Alzheimer's Disease - The End Stage (Mini-Series Part 3)

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Today, is the third installment of our Seven Stages of Alzheimer’s series. On this episode we will be discussing the final stage, stage seven. The final stage of Alzheimer’s is often referred to as end-stage Alzheimer’s. First, we’ll discuss what happens during this final stage and how you, as a caregiver, friend, and family member can support your loved one during this time. Then, we’ll move on to how you can prepare yourself for what will happen. Finally, we’ll talk about the importance of a support system and asking for help. Now let’s move on to the rest of the show.

Alzheimer’s is a progressive disease that ultimately ends in death. This seventh and final stage is scary. Caring for a loved one with late-stage Alzheimer’s is difficult and impossible to do alone. We want to stress the importance of reaching out to your own support group when you need help. And, if you are finding yourself unable to take care of your loved one on your own, talk to your doctor. Depending on how much time your loved one has left, your doctor may suggest hospice care, a memory care facility, or professional home care. Taking care of a loved one with Alzheimer’s is difficult, but it can be even harder in this final stage, so make sure you are doing what is best for you, as well as what is best for your loved one.

According to Senior Link, stage seven is the final stage in the progression of Alzheimer’s disease. At this stage, most people lose their ability to speak or communicate and they often require assistance with most of their activities, including things such as toileting, eating, dressing, and bathing. Because people in stage seven often lose psychomotor capabilities, which is what helps someone think and act upon that thought, they may be unable to walk or require significant assistance when walking. On average, this final stage lasts two and a half years and ends when the person struggling with the disease passes away.

Alzheimer’s disease is a progressive disease that gradually worsens over a period of four to twenty years. On average, however, most people live between four and eight years following a diagnosis. The progression of the disease is different for each individual person, but family members and caregivers should familiarize themselves with the typical stages that occur throughout the progression of the disease. It’s a challenging road to travel for both the person with Alzheimer’s disease and those who love them, but knowing what to expect can help to ease some stress and uncertainty.

Crossroads Hospice and Palliative Care states that it is important for caregivers to know when an individual with dementia is close to the end of their life because it helps ensure they receive the right amount of care at the right time. It can be difficult to know exactly when this time is due to the variable nature of dementia’s progression, but understanding common end-of-life symptoms of seniors with dementia can help. However, it cannot be overstated that symptoms, progression, and signs of Alzheimer’s can vary widely from individual to individual. A well-respected and renowned dementia expert that we work closely with has summed up the comparison of dementia patients perfectly when she explains to families that “when you see a person with dementia, you’ve only seen that one person.” Again, this is because it can vary widely between individuals.

In the final six months, many people with Alzheimer’s are diagnosed with life-threatening conditions, such as cancer, congestive heart failure, or COPD and they tend to have an increase in hospital visits and admissions. In the final two or three months, someone with Alzheimer’s will also lose their ability to speak. They may be able to speak short sentences at a time during the start of this period, but they will only be able to utter one or two words at a time if any by the end. They will also experience difficulty swallowing. Choking and aspiration is a very large concern during this final stage of Alzheimer’s. They will also lose the ability to walk or sit up without assistance. If they haven’t already, they will also begin experiencing incontinence.

In the final days and weeks leading up to the very end, your loved one will have increasingly cold hands, feet, arms, and legs. They will also lose their ability to swallow. Many people with Alzheimer’s pass away due to this reason. Many people with Alzheimer's see an increase in restlessness and agitation, as well as an increase in the amount of time sleeping or being unconscious. And finally, they will experience changes in breathing, possibly due to the inability to swallow. They may take shallow breaths or stop breathing for short periods of time.

If your loved one begins experiencing any of the symptoms we just listed, speak to your doctor about your loved one’s end-of-life plan. Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion and these symptoms typically appear when someone with Alzheimer’s has six months or less left. Talk to your doctor and a hospice professional about how they can help provide added care and support for your loved one during this extremely hard and upsetting time.

Right now, Alzheimer’s is the sixth-leading cause of death in the United States and unfortunately, there is no cure for this disease as of yet. If you are currently dealing with this disease, either with yourself or a loved one, know that you are not alone. Over five million Americans are living with Alzheimer’s. Join a support group in your area to connect with others in your situation or consider going to therapy. Find whatever works best for you and your family. You can also call the Alzheimer’s Association’s hotline anytime, at 1-800-272-3900. They have a lot of resources and knowledge to offer.

Crossroads Hospice and Palliative Care also says that perhaps the hardest thing for families is when a loved one with dementia is no longer able to eat or swallow. Because an individual with dementia is unable to understand the benefits of feeding tubes or IV drips, they will often be incredibly distressed and attempt to remove them, causing added pain and risk of infection. Instead, focus on keeping the individual comfortable. Supporting them with mouth care to prevent their mouth from becoming dry will allow them to make their final transition in peace.

