4 Misconceptions About Dementia Staging

Posted on Dec 09, 2020

1. There’s not a single dementia staging model. 

Staging one’s level or stage of dementia can be immensely difficult due to not only the various types of dementia but also the different staging models that may exist per dementia type. For the sake of clear communication between caregivers and family, it is crucial to determine which staging model will be implemented. Which staging model is to be followed should ideally be determined by a physician. Upon dementia diagnosis, feel free to ask which staging model will be utilized and how stages will be determined going forward according to this model. 

2. A dementia patient may seem to flow between stages. 

One of the most confusing aspects of dementia is the day-to-day mental state of the patient. Depending on the style of dementia, several days of intense confusion may be followed by days of apparent clarity and a return to one’s “old self.” While days of clarity should be cherished, treating them as a symptom of improvement may be emotionally precarious for loved ones. These good days following bad days can be a bit of a rollercoaster, so it is important for loved ones and caregivers to “zoom out”—determining the state of a patient’s wellbeing by taking an average of a month or even several months to gauge their condition—not one day to the next. 

3. There’s no set time per stage for patients. 

It’s not wise to estimate just how long it will take a dementia patient to move from one stage to the next. Too many variables exist that can speed up or slow down the rate of dementia stage progression. The type of dementia, specific age, activity, socialization, and even one’s diet can impact one’s time in a particular stage of dementia. No one can put a particular date on the rate of progression of one’s dementia.

4. There’s no singular symptom used in staging. 

As much as one would like a clear sign that their loved one has moved from one stage of dementia to another, that’s not necessarily how staging works. Instead, specialists look at a range of symptoms, their frequency, and many other factors to determine the stage of a patient’s dementia. While confusing for loved ones, this may actually provide a bit of hope for those who have already assumed an extremely late stage due to one or two specific symptoms. No two cases are identical, and no two timelines are the same. 

Palliative and Hospice Care in the Greater Tulsa, Oklahoma Area

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The Unique Experience of Mourning the Loss of a Loved One With Dementia

Posted on Nov 05, 2020

grandfather grandson

At times, dementia can feel as difficult for the loved ones of a patient as it is for the patient themselves. It’s hard to know how difficult it may be for the patient as they may lose their ability to express their thoughts and emotions. What is known on the other side of disease is the unique and gradual nature of mourning the loss of someone who has passed away due to dementia. To help explain this, we bring a personal story from an associated party.  

The day of my grandfather’s viewing was a difficult one. Though he had been experiencing dementia in varying stages for many years, I lived a busy life hundreds of miles away and was subsequently unable to regularly visit him. Because of these less frequent visits to witness his deteriorating condition, the silver lining was that I still thought of him as the Superman I remembered him as throughout my childhood. Now, he was just a fellow in a casket...with his mouth wide open.  

I came to learn that he had died in his sleep, but that he also slept with his mouth wide open most of the time. This odd combination meant that his mouth way now stuck open with no way of closing it short of gluing his lips together. There he lay in his casket, Prairie Home Companion tie (his favorite radio show), face looking stretched and odd. With just a few hours before guests were slated to arrive, my grandmother called the funeral director over.  

“Excuse me, sir. My husband’s mouth looks especially odd. Is there anything we can do?”  

The funeral director explained that his jaw was locked open, but that it was possible that enough time had passed that they may be able to close it.  

I remember looking over the lapels and of my suit and the old fashioned couches in the viewing room to see a funeral director forcefully, yet discreetly trying to force my deceased grandfather’s mouth closed as my grandmother looked over his shoulder. In that moment, I’m not sure what came over me. I lept to my feet, with tears welling in my eyes, and began to sprint in the direction of the director. My older brother saw my approach and held me back.  

“Leave him alone!” I exclaimed from the inside of my brother’s elbow. Tears ran down my face as it felt like my voice had shaken the flowers that lined the casket. I collapsed into my brother’s arms, soaking his suit jacket in tears. He led me over to the couch so I could sit down and catch my breath.  

My grandmother approached me with a glass of water and calm concern. She handed me the water with a delicate smile, her eyes completely dry while my own gushed.  

“How can you be so ok with that man touching him? Why aren’t you more outraged?” I asked, almost immediately regretting my negative tone.  

“Sweetie, I’ve been mourning the love of my life, your grandfather, for years. My grieving occurred over many months before this day, as he drifted further from this world while still physically with us. My eyes are dry now because he’s free. He’s not in that casket. That man can’t hurt him. Nothing can hurt him anymore.”  

