2014 was a big year for our family all around, and a true mix of the good and the bad. We welcomed a new life into our family in Sept but earlier in the year we began to watch one slip away. After years of gradual personal and physical decline my mother was diagnosed with Lewy Body Dementia. Slowly but surely we’re now witnessing this once vivacious woman drift quietly, but quickly, into her own world.
I’m struggling with how to organize and write this particular blog so forgive me if it’s more disjointed than most. It’s an emotional topic for me and trying to look at it both clinically and personally is a tough balance. I’ll start with a breakdown of Lewy Body Dementia and share a bit of my mom’s story before I move into how it affects our relationship with her as both a daughter and mother of her grandchildren.
Lewy Body Dementia (LBD) is rarely talked about but apparently pretty darn common among our elderly population. It’s garnered some media attention in the last year or because of its effects on famous personalities Kasey Kasum and Robin Williams. The disease itself encompasses both mental and physical symptoms and is usually a ‘possible/probable diagnosis’ based on different criteria. It can’t be definitively diagnosed until an autopsy is done after the patient passes on. A great resource I’ve found, if you’d like to learn more, is the website: http://www.lbda.org/
For those of you who haven’t heard of it, LBD is basically a combination of Alzheimer’s type symptoms combined with Parkinson’s. Patients can experience any combination of hallucinations, personality changes, paranoia and memory impairment. They also deal with tremors, weak muscles, and trouble with co-ordination. It typically progresses over the course of 4-8 years from initial onset and most patients are older when they start experiencing symptoms. It is progressive and there is no cure.
My mother’s journey with LBD most likely started back in 2009, just before I became pregnant with V. At the time she had just turned 60 years old. The changes were small to start. She’d forget little things, like conversations we’d had about plans for the weekend. Always known as ‘blunt’ she also started losing a bit more of her ‘social filter’. You know those things you think but don’t say? About your boss/co-workers, the person in front of you in line at the grocery store, acquaintances? She didn’t have that ‘off button’ anymore and would sometimes say mean or inappropriate things even to close friends or family. She also started to trip, and slip more often. Falling off ladders, missing that last step coming down the stairs or slipping when getting out of the shower. Nothing big, maybe a bruise or two but mostly catching herself and experiencing one heck of an adrenaline rush. This continued on a pretty even keel for a year or two. After taking early retirement she chose to sell her house, moving to an ‘easier to manage’ apartment, and continued on as normal. Driving around, visiting family, and volunteering, to pass the time.
Then the changes became more noticeable. She became aggressive and unpredictable behind the wheel. So much so that V wasn’t allowed in the car with her anymore. She could also become aggressive with people,often with very little warning. We never left her alone with V although we made an effort to see her at least once a week. She always felt badly afterwards but it was like dealing with another child. She had time-outs and people had to explain to her why her behaviour was inappropriate. As her child that was hard to do. You never picture having to sit your parent down to explain that ‘hitting is bad’ but sometimes it’s what has to be done. Honestly it’s a bit easier to look back on now that we know she wasn’t truly in control of her actions.
In the summer of 2013, she was asked not to come back and volunteer when her ‘filter’ deteriorated to the point that her language was inappropriate and confrontational. We started visiting the doctor for memory tests and she was referred to a geriatric specialist (at 62 years old, about 15 years younger than most patients). They did some testing and thought that the changes she had demonstrated may be due to small strokes in her frontal lobe. Unfortunately there wasn’t much to be done. Her results were a little abnormal but at that point they weren’t bad enough to warrant further care or treatment.
The bigger changes started in later 2013/early 2014. When we went Christmas shopping she couldn’t remember her PIN number for her debit. She start walking incredibly slowly, shuffling her feet as she went along. She would forget dentist, and doctor appointments. She kept forgetting if she’d fed her beloved cats, resulting in extreme overfeeding and grossly obese animals. We were starting to become very concerned and she herself called the doctor to arrange another round of testing.
Before those tests began, larger issues started to unfold. In Jan 2014, after she never showed up for a shopping date, we discovered that she’d been in two car accidents in one day, totaling her car. ‘Oops!’ she said. At this point I called the family doctor on her behalf and requested that they contact the ministry to pull her license. She was a danger to others and herself on the road. This was an incredibly hard decision to make and I knew it would break her heart. By taking her license we were limiting her freedom and mobility but it had to be done. I would never have been able to forgive myself if she’d hurt someone else or herself on the road when it could have been prevented.
