Monday, August 21, 2017

Lewy Body - caregiver prespective

Yesterday, Mom came over for a birthday celebration for Ronin and Breen's 10th birthday. Robin went to pick her up and she insisted that he bring her canary because whomever is tormenting her (in her thoughts) wanted to kill the bird. Robin told her the bird would be fine but she insisted that if she left it alone in her room, it would be dead when she returned. Robin promised that if the bird died, he would replace it with another and in an instant, she was fine. 

She came over and spent a good part of the evening between delusions and lucidity. It is hard for the family to predict what she is going to say at any moment. I packed some food for her to take back with her but she said that "someone" will throw it in the garbage. I reassured her that no one would and she took it. 

For now, I am able to talk her out of her thoughts in the immediate circumstance but that doesn't last very long. Sometimes it's a few minutes; sometimes a few hours but not longer than that. 

I have to take her to her doctor on Tuesday morning for a check-up and she already has a list of complaints to give him - mostly that the staff are not giving her her meds. She is, in fact, getting all of her meds. A few months ago, she accused them of trying to poison her and refused to take any meds. I spoke to the pharmacy and asked for some alternative weekly rather than daily options for some meds e.g. Vitamin D. They offered some weekly versions so it doesn't feel like mom is taking a handful of meds each day (mostly vitamins but that didn't matter). 

Hopefully the doctor will be able to convince her that she needs some things. 

As I said in a previous post, each day is a new experience for me in my own understanding of the disease. 

Monday, August 14, 2017

Double digit grandbabies

It's been a fast 10 years. Or maybe I am getting older faster so that time seems to speed by. 

Breen turned 10 on August 8 and Ronin turned 10 on August 13. I remember clearly when they were born. It was the year I started my PhD program and knew I had to go back to Toronto but wanted to be in Winnipeg for Breen's birth and then head off to Edmonton to see Ronin. 

We took them on a Caribbean cruise two years ago and they seemed so small. Of course they were! It was such a great trip to Turks and Caicos, then on to Grand Cayman and then the Bahamas. They were so good with each other.

Two weeks ago, they were together again and they have both grown so much. I'm estimating six inches each. We'll be heading to the Spaghetti Factory for Breen's dinner and when Ronin comes next week, we'll do another birthday dinner for him. 

I am feeling old! But I am feeling lucky to be blessed with my four grandbabies. Not babies anymore - 14, 12, 10, 10. But they'll always be my babies. 

Saturday, August 12, 2017

Lewy Body: Signs I missed before diagnosis

So what exactly is Lewy Body Dementia (LBD)? According to some sources, LBD is also described as Dementia with Lewy Bodies, named after the scientist who discovered the protein that causes the disease. 

The Lewy Body Dementia Association in the USA has some basic information that would be helpful for those recently diagnosed and for the caregivers and family members of someone who has been diagnosed. 

There are several websites such as this so I am not going to say more about the disease or how it is being treated medically. I want to write about my experiences with my mother who was diagnosed with LBD in October 2016.

It's been quite a journey and not one I have even the slightest experience with. Prior to Mom's diagnosis, I had not even heard about this type of dementia. Considering that it the second most common dementia, there is little publicity about it. 

I recall getting Mom's diagnosis and immediately doing several internet searches to find out what this was about.  I have known people with Alzheimer's  and have a good idea of the short term memory loss at the early stages, progressing to more forgetfulness at later stages and complete memory loss at later stages. 

In retrospect, I fell into the same assumptions about Mom when I observed the early stages of cognitive decline. LBD does not present in the same way as Alzheimer's so I missed many cues. Once she was diagnosed, I could see clearly that the signs were all there. 

So what were some of the things I noticed and how long did I see them but not really? Two to three years prior to her diagnosis, I she started asking me to help her make decisions about her investments. I gave her recommendations as if I was dealing with my money but made no final decisions. She called her financial planner and made the transactions, explaining to him what she had decided. Then she'd tell me about her conversations. He confirmed that she had the conversation. 

Then it was paying her MasterCard each month. I did that online but she called at the time the bill was due to ask if I paid it and wanted me to send the statement to her home so she could reconcile the slips. All good. Then she gave up her car and Robin gave Robin a grocery list each week of things she needed. I cooked several meals each week and gave to her. She got fussy if the containers were not labelled. I later bought single serve containers and had to label each one of 10-12 each week. Then it was appointments she needed to be reminded of so I told her to use a monthly calendar (which she did anyway) but she started using two calendars and a notebook or two so that she forgot which one she wrote in. 

