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Life After Loss

Supporting Healthy Grieving in Dementia

*Resident names and any identifying details have been changed for privacy.

July 24, 2020


I think by now we're all familiar with the example of reorienting a person with dementia to the death of a loved one.


Although the death may be well in the past, each reminder renders it brand new. They relive that heart-ripping moment over and over again.


A kinder alternative, many argue, is to respond to the disoriented person with dementia within their own reality.


By choosing our wording carefully we can spare them so much needless heartache. A simple "I haven't seen your husband today, but I'll let you know if I do," might satisfy their question without breaking their heart.


But what if their loved one has just recently died?

Does how long ago the death occurred make a difference as to whether or not reorientation is appropriate?

What if their spouse is currently in the process of dying?

What if their adult child has passed away suddenly in an accident? Or they have just committed suicide? What if they have been given a terminal diagnosis?

How much detail is appropriate to share with someone with dementia?

How much can we – or should we – protect their feelings? 

What is grief?

Grief is the process by which humans heal from loss. We experience grief when someone we love dies. We also experience grief in many other circumstances in which something important – something life-altering – is lost.

A few examples of loss that don't involve death could include:


- Learning that we have been diagnosed with dementia or other terminal disease
- Losing our independence and the ability to care for ourselves
- Giving up our driver's license
- Having to move out of our home, especially one where we have lived for a long time
- Having to adjust to living separately from our spouse
- Losing our ability to attend church or other activities that are important to our spiritual well-being

Many people with dementia experience a lot of grief. 

Why we grieve

We grieve to figure out how to adapt to a new life - a life without the loss.

We have a lot of energy, a lot of ourselves, invested in what we have lost. As we grieve and heal we can reinvest this energy and grow in new directions. 

When and how we grieve

When and how we grieve is as individual as we are.

There are many distinct types of grief. In some cases, we start grieving before the actual death or loss occurs. This phenomenon is known as anticipatory grief.

The five stages of grief

Many people are familiar with the five stages of grief described by psychiatrist Dr. Elisabeth Kübler-Ross in 1969.

Denial

Difficulty believing the reality of the situation is common.

Our brains help buffer the overwhelming emotion and pain of the situation by numbing us to it, and by overlooking – or altering our understanding of – certain facts and information. 

“Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.”

- Dr. Elisabeth Kübler-Ross

Anger

Anger at God, at doctors, at ourselves, or at anyone or anything we can find to blame is a normal part of the grieving process. 

Bargaining

Bargaining is often accompanied by feelings of guilt and thoughts of "If only I had...". It is a way for our brains to cling to some faint whisper of hope. To desperately seek any path back to pre-loss life. To find some way out of the unbearable pain of this new reality.

It's often seen in the form of bargaining with God, making promises or major changes in order to avoid this unacceptable outcome.  

Depression

We may withdraw from people or activities of interest and may not feel like talking or doing much at all. During stages of depression, we may feel very sad or we may feel very little emotion at all.

By numbing emotion, our brains protect us from feelings that are too intense to handle. Numbing also helps us to start detaching from these feelings - a necessary step in healing from the loss. 

Acceptance

Accepting the loss essentially means that we are finally able to come to terms with it. We realize that, although we still miss what we have lost, we will be okay in this new phase of life.

We may continue to have hard days and occasionally revisit past stages (especially around holidays or other special days) forever. 

While many people experience the five stages of grief, they are rarely experienced one after another in a particular order

Dr. Kübler-Ross herself clarified in 2004 that “[The five stages] were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.”

People will often move back and forth between stages. It's also common for individuals to spend extended periods in certain stages and very little, or no, time in others.  

What happens when we don't grieve?

Grief is an active (although not always conscious) process that will not necessarily happen on its own.

There is no one way to grieve, and there is no set time table as to how quickly it should happen. Grief will look different for each individual and for each loss.

Regardless of how it looks, if the grieving process isn't completed, it can result in unresolved grief or severe depression.

In unresolved grief, we are stuck in one or more stages of the process. We will have great difficulty with day to day activities of life since we can’t free up the energy to move on.