The ministry allowed her to take a driving test in order to try to regain her license but she wasn’t able to complete the task safely and they ended the evaluation early. We got to read the report afterwards and it was heartbreaking. The woman who had had a spotless driving record until approximately 5 years ago would never, ever have her license returned to her. She was incredibly upset by this and called our family doctor daily to see if they could get it reinstated. Not because she was persistent, but because she had forgotten she’d already asked.
The doctor had her come back in and repeat her testing and we discovered that she had deteriorated significantly. They started the process of having her evaluated by CCAC (Community Care Access Centre aka the people in charge of setting up assisted/long-term care) because we were worried about her ability to care independently for herself. She had lost at least 20 lbs at this point and was unable to tell you what she’d eaten for meals, when she’d last done laundry, or gone shopping. We were prepared for this to take several months and were digging in for the long haul when unexpected events shifted us into high gear yet again.
Last April 1st, while trying to sleep off my morning sickness, I received several text messages from my Uncle. They had that carefully worded tone of ‘don’t panic but please call me’. When I called him back he told me that my mother had collapsed inside the bank when he’d taken her for some errands and they were now hanging out in the ER. I called A to drive me over and spent the rest of the day waiting for test results, trying to keep her on the bed. Turns out she’d broken her hip and unfortunately with her memory impairments it was a challenge to find out how, and when she’d actually injured herself! Memory issues are embarrassing when you can still remember enough to realize you’re forgetting. As a result, rather than admit she had no idea, she was making up different stories for each person who asked. We used bits and pieces of these stories, along with her bank records, to piece together how it happened. If you asked her; she was hit by a car when she was grocery shopping, or alternatively a young girl had pushed her into the parking lot. From what we can actually deduce, we think she was walking in the parking lot, coming home after a grocery shop on the 31st of March. A car must have come around the corner and she’d tried to step up on the curb to get out of the way. With her decreased mobility she didn’t step up high enough and fell hard on her left hip, fracturing it, before hobbling off home and then collapsing in the bank the next day when it was finally unable to support her weight. She underwent surgery to repair the hip the next day and spent two weeks in the hospital rehabbing and undergoing evaluations.
The broken hip was tough, it’s hard to see your parent suffer in pain, stuck in a hospital bed. It was also a blessing in disguise. After the staff at the hospital realized that she was unable to complete simple daily tasks (eg. Getting herself up and dressed in the morning) they expedited our application with CCAC and we were able to have her evaluated for assisted or long term care. The evaluation came back quickly with the recommendation that she be placed in long term care, on a secured floor. Let me recap this for you. My mother went from living on her own, to a secured (aka locked down) floor in a nursing home in two weeks flat. Talk about quick progression. With the fall, memory impairments and other cognitive issues she would require 24/7 monitoring. At the age of 30, my sister and I had to make the decision to put my 64 year old mother in a nursing home. All I kept thinking is that she left her home to do her banking and now she’d never be going back. We had to enact her Powers of Attorney, give notice and move her out of her apartment and help her adjust to new surroundings. My head was spinning…oh and I was also 12 weeks pregnant with Mr A and already experiencing complications. This summer was not going as I’d planned. Luckily our family pulled together, put our heads down and got through it all.They did the majority of the heavy lifting (no pun intended!) so I could protect baby A. I feel blessed to be a part of such an amazing team!
Mom had trouble adjusting to her new surroundings and would often call crying or yelling, demanding we pick her up and take her home. She would pack her suitcase every morning with all of the momentos and belongings we’d brought to her and wait for us to pick her up. She would cry like her heart was breaking when every day we had to tell her she was staying. It was that terrible moment in time where she couldn’t remember enough to live on her own, but remembered enough to know that this wasn’t a place she wanted to be. More than once I’d hang up the phone in tears, but I’d have to remember as much as the conversation hurt me, my mom wouldn’t remember it 20 minutes from now. I wasn’t even her primary contact for these demands, my uncle had it 10x worse and handled it with amazing grace considering it’s his older sister he’s watching drift away. Nowadays she’s moved past this phase and is content to sit and think. She talks to the nurses and her biggest upset occurs when her parents aren’t calling her back or my uncle brings her the wrong kind of fish and chips. It should be noted here that my grandparents passed on some time ago, and she hates fish and chips. The nurses tell us it’s normal for dementia patients to ‘talk’ or ‘phone’ their deceased parents and we try our best not to argue with her. If she tells me about how they blew off her dinner invitation I’ll agree that it wasn’t very nice but maybe they’re busy and will try to make it another day. It’s those same little white lies you tell your toddler…glossing over the truth so you don’t have to upset them.
