Chapter 13 – Jamie’s Journey

Posted on: July 10, 2015 | 0 Comments |

Note: In 2007, Jamie Wilson Headley (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.
These are the challenges that one woman faced, but although Jamie’s Journey is deeply personal, it is also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring someone with dementia.

Mom tried to be strong and deal with losing Sasha. The journal entry below sums up how hard this situation was for her.

Very bad day – very very bad!!!! Maybe the worst – not sure how to describe it. This is truly my new life now. Many parts of it are great!! BUT, the total lack of independence and lack of control, can’t get out of here when I want to, even just to go to the store! I understand and appreciate all I have but some days are almost unbearable. I carry on as I always have but it gets harder and harder. Some days I just don’t want to go on. I fight but this is hard. Maybe I just miss my cat today. HELP!!!

My body aches-hurts. Always had low energy and fought it but it is much, much harder now. Jamie should not have to do all this stuff for me. Been independent and done everything for so long. This life (nice as it is) seems empty and useless and very lonely and isolated. I am not in charge of anything. Can’t even go to the store for something. Jamie is wonderful but this is about ME, my self. Seems so useless, boredom. My life has been wonderful but also very hard. Not complaining – just saying. I need more gratitude for all I had and have. Have gratitude – but right now it is not helping the pain. HELP! I do not want to be like this. I have always been able to handle anything. What is happening to me? I do not want to live in this state of mind. HELP!Excerpt from Mom’s journal

Mom and I had always talked about everything. We shared all our feelings and worked through every problem or situation by talking it through together. That was how we coped. Mom must have shared these feelings with me in some way, but I didn’t fully understand her pain until I read her journal much later.

At the time, I don’t think I fully realized all the loss she was dealing with. Even if I had read her journal back then, I am not sure I understood Alzheimer’s well enough to have done much more to help her. I know now that Mom was in a rough stage of the disease. She was experiencing a loss of cognitive function (not just memory), but she had not lost insight.

Mom was lucid enough to know what was happening to her – and to realize that she had no way to stop or change it. I cannot imagine how painful and terrifying that was for her.

But at the time, I wasn’t aware of this. I just knew she was struggling and so was I.

A couple of weeks passed.

The vet called; they had a kitten that had been rescued and needed a good home. Was Mom interested in coming to the clinic to see the kitten?

I think you can guess that the answer was yes. And so began our next adventure.

Note: People with dementia often have “anosognosia” which is the medical term for lack of insight or the person’s inability to recognize their illness. This is not denial – it is a true medical symptom caused by issues in the frontal lobe.

It is also seen in cases of schizophrenia and bipolar disorder. This can make getting the person with dementia to accept care or go to the doctor very difficult. However, it can also spare them the pain of knowing they are slowly losing their cognitive abilities.

For more information on anosognosia check out www.nami.org, or I Am Not Sick, I Don’t Need Help! by Xaviar Amador (LEAP Institute).

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Jamie's Journey

In 2007, Jamie Wilson (founder and CEO of Dementia Services Group) began the complicated process of helping her once-independent mother adjust to life with dementia.

Jamie's Journey is deeply personal, but also universal. We hope that her trials and triumphs will shed light on the emotional and logistical issues that come with caring for someone with dementia.

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