Thank you for joining me. . . . . .you are my sunshine!!
Have you as a caregiver encountered any communication issues recently? If you realize it could happen along your path, maybe you can reduce your stress and worry by knowing others struggle with this as well!
Back then, My Love was beginning to have serious problems finding words to explain his thoughts.
I wondered how terrible it must feel to be unable to ‘call up words on demand’ to speak your thoughts. At that time, if no other way worked, he used charades, a concept replacing the word with an idea, communicated via an ‘acting’ mode.
Memory loss is not just forgetting where you put the keys, not just taking longer to think of a friend’s name, not just bringing home eggs when you meant to buy bread. I have witnessed My Love’s Alzheimer’s brain, the boss of the bodily functions, destroy his abilities on all levels, bit by bit, nipping at a life that once emanated from the person, the life that once dazzled the world with vitality. His lost words are just like his weakening ability to walk, and his body’s confusion about when he is supposed to sleep.
I know how frustrating it is when I cannot magically find ‘that one word’ to describe what I am trying to convey. But to lose connection to all our words must be more than discouraging, unless of course, you have memory loss, plus anosognosia, and don’t know it is happening.
In the months since I told about My Love’s word finding difficulties, his Alzheimer’s has progressed. His memories and recognition of his daily surroundings, have all but disappeared right along with his words. He can no longer use charades because the concept does not seem to be able to transmit to the ‘acting’ part of his brain.
On the other hand, now I must try acting out what I am asking of him. For instance, to take his pills, I put one pill in my hand and raise it to my mouth…wait for him to follow. Then I put the glass of juice in my hand and lift it, to show to drink it with the pill…wait for him to follow. Sometimes he does not understand this and I must take the glass, put it in his hand and lift both hand and glass to his mouth to get him to grasp what I try to say with words. And sometimes, it is more complicated than ‘acting out’ with pills!
Caregiving just takes a great deal of patience, counting to ten, being able to be flexible, going with the flow, one moment at a time. I aim at being kind, knowing I do the best I can with what I know at the time. 🥰
It is incredible to note how common it has become when one sentence cannot be completed. Like a child, the sounds come, one or two at a time. But My Love’s 81-year-old sounds are not necessarily recognizable as words anymore. The attempts are there. He realizes, momentarily, when he cannot find the right word. And then he tries again…not remembering that he tried to find that word just moments earlier. I am aware of his brief frustration from word loss; but, that, too, disappears quickly.
Sadly, the magic of my soul needs recharging. Yes, I become impatient listening, but I do try to help by suggesting words— it is hard to find words he understands! He does not even understand when I try to act out the words. The connections are definitely disrupted.
It is my job, me, My Love’s partner and caregiver of over eight years, to step in, with a smile and laughter, to bring life back into his face, vitality into his life. I guess at the words he cannot find, as if I could magically discover his thoughts and say them out loud…but my magic wand does not always work!
It has become difficult for him to give me a clue. His ability to get the thought from his mind to his mouth seems to have been cut short by the brain areas that control those complex functions. The available means to tell me have diminished and, as a result, so do our conversations.
My Love may be losing many of his words, but he does still have feelings. He still can laugh, he still looks at me with a heart-felt, kind smile, a sense of thankfulness that I am there, an uncertain awareness of what is going on around him. Yes, even if he cannot explain them, he still has feelings.
At times, I chuckle when I respond to him with what I guess he might be saying—he still has his scripts, so deeply embedded, that his response will invariably be, ‘right,’ or ‘I know’ or a nod of the head, even when the answer I give could not possibly be correct!
Every so often, I wonder if I can keep my caregiving magic alive during the later stages of Alzheimer’s. I have been told it will become harder to communicate as we walk the later steps of this journey together…I, too, am learning! But like I have done since day one, I will remain My Love’s ally and partner, his caregiver, regardless of what I am asked to do.
I can’t stop… even if I am getting tired…it is time to get the wizardry back into my life and get the magic, beginning to flicker in that wand, recharged!
🌞I hope this little update of a caregiver’s life in the world of Alzheimer’s magically melts away some stress for you today!!🌞
Before you leave, check out the rest of this site especially Caregiver Tips!! Sign up to get notices…and we’ll watch for you next time….! 🌞💝🌷 ~ jas
If you need to respond to an emergency and you are not sure whether you should go to the Emergency Room:
1. call Telehealth Ontario 24 hours a day, seven days a week and speak to a Registered Nurse, toll-free at 1-866-797-0000.
