The Indomitable Spirit

It’s 5:30 in the morning. The house is quiet. Even Hermione (my Pomeranian) is sleeping; at least until someone comes down the hall. I have my coffee and I am thinking. The picture above is from a very old photograph, hence the grainy texture.

My parents are in their early 80s and mom has severe dementia. Dad is her only caregiver. I should also mention that mom also has lupus. Dad has skin cancer and they both have cardiac issues. They live in a very small town that literally has only one stoplight. It is an hour and a half from any full-size hospital, doctor’s offices, or any major medical care that is needed.

They have chosen to live this way no matter how much my brothers and I have tried to convince them to get closer to care or closer to one of us. We are all scattered and cannot get to them for various reasons that are not important here. What is important is that now they need care and can’t get to it easily and sometimes not at all.

Mom’s dementia is heartbreaking. There is guilt everywhere. Mom cries every time I talk to her. She tells me how much she misses me and wants me there. Yesterday she told me she knew that it was their choice to live so far away. They wanted a small farm and they got it. She told me how much she regretted it. And she sobbed. She’s forgotten my daughter and her family. So every time we talk I remind her; ONLY when she asks about where I am and how I’m living where I am. She does recall that I have health issues as well. This makes me sad as well because it causes her worry and pain as a mother. It’s something you never really lose.

Dad has so much on his shoulders. His own health is suffering. A couple of days ago he had to go to the store to get some badly needed groceries. He was gone for 45 minutes. Mom didn’t go with him. I had this feeling I needed to call. She told me that dad just sped off and didn’t have any idea where he went. She was panicked.

Mom refuses to go to doctor appointments even when they are dads. As a result, they frequently have to cancel or reschedule them. If dad has an urgent appointment and mom refuses to go, she has to stay alone. There is no one they can rely on for help. This includes people from their church. You can imagine the fear this causes on all accounts. Dad makes sure she can’t drive anywhere and hopes she doesn’t hurt herself wandering around the house.

Obviously, this isn’t the whole story. I could write a book on everything that’s occurred and the pain of this disease. The guilt, the tears, and the love for all involved.

Dementia, any type, is a disease that robs a person of themselves. It robs families and/or the people that love them of that person. It’s hateful. I’ve been a nurse for many years and cared for many people with dementia. Even when someone can’t speak towards the end of their physical life, you can see their fear and occasional remembrance of past times. Dementia kills a person before they physically die.

I’m telling this very personal story because if you or a loved one is struggling with this (yes, in the beginning, the person with dementia can feel it and try to cover it up) reach out for help. Contact a physician, a counselor, an association that specializes in this, or even a friend or specialist to help with your loved one.

Reach out. You are not alone, no matter how alone you feel. I cannot stress this enough. Reach out. You need and deserve all the love and support there is.