Navigating the last stages of Alzheimer’s
Perhaps your mother has just received her diagnosis, after weeks of feeling unusually forgetful and foggy-minded. Or perhaps your husband has been living with it for years and you’ve begun to notice his symptoms worsening, his strength fading and his ability to speak slowly reducing down to a handful of random words and disjointed phrases. No matter where you are in the Alzheimer’s journey, it’s never an easy path to walk. But looking ahead, difficult though it may be, can help give you clarity.
Knowing what to expect from the last stages of Alzheimer’s—and especially understanding how to recognize when your loved one has reached that part of the journey—is an important step. It helps you prepare for what’s to come so that you’ll be better equipped to handle it. And settling your loved one’s end-of-life arrangements ahead of time can help give you direction and ease your burden of responsibility when grief may be at its most poignant.
What to expect in the last stages of Alzheimer’s
Most of us are familiar with the typical portrait of an Alzheimer’s sufferer. They’re usually an older person, frail and unsure of themselves, easily confused and prone to getting lost. You may even already have a clear idea of what the beginning stages of Alzheimer’s look like from watching your loved one cope—they may have slowed down, both mentally and physically, and may have trouble keeping to a schedule or a budget.
Alzheimer’s, however, is a progressive disease, meaning the symptoms grow worse over time. Some signs that will let you know your loved one has entered the final stages of Alzheimer’s progression include:
- Physical Changes: They may struggle with even the most basic actions, like speaking, eating (especially swallowing), and walking. They will likely require assistance in the bathroom and may become incontinent. In many cases, they will need help sitting up or walking, and may spend most or all of their time in a chair or their bed. They will be extremely prone to illness or infections, especially pneumonia.
- Behavioral Changes: Many sufferers become uncharacteristically aggressive or inappropriate, or withdraw completely in social situations. Their sleep patterns may be reversed or disturbed, and they will need a high level of help with personal care, even simple things like brushing their hair or teeth. Wandering is a common and potentially dangerous symptom, as people in the last stages of the disease generally have little to no awareness of their surroundings or the potential hazards therein.
- Psychological Changes: The mood swings which characterize even early-stage Alzheimer’s tend to become more pronounced towards the end of the disease’s progression. They may become easily frustrated, uncooperative, or angry—or they may seem completely detached, depending on their level of awareness. Some people become incessantly demanding, or timid and easily startled, while others may become unresponsive. They may become prone to compulsions like hoarding or rummaging. For many, the hardest change of all is that their loved one will eventually become unable to recognize even their closest friends and family, either confusing them for others or seeing them as complete strangers.
Coping with the challenges of late-stage Alzheimer’s
While Alzheimer’s manifests differently from person to person, it is true of all late-stage sufferers that the support of their loved ones and health care providers alike is key to maintaining their quality of life. You may not be able to cure them—no matter how much you wish you could—but by being there for them when they need you, you can ensure that they never have to suffer alone.
Often, it’s the little things that can make the most difference for them. A physical therapist can teach you how to safely transfer your loved one from their bed to a chair or the bathroom, how to change their position in bed to avoid bed sores and discomfort, or how to help them do range-of-motion exercises to keep their muscles and joints from getting stiff. Special cushions and mattresses can help ease pressure, and maintaining a diligent feeding and toilet schedule can help prevent some of the wandering behavior associated with hunger, thirst, or the need for relief. Decorating their room with pleasant things they like and enjoy can make all the difference on those days when they’re unable to do much more than look around. If you can, try and make sure their room has soft lighting—not too harsh or too dim. If they’re religious, you may consider asking a spiritual advisor or member of the clergy to see them.
If they are in a hospice, hospital, or other residential care setting, medical professionals may take care of many of these tasks for you, but that doesn’t make your presence or care any less valuable to your loved one. Sometimes, simply sitting with them, comforting them when they need it, and letting them hear a kind voice and see a friendly face—even when they don’t seem to recognize you—can reassure them and bring them a sense of peace.
