Mom came to live with me and my husband about 9 months ago. For the previous 5 months she had been living on the independent side of a senior living facility.
I knew at the time that she needed some assistance but vowed to provide it myself if necessary and believed that being around other people would benefit her. It wasn’t long before I was taking food/meals over to her 2 or 3 times daily. She refused to participate in any planned activities and basically remained in bed most of the time.
At that point her doctor made it clear that living without assistance was not advisable. Since we had moved back home from out of state to be near her we made the decision to move her in with us.
She also refused to move into assisted living. In all honesty I can now say that I really didn’t know what to expect but figured I would deal with it whatever “it” was.
So, what’s it like being an Alzheimer’s caregiver?
For the first 2-3 months I found myself thinking of the movie “Ground Hog Day” where the same day is experienced over and over and I felt SO frustrated while I struggled to accept this unchanging and challenging situation. The repetitiveness of answering the same questions over and over plus trying to explain the world to someone who can’t understand or remember drove me nuts.
In addition, my mother calls me by name but tells me that she cannot ever remember a time when I was her daughter so she feels no connection to me other than as a caregiver. There is some humor in it, though -- last week she told me I couldn’t possibly be her daughter because her daughter “wasn’t that big on the backside”.
Once it sunk in that I was dealing with a disease that I had no power over I knew I needed to arm myself with information. I needed to get educated on Alzheimer’s so I could stop making it be about me and find ways to make her life more meaningful and less confusing.
It finally dawned on me that it was me who needed to change. If my same answer wasn’t clear the first 50 times it was unlikely to work the 51st time. At the end of most days, I ask myself what I could have done differently and I usually find something. I then try a new approach and continue trying until I find one that, hopefully, works. Yes, it is mentally exhausting and, no, it doesn’t always work.
My biggest concern other than bathing is her lack of enthusiasm for any activity other than eating and sleeping. Mom has never been interested in reading or television and has macular degeneration so these options are out. She does love dancing and music so I play music she likes and dance with her myself. She seems to enjoy this and it makes me feel like I am making a difference.
The hallucinations involving visitors in the middle of the night and the stories that go with them are both scary and fascinating. Mom frequently has “visits” from her parents and grandparents who seem to want to comfort her. I can’t help but wonder if this is part of preparation for the end of life.
Fortunately, my husband and I work opposite hours so we take turns caring for mom. I couldn’t do this without his help and I am very grateful that he is willing.
I miss my friends and my freedom but mostly I miss us as a couple. There are days when I resent this situation but I know we are doing the right thing.
Mom is 89 and I know she won’t be around forever. I also know we could reach the point where we are not able to care for her at home but right now we’re taking it one day at a time. I am most appreciative of the Alzheimer’s community both online and locally since I’m aware that these connections provide the ongoing education I need as well as make me realize that I am not alone.
Karen Matthews and her husband, Randy, are full time caregivers for Karen’s 89 year old mother, Louise. Karen works in residential real estate and has an MBA.
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Original content Karen Matthews, the Alzheimer's Reading Room