HONESTY AFTER DIAGNOSIS

You’ve just got the medical diagnosis of early dementia and you feel someone just hit you with a sledgehammer. Now what? The doctor tells you about some medications to slow the symptoms and suggests a support group but that’s it. You and your spouse are on your own from here on.

You decide there’s nothing you can do about it and its too frightening to talk about. After all you are still functioning and it might be years before you have to do something. You always change the subject or say you don’t want to talk about it.

As your condition progresses, you forget you have dementia and now it’s become too late to discuss it. Whenever you forget or do something irrational you deny it. Your emotions are erratic and you are losing self-control and don’t realize you are doing it; you blame others. Introspective ability is diminishing and you are beginning to overreact. You lost your independence when they took your car keys and feel like a prisoner to your spouse; you are resentful. Fear is becoming constant and frustration keeps leading to anger especially at anyone caring for you.

Even before the actual diagnosis it’s essential to discuss the possibility and then don’t wait, get tested. If the diagnosis is dementia, that is when it’s most important to continue talking about it with your partner and family. Everyone needs to be involved and honest especially about feelings. This is the time to develop a deep sense of trust. Avoidance only leads to an increase in problems as dementia progresses.

I usually suggest calling dementia “the condition”. It sounds less menacing and when you forget or feel stupid over something you’ve said or done it helps to be reminded you are not to blame. “Don’t worry Dad, it’s not your fault. It’s because of your condition.”

Continuously educate yourselves about dementia, you can never know all there is to know. Prepare what needs to be done for the future. Work together to find as many resources as possible even before you need them. You and your spouse and your family should become a team, make the decisions together, and share responsibilities.

Find a support group for those with dementia and another for caregivers. If there aren’t any in your area there are hundreds of dementia groups on Facebook. Join several. You can vent when you need to and get helpful information.

There is life after diagnosis but it is up to you to do the work. Most dementia symptoms can be slowed with a healthy lifestyle of daily exercise, improved diet, eliminating sugar and processed foods, and get emotional help whether individually together as a couple.

Don’t be ashamed of having dementia and find the courage to ask for help when you need it. And most importantly, be true to yourself and do the best you can enjoying life to its fullest; one day at a time.

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