2. in a medical emergency, Call 911 immediately Do not call Telehealth.
3. Call 1-877-825-9011C.O.A.S.T. – Crisis Outreach and Support Team in Halton Region, Ontario.
Become familiar with these three groups and how they differ.
That’s the blaring sounds of the fire alarm in our building that you hear!
It was 8 o’clock in the morning. I had just poured my coffee, thinking it was time to begin wake up calls for My Love. But as I placed my coffee down on my desk, loud, high-pitched sounds began to pierce the air. Our building fire alarm was blasting through our speakers.
First, I went to waken My Love. He had not been disturbed by the sounds. In fact, he was still asleep. I nudged him and when I asked if he heard the fire alarm, he grumbled, “what?”
My Love normally had excellent hearing, but right then when I asked him if he heard the alarm sounding as he slept, he mumbled, “no.”
That is not good news…he can’t hear those harsh, loud sounds, plus they mean nothing to him!
The rule of thumb for fire alarms has been ‘everybody out.’ Except in our case, we live on the twelfth floor, we are nearly 80 years old and physically could not walk down the twelve floors very fast together. And if we encountered fire and had to go back up and then down the other side, we could become a distraction the fire department would not need. We have been told we are on the building’s ‘high risk’ list, and have been advised to stay in our apartment with a wet towel on the floor by our doorjamb. We were assured that if we needed to leave, the firemen would come get us. That’s exactly what we do.
In case we had to be ready to leave the apartment, I slipped on a dress and put on my sandals.
I told My Love, “You have to get up right now, and get dressed . . . right now.”
I repeated it a couple times, but he did not understand my urgency. His eyes opened, and in his normal snail-paced movements he sat up, looked at me and asked, “what?”
“There…those sounds That is the fire alarm!” I reminded him. He just looked at me. Silence. I could tell this time he had no memory of what those incessant sounds meant.
I explained, “There’s a fire in the building and we must be ready to leave if we are asked to go.” Grabbing a shirt and pants for him to put on, I continued, “You have to be dressed if the firemen come to take us downstairs.”
Since “fire” means nothing to him — the alarms now must be my ‘wake-up call!‘
My words did not increase his pace one bit. He did not relate to my coaxing. He slowly removed his pajama top and began to put on his day clothes.
There was no way I could speed up the process. If I became anxious, My Love would become anxious and dressing would be halted. I waited. One leg in the pants. The other leg. One sock on. The other sock. I tried to tuck in his shirt while he leaned over to put on his shoes. He pushed me away.
On the way down the hall to the living room, he took a detour to the bathroom.
Good. He will get that over with.
Instead, he picked up his comb and began to smooth out the ‘messy look’ from his sleep. I forcefully reminded him to use the toilet, with a small demonstration to be sure he understood.
The alarm had not stopped. The ongoing reminder to hurry did not mean emergency to My Love.
Quickly, I gathered my phone, my purse, My Love’s puffer, a water bottle and our “emergencies” bag and placed them all beside the front door. In the moments of excitement, I wanted that ‘stuff’ accessible if we had to leave in a hurry. That was a reminder that I should update that bag when the crisis ended. (Download my Grab ‘n’ Go Bag below.)
Here had been one more experience for which I was not ready. I knew my personal role in the fire alarm script. I was not ready with an evolving plan for My Love. I am not even sure I could make one now, except that I am acutely aware that he can no longer think for himself in emergencies . . . at all.
Once in the living room he began turning in circles, holding his hands over his ears. Those earsplitting sounds were still resounding through the speakers. He was definitely feeling the vibrations. I opened the patio door to see if I could smell smoke. I stepped out and looked over the balcony. No one was there. Usually for fire alarms, there are people from the lower floors in the back garden area. I saw no one. Although I had smelled smoke, I saw none.
I quickly walked through our living room and kitchen. There was a faint smell, coming through the air duct. I could only suspect it was a kitchen fire that had set off the alarms. With that in mind, I went back to check on My Love.
“Why don’t you sit on the balcony until we know if we are staying or going,” I mentioned, as I directed his focus to the balcony chair.
“Where are you going?” he looked at me. “I am going with you.”
I gently pushed him to come inside to sit on the couch. “I will go see if anyone is in the hall,” I reassured him, so he would not follow. “Then we’ll know what we will be doing.” I walked to the door.
