This article is mostly for those who’ve lost a loved one and are having difficulty moving forward. At the time of this post, it’s been 3 months since my husband died from Lewy Body Dementia and overall, I’m doing very well. I’ve been asked many times how I’m holding up as well as I am and as usual, those sorts of questions make me stop and think. I’m not totally sure why I smile more than cry, but I thought I’d share my survival plan with those struggling with the loss of a loved one. And, yes, I developed a plan after he passed away.
My mental health is too important to leave something this difficult to chance. Read the rest of this entry
I’m no stranger to grief. In my 59 years, I’ve buried all of my grandparents, both of my sisters, both of my in-laws, my father, and now my husband. The loss of the sister closest to me in age was particularly hard as she was my best friend and breast cancer took her way too soon. I watched her die over the course of two years and losing her changed my life. For years after her death, I marked every event in time as to whether it happened before or after she died. Her death shifted my world.
Losing my father was difficult too, but he was 79 years-old and for some reason, that made it more bearable. Read the rest of this entry
There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.
Stage One: Confusion
The caregiver knows something is wrong, but doesn’t have a diagnosis yet. Read the rest of this entry
Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”
Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. Read the rest of this entry
One of the more frustrating aspects of dealing with Lewy Body Dementia is the wild changes in ability often experienced by those who have the disease. Their abilities to function can bounce around more than a BB in a boxcar, throwing the caregiver into a constant state of confusion as to how they should prepare for what’s coming next. While I would never presume to predict the future for anyone dealing with this disease (or any other disease, for that matter) there are certain changes along the way that most will eventually deal with, unless their LO (loved one) dies suddenly. I refer to these milestones as “Game-changers.” Game-changers are tipping points in our LOs functioning that require us to alter our lifestyle in some manner. These are not day-to-day changes in function, but specific milestones that alter life dramatically.
These milestones will be different according to your individual situation, but seeing the changes experienced by others can provide food for thought for those starting this journey.
In the hopes of helping other caregivers understand the pivotal points that lie ahead for most, I’ve put together the following list of life altering changes we’ve faced in the last 8 years. (Feel free to share)
Game-changer #1– the diagnosis 2009/2011 Read the rest of this entry
Please Forgive Me
Dear friends and family,
I know I’ve been out of touch lately. I hope you realize it’s not by choice. No one would choose what’s going on in my life. But right now, I need to beg for your forgiveness and understanding.
Please forgive me for forgetting your birthday, anniversary, Christmas…
Well, you name it and I’ve probably forgotten it. It’s not personal. There are days I forget my own name. I leave milk out of the fridge, forget to pay the electric bill, I’ve even found myself driving down the road, forgetting where I was going. I’m blaming it on a caregiver’s fog that seems to have taken over my brain. Years of stress and anxiety are taking their toll and my brain is running at about 50% capacity. Please don’t forget me, even if I’ve seemed to have forgotten you. Read the rest of this entry
Being a caregiver is tough, but I’m a firm believer that life lessons can be learned regardless of our situation. Below is a list of things I’ve learned while providing care for my husband for the last 8 years. (Feel free to share this post)
1. I am not the superhero I thought I was. I have limits and when I’ve reached those, I need the help of others. The longer this journey goes forward, the more humble I become.
2. I’ve learned to say “no.” I can only do so much and as a result, I’ve learned to say no to the requests that still come from people who don’t understand our situation. It isn’t easy. I’ve always been the one everyone ran to for help and “volunteer” work, but I can’t do that right now. I envision myself as a glass and I’m currently filled to the brim. There’s no room for other obligations despite how desperately others think they need me. Being selfish isn’t easy for me, but it’s currently paramount to my survival.
3. Most people have no idea what caregiving is like. Read the rest of this entry
A special thanks today to Warrior blogging guest, Irene Goetze:
If you had asked me to define remote years ago, I would say that it meant a place that was hard to get to or it described a person who was not prone to interact with others. My remote experiences included lakes in northern Wisconsin and my husband’s uncle who everyone said was “weird.” As a dog person, I thought that cats had remote behavior.
In the 1980s, remote underwent a grammatical shift, moving from adjective to noun. Finally there was a way to change the TV channel with The Remote, which often got lost and became a chewy toy for the dog. We found out the hard way that the VCR remote was expensive and the dog would not pay his share. Read the rest of this entry
One of the characteristics of Lewy Body Dementia that sets it apart from other dementias is something known as Fluctuating Cognition. Our loved ones can go for long periods of time with very little decline, then BOOM they drop off a cliff only to return to a pre-cliff condition (or close to it) without any rhyme nor reason. It keeps caregivers in a never-ending state of limbo. Read the rest of this entry
A note to all those friends and family members who think our loved ones are “just fine.”
“My friend came to see my dad and he greeted her and talked pretty good. The next time she came (he) had no idea she was even there and way out if it. It was refreshing to have her see what I see daily with the fluctuations in attentiveness. She finally gets what I try to explain to my friends.”
Whenever someone says “dementia” the vast majority of those not dealing with the situation automatically assume you’re referring to Alzheimer’s. They have no idea there are several different types of dementia with Alzheimer’s only being one of them. While some might not think that’s an important issue, for those dealing with Lewy Body Dementia, it’s a never ending source of frustration.
Lewy Body Dementia is not like Alzheimer’s.
There are some things in common, of course. According to Medical Dictionary “Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.”
Both Alzheimer’s and Lewy Body Dementia share those characteristics, but LBD has many added components not typically present in Alzheimer’s. It’s been said that LBD is like having Alzheimer’s, Parkinson’s, and Schizophrenia all at the same time. Read the rest of this entry