How to Cope with End-Stage Dementia

No one likes to imagine what will happen if a loved one is diagnosed with dementia. The reality of a dementia diagnosis is difficult and heartbreaking to face, but if you fail to face it before the situation becomes a crisis, you may actually be doing your loved ones more harm than good. This is why it is important to plan for the worst but hope for the best – especially when planning for the possibility that you or your loved one may get dementia.

If it is progressive, dementia is a process that gradually takes over different parts of the brain. As dementia spreads throughout the brain, the bodily functions controlled by that part of the brain will begin to deteriorate. There are three main features of end-stage dementia: extremely decreased cognitive function, the need for assistance with almost all physical activity, and the loss of the ability to control normal bodily functions. By focusing on these features, we can better determine how to plan for the worst, even while we hope for the best.

• Cognitive decline: As dementia progresses, it is important to prepare for a time when your loved one may no longer recognize you or other friends and family members, even if she has known them for years. Eventually, people with end-stage dementia will not even be able to speak. While it is impossible to know how much they understand, it is important to continue communicating with them in as normal a way as possible.

At this point it is good to identify yourself each time you see your loved one. For example, you might say, “Hi Mom, it’s your son, John.” By using a calm, friendly voice, your tone can communicate that they are safe and loved. It may be up to you to carry the conversation, but having someone talk with them can help them to feel valued. Because long-term memory deteriorates much more slowly than short-term memory, you may find that your loved one is more receptive when you talk with her about the “old times.” People with dementia may not remember what day it is or where they are, but they will enjoy speaking about events from their childhood or early adult life.

Another great way to connect with someone who has dementia can be through music. Music is processed in a different area of the brain than speech, so many people who suffer from dementia may be able to sing or recognize music when they are unable to carry on a normal conversation. Singing songs from your loved one’s past can be a great way to connect with them and even get them to smile and sing along.

• The need for total assistance: Dealing with the decline of your loved one’s mental abilities can be emotionally draining, but providing complete physical assistance can be hard on your body. No matter how much you may want to, it is impossible for one person to provide 24/7 care to someone who suffers from dementia without causing significant harm to his/her own physical health. Often, this difficulty means that a loved one with dementia will need to live in a long-term care facility such as a nursing home. This can provide relief for the caregiver, while allowing the person with dementia to receive the assistance they need.

If you decide to keep your loved one in the home, your loved one will likely need round-the-clock care, whether it is provided by a combination of family or friends, professional caregivers, or both. It is important to remember that one person cannot do it all, nor should they try to. Your loved one will benefit from a variety of caregivers with differing abilities and skills.

• Loss of bodily functions: People with end-stage dementia will eventually lose the ability to walk, feed oneself, control bowel and bladder, and swallow without aspirating food or liquids into the lungs. Additionally, the fact that your loved one is immobile and confined to her bed can cause skin breakdown from sitting or lying in one position too long. Eventually, this skin breakdown can lead to open areas that are prone to infection, known as bedsores. For this reason, it is important to make sure your loved one has a position change every two hours.

The inability to eat by oneself means someone has to physically feed the individual. This can be accompanied by poor appetite, so the caregiver needs to keep track of what and how much the patient eats and drinks. Otherwise, the person may suffer from dehydration and malnutrition, which can cause additional medical conditions.

Problems with swallowing food and liquids can cause the most problems. Aspirating foods or liquids can cause pneumonia, which can cause death in a frail person. Caregivers need to be alert for coughing when eating or drinking, because this is a sign of aspiration.

Sometimes the only way to decrease the risk of aspiration is a feeding tube, which often becomes necessary as the condition progresses. However, once decline has reached this point, many people would not like to be kept alive artificially, whether that means feeding tubes or artificial respiration. For this reason, it is important to make sure that you and your loved ones state your desires regarding end-of-life care in an advance medical directive before dementia sets in.

Unfortunately, many people do not like to think about the possibility that they may be diagnosed with dementia at some point, and therefore they do not have an estate plan in place. If you become incapacitated and you have not executed a medical or financial power of attorney, your loved ones may have to ask a court to appoint them guardian and conservator over you so they can make those decisions for you. In that case, the decision falls to the court to decide who to appoint to make decisions for someone who is incapacitated. The person who the court appoints is not necessarily who would have been chosen before the incapacity set in. To avoid forcing your loved ones to go through this difficult process while they are already dealing with an incapacitated family member, it is important to execute these documents as soon as you become an adult. Furthermore, it is important to review these documents on a regular basis and update them as changes in your family situation, your financial situation, or changes in the law occur.

ASK KIT KAT

Hook Law Center: Kit Kat, what can you tell us about the resurgence of bald eagles in Virginia?

Kit Kat: Well, this is interesting, because, defying the experts who predicted the demise of the bald eagle in urban areas in the state, the opposite has happened. Bald eagles appear to be rebounding, and actually thriving. “From the 50s to the 90s, the belief was that they would not nest in urban areas,” according to Bryan Watts, the director of the Center for Conservation Biology in Williamsburg. He continues, “But that hasn’t turned out to be the case. Eagles nesting in cities are producing at rates similar to and higher than ones nesting in rural areas.” Pairs have been spotted in Richmond, Williamsburg, Virginia Beach, and Northern Virginia. For a while, Norfolk International Airport had a problem with them attacking planes and in flight paths.

This represents a remarkable comeback since eagles were listed on the Endangered Species list several decades ago. Their numbers had been reduced due to the use of DDT which had been used as a pesticide. DDT was effective in killing insects, but it also affected eagles’ eggs. Eagles which had eaten fish contaminated with DDT produced eggs that were not able to develop full-term, because of a thinning of the egg shell. By 1963, eagles’ numbers had been hit hard, with only 487 nesting pairs spotted across the United States. Virginia at this time was down to 30 pairs.

With DDT eventually banned, they were able to make a comeback. Now there are more than 1,500 in Virginia alone. Their preferred habitat is tidal rivers, of which Virginia has several. Their diet normally consists mostly of fish, but urban eagles are adapting and learning to scavenge among landfills and in areas where hunters have left remains after skinning their kill. Feeding off landfills has its own drawbacks—like when they ingest other things like plastic—but overall, they are thriving. They also are becoming comfortable with people. There is a picture in The Virginian-Pilot of one sitting on a deck in the retirement community of Atlantic Shores in Virginia Beach about 10 feet away from a couple relaxing on their deck. Who would have guessed this would be the outcome for our national bird? It’s a great turn of events! (Lee Tolliver, “Swooping in to our cities,” The Virginian-Pilot, Dec.9, 2019, p.1 and 10)