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Tuesday, 03 April 2018 00:00

“I hope that you know, and I need you to understand” – 7 things from my perspective

As a care giver you may feel frustrated, lost and overwhelmed due to the toll that Alzheimer’s and dementia can have on your loved ones.

The reality is that these diseases are likely to take over their personality, even on good days, leaving you to take care of someone who may seem like a complete stranger. However, here are a few daily reminders to keep in mind, from the perspective of your care receiver…

1. My disease does not define me

Please remember that I have been diagnosed as an Alzheimer’s or dementia sufferer, but this does not define who I am. I have Alzheimer’s, it does not have me. I still have hopes and dreams, I still have a personality underneath my confusing actions.

Please see the ‘’real me’’ and treat me as you normally would.

2. Yes, I need your help, more than you know

Just because I become easily frustrated some days does not mean I am ashamed, embarrassed or ungrateful of your help. I need you to help me find my way back to myself and express what I am feeling. I know you understand, so I have come to rely on that.

Please remember that even though I have trouble understanding some things, it does not mean I am incapable of understanding.

3. I am just as worthy of respect as any healthy person

Respect, patience and understanding are vital to helping me feel like a I still fit in somewhere in this world. Having your respect helps me to feel like I still matter and have much to offer.

Respect is a reminder that I am still important, that I still have a purpose.

4. I need your comfort

The honest truth? I am scared. Having Alzheimer’s is like being thrown into the deep end, the unknown, and it’s a scary thing to wake up each day and not know whether I’ll be able to communicate as I did yesterday. I feel betrayed by my brain and there is no escaping it.

I crave comfort and support so I can get through each day.

5. Please remember your compassion

Yes, some days you may feel overwhelmed and I may not be ‘’pleasant’’ to be around. But your compassion and patience goes a long way to helping me feel accepted. Your compassion helps me to realise I am not just another Alzheimer’s statistic.

Please remember that most days I do not realise what I am doing wrong, and your compassion helps me through.

6. I want to be included

Alzheimer’s can be all consuming some days, but despite this I still want to be included in things, I want to be a part of the memories you make, for as long I can. When communicating with me, please remember to be open and honest. Don’t talk at me, or down to me, but rather communicate with me, as an equal.

Yes, you may have to repeat yourself a few times, but please remember I am still trying.

7. Remember and understand my limitations

I live for today and focus on the present. Unfortunately, this is one of my greatest limitations. Alzheimer’s has stolen my yesterday and tomorrow. I struggle to recognise even the most basic things and you may become frustrated or disheartened. Please try to remember, accept and respect these limitations and help me where possible.

These are the daily realities of living with both Alzheimer’s and dementia. Some days are worse than others, some days we feel completely like ourselves, and others, not so much.

Having an understanding of how we feel may go a long way in providing the best care you can.

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