to never come back. If your loved one has a hobby they did, try finding something that aligns to that hobby.
Lean on family and friends – it’s so important to have others help because being around the same person all the time can trigger your loved one to get short-tempered. Ask family to spend time with them to give you a break and to bring some variety in your loved one’s life.
Attend caregivers support groups – there are so many out there and listening to others and sharing your challenges is a way to release stress
Check for urinary track infections – this is something that caused mom even more challenges because when she got one her difficult behaviour escalated and getting medication to help get rid of the infection quickly helped to curb the behaviour
Personal object – if you are moving your loved one in a home, bring well-loved objects, photos, and blanket or pillow so they feel more secure
Don’t use don’t – when your loved one doesn’t remember you or something, remind them who you are but try not to say “don’t you remember?”
Encourage conversation – distracting a loved one with activity and promoting two-way conversation which encourage more than a yes/no answers will allow them to expand their mindset
I’ve talked about taking care of your loved one. Now let’s talk about you as the caregiver. You have to take care of you! I know there are times where it can be overwhelming but also extremely rewarding therefore you keep pushing on. I did the same. I lived for the 5% I had mom and dad back. But the 95% was hard. Therefore, I had to find ways to keep healthy so I could keep my loved one safe, work, and take care of the rest of the family. These are a few things I did for me:
Asked for help – from family, friends as well as local services
Ate healthy – made sure I had nutritious meals that gave me energy
Took breaks – I found serenity in walking therefore I would go out two to three times a day
Enjoyed hobbies – I played games, did crosswords and cross-stitch to keep me sane
I never thought I would lose my parents so early. Thankfully being Italian they had their desires for funeral and burial all decided upon years before they started to lost their decision making abilities. I’ve seen so many that didn’t have the conversations and then trying to make final arrangements was tough. Therefore, even though it is tough, have those conversations so that you know what they want. It will make it a lot easier when the time nears.
I do regret one thing that not enough time with my mom took away from me. I didn’t take the time to cook with her to learn our family recipes. The recipes that were the staple of all our family get togethers and special occasions. It wasn’t until she was gone that the family started craving them. I did find her recipe box, however each recipe had four to six versions and it was hard to decipher what the quantities were. Therefore, recreating them sometimes took many attempts.
My final advice for anyone reading this is talk to your loved ones and get everything you want from them while they still have the ability to give you what you need. Whether it is family recipes, family tree info, hobbies or anything else, take the time to connect because it is amazing what you can learn from them, while they still have the ability to communicate.
I’ve created a wonderful cookbook "Cooking the Mindful Way, a Tribute to Alzheimer's" and if you donate I will send you a digital copy. Click on photo:
