(Pam Ostrowski is a dementia caregiving consultant, Certified Senior Advisor, and Certified Dementia Practitioner. Find her caregiving guide “It’s Not That Simple: Helping Families Navigate the Alzheimer’s Journey” on Amazon and other book outlets.)
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No matter the disease, family members want their loved one to be at peace, no longer tied to incontinence products, caregivers, pureed food, and help with mobility. However, the thought of this person not being in their lives can be unbearable, no matter their condition. We often fear the loss of physical contact that comes with a loved one’s passing, not being able to hold their hand, stroke their back, or kiss them.
Unlike other diseases that typically progress relatively quickly, Alzheimer’s Disease can last anywhere from four to eight years or more after diagnosis. It’s an emotional rollercoaster. Just when you’re ready to say goodbye and let go, your loved one could rally and give you renewed hope.
In care communities, it’s often difficult to watch family visits dwindle as loved ones with dementia progress. It seems they don’t realize that the person they love is still in that body, that they may struggle to communicate, but they can still hear and feel. The National Institute on Aging provides excellent guidance on how to stay connected with your loved one in the late stages of Alzheimer’s, including visiting despite less engagement, speaking calmly and slowly, and relating long-ago memories.
There are books and articles about “the long goodbye” because most view dementia as a person leaving them. But they’re not. They’re evolving into a new person, similar but not exact. Their capacity to perform tasks and retain memory of recent events doesn’t disqualify them from continuing to be loved and treated with dignity and respect, especially when the end is near.
What are the signs that the end is near?
Most people don’t understand how someone dies from Alzheimer’s. The outward signs that you encounter, such as forgetfulness, inability to process instructions, and even loss of conversational skills and speech, are reflective of the inner struggle the brain is having in commanding the body to function properly.
The physical signs will be apparent. For instance, they may pocket food in their mouths or have trouble swallowing (dysphagia), causing weight loss, dehydration, and weakness. Nine out of ten people with Alzheimer’s or dementia will experience dysphagia at some point. Professional caregivers know to watch for individuals putting more food in their mouths before swallowing the previous bite. If this behavior is overlooked, dysphagia can lead to a range of complications including choking and aspiration pneumonia, a severe chest infection which can kill a person and is the most common cause of death among those with Alzheimer’s, according to UCLA Health.
Another physical sign is difficulty with mobility, whether that’s getting up out of a chair or walking from one room to another. The loved one may resist assistance but it’s critical that you ensure stability help of some sort (human or device) to prevent a fall.
Although unintentional, loved ones face a health challenge when visitors or staff bring in a virus such as a cold, COVID, or flu. Ideally, no one should come into an assisted living or memory care community if they have even a hint of sickness. But many times, we don’t know that we’re about to be sick and so, residents do catch colds and get the flu.
Watch your loved one’s recovery from these types of incidences. If they appear more exhausted and less engaged after each incident, that could be an indication that their body is weakening. Because of the unique and variable symptoms of Alzheimer’s, there’s no way to really know when the end is really near until the signs are very clear.
How will you know when it’s time?
Usually, you expect a big “event” to trigger the decline to the end. However, with late-stage Alzheimer’s, it can be subtle, such as a cold that becomes pneumonia, an infection that the body just can’t fight, or a fall. Sometimes it can be that the mind is so out of sync with the body that the struggle is too exhausting.
Your loved one may eat less or stop eating altogether. Avoid forcing them to eat. They may struggle with mobility so be sure to have a wheelchair handy and get professional caregiver help. This is not the time to “go it alone.”
Watch for your loved one to seem to start “seeing” things that aren’t visible to you. For instance, they may raise their arms as if dancing or lean over as if to pet the family dog. Hospice and medical professionals often refer to this as “starting the transition.”
They typically sleep more as the end approaches so if you’re visiting and they’re sleeping, stay and hold their hand. Talk or sing to them. Research and experience shows that those dying can most likely hear. Note, in general, those with Alzheimer’s sleep more so be careful in jumping to the conclusion that they’re getting ready to pass. They may just be tired or bored.
Re-engage a hospice service to evaluate your loved one so that they can bring in their care team to make your loved one as comfortable as possible. This will relieve you from being a full-time caregiver, give you support, and the care team can answer any questions you may have.
