Helping a Loved One with Memory Loss Grieve
One of the most common things you hear after someone dies is that everyone grieves differently. This platitude underscores that there is no secret manual or “hack” for dealing with grief. In most cases, it involves some sequence of Kubler-Ross’s “Five Stages of Grief,” but these can present in complex ways.
Given the wide variety of grief responses, it can be challenging to know how to support a person while they are grieving. As my family recently found out, this is especially true when the person grieving is also experiencing memory loss.
In the wake of my Opa’s death, we were unsure how to proceed in telling my Oma, his wife of over 60 years. In the months leading up to his passing, he had been in a nursing facility to receive end-of-life hospice care. Meanwhile, Oma continues to live independently in their home of over 50 years, around half a mile away.
His absence has been a big adjustment and source of confusion for her, first with his admission to the care facility and now after his death. Leading up to his placement in the care facility and through their many years of marriage, she had looked after him. When Opa’s health began declining due to Vascular Dementia and a diagnosis of acute leukemia, Oma withdrew more from volunteering at the church nearby and took on even more caregiving responsibility for him.
Since she had never gotten her driver’s license, she also relied on him for transportation until it was no longer safe for him to drive. My mom and her siblings had to make the difficult choice of taking the keys — and a large portion of their independence — away. Around this time, the pandemic also shook up life as we knew it. Overall, the stress of caretaking and increased social isolation seemed to have an impact on her emotionally and cognitively.
A more recent visit to the doctor confirmed what we had been suspecting for some time — severe memory loss. As a result, her day-to-day short-term memory is limited. She often loses track of dates, forgets who and when someone stops by her house, and seems less coherent with recalling details or connecting concepts.
Just as it seemed our family was getting into a new routine with my mother looking after Oma in her home and Opa at the facility, Opa passed away. Given he’d been diagnosed with acute leukemia along with his vascular Dementia before being placed in hospice, we were, to some degree, anticipating the loss. Yet, it did not make the idea of introducing a new stressor — grieving her spouse — to my Oma any less difficult.
Considering her memory loss and confusion around their living situations, we were unsure how to proceed in telling her. In hopes of helping my mom help Oma cope, I looked to the web for insights. While it wasn’t a completely fruitless endeavor, I found that the options were more limited than expected. With an ever-growing population of older adults who experience Alzheimer’s or Alzheimer’s-Related Dementias, I was surprised there wasn’t more.
In hopes of disseminating more information about this unique but not uncommon grief experience, I thought I would share what I did find, along with insights on what we have tried so far in our grieving process as a family.
Telling Your Loved One About the Death
- Tell them as soon as possible. They will likely have a sense that something is wrong and will want information so they can understand. Even if that understanding is temporary.
The evening that Opa passed away, Oma had clicked the button on her ‘Life Alert’ pendant. While it very well may have been an accident, we wonder whether she may have sensed that something was awry or somehow felt uneasy and that led her to press the button. In any case, my mom told her shortly after other immediately family members were notified.
- It helps to be clear and direct — say “dead” instead of “passed away” or more colloquial statements like “in a better place.” Speaking of them in the past tense can also reduce confusion. Moreover, try not to protect them from the truth with white lies like “they are away and will return later.” Statements like these may only confuse them further or cause agitation.
With Oma, this has required repetition. As mentioned, she already experienced day-to-day confusion on his whereabouts. She frequently thinks he is off to work or at the hospital to have his heart monitored, so kindly reiterating that he has died has been the approach thus far, and one that she is receptive to. Once we had an obituary written, my mom printed it and left it in a spot in their home where she can see it.
On that note, be attentive to their moods and understanding moment to moment. If they are not distressed or asking about it, there may not be a need to bring it up. This may be tough when you yourself are also grieving and want to share how you feel, but it is best to try and compartmentalize rather than confuse them.
- Look for patterns in the times that they ask for/about the person who died. There is a chance that an external reminder (e.g. Thursday being the day they went for groceries) made them aware that their loved one is not there.
Staying attuned to their patterns can help you anticipate their feelings or unmet needs. Changes in routine may be the reason your loved one is asking about the person who passed. If they are used to having coffee with them at a certain time, consider doing that with them to meet that need for routine and connection.
- Consider include them in funeral planning. They may recognize the rituals around death and it may help it become more real for them.
Oma went along to the funeral home and got to pick the stone urn that his ashes would be placed in, along with other details about the funeral ceremony itself. Once he was cremated and placed in the urn, my mom gave her the option of whether she’d like his urn at their house or kept at the funeral home until his upcoming funeral in May.
Overall, giving her autonomy wherever possible and including her seems to have helped crystallize that he died. The printed obituary is now next to the stone, so she can see his name and photo, along with the details of when he passed, who is family is, etc. She has said things like “I am a widow now,” which suggests she understands the circumstance.
- Respond to the emotions behind their statements. If they show concern about the well-being of the person who is deceased, you can say something along to affirm their feelings, such as “You must miss him a lot,” or even a statement like “You took really good care of him.”
Since Oma was a caretaker for him — and our family in general — for so long, she tends to get restless without him and others around. In moments where she seems uncertain or uneasy, we remind her that she did an excellent job looking after him.
- If or when you get a routine that works for you and your loved one, try to be as consistent as possible. If it helps, writing this plan and communicating it to other friends and family members who know your loved one experiencing memory loss can help them feel supported.
We’ve been fortunate to have family friends who look out for Oma. A woman in the community spends time with her and takes her to lunch or for groceries. This has offset the frequency that my mom has to take off from work or drive an extra 40 minutes to see her, and allows for more consistency during the day. Leaning on those who are willing to help is especially important for caregivers who are doing around-the-clock work while also experiencing their own grief.
Finally, remind yourself that grief comes in a lot of presentations. This list of tips is by no means exhaustive, and what works for one person may not for another. That is certainly no exception for loved ones with memory loss, where there are varying stages of cognition and recall. Ultimately, responding with compassion and being receptive to your loved ones needs is the best thing you can do, and showing up imperfectly is perfectly okay.
If you are a caregiver, remember to look after your own wellbeing, too! Having to frequently speak of the death of your loved one can enhance your feelings of grief, especially if you are experiencing anticipatory grief about your loved one who is living but is also in cognitive decline. Remember to lean on those who love you and support you, and seek out resources as necessary. It’s cliché to say it takes a village, but it’s a cliché for a reason. We all need each other, and we’re all simply walking each other home.
If you or someone you know has helped a loved one cope with grief throughout memory loss, what has worked well for you?
Sources of Information
Dementia Patients and Grief — Pathways Home Health and Hospice (pathwayshealth.org)
5 Tips for Helping a Person with Dementia Grieve — Funeral Basics
Helping People with Dementia Deal with Loss and Grief — NVNA and Hospice
How to Help Aging Adults Cope With Grief: 10 Tips | Cake Blog (joincake.com)
