Alzheimer's & Dementia A Family's Story

I promised to share this information to some friends and was simply going to send it personally, however it is probably time to repost this blog from 2017.  A blog about my families journey - the journey of aging. It is strange that I have been asked to speak on this subject, to write and to offer advice on a time that was so painful for my family. It is my upmost pleasure to do so only because if others can glean any hope, any ideas that can make their life and the life of their loved ones easier – God Bless  you!

I write this not as an expert in any way but as a friend who wants to come along side and perhaps, help you see the things that maybe we missed and you should look for, the questions you might be able to ask, the steps you should take, before it is too late or too far advanced.

I am talking about Alzheimer's and Dementia.

These were the original statistics back in 2017:

16,000 Canadians under age 65 live with dementia

25,000 is the number of new cases of dementia diagnosed every year

564,000 the number of current Canadians currently living with dementia

1.1 million the number of Canadians affected directly or indirectly by the disease

Dementia numbers in Canada | Alzheimer Society of Canada

In 2024: 747,000 Canadians are now living with some form of Alzheimer’s or another form of Dementia. These are the number who live with the disease – the family members directly affected would be in the millions. It is a much larger problem and growing.

Alzheimer's is an irreversible disease that destroys brain cells, causing thinking ability and memory to deteriorate. It is not a normal part of aging. It is a type of Dementia.

Dementia is a term for a whole set of symptoms including impaired thinking and memory, it can affect communication and interfere with doing daily activities, there are different kinds of Dementia depending on where the damage is in the brain. Alzheimer's is one kind of Dementia.

My parents have both passed but our family knows firsthand the struggles of Alzheimer’s – Mom and Dementia – Dad. My Moms memory was not what it used to be years before we got a diagnosis, at the time we did not know what to do, if anything, because it was not so bad that Mom could not function. It was annoying when she could not remember, or failed to show up for an event, but Dad took on the task of remembering for her. We realized later that Dad covered for Mom a lot probably because he did not want to be embarrassed or have Mom embarrassed. I am not quite sure when we realized that Mom had Alzheimer's and maybe we never spoke the word until after the Dr. said it, but we sure thought about it.

Hindsight is always so much brighter. We now know that Mom and Dads neighbors knew there was stuff going on that caused them concern - but no one ever talked to us. Although one or more of us was seeing Mom/Dad regularly - we did not live there, with them.  A relative coming and going weekly or bi-weekly would not notice the little things that just did not add up, or would slough them off as "weird" but nothing to worry about. Neighbors usually have the benefit of seeing people every day or so and when things do not add up they are the first in line to spot it. I wish someone had come and talked to us. If you have some questions about your parents - ask the neighbors if they have noticed any changes.

In the fall of 2010, now looking back, we saw some changes in Dad that we could not figure out, so we ignored it for the first part. Then came December 18, 2010, when our lives would forever change.

I remember the phone call from my sister - "Dad called Rob (my brother) this morning to let him know that mom did not come home last night." 

My brain swirled into panic mode since Mom has Alzheimer's - how long was she out there? Where was she? Did they find her?

My sister continued, "Rob called the police, they and the fire department came and when they knocked on the door, Dad answered and Mom was standing there right beside him. He told the police that he had not seen his wife all night and she had not come home."

They took my Dad to the hospital.

For us it was the start of what we call - "The crazy years".

Dad never recognized mom again and went on to look for her for the next three years. He overnight had lost sight of her. He was often looking for his mother or his wife. He regressed back to a very young age, late teens, early twenties - just home from the Korean war.

Since Dad was Mom's caregiver - we now suddenly had 2 broken parents to look after. We took them to the Doctor and he diagnosed Mom with Alzheimer's and Dad with Dementia. He spoke to them that it was time to look at moving into an Assisted Living facility. 

Mom and Dad seemed stunned at the diagnosis - all 5 of us were there and we 3 adult children were so thankful that the Doctor had done the "hard" talk to our parents. We would not have to, sorry to say, those diseases do not work that way. One time talks do not work with these diseases.

We took them home that day and discussed moving options and places and made a plan to go look at places. Low and behold when we went to get them the next day - they could not remember the Doctors visit or the fact that they had anything wrong with them and were indignant that we would even think of moving them to another place.

Welcome to working with memory loss.

Now it was our turn to be stunned and not sure what to do.  We finally got them “to look” at a couple of options for "down the road" - but always the place was not good enough and down the road was a long way off to them. We also got a hold of the doctor and had him write a letter on letterhead confirming the diagnosis, took several copies (because in anger they may rip it up) and would show mom and dad the letter over and over again. His confirmation usually helped, but not always.

We ran into the fact that most Assisted Living places do NOT take people with Dementia or Alzheimer's - that really limited our options, and our hopes slumped. We visited a couple of places that take Dementia only patients and more often than not my sister and I would leave crying and distressed at the thought of ever putting our parents in there, they were depressing and cold.

