What they don’t tell you: Parkinson’s and dementia

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I am lucky that I have quite a good team around me. From my first post you will know that my husband has Parkinson’s and Dementia. I know everyone is different and your care role will be different to mine; your cared for person may be your child, parent, other family member or friend. I guess, (and correct me if you think I am wrong) but as a carer we are journeying along the same path of emotions and grief.

Whenever we go and see our Parkinson’s consultant, (which is usually every 6 months) I am always eager to ask many questions. I find writing them down beforehand helps to utilise the time well.

During the sessions he always offers thoughtful words of wisdom. I must confess I do admire him for his laid back, professional and approachable style.

One statement of words of wisdom he shared early on in our journey always stuck with me and at times of stress. Believe it or not caring 24/7 is HIGHLY STRESSFUL! I have to remind myself of his words

Describing in tears at the time how stressed and resentful I was becoming upset at how my life was being taken away. I was having to give up so much to look after my husband. I felt guilty saying this as my husband was sat beside me not saying anything and as he does often. He was falling asleep. when I feel I am falling apart.

He said, “Sharon, it’s okay and perfectly normal to feel like that. Caring for someone is overwhelming and you will feel resentful but you can still love that person the same”

What they don’t tell you but wish they had about Parkinson’s and Dementia

Receiving a Parkinson’s and dementia diagnosis is traumatic. Yes the words of wisdom stated above were helpful in recognising that it is okay to not be okay. That caring is stressful and basically normalising my feelings. But what they don’t tell you is ‘welcome to the twilight zone’.

From experience in our journey I have found that they leave you to figure it all out yourself along the way. They ask about the usual symptoms ‘apathy’, ‘depression’, ‘sleep’, but they don’t expand with any explanation as to why they always ask these same questions or give any realistic advice. They are often referred to as ‘non motor symptoms‘ though they do not explain this in any detail.

This can be very frustrating as many carers do not know what this means or know to ask. This is not a criticism but a fact. Equally frustrating is that it is the non motor symptoms that cause a lot of the stress in carers.

Apathy and Depression in Parkinson’s and Dementia

The average person generally understand the word ‘depression’ as ‘sadness’ and ‘apathy’ as ‘doesn’t care’. As a carer it is the same. When these symptoms occur a carer will react to these non motor symptoms with the same understanding. Carer’s become stressed, upset and frustrated when left feeling that their loved one ‘doesn’t care’.

A carer is left not understanding what is actually going on. You spend a great deal of time and energy trying to ‘cheer them up’ and ‘motivate’ your loved one whilst trying to deal with the grief and worry of the situation and future that is rapidly changing.

If the professionals could simply explain some of the brain chemistry changes that will occur and prepare us for what to expect. Parkinson’s and dementia changes the person we have grown to love. To be able to understand some of the change that will come will help a great deal. Not left bewildered and confused when trying to understand what is happening.

The Twilight Zone of Parkinson’s and Dementia

To explain what I mean in this blog, I have called it The Twilight Zone. The reality of the twilight zone is where almost everyone with Parkinson’s disease is heading. With an additional diagnosis of dementia it is real. Sadly we cannot ultimately prevent it happening.

Keeping them active and involved helps at the beginning, but as the disease progresses it becomes harder and harder. You are left feeling guilty and a failure that you are letting them down.

So what is The Twilight Zone? Changes in the brain are real. The professionals such as the Neurologist, GP and Parkinson’s and dementia nurses will tell you so. This is something they often DO tell you but not with any expansion.

My version of The Twilight Zone is here in the brain changes. It is a place that they go to live. It is a reduction in dopamine that leads to apathy and depression.

In the Twilight Zone, an understanding and awareness of time becomes problematic. At the beginning/early phases of illness this can be managed by gentle encouragement and involvement in activity and help to manage a routine. I am talking about the middle to late stages of illness.

For them time slips away, but for carers time remains constant. It is hard for carers to understand this Twilight Zone that our loved ones live in. I will try and describe what I think it is like.

Try to imagine living in a world without time, disconnection to stimulus, disconnection to response. Overall, how do you then connect what you want to do to the process of doing it?

In the real world for the rest of us, we are connected to all those things. If, for example you want to stand up, you connect the initiation to stand and then move your feet to take steps; we do this without thinking. Our brain automatically connects the stimulus to the response.

In the Twilight Zone the connection is gone. There is no connection to wanting to stand and moving your feet. There is no brain initiation. Moving this into every aspect of daily life for someone with Parkinson’s and Dementia it is very real.

A disconnection occurs between hunger and eating. A full bladder and going for a wee. Acknowledging loved ones and responding in a love like manner. Over time the connection diminishes.

Responding to the Twilight Zone

• Not to bring fear and guilt into their zone
• Be able to let go and allow the change
• Be able to make the journey a less unpleasant and fearful one

In my opinion, being in the Twilight Zone could be their space of peace and tranquility. If we continue to fight against it, not wanting them to enter the Twilight Zone, fearful of change, it can become increasingly stressful for both.

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Its not to say that you don’t nag into going to the toilet, to stop weeing all over the floor and having a shower. Its understanding why they don’t WANT to or understand and acknowledge the NEED to. Understanding that over time all the chores fall on the carer as they fall by the wayside.

From experience, the chores we used to share are now mine. From emptying the dishwasher, emptying the bins, sharing the cooking and even the lovely welcoming cup of tea I had waiting for me on my return from work in the early stages of illness when he could no longer work have gone. I used to feel angry and frustrated at the ‘laziness’ as I perceived it. Had I had the non motor symptoms explained to me I would have been less so. Now I do all the chores while he does all the dreaming in Twilight Zone.

Inevitably, progression happens. Coming to terms with changes are hard. My perception, whether you agree with it or not is helpful in my acceptance. It is not to say that I do not grieve for what was; I do still struggle for what is. Whilst we still love the person, we hate the situation we find ourselves in. Can we feel these same things at the same time?

BOTH CAN BE THE SAME

You can love someone and hate the situation at the same time. I realised early on that this ongoing journey is likened to a long bereavement. Mourning my husband as he fades away before my eyes both physically and mentally and yet he is still here; and I enjoy the brief moments of joy when he smiles at me in recognition before he fades back into his Twilight Zone and falls asleep again.

I do hope you have enjoyed reading my blog post. In sharing my perception of a PD journey I would love to hear yours. If you have enjoyed my blog post please sign up to my newsletter for more.