As you can see, the list went on and on. I was frustrated at times, thinking that she was unloading more and more of her responsibility to me. She forgot or misplaced things constantly and I chalked it up to forgetfulness or laziness. The one thing she never forgot was her finances. She could tell me down to the last penny how much money she had, what was on sale at the grocery store that week and how many bonus points she would get if she bought something on sale. 

Hindsight, as they say, is always 20/20. She forgot many things but not her money so I missed all the signs that I am now seeing. She is quite bright and was able to do quick mental calculations previously. I am surmising that all her cognitive energy was focused on one thing when she started forgetting. I even recall saying that at least once a month - that she seems to be forgetting everything except her money. I said it mostly in frustration. I can see now that it was her way of coping. 

More to come...

Sunday, January 01, 2017

Happy New Year 2017


To family and friends, wishing you all the best that the year will bring. 

2016 was the best of years and the worst of years but I will choose to focus on the best while using the worst to learn some life lessons. More about this in future posts. 

Sunday, September 18, 2016

Living in a nightmare or an alternate universe

Ir's now exactly two weeks since my wonderful Maltese and Italian vacation and I feel like it was the perfect calm before the proverbial storm that is now my life.

My mother called my on Thursday to ask why I was late picking her up. Now, that is not an unusual call because Robin and I pick her up to take her to our home for the day or to take her out for some occasion or other.

Thursday was unusual because she thought I was to pick her up at 3:00 pm (it was 3:30) and I must have forgotten. The other unusual thing was she called my cell which she almost never does. I asked if she meant to call Sophie and called me by mistake. She said she didn't make a mistake.

After a series of questions from me, with her answers sounding even more bizarre (I was supposed to pick her up in a white car which I don't have and I would be wearing a black hat as a disguise because I didn't want anyone to recognize me), I told her to get dressed. and I'd take her to the hospital.

We went to the Misericordia Hospital at about 6:00 pm. All the while in the waiting room, Mom was acting strange (thinking that someone was talking to her and watching her). I was certain she had a urinary tract infection, but after 9 hours and a bunch of tests, she did not have a UTI. The doctor said they could not find anything physically wrong and after 9 hours in urgent care, they transferred her to the Victoria Hospital at 3:00 am on Friday for further tests.

On Friday afternoon, an ER doctor visited her and asked some questions. Then a Psych nurse came a bit later and asked some more questions. Then a psychiatrist saw her and after talking to her for 10 minutes, he diagnosed her with depressive psychosis and started her on respiridone - an antipsychotic medication. Now, I am no medical doctor, but I don't think you can diagnose someone with a major psychiatric disorder like that within 10 minutes.

I went home and searched the term and how long a doctor would have to be seeing a patient to come to such a conclusion. It takes months of treatment and observations. Armed with that bit of information, I went back to the hospital yesterday (Saturday) and asked the nurse about the diagnosis. She said that the doctor was only making an initial observation. I asked if he should have started her on antipsychotic meds if he was not clear about the diagnosis. She said she would speak to him.

This morning a third doctor came to access her. His general observation was that the health care system is not adequately prepared for people living so much longer so many elderly people (over 80) are given a whack load of meds they either don't need or are given dosages more appropriate for people in their 60s. At the end of his consult, he said she would be sent to the psychiatric unit at Seven Oaks Hospital. That is clear across town for me - at least a 45 minute drive - but if that's the only place for her, we had to agree.

Mom was transferred at 3:00 pm and by 4:00 pm, she called to say that she was in in a bed in a screened off area and it was noisy. I asked her to let me speak to the nurse on duty and he disinterestedly said that her bed was an overflow area in a lounge and she would stay there until a bed was available. Imagine my shock!

Robin and I left immediately and drove over to the hospital to see that Mom's bed was worse than she described it. The bed she was given (read "bed" with a hefty degree of sarcasm) was literally a bed - in a lounge area, partitioned off by a privacy screen, right by a doorway that kept slamming every time someone went in and out of the area. It was beyond surreal. I asked to speak to the nurse on duty who calmly informed me that there was no other space available. Equally calmly, I said I was going to sit there until the found her a bed. She said that there was likely one on another floor but it only received patients from Monday to Friday. I guess people don't get sick on weekends.