I then fell her into her arms, wishing I had been as so blessed as to be as collected as she was. Still, she had mourned in a very unique way—a way all too common for the close loved ones of those with dementia.  

In fact, many end up grieving the loss of their loved ones with dementia long before their passing. This form of pre-grieving can make the actual death of their loved ones somewhat confusing. Unlike the above speaker’s grandmother who realized why she wasn’t in a state of mourning at her own husband’s passing, many others may need this explained to them to reconcile their feelings.  

If you presently have a loved one with dementia, it's important to understand the stages of dementia as well as the stages of your own grieving to plan for the best care for them and support for yourself. Professionals are standing by to provide support for your family during your unique time of need.  

Hospice & Palliative Care in Tulsa, OK 

If you’re looking for nurturing and professional hospice or palliative care services in Tulsa, Oklahoma, look no further than the friendly services from Cura HPA Hospice & Palliative Care.

Tips for Traveling With Someone With Dementia

Posted on Nov 05, 2020

traveling with dementia

With the approaching holiday season or anytime travel is necessary for a loved one with dementia, preparation is key. For this piece, we’re going to cover how you can prepare them as well as yourself for this undertaking. 

Preparing Your Loved One with Dementia for Travel 

Assemble What They May Need 

While it’s important to never compare traveling with a child to the experience of traveling with an adult with cognitive decline, there are some similarities that may make preparing to travel with them easier for you. For this, you will need to simply sit and imagine all possible scenarios and make a list of items that would make the experience easier for them. This may include a change of clothes in case of any messes, items that will help them feel calm, or favorite snacks. It’s also a good idea to keep a list of their doctors’ phone numbers and their medications handy in case you need them on your journey.  

Assemble Safety Items 

Because dementia patients deal best with the familiar routines of life, new experiences of traveling can be quite difficult for them. In addition to keeping items handy that will calm them down, make sure that they possess some form of wearable identification at all times. Usually, a bracelet with their name, condition, and your phone number is helpful in case you become separated for any reason. This sounds unnecessary as you never plan to be away from them, however, if they become lost in an airport terminal, travel stop, or other place, someone else’s ability to contact you is critical.  

Preparing Yourself for Traveling with a Dementia Patient 

Expect the Best. Plan for the Worst.  

There’s no reason to let a loved one’s condition give you immense anxiety about traveling with them. With this being said, planning for almost any scenario will help you to respond instead of reacting impulsively. Imagine potentially difficult moments and plan how you will respond beforehand. This can help you prepare to act stoically and think rationally when emotions run high. 

Plan For Interactions With Others 

Interacting with new people on your travels can be both a blessing as well as a curse. The blessing may be meeting new people who share their experiences. The curse may be that these people may not understand what your loved one or you are presently experiencing and may not be as sensitive. For this reason, it’s important to plan how you respond to these people if your loved one has any form of an inadvertent incident that draws attention to them or offends others.  

One approach is to simply not care about what others think—your loved one can’t help much of their negative behavior and you will likely never see this stranger ever again. Another approach, especially handy when time is short, is keeping a small stack of cards in your pocket that explains that your loved one has dementia and certainly did not intend to offend them. Whether you choose to inform strangers of the reason for your loved one’s possible outburst or not, it’s important that you remember that their reaction doesn’t matter nearly as much as your own response to the situation. 

Though traveling may be difficult with a loved one suffering from dementia, the greatest gift you can give yourself in these moments is to be fully present with them every step of the way.  

Hospice & Palliative Care in Tulsa, OK 

If you’re looking for nurturing and professional hospice or palliative care services in Tulsa, Oklahoma, look no further than the friendly services from Cura HPA Hospice & Palliative Care.

A Missing Void: Grieving the Loss of a Sibling

Posted on Oct 20, 2020

The death of a sibling can leave one feeling incomplete.

Some have said that when a parent or grandparent dies, it can feel like the death of one’s past and that when a child dies, it can feel like the death of a hopeful future. When one’s sibling dies, however, it can feel like the death of both the past and the future. In this piece, we’ll discuss some common emotions felt by those who have lost a sibling and how to navigate the grieving process to begin healing. 

How Siblings Shape Identity

Though one may say they have their father’s ears or their mother’s nose, siblings shape each other’s personalities in significant ways. When a sibling dies, this can have a profound impact not only on someone’s emotions but also their identity. The death of a sibling can leave someone feeling like they have a hole left in them in the shape of the departed sibling and feel like part of their own identity is gone as well. 

Existential Confusion

Anytime someone of someone else’s similar age passes, this can cause one to take an inquisitive look at their own life. When a sibling dies, in addition to potentially altering someone’s identity, it can lead them into an introspective phase that, when combined with the grieving process, can feel quite confusing.

