“My thoughts are not my actions.”

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.

Game Changers

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

Caregiver survey

Ever since my husband was diagnosed with Lewy Body Dementia in 2011, I’ve searched for information pertaining to life expectancy and speed of progression. My reasons were multifaceted. First, I’m one of those persons who needs to have a plan. I can’t blindly go from day to day, hoping things will work out for the best. Some might call me a control freak and maybe I am, but I prefer to think of myself as a pragmatist. I’m not wealthy and I know care can cost a great deal. I needed to know what to expect and how quickly the disease could progress so I could make financial decisions for our future.

7 compelling reasons to use a care facility

I can’t put Dad in assisted care or a nursing home. I promised Mom I’d take care of him.
Sound familiar? It’s a caregiver dilemma that is heard around the world, a promise made from the heart that is now tearing out the heart of the caregiver who made it. But should a caregiver be bound to a promise made when she had no idea what Lewy had hiding up his sleeve?

Let’s look at this another way… Image a six-year old girl, promising the little boy next door that someday she would marry him. Maybe you vowed such a thing years ago and now you shake your head at your naiveté. The little girl had no idea how her life would change in the years to come. She could not comprehend the challenges, and twist and turns that are inevitable as life moves forward. Should she now feel guilty for marrying a different man? Is she a failure because she broke her promise?

The same can be said for being a caregiver for an illness like Lewy Body Dementia. Until you’ve gone night after night without sleep, cleaned up urine and feces from the carpet, the toilet, and your LO (Loved one), and had your LO call you every name in the book (and then some), you can’t really comprehend how difficult this challenge can become. Even hearing stories from other caregivers can’t prepare you for what you may face. For many caregivers, the stress and difficulties reach a critical point where something has to change in order for the caregiver and other family members to survive. The decision isn’t an easy one and often carries a lot of guilt.

The following is a list of 7 reasons shared by caregivers from an on-line support group for why they decided it was time to place their loved one in a care facility.

Things to consider when using assisted care

Lewy Warriors welcomes guest blogger Jeff Maruna today. Jeff is one of three moderators for an on-line
yahoo caregivers group devoted specifically to those whose spouses have been diagnosed with LBD.
LBD_caringspouses@yahoogroups.com was the first caregiver group I joined and the information and
support I received has helped me enormously in my journey. With Jeff’s permission, I stole this post from the group after one of the members had voiced her concern about placing her husband in a care facility.

Jeff and Kathy’s story:

Two years ago, I made the decision to place my wife Kathy in a care home.

Please Forgive Me

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.

10 Things I’ve learned from caregiving

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.