As I looked through the peep hole I saw three firemen dressed in full PPE, in the hall walking toward our door. (Personal protective equipment – a term I learned because of COVID-19.)
I am glad they moved fast —there were so many questions I could ignore in my mind. I opened the door to see what they’d say.
“Just investigating, ma’am. Is everything OK in here?” he asked stepping into our entry hall. “Let me look in your kitchen,” he said, passing in front of me toward the kitchen door. “Everything OK here?” he asked again. I shook my head and said, “yes.”
After checking our smoke detector, he left our apartment and knocked on our neighbour’s door.
I got My Love a coffee, and we sat in the living room until the alarms stopped and the fire department announced that everything was under control. “Have a good day.”
And that was that. We may never know if it was a nuisance alarm or a manual fire alarm pulled in a hallway as a prank. We will not hear if it was a kitchen fire or someone smoking in bed. We will not know if it was a short in some system. We just know the fire department responded and they felt good enough to leave.
But lessons for me were how unprepared I was for My Love’s lack of understanding of the word “fire,” and how surprised I was that the alarms meant nothing . . . even once he heard them. Next time, I would probably do nothing different than this time, but at least I had been given a glimpse into the experience that might happen again.
This had been the kind of glimpse I like to give caregivers in my books!Yes, writing my books was the right thing to do!
One other red flag that came from this ‘alarm’ was that I had to update our emergency bag more often, to check that meds were current, that keys were there, that the emergency items on the bag list were there. I would not put the bag back on it’s hook until I did that.
Fortunately, our early morning emergency turned out to be “nothing serious.” But it was indeed a second chance, a sign, providing me the incentive to make a plan for ‘what if and when’ we have another emergency.
NOTE: Incredibly, there was a second fire alarm that same day and a third they called a ‘false alarm’ the following night…being investigated!
Both additional alarms were early evening and My Love and his memory were tired. He still did not understand ‘fire,’ no seriousness, no urgency. I still could not explain to him why the sounds were coming through the speakers, nor why I couldn’t turn off the noise. The alarm lasted a good twenty minutes. But all the alarms revealed more memory decline causing me to be concerned that My Love might become agitated and even aggressive because of lack of understanding. I know he must feel safe at all costs.
No fire source was found then, either, but the urgency to fill my Grab ‘n’ Go bag has become high priority!
That morning made me realize I needed to update my thinking about emergencies while living with my partner in late stage Alzheimer’s.
Your emergency might not be a fire alarm, but being prepared for the unexpected is the plan. This is what I discovered related to the Grab ‘n’ Go bag. Add or remove items as appropriate.
BE PREPARED: Remember your walking cane, rolling walker, or wheel chair, if necessary.
Make an emergencyGrab ‘n’ Go Bag (large backpack might do, with or without wheels) for you and your loved one(s). Gather items and determine best size needed. Can you lift or carry it?
Slippers, extra set of clothes
Extra underwear or depends
Plastic bag to put wet clothes in
Tissues, wet wipes
Spare eyeglasses, sunglasses
Medical documents, medication list, medications
Health card(s), doctor list and phone numbers
Small notebook and pencil
Phone (if not elsewhere) and phone charger/cord
Identification documents, including passports Personal lanyard ID to be worn if away from home
Power of Attorney (POA), copy of will
iPad, book and/or magazine for entertainment for one with Alzheimer’s
Medic Alert information (be sure bracelet or ID is worn)
Emergency phone list in case you need to make calls
Bottled water for each person
Extra money or credit card
Face masks and disposable gloves
Follow plans, rules, orders to make efficient evacuation
Know the meet-up place assigned (tree across the street, etc.)
Plan transportation to call, plan a safe destination
Prepare to share diagnosis with staff where you go, hotel, airline etc.
Stay together, do not leave loved one alone
Remain calm so as not to create anxiety for anyone
Prepare what you would do if wandering, agitation or aggression were to begin.
For your local area, check online to see if there are specific instructions for emergencies related to those with memory loss . Put the information in your bag.
DOWNLOADGrab ‘n’ Go Bag List here. Use as example to make your own list.
..Pictures are representations but not actual locations or people from the story.
BE PREPARED for the role of caregiver…my stories from my life as a spouse-caregiver are written in real time just like this story. Read the stories I share to become prepared for life in the world of Alzheimer’s!