She had a couple of unavoidable stays last year in the hospital due to falls. This accelerated her decline due to delirium, which was treated as if she was just being an unruly and difficult patient. How should we go about planning for the years of decline my mother may experience before her actual last moments near death? Some are about her medical care and some are about other aspects of her life, like where she lives and how she spends her days. Planning ahead is an excellent idea. These steps are:. Let me now explain each of these in a little more detail. You can also learn more about the progression of dementia by reading books, reading articles, or connecting with other dementia caregivers.
Honestly, most people find it sad and upsetting to learn about this, so many avoid it. A research study found that when people viewed videos of people with advanced dementia, they subsequently made different choices on their advance care planning documents. Many people with dementia are also living with other chronic conditions. For instance, heart failure and chronic obstructive pulmonary disease are two common chronic conditions that often cause hospitalization. They can even cause breathing problems that might require the use of a ventilator a breathing machine.
What kinds of problems or declines should we anticipate? These are common events that tend to spark a significant change in health status or care arrangement.
- Alzheimer’s Disease and Caregiving.
- Alzheimer's Disease: Taking Care of the Caregiver!
- Four Steps for Caring for a Senior with Dementia or Alzheimer’s;
I especially like the questions on page 11, which are intended for the caregivers of a person no longer able to make decisions i. They include questions such as:. Another question that I think is useful for you to consider: At what point would she want us to back off from life-prolonging care?
Now, you will probably find that it is hard to come up with exact answers to these questions.
What I Wish I Knew Before My Mother’s Alzheimer’s Death
Just spending time mulling them over and talking with other family members will help you lay that foundation, I promise. Now, if your mother had previously completed an advance directive, you may be wondering if you need to bother going through these questions a second time. I would say yes. Furthermore, in many states, certain forms specifying preferences for medical care, such as POLST Physician Orders for Life-Sustaining Care , can be completed and revised by surrogate decision-makers. Ideally, medical care helps people with all three of these goals, because all three are usually quite important to people.
But in reality, medical care often involves making trade-offs. For instance, people often accept the side-effects of chemotherapy which can include pain and disability , in order to have a chance to cure their cancer and live longer. Furthermore, people with dementia have a high risk of developing delirium in the hospital , which can set their brain function back considerably. In geriatrics, we routinely discuss goals of care with patients and families. And so, we invite our patients and families to tell us how important each of the three goals is to them, and which they would prioritize, if there were a conflict.
You can certainly do some preliminary thinking on your own, when it comes to goals of care. When you discuss goals of care with your medical team, here are a few more things to keep in mind:. Basically, it involves asking two key questions:. So for instance, surgery and hospitalizations become riskier when people are frailer, or have dementia.
You can also use the benefits-and-burdens framework to work through non-medical dilemmas, such as whether to continue with a given caregiving situation versus make a change. Start by identifying your available options for managing a situation, or even just taking a next step in addressing it. These are some of the tradeoffs you would be making, in exchange for certain likely benefits. Moving to memory care can also mean more opportunities for social engagement and access to activities designed to engage people with dementia.
But almost everyone feels better having clarified what trade-offs they are making and why, when they decide to proceed — or not proceed — with a certain intervention, or a certain care plan. This is done by intervening when people are acutely ill, and by using the emergency room, hospitalization, or even intensive care, in order to minimize the chance of a person dying. It also means providing chronic medical care and preventive care, again with a key goal being to minimize mortality risk. Because when people are declining from dementia — or if they otherwise have limited life-expectancy — usual medical care becomes less likely to help them live longer, or better.
It also becomes more likely to cause confusion, distress, and medical complications. Furthermore, usual medical care can crowd out, or directly conflict, with approaches that help people with dementia maintain the best possible quality of life and function. When given the opportunity, most families of people with moderate and advanced dementia eventually decide to prioritize the goals of well being and function — helping a loved one be comfortable, out of pain, and able to enjoy companionship and the small pleasures of everyday life to the best of their ability — over the goal of extended lifespan whatever the cost.
Of course, families often find it difficult to consider these questions of scaling back care. The key, once again, is to start by discussing goals of care with your usual healthcare providers. Each of these can take you a while to work through. Going through cycles of thinking about things gives people some time to gather up various bits of information, and also digest the information and their own emotions.
Every time you think through one or more of these steps, you are adding to that foundation I referred to at the beginning. You are creating and strengthening a foundation that will provide you with support and guidance in making decisions for your mom.
Most decisions you make on her behalf will never feel easy. They will all involve trade-offs, and some uncertainty, and perhaps even a little sorrow. But they can be less stressful, and you almost certainly can make her life better. This means less anguish for you, and more positive energy to put towards whatever time you have left with your mom. Remember, you can start using the five steps of this navigational tool at any point and revisit them over and over.
But starting your thinking now, before there is a crisis? Good luck, and let us know how it goes. This article benefitted immeasurably from suggestions and edits by Paula Spencer Scott, my former Caring.
Late-Stage Caregiving | Alzheimer's Association
My husband , of 60 years, very recently died of Alzheimer. One of the most helpful things his neurologist did was to refer him to Riverside Hospice. He stated he might last another 6 to 18 months. He died just short of a year.
Having the Hospice nurse, who checked his vital signs and answered my questions and an aid twice a week to bath him helped me considerably. With my sons help, who lived with us, doing the lifting, we were able to keep him at home. Hospice provided the equipment and supplies needed for his care. At the time of his death he could not walk or talk intelligibly. I noted a change in his breathing one night and asked the nurse to come. He died very peacefully the fallowing morning.
Thank you for sharing your story.
You are here
I am glad you had a good experience with hospice, and that your husband had a peaceful death at home. You are a godsend. I only wish you could be cloned so that every older patient had a doctor like you. I do consider myself very ordinary among geriatricians, and I only wish that there were more of us available, to be of assistance.
But as none of us can be cloned and we are all in short supply, I am trying to share what we know and do online. Thank you for being part of this community; your attention and encouragement helps me keep the site going. Being a caregiver can impact your physical health and emotional well-being as well as raise legal and financial concerns. So what should you do? Below are some tips for managing some of the most common challenges caregivers face. Being a caregiver is both rewarding and challenging. Effective caregivers are knowledgeable about the disease and its symptoms, strive to take care of themselves and accept help from all available resources to ensure their own well-being during their caregiving journey.
Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Alzheimer's Disease: Taking Care of the Caregiver Tips are presented that offer some guidance on how to maintain and improve your caregiving relationship. One tip to remember is to take time for yourself. Appointments Overview Resources. Caregiver challenge: Caregiving responsibilities Tips for coping include: Set realistic and attainable goals for yourself and your loved one.
Identify smaller steps to reach each goal. Create a plan to outline first steps to get started. Build your support team. Ask for support from family, friends, doctors, faith-based organizations, social service agencies and others to help with caregiving tasks and issues as the disease progresses. The mightier your team, the stronger you are. Caregiver challenge: Physical health Tips for coping include: Take care of your own healthcare needs.
Focus on ways to maintain a healthy lifestyle while caregiving.