Now that you know what will happen to your loved one during the seventh and final stage of Alzheimer’s, let’s move on to how you can help your loved one during this time.

The Alzheimer’s Association says that as the disease progresses and intensifies, around-the-clock care is usually required. During the late stages, your role as a caregiver focuses on preserving their quality of life and dignity. Although a person in the late stage of Alzheimer's typically loses the ability to talk and express needs, research tells us that some core of the person's self may remain. This means you may be able to continue to connect with your loved one throughout the late stage of the disease.

At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste, and smell. You can try playing their favorite music, reading portions of books that have meaning for them, or looking at old photos together. You can also make one of their favorite foods. Try rubbing lotion with a favorite scent into their skin and brushing their hair. Sitting outside together on a nice day can also be a way to engage them and spend time with them.

If your loved one is living in a facility, the best way to help them is to visit them, even if it is difficult for you. A touching story we read that we hope can help you and your family have a sense of hope during this time, is that of Tony Hawke, the skateboarder, and his mother. In a blog post for Alzheimer’s Association, Tony Hawke wrote that when he visits his mother now, she doesn’t recognize him. Sometimes there is a slight glimmer in her eye, sometimes she babbles incoherently, and sometimes she uncontrollably bursts into tears.

On this particular day, they mostly sat in silence. He gave her updates on their family and fed her Coca-Cola through a straw every few minutes (which she still loves, even in her catatonic condition). But then he noticed her fingers twitching. He’s not sure for how long; maybe they’d been moving the whole time and he wasn’t paying attention.

As he watched, he was reminded of her habit of typing unconsciously throughout his life. And even though it may have only been her body (yet again) betraying her, it gave him comfort knowing that perhaps she is still in there somewhere typing away about her life, her experiences, her feelings, and their current conversation. Most of his visits end with a feeling of despair and impending finality, but on this day, he left with a sense of hope.

You can find the entire story written by Tony Hawke in our show notes for this episode. If you have time, we highly recommend reading it. It can be helpful to see what someone else in a similar situation is going through.

If you are currently experiencing the early stages of the disease, we know you probably don't want to think about this last stage yet, but now is the time to talk about end-of-life care and any wishes your loved one may have for when the time comes. It is better to create a plan with your loved one than to second guess your own decisions later. If you decide to be the primary caregiver during this final stage, there are several things you can do to help make your loved one as comfortable as possible, and after all, that’s all you really can do at this stage.

One of the most important daily caregiving tasks during late-stage Alzheimer's, according to the Alzheimer’s Association, is monitoring eating. As a person becomes less active, they will require less food. But, a person in this stage of the disease also may forget to eat or lose their appetite. Adding sugar to food and serving them their favorite foods may encourage eating and their doctor may even suggest supplements between meals to add calories if weight loss is a problem.

The Alzheimer’s Association also says that difficulty with toileting is very common at this stage in the disease. The person may need to be walked to the restroom and guided through the process. Incontinence is also common during late-stage Alzheimer's and is something your loved one will likely experience. For more information on toileting, you can listen to our recent Quick Tips episode on Helping in the Bathroom. You can find the episode on our website, on our YouTube channel, or wherever you get your podcasts. You can also find more episodes on Alzheimer’s and dementia on our YouTube playlist.

During this final stage, your loved one will have decreased mobility and will likely be unable to stand or sit up on their own. Being bedbound or chairbound can introduce new health risks for your loved one. Make sure to move your loved one every two hours to prevent bedsores and improve their blood circulation. Helping them do muscle exercises can stop their joints from freezing, but make sure you consult their doctor before doing any exercises with them. Similarly, make sure you have proper training on how to lift your loved one so that you do not injure them in the process or yourself. A nurse or a physical therapist can teach you how to properly lift someone, but for now, know that you should never lift someone by pulling on their arms or shoulders.

Your loved one will be more vulnerable to illnesses and infections during this stage. It is important to keep their mouth and teeth clean and clear to reduce the risk of bacteria that can cause pneumonia. The flu can also lead to your loved one getting pneumonia. Make sure you, your loved one, and those in close contact with them get the flu vaccine to lower their risk of developing pneumonia. Finally, treat cuts and scrapes immediately and call their doctor if they have a deep cut or if it doesn’t heal.

The Alzheimer’s Association states that communicating pain becomes difficult in the late stages of the disease. If you suspect that your loved one is in pain or is suffering from an illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness, look for physical signs. Signs of pain and illness include pale skin tone, flushed skin tone, dry, pale gums, mouth sores, vomiting, feverish skin, and swelling of any part of the body. You should also pay attention to nonverbal signs. Gestures, spoken sounds, and facial expressions (wincing, for example) may signal pain or discomfort. And you should be alert to changes in behavior. Anxiety, agitation, trembling, shouting, and sleeping problems can all be signs of pain. If you suspect your loved one is in pain, call their doctor immediately. They can help make your loved one comfortable with medication.

