Courtney McGrailAnne Joyce describes how her mother’s Alzheimer’s led her to a new way of loving
Anne Joyce
My forever memory of Mam is a lady of few words, a warm kitchen, home cooking, card games, quietness, and prayer. Her few words whenever spoken were as simple as: “People in glass houses should never throw stones” or “There but for the grace of God go I”.
There was never room in her serene demeanour for either complaint, gossip or a tongue lashing. She did not judge or give advice. Somewhere deep inside her soul she knew words were unnecessary and that all would be well no matter what landed on her doorstep. She was our very own angel.
Mam was self-educated. She was well-read and knew the importance of roots, self-respect, responsibility and endurance with lightness. Many times I went home with stuff that I thought would rattle her but all I ever encountered was a loving tear and a knowing smile.
When Alzheimer’s eventually took hold there were still times in the day where Mam floated back into the real world and seemed perfectly normal. But with its cunning it began to gather momentum. It started to become very real and with unshakeable determination began to dig deeper and deeper into her being. It became clear that Alzheimer’s was gradually going to steal our Mam away and leave a completely different version of her in its wake.
I scrambled at times on my hands and knees with readjustment and acceptance until eventually, a beautiful new way of loving bloomed.
Irish poet and author John O’Donohue puts it like this: “Suffering can call us forward into a new rhythm of belonging which will be flexible and free enough to embrace our growth.”
Wisdom
Recently I read this following bit of wisdom somewhere, “The one thing that does not work is to try and convince the person that has Alzheimer’s otherwise”.
This was a lesson I had to learn the hard way. But others, including my sister, Geraldine, appeared at times to have the wherewithal to go along when she was confronted with a dilemma.
Shortly after Mam was admitted to the nursing home she had a relentless desire to abandon ship, escape or run away.
After many failed attempts, she wore herself out dragging that Zimmer up and down the corridors. Late one afternoon Geraldine found her in a heap of discontent and confusion.
The only words she could mumble repeatedly were, “I want to die”. Geraldine responded promptly, “fair enough let me get you ready”.
Geraldine then settled Mam into bed while asking did she want to say anything before leaving. Was she happy that she had everything done that needed doing such as her will in order, prayers said or any final requests to make?
Mam nodded in agreement then paused, asking Geraldine to get in contact with the family and let them know she was departing. My sister took up her phone and texted the whole family saying that Mam would be making her exit that evening from this world. I remember getting that text and smiling knowing that my sister would find a solution.
Up to this point a little jelly trifle was usually enough to sway Mam in a different direction. Geraldine then said to Mam, I have that done Mam and if you are ready to go, “Off with ya,” Surprisingly like a little child threatening to leave home, Mam looked in Geraldine’s direction and started to smile. I am not sure if she ever brought the subject up again.
I got caught several times before the penny dropped that you must ‘go along to get along’. Mam was sitting at my kitchen table one miserable winter’s evening. I was just about to prepare for going back to the nursing home when she announced that she wanted to go to Mass. I said, “Mam it is too late, there is no other service today, I will take you tomorrow”.
Sentence
She was not satisfied and repeated the sentence over and over, “I want to go to Mass”. Poor Mam got more and more frustrated until eventually her tone began to escalate with a noticeable hint of aggression. I again tried to explain that it was too late but she pushed her chair back, grabbed her Zimmer with force and struggled towards the front door. I was left with no choice but to grab her coat and the car keys while shouting for Lailah, then aged five, to run ahead and hold the door open.
Boy, was I frazzled. What was I going to do? I felt like a headless chicken. I knew that it was getting late and the chance of even finding a church open, not to mind a service, would be a miracle. Well, we took to the road and went to our local church first and of course there was no priest. She insisted on going to the next village.
When we got there the gates were closed so I jumped out of the car opened the gates drove up to the door and said with as much enthusiasm as I could muster, “Right Mam, let’s go in and say a few prayers”.
I could tell by her facial expression that she was beginning to realise that this was also a dead end. She immediately stalled, resisting getting out of the car. I said don’t worry Mam if there is no service we will light some candles and say the Rosary. She looked like she was ready to burst into tears.
Reluctantly, Mam helped light the candles and then with half a heart wearily whispered responses to a decade of the Rosary. It was easy to tell she still had a massive bee in her bonnet and nobody but the Pope himself giving her a blessing was going to lift her spirit. I was still scrambling for some sort of solution hoping upon hope that this might just satisfy her when, just as we were about to leave the car park, she announced, “I want to go to Mass”.
Overdrive
My brain was in overdrive at this stage and I just agreed. But instead of going to the next village, I returned to the nursing home. Mam was not at all amused but when she entered the home she went straight into the toilet near reception. Then I was left wondering. What was that all about? Did she really just need to use the facilities?
It seems that Alzheimer’s affects the brain in such a way that at times everything gets jumbled up and the request may be something completely different from that verbalised. One day when I was leaving Mam’s bedroom she said, “Don’t forget to take that firewood with you”. She really meant the laundry.
I came across the following article with a bit of wisdom thrown in. After Mam’s request to go to a church service, I guess the gods had to have a laugh at my expense first.
Never say no to an Alzheimer’s patient as it may take away all hope. However, they may accept delay and some uncertainty. Don’t argue or ever say such things as, “This is your home now”. When people with mid or late stage Alzheimer’s/Dementia say, “I want to go home” they may just be saying I feel uneasy or scared. The concept of home is a mood that is soothing, familiar, and safe. Doesn’t matter whether the home in the person’s head is a childhood home, the home where they raised their family, or the place they live in now or all of them mingled. It is that satisfying feeling of home rather than a place.
Within a short period of time because of the short-term memory loss they will have forgotten what they said unless provoked and prolonged by arguing over the geography of home. Therefore, go along to get along, give a hug, be positive. A little fib may be better than an argument such as the weather is too bad at the moment maybe later or the plumber has the place pulled apart at the moment and proceed to sing a song or do something to shift their attention.
Remember home is where the heart is, so try to meet their emotional needs. Sit, listen, hold their hand and tell them often that you love them. This helps to reassure the person that someone cares. Remember that they might simply need some positive attention, a drink, food or simply to go to the toilet or change into more comfortable shoes or clothes.
To think now that Mam might have just needed to go back to the nursing home while I was driving around like a lunatic looking for a church service. Ah, hindsight once again.