You may have noticed that your parent has been acting out of the ordinary lately. You see strange behavior and an increase in forgetfulness, far more than what seems reasonable. While memory loss may have crossed your mind as the culprit, you aren’t quite sure what has caused the recent change in behavior. Upon visiting the doctor, you get the diagnosis that it has all been caused by an onset of dementia. At this point, you may have a million questions running through your head.
“How did I not realize sooner?”
“Is there anything I could’ve done to prevent it?”
“Is my mom going to be okay?”
“Who’s going to look after her now?”
As you find yourself struggling to come to terms with the diagnoses, you realize that someone is having an even harder time than you are – your parent. Suddenly, you are charged with the task of breaking the news to your loved one. During the early stages of dementia, memory loss and other symptoms are not full fledge, in which case your loved one may still be fully aware at times - this can make it increasingly difficult to share such information as it will be hard to accept.
Dementia often brings on feelings of stress, confusion, and agitation, making it difficult to inform your parent of their condition. Therefore, we have put together a guide to walk you through how to share the news of a dementia diagnosis.
What You Say and How You Say It
You may often hear the term, "it's not what you say, it's how you say it." In this case, it's both. This will be the first step of many life changes for your parent. It's important to reassure your mom or dad that you will be there every step of the way. Read our step-by-step guide to better prepare yourself for the conversation.
Step 1. Educate Yourself
Educate yourself on what you can expect, and the associated symptoms of dementia. Learn more about the speed at which your loved ones will progress. Seek out memory care options and have them prepared to discuss with your family and your parent. However, refrain from making any permanent decisions before you have a conversation with your loved one.
2. Practice the conversation.
Before you decide what you will say, determine what you would like the outcome to be and work backward. Plan a day and time when you will not be rushed to have the conversation – and never catch your loved one off guard. Ensure that you find a time when your parent is doing well and will receive the information best — plan to speak in a tone that is calm and respectful as not to be upsetting. While you want to be transparent and forthcoming, it's important not to bring about agitation or panic. You can provide comfort with physical contact, and by having the conversation in an environment your mom or dad feels most safe. Determine who you would like to be involved in the discussion – siblings, your other parent, doctor, friends, or extended family.
3. Prepare for your parent’s reaction.
Understandably, this news will be difficult to process. Your parent will likely be emotional and have questions. As such, educating yourself ahead of time will help provide sufficient support. While it may be hard to prepare for everything, do your best to consider different outcomes. Prepare for the possibility of denial. Understand that in some instances when seeking acceptance, numerous conversations may be necessary. Depending on the stage of progression, the news may be difficult for your loved one to comprehend. In the instance of confusion, refrain from repeating the same information, instead, try to rephrase what you are saying and remember to speak slowly and with kindness. More importantly than making sure you are heard, is making sure your parent is heard. Take cues from body language, facial expressions, and tone. Allow space and time for your loved one to express personal feelings. Avoid interrupting and focus on listening.
4. Have the conversation and plan.
Those battling with dementia can have varying moods. Ensure that your loved one is in a good mood when you have the conversation. Do your best not to allow your preparation to determine where the conversation will go – instead actively listen and follow your loved one's lead. You can gauge their level of comfort to decide what to say next. While you may not develop a long-term care plan during this conversation, be sure that you communicate that you will consider your loved one’s best interest in every decision. Immediately following the discussion, stay by your parent's side.
What NOT to Do
After your parent is aware of the dementia diagnosis, keep in mind that communication will progressively become more difficult. Even if the initial conversation goes smoothly, be prepared for potential challenges in the future. Here are some tips of what NOT to do:
1. Don’t belittle your loved one for repeatedly asking the same questions. Keep in mind that memory challenges are out of their control. Be patient towards their forgetfulness.
2. Don’t speak in complex sentences. Have simple conversations that are easy to understand and avoid confusion.
3. Don’t treat your parent as a child. While it is now your turn to take care of them, do so respectfully and lovingly.
4. Don’t force your parent to remember things. Try to avoid bringing on the feeling of shame and embarrassment. In the event your loved one doesn’t remember, it could cause sadness. Instead, you can reminisce about the things that you remember, and if they don't remember, it will still be a happy story to hear.
Dementia Care Plan
When a parent is diagnosed with dementia, your first instinct is to care for your mom or dad as best as you can. For some families, the best option may be to find in-home dementia care. At Home Care Assistance, we provide Edmond home care from professional caregivers. Our caregivers are specialist in dementia home care and guide patients and families in Oklahoma City and the surrounding areas. If you need Edmond home care or dementia care in Oklahoma City, reach out to us. We are ready to help you through the home care process.