Ask Miriam – July 2025
Dear Miriam,
I have been taking care of my wife for the last few years, and, while I have had some help in caring for her, I have been thinking more and more about how I will cope with the later stages of her Alzheimer’s disease. She is 78 and I am 81, we’ve been together for 60 years – she is the person that I would always talk to when I was worried, and, of course, now I can’t do that. While she is still able to talk to me now, I know she doesn’t understand what is happening to her. She also seems to be getting more confused each day. Despite that, she still seems to be in good spirits, and knows who I am. But how will I know what to do when she does not recognize me anymore? And what does it look like when she gets to the end? Anything you can tell me would help; even though it’s hard, I feel like it is better to know and be prepared.
—Prepared
Dear Prepared,
Your wife is lucky to have had you by her side all these years, and I know it must be very difficult to face the thought of losing her. While Alzheimer’s typically can take 8-10 years to progress to the latest stage of the disease, it can vary considerably from person-to-person.
When dementia is at its most advanced, people are often unable to communicate with words that accurately reflect what they feel or what they need, and they may not even be able to speak at all. They will also likely be completely dependent on others to bathe, dress, and eat. A person with advanced dementia is usually unable to walk independently and is eventually bed-bound. Once someone is bed-bound, they are more vulnerable to skin breakdown, leading to bed sores or wounds, which can become infected, so keeping the skin dry and clean is important.
In addition, it is likely that a person with end-stage Alzheimer’s will eventually have trouble swallowing food and liquids. Sometimes it is recommended that caregivers mix a “thickener” into liquids and provide soft foods that may be tolerated. But she might not be interested in eating at all, and this is completely normal. There is no need to force anything, and the caregivers may use lip balm and gentle cleansing of the mouth and teeth to keep her comfortable.
Hospice is a service which can be very helpful at this stage of the disease, and they work to ensure that the patient is not in any pain or discomfort. Medications are provided, if needed, to keep her comfortable, and the hospice nurses can recommend ways to connect with her, even when it seems that she is not responsive. This might include playing familiar music, using soft sheets and blankets, holding her hand, and telling her that she is safe and loved.
A hospice social worker is a good person to talk to about your fears, concerns, and wishes. They are there to walk you through and support you during this time. Having friends or family around may be important to you, or you may prefer to focus your energy on your wife. There is no wrong way to go through the decline and loss of a loved one; just remember it’s important to take care of yourself, too.
For more information about late-stage Alzheimer’s disease, call the Alzheimer’s Los Angeles Helpline at 844-435-7259, or visit our late-stage webpage.
Best,
Miriam
Questions for Miriam can be sent to askmiriam@alzla.org.