Dear Cathy & Mark, 

Our 80-year-old father was diagnosed with Alzheimer’s five years ago. 

Around a year and a half ago, our mother died of Covid-19. At the time of her passing, our dad’s Alzheimer’s was diagnosed to be at a moderate level. It has progressed much since. There are days when he asks where our mom is; it’s a rare day when he remembers that she is gone. 

My older sister and I are at odds whether to bring our dad to the cemetery to visit our mom’s grave. My thinking is that we must not put him through the stress of that anymore. My sister insists that we take him to visit during the All Saints Day holidays. May I ask how you think we can resolve this dilemma peacefully?  —Diana

CATHY: Thank you for sharing your dilemma with us. I’m very sorry that you and your sister don’t seem to see eye to eye regarding your dad’s condition. 

Dementia has touched so many families, and will continue to do so, globally. The World Health Organization (WHO) says that dementia is currently the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people worldwide. From the information you gave us in your letter, you are fully aware that dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their families, caregivers, and the community at large. There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care.

I’m grateful that your father appears to be under the care of either a neurologist or a geriatric specialist. It’s important that he continue to be seen and monitored on a regular basis. Although he has received a formal diagnosis—for which I am guessing he has gone through testing, and proper assessment—it seems that you and your sister are not on the same page regarding his care and, perhaps, the extent of his socialization and the activities he is allowed to do. 

Related: Ensuring a happy end of life for a loved one

Here are good questions to ask: Are you and your sister fully aware of the ramifications of your dad’s condition? Have you both accepted the reality of dementia and how this will change your dad, and all your lives? 

It’s not uncommon for siblings to be at odds when illness touches the life of an elderly parent. Thus, it’s important for both of you to sit down together and try to find out where the other is coming from. It would also be wise to consult with your father’s primary doctor and find out his or her opinion on the matter. In order to better care for your dad, both of you need to understand and read up on this disease. There are many helpful, legitimate and reliable resources on the internet.  Mark will lead you to some of those in his response.

On a personal note, I am with you and inclined not to bring your father to the cemetery at this time. He’s 80 years old, and it would not be wise to expose him to crowds while we are still grappling with the pandemic. Perhaps, after you have sat down with your sister, and on a day when he remembers that your mother is gone, you can offer to take him to her resting place.

You and your sister have been through many losses over the past couple of years. Your mother’s death in the time of the pandemic and your father’s slow disappearance before your eyes are losses over which you are both now grieving. Emotions are raw, and we are more sensitive when we watch a loved one’s time grow short. It really doesn’t matter what the disease is; because it is someone we love dearly, we wrestle with the same emotions and sometimes it can be overwhelming. 

I hope you and your sister can work together and get on the same page in terms of your father’s care. 

MARK: My heart goes out to you and your sister. You are not alone. The WHO estimates that there are over 55 million people living with dementia globally. 

In simple terms, dementia is “brain failure.” There are over 50 different types of dementia. Approximately 60-80% have the Alzheimer’s variant.

Alzheimer’s is a progressive, irreversible, terminal condition involving the slow deterioration and death of the brain. According to the Mayo Clinic, people with Alzheimer’s live between 3 and 11 years, but some survive for 20 years or more. Nancy Reagan was correct to call Alzheimer’s “the long goodbye.” 

There are seven stages of Alzheimer’s in which the person’s memory, cognition, behavior, and physical ability to function decline significantly. Your father may be nearing the late stages at this point, so it’s important to seek guidance from a neurologist specializing in this disease. 

Educate yourself on what’s coming next by viewing Teepa Snow’s “Senior Gems” videos on YouTube. Also visit the Alzheimer’s Association website at https://www.alz.org/ and the Dementia Society of the Philippines at https://www.dementia.org.ph/  for excellent information and resources.

Routine is important for dementia patients. It’s important to discuss how your father handles changes or being around other people now. Exposing him to groups of people at the cemetery, who most likely will be honoring their dead, could be disturbing and disorienting to him and, thus, counterproductive at this time.

If he is asking to visit your mother’s grave and seems physically and emotionally capable of doing so, then arrange a day and time where he is feeling well and can have privacy without being rushed. 

I experienced this “long goodbye” with my own stepmother who had Alzheimer’s for many years. I know firsthand that it’s not easy to see a loved one fade away. 

I’m sure you and your sister have had many challenging discussions leading up to this one, and it won’t be your last. Use empathic listening with your heart and mind when you ask your sister: Why is it so important to you for our father to visit mom’s grave?  Is it because of tradition, religious obligation, etc.? Understanding where your sister is coming from is important. 

Be patient with yourself, your sister, and your father. This is going to hurt your heart as you may have to relive the pain and grief of your mother’s death each time your father asks about it. Start connecting now with an Alzheimer’s support group and a grief support group virtually online. Invite your sister, too. You don’t have to say the “long goodbye” alone. 

Cathy is in private practice as a grief, loss, and transitions coach.  She is an author of four books, two of them on grief. 

Mark has been a registered nurse for 47 years and is an educator specializing in end-of-life care. He was director for training at the second largest hospice in North Carolina in the United States. —Ed

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