We, the kids, went to Mom & Dad's lawyer and asked about a Power of Attorney - Mom and Dad had done one up approximately 1 1/2 years prior- thank goodness. (please ensure you do this for your children and your own sake). They also had a living will and had a Last Will and Testament on file, which is a must for all of us to have.

However, my Dad, ever the businessman, said that we had to have 2 Doctor's give the same diagnosis for the Power of Attorney to become effective.  How do you get your parents to another Doctor they do not know, when they do not even think there is something wrong with them, never mind tell them you think they have Dementia. It was a battle, but we got it done - I understand the concept of getting 2 doctors diagnosis, but with Dementia - everything becomes a battle since they are not thinking clearly.

Two Doctors with the same diagnosis, solidified that Mom and Dad were not going to "snap out of it" or "get better." We knew we had to do something about them living on their own but we did not know what or how, especially when our parents were arguing with us each step of the way.

A few incidents pushed us into action because it comes a time where your parents safety is a huge issue for them and others.

1) I discovered a hole in the enamel in the top of their stove, when I had moved a hot pad. I asked Dad what had happened. He came over and replaced the hot pad and whispered "your mom just left the frying pan on one day and walked away. Just leave the hot pad on there and no one will see it."   I stared at the stove top and wondered just how hot that stove had to get to actually melt the enamel.

2) We found out that mom and dad had flooded the downstairs townhouse underneath them since mom had used the hose on the laundry tub to help the washing machine fill up faster and walked away. This caused the "flood" that caused $12,000 in damage to the downstairs neighbors, who were not so very happy about this.

3) My brother was getting phone calls from residents in the complex that Mom & Dad lived in asking if indeed Mom and passed away. Dad was now telling everyone that Mom had died because he could not recognize her.

Mom and Dad were still adamant that they would not move. Being creative we tried to hire nurses, aides, companions, to come and be at the house for a good portion of the day to look out for them. They either fired them or would not let them into the house.

We would have family meetings, explain how things were and get them to agree to move, only to have them cancel the next day or the day after, not knowing what we were talking about and insist they had certainly not been to a Doctor or had any Doctor tell them they had Alzheimer's (even with the letter). We got them signed into a place, which was lovely, arranged a moving company to come - only to have Dad tell them in no uncertain terms that he was not moving- and he had no idea what they were talking about.  This happened more than once.

Three or four months later, we just showed up, us 3 kids, and a moving truck and we sent them out on an errand and packed up the house. It felt horrible, it caused us such guilt, but we did not know what else to do. I remember that on the day we were packing them up, neighbors then came and told us they were glad we were taking care of Mom & Dad, they had noticed they had not been "right" and their driving scared them, they could not seem to figure out how to get out of the parking lot. I sigh now, just thinking if they had only come and told us before it got so bad. 

Now I would like to tell you that it went well and that my parents were keen on moving. It was not like that. We placed them into an amazing Assisted Living place, much like a 5 star hotel - truly I would love to live there, they hated it, always wanting to go “home”.

We spent the next year fighting with Mom and Dad and kept having to cancel moving companies when they showed up because Dad had called them to move home. They would drive around trying to get home (they were an hour from their old house). Dad was never good with directions and Mom with Alzheimer's could not remember where they were trying to get to. Sometimes the staff at the home would watch Mom & Dad drive around the parking garage trying to find their way out for extended periods of time.

Dad lost his Drivers License during this time, he failed his Driver's exam. He drove anyways, he could not remember he could not drive. Mom also drove sometimes, and that was even scarier, because she had no idea where she was going, she could not remember.  She ended up loosing her license as well. We finally took the car away because they kept driving, that caused ruffles, but an RCMP officer told me that if we had a doctor signed diagnosis, go for it, because we were saving lives.

Dad became so angry at everything, he yelled and swore at us, Mom was a bit kinder but still so angry - what right did we have to put them into such a place, there were times she yelled at us too. Where was their car, where was their stuff (a lot of things had to go into storage)?

It is important to not react as their “child”, even an adult child. Something about our mom and dad’s being angry at us makes us emotionally want to “not” act to obey your parnets. But you have to, it is imperative for their health to disassociate “mom and dad” and save them from themselves, no matter how much they want to stay in their own home. You will need to parent your parent, do it kindly with respect, but do it.

Sometimes we felt like we were the "crazy" ones. We laughed, cried and guilted ourselves til it hurt, sometimes we fought each other because the pain we felt had to come out in some kind of fashion or eat us alive. I am only sharing the "tip" of the iceberg, there are so many events, stories, emotions that go with this complete story that I could write a book.

I share these things not for the sensationalism, but because I do not know where you are in your journey. Judging by the statistics many of you will encounter or even face some of these things yourself. This first part is the what we missed, how could we have changed it and done something earlier. The next blog will be more “what you can proactively do tips”.