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.