I asked to speak to the floor manager who came a few minutes later and told m there were no beds and it was only a temporary situation for a couple of days. I asked if this would be okay for her mother. She said they had nothing else available I said I would take Mom home and bring her back tomorrow. She said mom would be considered discharged and would have to start over in the database. I said it was inhumane to treat someone like this, let alone an 87 year old woman. She threatened to send mom back to the ER. I called her bluff and agreed that the ER would be better than a screened off area in a lounge. She asked me to wait for a few minutes while she consulted (don't know with whom). I said I was not going anywhere until my mother had a bed in a room. A few minutes later, they had a room for her. Guess how they got it? They asked another patient to trade spaces. I felt bad for the young woman but not bad enough to tell her to keep her room.

The last few days have been a nightmare! I took my mother to an urgent care centre to be treated for what I thought was a UTI (hence the confusion) and two days later, she is in a psych ward and no one seems to know that the heck is going on.

Here is what I learned so far (and it has been a nearly vertical learning curve for me):
  • If you need to be admitted to the hospital for a psychiatric condition, your name goes into a central database and you have to take the first bed that becomes available at any hospital. It's all about how the system works. Family needs, desires or support is given no consideration. 
  • The elderly are seriously over-medicated and health care practitioners don't seem to communicate information to each other.
  • If your loved one does not have someone advocating for them, they'll be lost in the system
  • Health care workers are so over-worked, that many of them become desensitized to the patient's needs.
  • If you are an advocate, you have to be incredibly strong and persistent or you'll get absolutely nowhere. 
  • Doctors are not gods - even though some of them think and act as if they are.
  • Trust your intuition if you are an advocate; if something doesn't feel right, it likely isn't. 
More to come. 

Thursday, September 01, 2016

Canada: Montreal and home

And so it was. We crammed our suitcases to overflowing, checking and weighing each piece of luggage and hand luggage to make sure we were not overweight. We were not, but the suitcases are very heavy! We went off to the Roma Termini in plenty of time to get the Leonardo Express to the airport. 
Roma Termini
The flight left on time and was very uneventful until we got to the Montreal airport. I have traveled to many countries through many airports, but I have not ever seen this. This was the scene at the Montreal Trudeau airport when we arrived in Canada today. 
The lineup just to get into the terminal started at the door of the plane. It went through the hallways and by the time we looked downstairs, we could hardly believe what we were seeing. We thought for sure it would take us 2-3 hours to get through the line. 

Amazingly, we went down the escalator to join the massive line, only to see that there was a much shorter line for Nexus card holders. By much shorter, I mean that there were 10 Nexus terminals so the three of us (me Robin,Sunita) went to one each and completed our immigration processing in less than 10 minutes! 

I paid $50 for the Nexus card which is good for 5 years and it is by far the most valuable $50 I ever spent. The card has saved me hours and hours over the last few years. If you do not have one and you travel even a couple times per year, apply for one. You will be forever grateful you did. 

Montreal airport
Finally on the way back to Winnipeg and home. It was good to be away, but it's always good to go home. 

Wednesday, August 31, 2016

Italy: Rome - Colosseum, Spanish Steps, Shopping

Lots to see and do today as it's our last day in Rome and we are trying to squeeze every bit of excitement and culture from the day. And oh yes, and power shopping too. 

Robin and I had an early breakfast and headed off for our 10 minute walk to the Colosseum. Like I mentioned in the previous post, Hotel Hiberia is in a very good location to walk to many sights. 

Apparently, in its heyday, it could hold upwards of 80,000 people. A lot of it has crumbled due to natural disasters but it is still magnificent, even after nearly 2000 years. I'll let the pictures speak for themselves. 

We walked back along the narrow streets to the hotel and halfway there, we encountered to most terrific thunderstorm with lashing rain. We had umbrellas but the wind was so strong that they turned inside out. They became water collectors rather than water repellents.

We took shelter in a leather store with tons of lovely handbags crammed into a small space. I found several bags - one of which Sharm wanted (se texted a picture). Of the ones I liked, I could not decide on a final selection so I did the next best thing - I bought them all!

Sunita and the kids had gone off shopping by the Trevi Fountain and they also got caught in the rain. We found a deli, ordered some food to take back to the hotel and ate our lunch in our rooms.

