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.
Any hospitalization comes with challenges. When the patient has dementia, it is even trickier. You know the baseline or regular cognitive abilities of your loved one so it is imperative that you or a representative is present as much as possible to be an advocate.
My mom told me she had a severe headache. She has had several, mostly small, stokes in the past. I called her primary care doctor and they recommended she go to the ER.
Once in the ER she was asked to rate the pain on the scale of 1-10. She reported it as a 9. She was immediately given IV Dilaudid. That was the first mistake. She does not process those types of medication well. She now acted so incoherently that it did indeed seem as if she had a stroke. Off she went for a brain CT scan.
The CT looked fine but they wanted to keep her in the hospital overnight for observation and to visit with the neurologist. My mom was kept on IV painkillers and her dementia was exacerbated to the extent that I was worried that she would never come back to her baseline. I kept trying to explain to the doctor that something was different, and that her cognitive abilities were higher than she was presenting.
The neurologist decided to inject the occipital nerve in the neck with Marcaine, to see if the pain in the head would resolve. In the meantime, too many days in a hospital bed left my mom not able to walk. After several days in the hospital she was released to rehab.
I got a call from the rehab facility the very next morning that they were taking my mom to the ER for another CT scan because they found her slumped in her wheelchair. They gave her all of her medication for the day at one time. She became worse because she was over-medicated.
Back the to hospital she went, this time for two days.
Then off to a convalescent center for a couple of weeks.
All triggered because of pain killing drugs that should not have been administered.
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
I had two experiences with my mom at two different appointments with doctors this week.
First, we saw a new neurologist to evaluate her worsening dementia and see what we could do to reduce frightening hallucinations and worrisome delusions.
I called ahead of time to ask if I could speak to the doctor alone at the beginning of the appointment and the scheduler confirmed that I could do that. I arrived with records and notes.
The doctor came into the waiting room and loudly announced “So the daughter wants to meet with me first.”
Just because someone is suffering from dementia does not mean that they have lost their humanness. They should be respected and treated with compassion and discretion. I can’t help but wonder if my mom knew that we were in there discussing her, but thankfully, on this particular day, I think that she was quite unaware. Continue reading Dignity and discretion with dementia at the doctor
There are good caregivers out there to help you. There are also many awful ones. If you had small children at one time, you were most likely very particular about selecting a babysitter for them. Caring for seniors is no different.
I have gone through six different caregiver agencies. If you are hiring, you have the best chance to get a good caregiver if you can offer them the same hours every week. I cannot do that. I need someone if I have grocery shopping to do or if one of my children needs to be driven somewhere. I cannot predict each week when things are going to come up so I get the caregivers who are either the new ones without regular clients or the floaters who pick up hours with clients such as myself. Money is an issue and I cannot afford to hire someone for hours when I do not need a helper. Continue reading Finding a Caregiver
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
The last few days have been particularly challenging from my perspective as a caregiver. Mom has been lost in a sea of confusion. She does not appear to be aware of it or distressed. She continues to say things that are just not grounded in reality.
I ran into her room this morning as soon as the motion detection sensor went off. The first thing she told me was that she did not sleep in her room last night. If she had slept somewhere else, the alarms would have indicated her movement. The next thing she told me was that a man came into her room and slept in there all night. Again, if someone had come into her room, the alarms would have sounded.
Later in the day we tried to do crossword puzzles but she was too confused to process any info. The conversation turned to knitting and she was an avid and skilled knitter for decades. I told our visitor that mom had made me many mittens over the years. She looked at me and told me that she didn’t remember that. I thought that perhaps if I found a pair for her to hold, the tactile and visual stimulation would be enough to elicit a memory.
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