Mom has also physically declined quite rapidly and within a year has gone from walking independently, to a walker and now a wheelchair. She can still walk but needs to be supervised by someone in arms reach as her legs suddenly give out and she’s already had several trips to the ER and stitches from recent falls. Her arms do occasionally tremor but are mostly just quite weak. She can’t hold either of the boys for very long but she sure does enjoy looking at them. It’s those sweet moments we have to savour because with her progression it’s hard to know how much time we have to stockpile those memories.
Family is very important to both A and I. When we found out we were expecting V, way back in 2010, we discussed how we wanted our child/children to grow up creating strong relationships with his/her extended family. We were excited for holidays, family trips, parties etc. celebrated with aunts, uncles, cousins and, of course, grandparents. It’s worked out beautifully so far and V has loving relationships with all of his family on both sides. I’m sure A will grow into these fantastic, nurturing relationships as time goes on as well.
The challenge we now face, is trying to help the boys build some type of relationship with my mom, and create memories that they’ll carry with them when she’s no longer here. It’s hard to think about and definitely more of challenge than a ‘typical’ grandparent/grandchild relationship. With V’s other grandparents he visits regularly, plays and talks with them. They, in turn, babysit him, read him stories, run around outside with him and will soon be doing the same with his little brother. My mom is no longer able to carry a conversation, read, write or hold them. She will likely be gone before A is able to form memories to look back on. It’s something I don’t like to think about. I remember how excited and proud she was when we found out we were expecting V, all of the plans she had, and how little time she had to fulfill them before LBD stole that ability from her.
Sadly our visits with her are few and far between since we have to find a time when both boys are healthy AND her floor isn’t experiencing an outbreak of their own. This means that baby A has only been able to see her twice in his very short life (boo to being born at the start of cold and flu season!). She also becomes easily overwhelmed by the boys. They are a lot to process when your typical day is very orderly and quiet. I wasn’t able to visit when I had the tube and recurrent infections since they can easily be transmitted in a medical environment and what was an inconvenience for me could have killed some of the residents on her floor. There is a lot of guilt associated with our lack of visits and as much as I try to convince myself we’re doing the right thing it’s hard to know she’s there by herself.
What is also hard with the visits is thinking that these are the memories that V will have. He won’t remember the smiling Grandma who took him shopping as a baby, shared Happy Meals with him as a toddler, or ran around with him at his second birthday party. What he’s going to remember is the quiet, skinny little lady who smiled at him from her wheelchair and shared her chocolate bunny. Sweet memories yes, but not what I hoped for either one of them.
I try to take lots of pictures when we do visit so that when A is older he’ll be able to see he was snuggled and loved on by his Grandma, even when he’ll likely not be able to remember for himself. It’s another one of those moments in life where you just want to scream about how unfair it all is, but you can’t. Crying won’t help and it just takes energy and time away from all the positive moments you can squeeze out of a really crappy situation. I’m 31 years old, and she’s only 65! I shouldn’t be watching her fold in on herself, losing that ‘larger than life’ personality that used to light up a room. My boys are babies and it’s not fair that they won’t get to know the ‘real’ her. The whole situation sucks but dwelling on it isn’t going to make her better and it just makes my heart-break that much more when I’m sitting there holding her hand. So, in the moment, you try to let it go, paste a smile on your face, and do what makes her happy. Then, suddenly, while watching her savour her mandarin orange or chocolate chip cookie, the smile isn’t quite so forced and you find yourself truly enjoying the simple moment, kind of like you do when you watch your children sleep. It’s life at its most basic and that’s not always a terrible thing.
As I said, not my most coherent post but this one holds a heavy weight. It’s hard to become a caregiver to a parent, especially when I have my own young family, but when it comes right down to it you do what you have to. My mom definitely had her faults but they were part of what made her ‘her’ and slowly she’s becoming what I can only describe as a ‘blank slate’. Although I already grieve the loss of the woman she was (annoying habits and all!), I don’t want to waste my remaining time with her mourning what still remains. Going forward we’re really making an effort to see her as much as possible with the boys and I’ll try to go for longer visits with my sister when she drives down. I’m going to savour every moment and hold it close, creating memories and stockpiling stories (Fav so far: When she asked me for a cigarette and I had to remind her she’d quit oh…only about 25 year ago…). These are the things that I’ll be able to revisit and share even when she leaves to join my grandparents for dinner…wherever that is…