Dementia expert, Karen Tyrell, offers answers to www.carp.ca visitors for their situation-specific questions. Karen is a dementia consultant who can point you in the right direction, giving quick insight and personalized answers to help you with dementia care challenges.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to: [email protected]
May, 2015 Update
1. Unrecognized By My Dad- How Can I Get Him To Remember Who I Am?
Dear Dementia Solutions:
“My dad and I have always been close. However, lately, due to the effects of dementia that have eroded his memory, he struggles to recognize who I am. The fact that he can’t identify me as his son hurts deeply. What should I do, or not do, when my dad doesn’t recognize me?”
~ Heartbroken Son
Dear heartbroken son:
Your dad’s inability to recognize even those he is closest to is a symptom affecting many of those with progressive dementia. For family members, like yourself, the lack of recognition can feel like the fracturing of a relationship. Know that you are not alone and that helpful strategies can give your dad’s memory a nudge in the right direction (several ideas can also be found in the new App I helped to create called the Dementia Caregiver Solutions App in the Apple Store).
Try gently correcting your dad and gauge his reactions to your words. If you find him getting more confused, simply switch tactics. Confusion is a deeply unsettling feeling, so maybe remind your dad that you are someone he has known for a long time and that you can be trusted. Even if he cannot pinpoint who you are, this will help him feel more secure. Memories are also powerful triggers. Reminisce with your dad about some old stories you have heard him tell before.
Just by letting your dad know that you care about him and enjoy his company may make a huge difference. To help ease your own hurt, remember that your dad’s reactions are not purposeful but rather the effects of dementia at work. Even when unable to recognize you as his son, your dad can still bond with you in profound and meaningful ways. Doing what you can to make the moments you spend together special will be the most important part of the journey.
2. Planning Ahead for Dementia – What Legal Documents Should I Get In Order?
Dear Dementia Solutions:
“I’m someone who believes in tackling life’s challenges by planning ahead. In the case of someone dealing with the onset of Alzheimer’s, what types of legal documents should be in order to make sure the person is well taken care of?”
Dear forward thinker:
Thank you for highlighting a very important topic. To ensure greater peace of mind in the long-term, an organized approach in confronting a challenge such as dementia helps immensely. Since dementia impacts the brain, with symptoms including disorientation and impaired cognitive abilities, I recommend making plans for the future as soon as possible, ideally while the person with dementia can still reason clearly.
A good idea would be to start by making an appointment with a lawyer or notary in your community. After attending/listening to several sessions on this topic, I have identified some of the key steps often advised. The person with dementia must sign a legal “enduring” power of attorney document, which appoints someone to manage their finances. The key word is “enduring”, meaning that the appointee steps into their role gradually as the decision-making capabilities of the person with dementia decreases.
Appointing someone to manage personal care decisions through a Representation Agreement, as it is called in BC (in some provinces it is called a “Power of Personal Care” document), is also essential. These forms can be found online or completed with the lawyer/notary. If the person with dementia can clearly state their wishes regarding personal care needs, they can also create an Advanced Directives document (previously known as a “Living Will”). This helps give clear direction to the appointee managing personal care decisions.
If these legal papers are not completed by the individual with dementia early on and they become no longer capable of filling them out, a Public Guardian Trustee will need to be appointed to do so on their behalf. Note that if a family member would like to take on the decision-making responsibilities, they must seek “Committeeship” through the court system, a process that can be lengthy and expensive. This is why it is best to prepare legal documents during the earlier stages of dementia. Planning ahead and seeking legal advice, will alleviate worries and make the journey with dementia smoother for all involved.
3. To Tell Or Not To Tell- Should I Tell My Mother With Dementia About A Loved One’s Death?
Dear Dementia Solutions:
“Sadly, my mum’s brother passed away last week. To avoid distressing my mum, who lives in a nursing home and is in the later stages of dementia, I decided not to tell her. My sister disagrees with me and believes we should be honest, stating that she has a right to know. Do you think my sister is right?”
Dear undecided daughter:
Easy answers are hard to find in a case such as this, where everyone has the best of intentions but disagrees on what is best to do. The loss of a loved one is always a painful experience and you are understandably concerned about your mum’s reaction.
In deciding whether to tell her about the loss of her brother, assess to what extent she can handle this information. If she tends to get upset for days when hearing sad stories then you may want to refrain from sharing the tragic news. People with dementia can experience volatile emotions because of difficulties processing information and putting the pieces together. However, if your mum doesn’t experience these emotional fluctuations and is unable to recall what you told her from moment to moment, she may be capable of hearing about her brother’s death without it causing overwhelming distress.
You may want to share with your sister the saying, “what you don’t know won’t hurt you.” It has often been criticized as a support for keeping information hidden, but in dealing with someone affected by dementia, it is important to keep the adage in mind. Your mum’s comfort should be paramount in making decisions, and I would encourage you to trust your protective instincts if you fear that the news will cause her undue sorrow and grief.
Your sister’s concerns about your mum’s right to know are understandable, and many would agree with her. However, when someone is affected by dementia we have to recognize that it impacts their ability to absorb information and control their own reactions. In this case, your mum being content and at peace may be more important than her knowing the truth.
Do you have a specific question relating to dementia that you need answered? Please submit your questions by email to:[email protected]
Karen Tyrell CDP, CPCA is a Dementia Consultant & Educator for Personalized Dementia Solutions Inc. (www.dementiasolutions.ca) and the author of the book “Cracking the Dementia Code – Creative Solutions to Cope with Changed Behaviours” and co-creator of the Dementia Caregiver Solutions App. She offers her expertise on dementia care through speaking engagements, workshops and by working one-on-one with families and caregivers.