Dinner was at the Al Caminetto Restaurant. We were sitting outdoors when we heard a lot of shouting and quite a commotion. In short order, our server bolted from our table in a speedy gallop. When he returned a few minutes later, he told us that an older Asian man was robbed. The thief cut the money belt off the man's waist and ran. The daughter who was probably in her 40s, chased after the thief shouting while she was running. A server from a nearby restaurant joined the chase with our server and they managed to tackle the thief to the ground and retrieve the money belt.

All was well, after all. The owner of our restaurant nonchalantly mentioned that thieves are quite common in Rome. According to her, they target Asian people especially because they (Asians) do not generally use credit cards and will walk with wads of money.

Poor Ronin got  scared and wondered if the thieves would target his money pouch (similar to Grandpa's that he is now wearing).

After dinner, we headed back to the Spanish Steps which I know from the movie Roman Holiday starring one of my favourites - Gregory Peck, also starring in another famous To Kill a Mockingbird).

A stop at La Paloma for a gelato finished off the night before we walked back to the hotel to jam our suitcases and weight them. It's going to be tight for weight.

Tuesday, August 30, 2016

Italy: Rome - Pantheon, Fountain of Trevi

We left Praiano on the local Praiano/Positano bus at about 8:00am. Our suitcases were very heavy because of all the preserves, balsamic vinegar, wine, candies, olive oil and ceramic containers. With a suitcase with broken wheels, it was quite a job to climb the 69 stairs to the road with suitcases weighing almost 50 pounds each. Fortunately there were platforms on the way up where the steps turned every so often. 

Then it was an effort to take them from the bus stop in Positano to the ferry docks. There are steps everywhere so there is absolutely no avoiding them. I really don't know how someone in a wheelchair would manage living here. 

We boarded the ferry to Salerno with a stop in Amalfi and arrived in plenty of time to get some lunch and wait for the train. While we were waiting, a "nice" gentleman (yes, there are a lot of "Nice gentlemen - and I use the words "nice" and "gentlemen" very facetiously) asked where were going and if we needed help taking our suitcases to the platform. We declined and waited for the board to post the departure platform. After several minutes, he came back and asked again. We declined a second time, knowing full well that he was not asking just to be nice. 

We started moving our suitcases toward to stairs and he grabbed one of them to "help" us to the platform. We kept telling him we didn't need help but he disregarded us and took one of them up. When he arrived on the platform, he demanded 5 Euros for his assistance. I told him No but he raised his voice and walked over to Sunita making the same demands. She also told him No. I argued with him that we DID NOT ask for his assistance, so he would get nothing. He then demanded that we give him our loose change. I told Robin to give him 1 Euro from a little change wallet he had in his pocket. The man got indignant. But after the theft in Malta, I was in no mood for a shakedown. I told him to leave and he left in a huff, muttering something. I didn't really care. 

We arrived at the Roma Termini station and had another shakedown with the taxi driveer but we paid the 30 Euros for the 5 minute ride and got to our destination - Hotel Hiberia - an old but cute hotel with an ancient elevator which has wrought iron doors so that we feel like you are in an old movie.  

We headed off to Piazza De Navona and wandered around for some time just soaking up the history and culture. This is quite amazing to have read about such places and to be standing on the spot. 

Then it was off to the Pantheon. This building has been in use for 2000 years! Hard to believe that we could just walk right in and see people still praying in here. Makes any architecture in Canada look like an infant.  

We walked for quite some time along some of the narrow streets of Rome gazing at the buildings like regular tourists.  

Then it was off to the Fountain of Trevi. I have seen the movie several times over the last few decades. I also remember Dad singing the song when I was a young kid. Now I am standing in front of it waiting my turn to make a wish. In the song, three people threw coins but the fountain would only grant one wish. I am more hopeful now that we'll all have our wish granted. Ronin's wish was granted from a week ago. He wished that he would return to the fountain and here he is! The fountain does grant wishes! 

We stopped at Osteria Oscar which was on a narrow street that looked like the width of an alley in Canada. We ate outside as many restaurants have seating just outside. It's not a patio - just chairs and tables on the road. Everyone does it so we did too. 

Chicken Parmesan

Veggie soup


Eggplant parmesan


Pinocchio Ronin 
We walked back toward the Trevi Fountain on the way back to the hotel. The hotel is in a perfect location to walk to a lot of places nearby. It's about 100 metres to the Prime Minister's residence and the area is supposed to be one of the fastest growing (old) areas. The fountain was quite crowded for an evening but we jostled our way past the hordes of tourists (including us I suppose) and strolled back to the hotel.