The Uncertainty is the Hardest Part

Dear Reader,

 I didn't mean to make this blog all about dementia. But it IS a major part of my life right now and is therefore on my mind a lot. On Monday I went to visit Mom. She was sleeping in her bed when I got there and I went over and kind of touched her shoulder and said, "Mom? Mooom? " She rolled over, looked at me, and said, "Who are you?"

I knew those words would come one day. Everything I have read about dementia has told me that. But I didn't quite expect it this soon. It's such a strange feeling to have someone you have known your whole life look at you so blankly, with an edge of fear in her voice, as though you are an intruder into her world. She did, after she had gotten up and gotten moving, realize who I was, but that moment, the moment that my mom didn't recognize me, will live in my mind forever. 

How long will she remember who I am? How long will it be until I come there and I am just some nice lady who visits? There is a woman who specializes in dementia care named Vicky Noland Fitch and she says that, even when our loved ones no longer know who we are, there is a soul connection there that cannot be broken. I pray that it's true because I know my mom's mind is dying. 

The uncertainty of dementia is one of the hardest parts. When my dad was dying of brain cancer, we had a pretty good idea of how it would go, a pretty good idea of how long he had, and although the time was heartbreaking beyond belief, we at least knew what to expect. But there are no definites when it comes to the stages of dementia. The stages can sometimes take months and sometimes they can take years. They sort of blur into each other and sometimes it seems as though she's a bit better but then can be five times worse, all within one day. This much we do know...each new stage brings her one step closer to heaven. 

And so we go on. We do our best, we try to bring Mom as much joy as possible. We bring her tea and plants and take her out walking. We make her picture books of the family so she can leaf through them and remember. There truly are some blessings to this disease, although they are always bittersweet. This time of our lives has brought a lot of healing to relationships and peace in our hearts. But uncertainty looms large as the disease progresses. 

And yet there is always Hope. The Hope of this world, who came to save us from our sins. The Hope that lives within us, strengthening us and giving us peace and yes, joy, even amidst our trials. What a blessing! 

Matthew 6:34  "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

PS- Dear Friend, if you are a caregiver for a loved one with dementia, I highly recommend Vicky's book, "Dementia With Grace" and John Dunlop, MD's book " Finding Grace in the Face of Dementia".