Feeling Forgotten

The death of a sibling earlier in life also typically means that there are parents who have lost a child as well. In some instances, a sibling can feel like their parents are the primary recipients of pity and support due to their unique grief status. This can cause sibling grievers to feel forgotten or excluded—as though their grief is not significant and, thus, not in need of as much attention. 

The New Identity

Following the death of a sibling and one’s identity feels forever altered, it is important to understand that such a bleak forecast is not necessarily the case. The departed sibling has shaped their brother or sister’s life in ways that will forever remain. This attitude of carefully protecting that aspect of one’s personality can provide relief from both grief and existential angst on particularly rough days, weeks, months, or even years. 

That Part is Still Missing, But Time Reduces Pain

When a sibling passes, many report that there is a brother/sister-shaped void within them that remains unfilled by new experiences or support from that sibling. What is also reported, however, is that the pain of that void grows less and less severe with time. Where it was once filled with their input and support, over the years, it is filled with memories, which with time also become a treasure rather than a source of pain. 

Hospice & Palliative Care in Tulsa, OK

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Grieving the Loss of a Child: Common Emotions & Paths to Healing

Posted on Oct 20, 2020

support group meeting

Though less common, parents who have lost children are never alone. 

The death of a child is among the most severe forms of grief one can experience. While grieving the loss of an adult in one’s life is difficult (a sibling, spouse, parent, grandparent, etc.), the child-to-parent relationship can make such a loss especially devastating. There are many unique emotions and stages to grieving the loss of a child. It can be helpful to understand these emotions so that they can be processed in a healthy way. 

Some Common Emotions

The Feeling of Failure

Despite the cause of death, many parents will feel a tremendous sense of guilt or failure to protect their child from harm. Though accidental deaths are most likely to result in the feeling of failure, even terminal illness can make parents feel like they have failed to do enough to keep their children healthy. These emotions stem from the innate sense of duty that devoted parents feel to safeguard their children from all threats. 

Anger or Injustice

Between instances of grief, anger may trail close behind. Despite a parent’s spiritual outlook or worldview, many can’t help but experience a sense that an injustice has occurred—that their child has not only died but has been taken from them, a fate that this child did nothing to deserve. This anger may be projected towards a societal structure, a divine being, or even themselves. Though this emotion can overtake a person, it can potentially be helpfully redirected towards growth—perhaps towards a good cause or communal initiative. 

Anxiety About the Future

Some people who have never experienced anxiety before—a dread of the future—will suddenly develop such sensations following the death of a child, especially if such a passing occurred suddenly. This anxiety may be in regard to how they will feel in the future or how others will treat them. Some parents may grow withdrawn so as not to have to face either the pity or the judgment of other people. 

Helpful Grief & Recovery Methods

Gracious Reflection

A form of emotional salve for many grieving parents is cultivating a sense of gratitude for the time they spent with their children. Reflecting on positive and tender moments instead of the tragedy of their passing can help in transforming their memory into a blessing. Meditating on the positive impact the child had on the parents’ lives can help transform pain into gratitude.

Remembering to Care For One’s Self

Grief can consume one’s focus on their own personal maintenance. Getting back into the swing of taking care of one’s family and one’s self can help provide much-needed momentum in the face of negative emotions. This shouldn’t be thought of so much as a distraction from grief, but rather a means of processing grief through action.

Communicating & Processing Grief With Others

While most will experience the death of a parent, grandparent, or even spouse, not everyone will lose a child. The perceived abnormality of the situation can make someone feel isolated—that no one understands what they’re experiencing or that worse, that others will judge them. Thankfully, most every town or city has a variety of specialized support groups for grieving parents. In these groups, grieving parents can meet and speak with other grieving parents to share their emotions and build a sense of community around shared loss. Many parents who have lost a child report that the decision to join a support group was, in fact, a game-changer on their road to healing. 

Not Feeling the Need to Stick to a Timeline

Though there are average durations for the many stages of grief, none of these are exact or recommended to follow for the proper processing of grief. A grieving parent should not feel anxiety over their own inability to “move on” as quickly as others may have. Everyone is different and some people simply need more time. It is important, however, to believe what many grieving parents have reported—that the pain grows less severe over time and that the blessing of the child’s memory overshadows the tragedy of their passing. 

Hospice & Palliative Care in Tulsa, OK

For the highest quality hospice and palliative care services, Cura HPC Hospice & Palliative Care is proud to serve the families of Tulsa, OK. Learn more about Cura HPC today.