Now that we’ve covered how you can help your loved one during this stage, let’s move on to how you can prepare yourself for what happens during this stage and after.

The National Institute on Aging says that Dementia causes the gradual loss of thinking, remembering, and reasoning abilities, making it difficult for those who want to provide supportive care at the end of life to know what is needed. Because people with advanced dementia can no longer communicate clearly, they cannot share their concerns. Is Uncle Bert refusing food because he’s not hungry or because he’s confused? Why does Grandma seem agitated? Is she in pain and needs medication to relieve it, but can’t tell you?

As these conditions progress, caregivers may find it hard to provide emotional or spiritual comfort. How can you let Grandpa know how much his life has meant to you? How do you make peace with your mother if she no longer knows who you are? Someone who has severe memory loss might not take spiritual comfort from sharing family memories or understand when others express what an important part of their life this person has been. Palliative care or hospice care can be helpful in many ways to families of people with dementia.

Sensory connections—targeting someone’s senses, like hearing, touch, or sight—can bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen their agitation.

There are many things you can do to prepare yourself for this final stage of Alzheimer’s. As we mentioned earlier, during the first few stages of Alzheimer’s, you should make an end-of-life plan with your loved one so you can know how to best uphold their wishes. If you didn’t make a plan early on, it’s not too late to create one now. You may not be able to include your loved one while making their plan, but you can sit down with your family and caregiving team to create a plan together.

When making an end-of-life plan, think about what you think your loved one would want, but also consider what is best for them. You also have to think about what is best for you during this time. If you think your loved one would want to stay in your care at home, but you cannot take care of them by yourself anymore, that is something you need to seriously consider. Ultimately, you are trying to make your loved one as comfortable as possible during this last part of their life.

The National Institute on Aging also tells us that quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimer’s disease. However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimer’s. They may believe that the person’s quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.

When making care decisions for someone else near the end of life, consider the goals of care and weigh the benefits, risks, and side effects of the treatment. You may have to make a treatment decision based on the person’s comfort at one end of the spectrum and extending life or maintaining abilities for a little longer at the other.

With dementia, a person’s body may continue to be physically healthy while his or her thinking and memory are deteriorating. This means that caregivers and family members may be faced with very difficult decisions about how treatments that maintain physical health, such as installing a pacemaker, fit within the care goals.

Now that we’ve talked some about how you can prepare yourself for the final stage, we’re going to move on to the final part of this episode, which is what happens after.

The National Institute on Aging states that many family members taking care of a person with advanced dementia at home feel relief when death happens—for themselves and for the person who died. It is important to realize such feelings are normal. You may feel guilty that you are feeling relieved, and that’s normal, too. Calling the Alzheimer’s hotline or joining a local support group may be beneficial after your loved one has passed on.

After your loved one is gone, don’t forget to celebrate their life and remember that Alzheimer’s wasn’t their identity. Remember the person they were before the disease set in. Look over scrapbooks you made together and photo albums or other items that remind you of them.

The National Institute on Aging says that hospice—whether used at home or in a facility (such as a nursing home)—gives family caregivers needed support near the end of life, as well as help with their grief, both before and after their family member dies. If you used hospice during the final stage, they can be another great resource you can utilize even after the passing of your loved one.

Many people find it helpful to get involved after their loved one is no longer with them. Joining an Alzheimer’s advocacy group or donating to a research center are both good ways to stay involved in the Alzheimer’s community. You can also offer support and help to other families if you want to. You are in a unique position to help others that are currently going through what you have been through. Offering support to others can also help you reclaim a sense of purpose if you are struggling after losing your loved one.

This stage and this disease are hard to go through and impossible to go through alone. Reach out to your loved ones and your community for support. There is no cure now, but one day soon, we hope we will be able to End Alzheimer’s together. Visit the Alzheimer’s Association website to learn more about their End Alzheimer’s campaign.

We want to say thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate these long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone who could benefit from this episode, please share it with them.

Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. We look forward to seeing you next time on All Home Care Matters, thank you.

Sources:

https://www.seniorlink.com/blog/the-7-stages-of-alzheimers

https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/dementia/

https://www.alz.org/help-support

https://www.alz.org/help-support/caregiving/stages-behaviors/late-stage

https://www.alz.org/blog/alz/october-2018-(1)/tony-hawk-shares-his-personal-alzheimer-s-story

https://www.nia.nih.gov/health/end-life-care-people-dementia

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