A Families Journey in Alzheimer's & Dementia Part 2

Part 1 of this blog was last week where I shared some of my families story of Alzheimer’s and Dementia of our parents. They have both passed on now and we are not actively in the throws of these diseases anymore. It is still a worry for each of us, when we walk into a room and cannot remember why we went there, the after affects of living through these diseases does not leave, it makes you question your own future.

I wish I had known then what I know now, what to watch for, how to intervene earlier rather than later. For our family, if us three kids had pooled our “weird” instances that we had noticed with mom and dad right away, we might have made this journey a bit easier. But as with a lot of people, we did not see each other a lot, we made a point of seeing mom and dad, but it was more on our own. Looking back we each noticed some odd discussions or events, but not enough to alarm us, and not weird enough to reach out and tell each other, rather we shrugged it off because after all: this was mom and dad, they were fine, so we told ourselves.

If you notice behavior changes that do not make sense in someone you love, a memory loss that seems more than just “aging” do NOT ignore it, for your sake and theirs. It is so much easier to work with a person who is somewhat cognitively aware than work with someone who is not. We waited too long.

Not every memory issue is either one of these diseases, and Dementia is a term for a number of diseases including Alzheimer’s and there are more than 1 kind of Alzheimer’s. There are so many things that can affect our cognitive abilities but all need to be brought to a doctors attention.

10 symptoms to watch for that could signal Dementia or Alzheimer’s:

1. Memory loss affecting day-to-day abilities – forgetting things often or struggling to retain new information.

2. Difficulty performing familiar tasks – forgetting how to do something you’ve been doing your whole life, such as preparing a meal or getting dressed. We noticed Dad had lost the ability to do some of the things he had done for years, but we put it down to “aging”. He loved the game Suduko and he stopped playing it quite suddenly, we had no idea he lost the ability to play it, numbers for him became abstract.

3. Problems with language – forgetting words or substituting words that don’t fit the context.

Dad’s communication was what we called “weird” occasionally – he could not remember the right word or struggled to find a word which is not something he had ever done, again we thought it was normal “aging”.

4. Disorientation in time and space – not knowing what day of the week it is or getting lost in a familiar place.

This was an interesting one – Dad could not get “time” correct. One day I found him sitting in the hallway on his suitcase at 4 in the morning, I asked what he was doing and he said he did not want to miss his plane – he was four hours early. I shrugged it off cause I did not know what to think. After the diagnosis and moving our parents – we heard from someone who watched Dad wander in the parking lot for 2 hours several times, just wandering. Banks let us know that Dad had often been in several times in a day and they were not sure for what.

5. Impaired judgment – not recognizing a medical problem that needs attention or wearing light clothing on a cold day. Driving can become dangerous at this level, I experienced it first hand.

6. Problems with abstract thinking – not understanding what numbers signify on a calculator, for example, or how they’re used.

Dad was a business man and numbers were his “thing” – imagine how shocked my brother was one day when Dad wrote out a “cheque” on a napkin and handed it to him.

7. Misplacing things – putting things in strange places, like an iron in the freezer or a wristwatch in the sugar bowl.

We found things in the strangest places when we moved our parents. We came across 20+ boxes of toothpaste, and overabundance of toilet paper and kleenex (Mom could not remember she had already bought these things).

8. Changes in mood and behaviour – exhibiting severe mood swings from being easy-going to quick-tempered.

9. Changes in personality – behaving out of character such as feeling paranoid or threatened. Mom and Dad often felt paranoid and threatened because they did not understand what was going on.

10. Loss of initiative – losing interest in friends, family and favorite activities.

Our journey would not have been easy even if we had gotten an earlier diagnosis but it would have been “easy-er”. The journey into Dementia is not one any of us wish to travel but the high incidence of it today, assures me that some us will in fact have to travel the same path.

Please ensure for the sake of your family that you take action to have a Power of Attorney in Place, A Living Will so your loved ones will know your wishes if you are not able to communicate them coherently, and an updated Last Will and Testament. Take the time to list your bank accounts, investments and insurance policies and have them attached to your Last Will and Testament.  (My Dad loved to do a lot of banking in his head – not so easy for others to figure it out later).

In many areas there is a long wait to get a person into a care center or home that accepts cognitive challenges. You would be best to get your person on a list sooner than later, as sometimes it is over a year wait. They other thing to note is that if there is a sudden cognitive incident or event, the decision of where to place your loved one may be taken on by the healthcare system and taken out of your hands. We did not know that care homes did not accept couples, it was a one person at a time decision.

We found a few creative ideas that worked for us and helped in the care centers when things got “interesting”.

We photocopied the Doctors diagnosis of each of them and had many copies and had some at the nurses station and hidden strategically in their rooms. If they would not believe us that there was a health issue sometimes this letter would calm them down.

After Dad passed, we had Mom write a note to herself in her own handwriting. We were able to get a lucid moment and she was willing to do it. It basically said that she was in a safe place, nice people were taking care of her, Dad had passed and she was financially okay because Dad made sure she was going to be taken care of. This letter became a lifeline so many, many times. Mom could not ignore her own handwriting and she always recognized it, we kept many copies of this letter around as Mom would not remember where she put it.

We had a photo album done up with lots of family pictures, this was very calming for them.

In their care residences they had a “wander guard” bracelet, it would buzz to let the staff know if they went out the front door. They both managed to get away a couple times anyways. But if you have someone still at home or living with you and they wander there is now something called, “ReUnite” and you can attach it to them or they can wear it. Should they be wandering and not sure how to get home, someone can scan this and it will bring up details to find you and get your loved one back home. We had mom turned into the police a couple of times as she was wandering.

My cousin Heather told me that because her parents lived in a smaller community she took pictures and information in to the police so that if they were reported missing or found and did not know who they were or where they lived, the police had a heads up.

There are some herbal things that worked well in the beginning for Mom. One is called “Orthomind” by the company AOR (Canadian company in Alberta). It helped her memory a great deal when she was taking it.

I had one of my readers remind me that a company she previously worked for believes that neither Dementia or Alzheimer’s is irreversible. She recommended the book written by her employer, Dr. Dayan Goodenowe and Prodrome Sciences, “Breaking Alzheimer’s”. It is a slow but informative read as it contains a wealth of medical information. You can go to Prodrome Sciences website and check it out for yourself. Link: https://prodrome.com/?ref=kendra25

There is no right or wrong, there is what works for your family. Guilt should never play a part in another person’s care. You need to do what is best for you and your loved one, both of you will need care and help through this very difficult journey. Please remember to take care of yourself as well, not everyone is a care giver, know your limits and those of your family and spouse.

It is unwise to loose yourself in the midst of these diseases that has already stolen someone you love.