Our Story of Living with Dementia & Alzheimer’s

My husband and I have been married for eleven years.  My husband is 58 years old and has a Parkinson's related dementia.  We noticed some alarming lapses in his memory about 20 months ago.  He would blank out days and significant events and even trips we took together.  My husband had experienced depression and it was managed for a number of years, but this was very different.

Our primary care physician referred us to a geriatric specialist in his practice and within a couple of months, we met with him and some other members of his geriatric medical team.  They did a number of in office tests, lab work and other diagnostic tests and went over his medical and medication history.  Finally, they referred us to a neurologist who specializes in Parkinson's and related conditions. 

Although not definitive, it is thought that my husband has Lewy Body Dementia (or Dementia with Lewy Bodies).  It is a progressive neurological disease in which some of the symtoms manifest themselves in a different order than Alzheimer's with some other troubling symptoms that differentiate it from other forms of dementia.

My journey with navigation of the health care system began with my Mother's dementia and diagnosis with Alzheimer's three years earlier.  My mother now has moderate to severe Alzheimer's and resides in a nursing facility.  While it is sad to watch the deterioration of a once vital and very active person, I consider myself and our family very fortunate to have a great placement in the nursing home in which she resides.  The staff is second to none and they have become her family.  I live only a few miles from the facility and visit her almost daily. 

In each of my loved ones cases, navigation of the health care system has proven the most difficult for me.  I have viewed my role as an advocate for both my mother and my husband in seeking diagnosis, appropriate treatment, selecting an earlier assisted living facility with my siblings and finding a good placement for my mother in a nursing home.  While "managed care" is a common term used in health care, I have found that I must remain proactive in getting the various physicians to communicate, not only with me and my husband, but with each other.

My husband remains in our home.  This year, we made some changes to update our home to allow him to live comfortably here as long as will be possible with changes in flooring and to the bathrooms.  To date, we do not anticipate an immediate problem with remaining here at our home.  Physically, my husband experiences memory loss enough so that cues are throughout the house.  I manage his medication.  He hasn't driven for 20 months.  When I'm out, either at a part time job or doing errands, I contact him, frequently, to ensure his safety. 

From a caregiving perspective, my knee-jerk reaction for both my husband and my mother was to learn as much as I could and participate in both Alzheimer's and Parkinson's related groups in my community.  I do so for my sanity and to learn about the ever changing availability of resources (both good and bad!) and tips from others.  I've taken a class sponsored by the Alzheimer's Association called Savvy Caregivers, I've read books, searched the internet and talked with doctors.  Initially, in both my husband's and mother's cases, I felt like I had to sprint to be a good caregiver and while I now remain vigilant, I understand that I have to take care of myself before I can play a positive role in the care of my husband and my mother.  This remains a challenge but I am doing better at it.  Some days, I have to have a "self-imposed time out" even if it means going to the grocery store alone or driving in the car and listening to loud music and singing along.  I practice my faith, imperfectly, but as imperfect as it is, it helps me get through my days. 

I am wonderfully fortunate to have three long time friends, two from our teen years who continue to be my dear friends.  Two of them are also in caregiving roles.  We commiserate.  We talk on the phone and sometimes we have a glass of wine together.  My friendships are important and supportive.  I have a step-son who is now at the age where I can call on him for help with his Dad whether it is watching a football game or just going to a movie or watching movies here in our home.  I have siblings who offer comic relief to all of us and understand what we are going through but they fail to allow me to take life too seriously.  For now, that is okay.

My husband and I talk about the past.  We were struck when our neurologist told us to make new memories.  I felt we were too young to face such a suggestion.  But I've learned as we walk this walk, if we don't try to find the "life" in our lives, we will become angry and frustrated and we don't won't to live that way anymore than we have to. 

I'm not saying that this is what I wanted in life and if I could change it all, I would in a minute.  But for now, it is our reality.  We have to make the best of it here in our household and make new memories for both my husband and me.