However, Alzheimer’s isn’t just difficult to cope with for the diagnosed person—it can be challenging for their loved ones, especially caregivers, to endure as well. Having other friends and family members help with the constant care that late-stage Alzheimer’s typically requires can take some of the weight off of your shoulders and give you the space you need to take care of yourself, too. Doctors, nurses, and other medical professionals are invaluable sources of information and guidance. Joining a support group can give you a safe space in which to vent, grieve, or simply be reminded that you are not alone. And having a plan in place for what to do when your loved one eventually passes on can help you feel a little more secure knowing that you’ll have a clear direction to follow when the time comes and your life changes yet again.
Making end-of-life arrangements for your loved one
Whether you’re just coming to terms with your loved one’s recent Alzheimer’s diagnosis or have begun to recognize the signs that their disease has progressed to its final stage, planning for the future is an important part of taking care of both your loved one’s needs and yourself. While it may be an uncomfortable topic to broach, talking about it now can make the difficult road ahead a little less difficult to navigate.
If they are still able to communicate:
If your loved one can still reason and communicate effectively, talk with them about their wishes. Be sure to discuss medical care as well as end-of-life arrangements. Some important points to raise with your loved one include:
- Whether they prefer cremation or traditional burial, or another option
- What type of memorial service they would like and what particular elements they would like included—or if they prefer not to have a service at all
- Where they would like to be laid to rest—some people also like to choose their own urn or casket
- How much, if any, money has been set aside in prepaid plans, funeral insurance, or other financial accounts for end-of-life expenses
- Any specific information they might like included in their obituary or engraved on a tombstone or urn
If possible, try and get advance directives in place. A living will allows them to communicate what they want in terms of medical care and end-of-life arrangements. Durable power of attorney for health care lets them choose who will legally be empowered to make important medical decisions for them, such as where they will receive care and when to refuse it, when they are no longer able to do so themselves.
Make sure to discuss and share advance directives and any related information with other family members and health care providers. Know where important documents can be found and how to access them, and be sure to stay up-to-date with any changes that may affect your or your loved one’s decisions.
If they can no longer make informed decisions:
If your loved one is no longer able to make informed decisions for themselves, it is up to you and the rest of their family to act in their best interests. Whenever possible, prioritize their wishes—if they are known—first and foremost. In any cases where your loved one did not specify a course of action, be sure to consider their cultural background, religious beliefs, family values, and anything else you know about them that can provide clues to what they would want to be done.
Do not feel that you have to make these decisions alone. Rely on professional advice whenever plausible—ask doctors and nurses what they recommend, and ask attorneys or financial planners for help with paperwork. Consider holding a family meeting to discuss what should be done and make a plan together. If family members disagree strongly about your loved one’s wishes, social services or mediation services may be helpful in resolving conflict.
How direct cremation simplifies the planning process
When making end-of-life arrangements, there is much to be done. There’s paperwork to be filled out, budgeting options to decide on, and harder, more personal choices to make, including finding the words with which to say your final farewell. It can seem overwhelming, but one particular option can help streamline the planning process: direct cremation.
Traditional funeral options can cost thousands of dollars and lock you and your family into a strict schedule—one which may be particularly inconvenient to faraway friends and family who might wish to attend a service. Direct cremation, on the other hand, is simple, affordable, and gives you and your loved ones more freedom to plan a personalized memorial service.
With Tulip Cremation, arranging direct cremation is quick and easy—all it takes is a phone call or a visit to our website to get started. We’ll take care of making all the necessary arrangements, including transportation, a private, dignified cremation, and return the ashes to your family. We’ll also register your loved one’s death and acquire any necessary death certificate copies on your behalf, meaning you’ll be able to spend less time filling out forms and more time with your loved ones. Whether you’re ready to start planning or simply want to know more, feel free to contact us anytime, day or night—our dedicated Family Care Team is available to talk whenever you need us.
Tulip’s direct cremation service is simple, dignified, and affordable, with prices starting at just $600 and no hidden fees. Whether you’re planning ahead or require an at-need service, our Care Team is available 24/7 at (844) 942-4909. You can also arrange online if you prefer.