As a person is passing, their lips and skin get dry, which can be uncomfortable. Wet their lips with sponge sticks if they are having difficulty swallowing, and put on lip balm so the lips don’t chap or dry out. Put lotion on their arms and legs if their skin isn’t too thin.
In the hours before passing, the hands, knees, and feet will start to turn purplish and their skin will feel clammy. These are helpful visual clues for timing if you want to give family and friends the opportunity to say goodbye.
These symptoms are only half of the equation. They make your loved one’s passing REAL. The other half is about you and how you handle this experience. Despite everything you’ve gone through over the past several years on this journey, it’s hard to actually let go of the person, especially if you’ve visited them frequently or they live with you. You may ask yourself, “What happens after this journey is over?” It’s okay to ask questions. Every person grieves differently. People may say, “At least they’re at peace now,” but that’s not always consoling. And that’s okay, too.
It’s important to think about how you’ll navigate these last days. There is still time to tell them how wonderful they’ve been, how much positive influence they had on your life, all the things we tend not to say when a person is alive and well.
It can be soothing to listen to music that is relevant to them. Talk about your earliest memories and tell stories that make you laugh. Tell them what having those memories with them means to you.
It’s okay to cry while saying these things. This is one of life’s most intense times and there are no rules. Give yourself grace and know that grief comes in waves. You may not even feel much at the time and for several days. You may feel lost, especially if you’ve been the primary caregiver. After all, a very long journey is about to end. Be gentle with yourself. Grief has no timeframe.
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
My dad lived for 15 years after his Alzheimer’s diagnosis, dying in 2011. His final three years were nothing like is described in this post. His death came quickly in the final two days of his life when he did not leave his bed. On the second day, I sat by his bedside for a long time, noticing that his breathing had changed. As the end came, his breaths were farther and farther apart until they were no more. I called the hospice nurse, who came to pronounce his death. We were assisted in the final three years by a variety of caregivers and friends. I can’t say that dad evolved into a new person. That is something that is impossible to know. What I do know is that he was treated as well as I would want to be treated. He was cared for lovingly until the end, but I have no reason to believe that he knew who I was, or anyone else for that matter. We should take care not to project our own values and wishes onto those with dementia. To do so is a disservice to them.
I wish we had A support group where those of us who want medically assisted death to be legal could have discussions. The only person that I can discuss this topic with is my spouse.
Linda, if you are a member of Final Exit Network, we have monthly forums to discuss these issues. Otherwise, maybe there are some death cafes near you, or online? Unitarian-Universalist churches have members who believe in MAiD, as well as humanist groups. It’s wonderful that you can discuss your wishes with your spouse; many people are afraid to do that. Maybe both of you would benefit from seeking out groups I’ve suggested?
Agreeing with Lamar Hankins, I have a friend whose wife has not responded to him (or anyone else) for almost 3 years. Visits cause him much sadness while showing no apparent benefit for her. Asserting that “she’s in there somewhere” is wishful thinking and encouraging active love for her (as opposed to good care) may well create guilt over an unrealistic expectation.
Of greater concern than the opinion itself is that the titles after Ms. Ostrowski’s name give an unwarranted appearance of professional expertise. “Certified Dementia Practitioner” and “Certified in Dementia Care” are certificates available after 8 hours of online training. (https://www.nccdp.org/cdp.htm and http://dementiacareeducation.com/dementia-care-certified/ ) “Certified Senior Advisor” is achievable via a 30 hours long virtual course. (chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.csa.us/wp-content/uploads/virtual-sept-2023.pdf) or by passing an exam online without taking any classes. (https://www.csa.us/certification/apply-for-csa-certification/)
Of further concern are links in this article leading to Ms. Ostrowski’s LLC website, where she sells consultation services based partially on these easily obtained continuing education certificates. People looking for help coping with a recent dementia diagnosis are vulnerable and unlikely to examine the credentials the proprietor asserts.
Obviously, none of what I’ve written speaks directly to Ms. Ostrowski’s actual ability to guide people affected by dementia. I have no knowledge of that. And I very much favor FEN printing diverse opinions, including opinions I disagree with. But should FEN be allowing blog authors to link to their for-profit websites? Should FEN allow blog authors to give an illusion of formal qualifications by mentioning easily obtained continuing-education certificates where State licenses and university degrees are often found? I think “no!” is the appropriate answer to both questions.