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 go up and down more frequently than Oprah Winfrey’s weight, 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
We’d noticed my husband’s confusion over a year before he was finally diagnosed with Parkinson’s disease in 2009. I never felt that diagnosis fully explained his symptoms, but I was willing to accept the doctors’ expertise in the matter. My father had had Parkinson’s for 20 years at the time my husband was diagnosed, so I knew what to expect with that disease. While upsetting, the initial diagnosis did not cause any change in our day to day life at that point. He started his medications and we continued on with life as we knew it. However, when in 2011 his diagnosis was changed to include Lewy Body Dementia, I did enough research to know things were going to change quickly and not in a good way. I joined an on-line support group and learned that rapid decline was typical. Many caregivers find it necessary to move from their current home in order to get help with care or to find a home that has a layout more conducive for a person with disabilities. Luckily, we had a fantastic Continuing Care Retirement Community (CCRC) in our area. We decided to move while he was still healthy enough to be accepted.
Game-changer #2-moving to a CCRC in 2012
While this was a good change, it did require an adjustment to our lifestyle somewhat. Most of the changes were for the better in that travel became easier (No need to worry about our place while we were away.) We also no longer had to worry about maintenance. Before the move, we’d owned a 70 acre farm with a large Victorian house, barn, and stable with riding ring. It was a lot of work and my husband was quickly losing the ability to maintain the property. However, moving into an apartment meant leaving behind many memories, as well as furniture, and probably 90% of everything we owned. Many people questioned our move as my husband was still capable of doing all his ADLs at this time and was even running 5k races. But I knew what was coming and was determined to secure our future as quickly as possible. It turned out to be the smartest decision I’ve made throughout this entire journey.
Game-changer #3– Losing his driving license in 2013
When I became concerned over my husband’s driving, his doctor ordered a driving assessment to determine if he was safe to operate a vehicle. The assessment took about 2 hours and involved several activities designed to check brain function as well as reaction time etc. The test predicted there was a 90% change he would be in an accident within the next 60 days and his license was removed. This was devastating for him and caused months of arguments and turmoil for me. The fact he was no longer insured if he had an accident had no impact on his determination to drive without his license. I finally got him to accept the decision by telling him he could study and pass the test in the future if he chose. He tried to prepare for a re-test for a few weeks, then gave up. As for changing our lives, however, the loss of his license meant I had to drive him everywhere he needed to go from that point on. He officially lost his independence.
Game-changer #4– Losing the ability to travel in 2014
My husband has always progressed continually, though not at a particularly rapid rate. There have been no “Aha!” moments where he simply woke up one day, unable to do something. But in 2014 we took a trip to Gatlinburg, TN and by the time we came home, I had to accept it would be the last trip we’d be able to take. It was too difficult for me and too exhausting and confusing for him. This was a major blow to me. Both of my parents were school teachers and I’d grown up spending my summers, camping all over the country. Losing the ability to travel was devastating.
Game-changer # 5– Losing the ability to be left alone 2014
This particular aspect of caregiving had never dawned on me until I experienced it firsthand. There comes a point when your LO cannot be left alone and are no longer capable of going with you. How do you go to doctor’s appointments? The store? ANYTHING? Think about the hundreds of errands you tend to during the week, then imagine that you can’t take your LO with you or leave him behind. Now what? When you have to have someone sit with your LO every time you go somewhere, you don’t go anywhere that isn’t absolutely necessary to survival: no more singing in the church choir, no more lunch out with friends or trips to the mall, no more book signings (I’m an author), no more walking for exercise. This milestone greatly altered my lifestyle. It’s at this point when most caregivers are forced to make many difficult decisions. I’ve known more than one caregiver who had to quit their job in order to stay home with their LO and as a result, lost their homes because they had no income.
My husband could no longer be left alone at about the same time he lost the ability to do his ADLs (activities of daily living like dressing, bathing, etc.) which was only a few months before the next Game-changer hit.
Game-changer #6– Moving to assisted care early in 2015
While most of the previous Game-changers made life more difficult, this one actually made life better for both of us.(see Reasons for Using a Care Facility article here) The assisted living component of our CCRC is in the same building as our independent apartments. When it became evident I could no longer safely provide physical care for my husband, he moved into assisted care. My husband’s room was only a 2 minute walk for me and since it’s an inside walk, I could bring him to the apartment, even in the winter months, so he could visit with friends and family. It was a wonderful situation. The aides took care of all nighttime issues as well as bathing and dressing him. I was able to write again and even take short trips. I no longer had to worry about who would watch him while I ran to the store or went to the doctor. He received wonderful care and no longer has guilt for what he was “putting” me through. Our time together became enjoyable once more.
Game-changer #7– losing the ability to transport in August of 2016
At the time of this post, my husband’s decline has taken him to another level, and I’ve lost the ability to transport him without assistance. I can no longer get him into and out of his wheelchair or a car without help. That means he can no longer return to our apartment for more than an hour since I can’t get him to the bathroom by myself. He will no longer be able to spend the day in the apartment when the grandchildren come to visit. It also means I can’t get him to the doctor without an ambulance transport. At this point, I’m not sure what adjustments will have to be made, but there will be many.
I can only guess at this point, but as far as changing the way we live, the only one I can imagine is the end of this journey. Thanks to our move to the CCRC, his care is now set. The only thing left to lose is his ability to eat in the main dining room, but eating in his room won’t change our lives dramatically. He’s almost bed-ridden since the recliner he’s in throughout the day, stays totally reclined for his comfort. From this point, I’ve done all I can do to make sure he’s well cared for and his needs are met. For now, my job is to continue to love him and pray that his remaining days will be peaceful and as pleasant as possible.
What to take away from this post?
•Lewy body Dementia is a progressive disease. That means it will get worse. There will be pivotal moments throughout the course of the disease that will require major changes in your day-to-day living. Be aware and develop a plan for dealing with these changes.
•Not all Game-changers are bad. Sometimes the progression of the disease forces the caregiver to make decisions/adjustments that will improve your life such as hiring aides or placing your loved one in a care facility.
There comes a point where you’ve done all that you can. Accept it and take comfort in knowing you’ve given it your best.
*Update-On November 13, 2016, my husband passed away. Game over…
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