How Fading Memories Was Born
I have a Mom with Alzheimers and I’m also the grand daughter and great grand daughter of women who suffered from memory loss. Through my experiences with Mom and Grandma I’ve learned the importance of planning ahead. It’s a subject we want to avoid but facing challenges makes them easier to handle. No planning led to panic for Moms family when my Grandfather died and to my family when my father died It’s my goal with this first season of Fading Memories to help families navigate the emotions and challenges when faced with a diagnosis of dementia, Alzheimers or some other cause of memory loss.
A Family History of Memory Loss
Some background on my families issues with memory loss. I was probably a young teenager when Mom would tell me about my great grandmother. I’d hear stories about how she’d fill a plastic bowl and put it on the stove to boil. Mom would talk about how my Grandmother would have to drive over an hour to take deal with her Mom. Grandma did this while she still had teenagers at home.
I was almost 30 when Grandma started having her own memory loss issues When I look back on it I’m really surprised that she and my Grandfather didn’t have a plan of action since she had gone through this herself. Denial is definitely not a good plan but it seems to run in my family.
My poor grandfather contracted cancer and he fought it hard because as he said “I have to live to take care of your Mother”. She outlived him and my aunt took care of her Mom till the day she died. That so called plan ruined my aunt financially.
Looking Back & Seeing Clearly
I look back over our family history and am shocked to realize that my Mom was likely showing signs of her own illness at the same time my Grandmother was in cognitive decline. This was in the late 90s, early 2000s. Mom must have suspected that she had memory issues because she became very good at hiding the signs of them. We had a business together and one day. I said “you used to have daffy moments a couple of times a week now you’re having them a couple of times a day”. Mom just shrugged off my concerns.
Mom would sometimes take orders from clients, not write down details then forget what they had requested. It became painfully obvious that I had to check in on discussions to avoid having to call clients later to get the details on their order. One day I found an order Mom had taken with no instructions so I asked her about it. She looked at it and said “I didn’t take that our employee did”. Mom and the employee had very different handwriting which made this a stunning and frightening moment. I didn’t know what, if anything, I could have done at that point. I know Mom had told me she didn’t want to end up like her Mother. At that point I was pretty sure that is exactly what was going to happen.
The Next Generation
My parents retired in early 2005 . Not having to watch over everything Mom did without her awareness was a relief, but I worried the lack of stimulation would accelerate her memory loss. Mom deserved to have the time to do the things she enjoyed so I accepted their retirement as a good thing..
About 18 months later my Dad ended up on dialysis. This was the point we should have had a family discussion about their end of life wishes. We should have discussed plans for Mom if Dad were to go first. I’ll never know what motivated my parents to go on as normal because we never had that conversation.
After 2.5 years of dialysis, Mom went through the testing to see if she could donate a kidney to Dad. Not entirely surprising, she was rejected due to cognitive issues. That was the summer of 2008. I thought this was when she was formally diagnosed but to my complete surprise I learned she wasn’t diagnosed until September 2011. (Dad did get a new kidney in March of 2009.) Mom subsequently refused to go to the doctor about her memory thinking, mostly correctly, there wasn’t a lot they could do.
Can I do Something About Alzheimer’s?
There are things you can do to prevent or slow the progression of Alzheimers. Getting diagnosed early and doing everything you can is better than ignoring such a serious issue. As I contemplate having my own testing, I fully understand the fear that prevents us from taking action. I don’t have outward signs of cognitive issues but even so, fear is making me reluctant. I’ve been told to get a baseline brain analysis or even a cognoscopy. I will get the test. Getting this podcast off the ground took more time than I planned so I’m behind on many things. When I do get the test I hope to make it part of an episode. Hopefully, this will help alleviate fears.
When It All Changed
From spring 2009 on things seemed to progress as normally as aging seems to progress. The summer of 2016 is when it all changed. Dad started talking about “planning for the end”. I was aware his donated kidney was not functioning well and he didn’t want to go back on dialysis. I should have asked what plans were in place for Mom, his end of life care and other important details. In my defense, I was dealing with a broken collar bone from a bicycle accident, a husband running for city council and I foolishly thought we had a couple of years left. That was not the case.
Dad seemed pretty normal on November 1st 2016 when I had lunch with them. When I texted him on November 8th about hubby’s election loss all seemed fine. Returning from vacation on November 29 I found a nightmare I didn’t expect and was unprepared to handle.
A New Normal
Dad thought it was 1998. I didn’t know what was wrong or what to do. We ended up forcing him to the hospital. I learned he should have been on dialysis for months and he thought he’d pass within a couple of weeks without it. The hospital wasn’t what he wanted but we didn’t know that. What else could we have done? Back in the summer, when he was talking about making plans for the end, I should have been aware of his mindset.
This forced our family to make decisions in a panicked state of mind because after a month in the hospital Dad was released. I had to find care givers within 24 hours. I was also dealing with my Mom who didn’t understand what the heck was going on. This season is focused on what to do when you have a family member with Alzheimers. Making important decisions in a rush is horrible, I’m thankful I had contacts and friends who helped me through that stressful time. Fading Memories is that friend when you don’t know where to turn.
While Dad was on Hospice and our parents had care givers 24-7, my sister and I had to determine what to do with Mom when Dad was gone. He assumed she’d live with me. Up until a month before he died I didn’t even have a spare bedroom!. Iit would have been impossible to work from home while supervising Mom. Had we talked about options and what was realistic before his memory went bad his last months would have been mush easier. To this day I’m still angry at him for making more assumptions than plans. Thankfully, I found a terrific memory care community for Mom, she got to keep her dog and she’s doing great.
Our New Journey
The transition to a memory community was rough. That day was worse than the day Dad died, Mom cried, and begged. She didn’t understand why we were doing such a horrible thing to her. She thought she didn’t belong in a place like that.
A place that is really nice, bright and naturally lit. A community that let her keep her dog despite the challenges involved. A home that protects her and cares for her every need No, she didn’t want to be there at all. While we understood how she felt, it was a necessary move. Had my parents done some research, maybe they would have realized a memory care community isn’t a horrible place at all.
I thought it would take a long time for Mom to acclimate, longer than the month or 2 that the executive director of the community suggested. Thankfully, he was right. I showed up one day to visit and Mom was trailing behind a woman who needed to use the phone. When Mom saw me she asked me to come with her. She had to help “her friend”. Hearing that had to be almost as good as hearing I’d won the jumbo lotto.
With friends, her dog to fuss over, Mom is happy and well cared for. This is the planning that my parents refused to consider. I understand that at first glance a memory community seems like a place you dump your family member. It may even seem selfish, but I’ve learned over the past year that this living situation is best for everyone. I work from home so I’d have had to hire a care giver. Someone to deal with Mom so I could go about doing what I need to do.
My sister and I are still learning how to navigate our new norma. Now we help care for Mom much more, handling her paperwork, appointments, etc. It’s a tough road because we know she’ll continue to get worse but we have a plan in place. A plan that should cover her for the rest of her life, allowing her to live with dignity and happiness.
During my first season of this podcast, I’ll do my best to inject as many personal stories as possible. I’m working on an episode I call Misty Tales, it’s about Moms dog; the challenges and benefits of having a dog in a memory community. If you go to our webpage you can record a voice message with questions or suggestions or just to reach out to someone on the same journey.
Follow along with Fading Memories for advice and stories about dealing with a loved one with memory loss. We’ll go on this journey together and hopefully we’ll be able to help each other along the way.