This was our 3 years of crazy and or as we refer to them, the "hell" years. 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 wish I had known then what I know now, what to watch for, how to intervene earlier rather than later. If you notice behavior changes that do not make sense, memory loss that seems more than just “aging” do NOT ignore it, for your sake and theirs.
The very first rule you should know is: DO NOT TAKE ANY THING THEY SAY OR DO PERSONALLY, YOU HAVE TO DISASSOCIATE EMOTIONALLY FROM THEM - they have a disease. (Really tough to do with parents and even more so with a spouse)
We probably did this too late because we did not know what we were doing or dealing with - we had no support as caregivers except each other. We found ourselves saying over and over "that is not my mother or that is not my Dad" - they might look and sound like them, but it is the disease talking.
Find a support group for yourself - the caregiver, even if they are in a care home - so very important! Get informed and find other people going through the same journey - you will need to talk it out, cry it out and find some ways to laugh.
Things we did that made it easier: made a memory book - photo album, important pictures, places, announcements going right back to the persons childhood if possible. We also wrote out the person's history for the care home so that they could also have "memories" to share with the person. As a person progresses into stage 3 & 4 of Dementia or Alzheimer's - the only pictures they might remember is their own childhood, my mom now does not know who her grandchildren are and often at her stage 4, she forgets us, her own children.
When a person is diagnosed with Alzheimer's or Dementia - their family physician does have to report it to the motor vehicles office. We breathed a sigh of relief that we would not have to face taking the car or trying to get the Driver's licenses. WRONG.
Government offices are not notably fast acting. Dad finally had to go for a driving test - but it was 5-6 months after the diagnosis. He failed the driving test - but continued to drive because he forgot. Mom's drivers exam was not schedule for 8-9 months after the diagnosis and she ended up failing because she kept forgetting to go for the exam. She continued to drive because she had an expired license in her wallet that told her she could still drive (her mind could not compute the dates, she just needed to see the license). We as a family had to take the car away - it just disappeared one day - if you think my folks were "happy" about it - think again. More often than not - it will be the family having to make this decision for the safety of the person and others on the road.
The list to get older patients into homes is long and the wait is tedious - we found out that they place people into care homes "individually" - not in couples. We took it upon ourselves and had the resources to get my parents into Assisted Living together. Getting them into total care - was another story - it was done individually. Most of the time you are usually dealing with one spouse with Dementia - not both, so by the time the person goes into a home - it is a relief for the caregiving spouse who has been carrying the load probably for a while. We were told that if one of our parents went into the hospital (before we got them into a facility) to refuse to take them home - that way they had to be placed by the government into a facility faster. You do not get to decide which facility but at least it is full time care.
My niece is now a nurse (we could have used her back then) she gave me a very informative online brochure that lists options that ALL people need to consider as they age. The forms are for the Province of BC but they certainly can be used as a template for you to make decisions by. She also informed me that in this age of "step families", step parents and step children - that unless it is written down, even a family friend can have a say about medical decisions over a step-child.
Link to "My Voice" Brochure:
There is a cylce of events that take place in Dementia and Alzheimer's, from memory loss; to paranoia - where they do not trust anyone, they accuse people of stealing their things often because they have misplaced them, including family; there can be a stage of anger that can range from mild to severe; loss of inhibitions (my friends grandma used to take her clothes off and run around).
Here are 10 symptoms to watch for from the Alzheimer’s Society of Canada:
1. Memory loss affecting day-to-day abilities – forgetting things often or struggling to retain new information.
Regular aging will have memory loss but Dementia type memory loss - you can not "recall" what it was you were trying to remember. One of the tests that they gave my parents was a series of questions asking what day of the week is it, what is the date today, what is the month, even what year is it, how old are you. Can they remember what they had for lunch today or breakfast.
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”.
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 six hours early. I shrugged it off cause I did not know what to think. Banks and some businesses told us that Dad had been in several times in a day and they were not sure for what - they did not tell us until after we had put them into the Assisted Living.
5. Impaired judgment – not recognizing a medical problem that needs attention or wearing light clothing on a cold day.
Or leaving a hot item on the stove and walking away or filling the washing machine with a hose and walking away.
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 paper napkin and handed it to him. We could not believe Dad could not get "numbers" - simple addition seemed abstract to him. He loved Suduko but we realized now, that early on in the disease, he could not play any longer - again we did not know it was a sign of Dementia.
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 forgot she had bought 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 - they isolate and people withdraw because they do not know how to relate to them.
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 with a parent or a spouse or perhaps even ourselves.
The key to recognizing some of the symptoms early is important – working with your aging loved ones while they can recognize some of the signs and make more coherent decisions early on, will in the long run make your journey not quite so rocky as ours.
One of the key things we found was "crucial" was having some facts written out, photocopied and "stashed" in various places at their house or care home. At the beginning we had the Dr's visit date and diagnosis, along with a photocopied Dr. letter, and a brief synopsis of events (mom flooding the downstairs, leaving the stove on...) where they could read what had happened by fact, not argument - they were then more open to listening. Or if they phoned one of us and could not figure out what was happening, we could say go look in such and such there should be a letter there - read it, I will wait. As the disease progressed I would update the letter every few months and finally got Mom to write the letter in her own handwriting after Dad passed away, she would recognize her writing and she knew she could trust herself and that no one was lying to her. Often they would tear the letter up but we always had a good supply of copies on hand (and one at the nurses station).
Please ensure for the sake of your children 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).
My Dad passed away March 2013 with severe Dementia in the end he could not communicate or do daily functions.
Mom is still in a Care Home with stage 4 Alzheimer’s. Our journey still continues…..