It’s hard to believe that I last posted 3 1/2 months ago. Oh, if I only knew then what I know now. My mom is gone. I learned a great deal in that time and I am eager to share it because I had to fight for every bit of information to help my mom and much of it came very late in the game. This still has me very upset. My goal is to continue telling you of our journey. I think that you will find the last few weeks of her life in some ways the most interesting. I learned things that were not written in any book or pamphlet. I hope that our experience may one day be of some help to you if your loved one is in a similar situation.
It certainly has been a stressful month at our house. My mom has experienced a myriad of symptoms with her worsening dementia and I had been trying desperately to get her seen by a dementia specialist. He is booking months out. We are on a waiting list.
Last week my mom’s physical therapist wrapped up his session and told me that my mom reported to him that part of her vision in her good eye was obstructed. He did not think it was a stroke. I called the ophthalmologist and we made an appointment for first thing the next morning.
It only took a minute in the exam room for the doctor to realize that something more ominous was happening. He sent us straight to the city to be seen by a retinal surgeon. He and his partner examined my mom and told me that she had massive hemorrhaging inside both her eyes. Massive. And her retina was detached in one eye.
They determined that she had macular degeneration gone bad. She had an eye exam with dilation 6 months ago and everything was fine. She has many underlying conditions that prevented immediate surgery from being an option. After a quick prep they injected both her eyes with a medication to stop the hemorrhaging. They injected a gas to push the blood away from the front of her eyes, where it was obstructing her vision. They also used a syringe to draw fluid out of her eyes. It was a garish procedure to watch and she was exhausted after nearly 4 hours in the office. She was confused, scared and not really sure what was happening.
We made the trek home to wait. Time would tell if her eyesight would recover.
Three days later, my mom awoke with a bad headache, dizziness and nausea. I checked her oxygen level at home and it was low for her. Her pulse was very slow. I called the weekend physician line and they advised me to bring her to the ER.
In the ER it was immediately determined that her blood pressure was 220/87 with a pulse of 46. She never has high blood pressure. They did an immediate CT scan of the head and determined there was no stroke. But they did not have a neurologist on staff and it could have been a cerebral event that they could not determine.
They reattached the blood pressure cuff and turned on the heart monitor. I pointed out that they put the cuff on upside down and backwards. A decision was made to send my mom to a hospital that had a neuro unit.
While being transported in the ambulance she suffered an unknown event which caused a complete psychological transformation and she was wheeled in yelling, combative and disoriented. She tried to climb off the gurney. She pulled ID tags off the nurses. She pulled a stethoscope out of a pocket. She refused to agree to a CT with contrast or any testing at all. She claimed she was in a gas station. She was finally given a medication to calm her down before she hurt herself and was wheeled away, still yelling that she needed to see their credentials.
Last night I put my mom to bed at 8 PM. Her hearing aids, glasses, water cup and slippers were all within reach. At 7:30 AM her motion detection alarm went off, indicating that her feet went over the side of her bed. I ran from my room to hers.
When I arrived, she was holding her glasses and one of the lenses was gone. How far could it go in the minute it took me to get to her room?
She, of course, had no idea where it went. She thought it went missing the night before, which was not the case. I pulled out her nightstand, took the bed apart, looked under her recliner. My husband looked around as well. No luck. I gave her an old pair of glasses to wear in the interim and fed her breakfast. Continue reading The Glass Slipper
Two weeks ago I was sitting at the breakfast table with my mom. She can no longer take her morning meds without supervision. I helped her get them to her mouth and held her coffee for her.
My dad walked into the room with his breakfast and my mom turned to me and whispered, “How could that be my father when my father is dead?” I did not answer.
This has been a really tough couple of weeks and we have been seeking out the help of a new neurologist who specializes in late-stage dementia. Continue reading Connecting the Dots
Today I intercepted my diabetic dad as he tried to eat a dog treat, thinking it was a cookie. He still wanted to eat it after I told him it was for the dog.
I saw my mom trying to get up from the dinner table and asked her if she was ready to get up, so that I could assist. She answered that she would come whenever the dentist wanted them. I told her we didn’t have an appointment tonight. Not sure what she was thinking. We have not mentioned the dentist in ages.
She sat at the table for a few more minutes with my dad and then she tried to get up again. I asked her if she wanted a hand and she asked me if the foot bath was ready. We have never done a foot bath and I never figured out what she meant. Continue reading Snapshots from Today
It is challenging for me to figure out how to best deal with bathroom issues of two aging parents, both of whom have some level of incontinence and dementia.
When a child in diapers has had a “big blow out” you can peel off their clothes in the shower and wipe them down, give them a bath, wash out their clothing and get them put back together.
I am trying to figure out how to save the dignity of my parents when they are in similar situations. Continue reading Poop Happens
I am learning on the job, so to speak, while caring for two parents who have different kinds of dementia.
My mom’s case is more complex. She displays what I would call “tactile misperception.” These misperceptions are often alarming to her and she will yell in fear or anger. She often spends hours, if not days and even weeks, stuck on the same one. In some cases they get recycled.
Here are a few examples.
Upon taking out my mom’s hearing aids, she will shout “watch out” as she cups her hands and tells me that they are falling apart and I should catch the pieces. Then she hands me imaginary pieces and asks if I have gotten them. Continue reading Tactile Misperception
Don’t be afraid to think outside the box and get creative.
One day, my daughter was asking my mom what kinds of toys she played with in the 1940’s. My mom replied that she did not have many toys at all, but she and her friend spent hours playing with paper dolls of a certain movie star. I found the dolls on eBay and bought them for her. The originals were framed for her room. Before I framed them, I scanned one, printed it out and laminated it, so that she could use it as a bookmark or little memento.
Our world today is so different than the world of someone who grew up during the Great Depression. We are swimming in material items, many of them new and it can be overwhelming.
Find a mixing bowl or decorative item that is a blast from their past. Second hand stores can often be just the place to find just the item that will evoke a happy memory.
If your loved one has been uprooted and lives many miles from where they grew up, a subscription to their local hometown paper could be a source of great delight. Continue reading Reinforcing memories & bringing the past alive
Finding activities for seniors can be quite the challenge. You may have to try several things before you find success. Be ready to change the activity midstream to try to turn a frustration into a win.
Last week I was decorating cookies with my parents. We iced them and then the decorating ensued. My dad became quickly frustrated because he was quite the artist in his younger day, but he found that his hands now tremble too much to be able to do the decorations. We quickly changed gears. I had him work on just the icing, which is a gross motor skill, and had my mom continue with the detail work, fine motor, which delighted her.
Sometimes the best intentions can result in a major fail if we are not on our toes. Continue reading Exercising the mind with games