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.
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
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
Caring for someone who is in a noticeable state of mental or physical decline or change can be quite distressing.
As a caregiver, it is your responsibility to expand your knowledge in many areas that will help you to better understand your loved one and adjust their care to meet their needs.
If there has been an insult to the brain, such as a stroke or if they have a degenerative condition such as Parkinson’s, your doctor may order a neuropsychological evaluation. These tests may take up to four hours to administer and will give you and the physician invaluable information. For example, if a stroke has occurred in the part of the brain that processes spacial relationships, then a decision must be made if that person is still driving. Strokes in other areas may prevent them from reliably administering their own medication or controlling their finances. Continue reading Neuropsychological evaluation
There is so much to say about medication, I’m sure this will be the first of many posts.
The #1 rule is to be fiercely organized.
My mom is on 16 different medications. My dad is on 10. They both have dementia and need everything handed out at the proper time.
I keep all medication hidden in a box in my bedroom closet. When the packages of medication arrive in the mail, if I don’t immediately hide them, my dad will see his name on the packages and put them into his room. Act fast and stealthily. Include clear instructions with med lists in this box in case of emergency. As the primary care giver you are most likely the only one who knows the system for refilling the pill boxes every other week. In case of emergency, someone else should be able to follow instructions precisely to ensure that no medications are mixed up.
- Keep a list of medications in a word document on your home computer.
- Include the patient’s name and date of birth.
- Alphabetize the list–this makes it easier for the physician to compare when meds are added or subtracted.
- Include dosage and time of day to be administered.
- Record the date the list was edited at the bottom of the page.