It is recommended to seek professional help to assist with unresolved grief… but that is difficult, if not impossible, for many people with dementia. 

When is grieving complete?

Grieving is complete when the following can be accomplished:

- We’re able to say goodbye
- We're able to experience and express our feelings about the loss
- We’re able to accept that the loss is real, it's permanent and that we will survive without it
- We’re able to adjust to our new, post-loss life

It doesn't mean we forget. 

Helping ourselves grieve

There are a number of good resources available regarding how to help ourselves through the grieving process.

Below is a list of suggestions for helping oneself through grief. While these are all great ideas,
imagine how hard it would be for someone with dementia to do these things for themselves:

- Ask for help and tell people what you need
- Try your best to maintain healthy eating, sleeping and exercise routines
- Balance time spent grieving with time spent in day to day life and activities to the extent you can
- Read and learn about grief
- Keep a journal of your feelings or what you have learned through the grieving process
- Talk regularly about your grief with a trusted friend, spiritual leader or counselor
- Set aside time each day to actively grieve, feel, write or remember
- Be mindful of entertainment choices to avoid triggering intense bursts of emotion
- Join a support group
- Pray
- Join a yoga class
- Spend time in nature
- Help somebody else
- Vent episodes of anger in healthy ways, like taking a brisk walk
- Remember that grieving is an active process that requires a lot of energy. The energy has to come from somewhere. Expect to have less energy than usual throughout the day or for other activities.

Can we help those with dementia with any of these?  

Helping someone with dementia grieve

How we help a person with dementia enact these suggestions will vary with many factors. Alter as appropriate depending on your role, relationship and the circumstances of the situation.

- Be aware that they may have a need to grieve
- Try your best to support their healthy eating, sleeping and exercise routines
- Help them balance time spent grieving with day to day activities to the extent you can
- Talk to them about grief when or if they are receptive
- Talk to them about their feelings or what they have learned throughout their life (either in their current situation or from past difficult situations) about how to grieve/adjust/cope with change
- Listen to them talk about their grief or feelings when they need or want to
- Make a point to support them in this way daily, or as needed
- Be mindful of entertainment choices to avoid triggering intense bursts of emotion
- Help them join / get to a support group, if appropriate
- Pray with them
- Join a yoga class together, or engage in dancing, chair exercises, walks or other physical movement together, or support them to attend as appropriate
- Help figure out ways for them to spend time outdoors, in nature or with houseplants
- Find ways that they can be of service to others. Ask for their advice or help, even with little things for which you may not normally ask for help
- Help them vent episodes of anger in healthy ways, like talking or taking a walk
- Help them remember as appropriate that grieving takes a lot of energy, so they may feel more tired than usual. (Or remember this for them and help them budget that energy accordingly to the extent you can.)

It can be harder to talk about grief and feelings on demand with dementia. Often these are things that must be addressed in the moment that they arise. This is one of the reasons it can be so impractical for them to receive help from a counselor or spiritual leader.

They need the support in the moments they need it. 

Caregivers, family members or others who interact on a daily basis often become the only people in a position to help.

If we're aware of how we can help we can make an enormous difference in their lives.

The basics of helping in this context is simple:

Just Listen


Don’t:
- Tell them what they should or shouldn’t feel, or how you would feel in their situation
- Offer advice unless asked
- Say anything like:
"I know how you feel."
"Time heals all wounds."
"God works in mysterious ways."
"Everything happens for a reason."
"It's okay.'

Do:
- Allow them to appropriately express their uncomfortable feelings
- Help them find the words to describe how they are feeling, only if they are struggling to find them.
- Give them plenty of time to find their words on their own.
- Don’t correct their word choice if they use the wrong words but aren’t bothered by it.
- Help them express angry feelings appropriately. Naming anger and talking about it can be an incredibly powerful approach to expressing it without losing temper.
- Realize that you may feel quite awkward during some of these moments… and that is okay.
- It may help to say something like:
"I'm so sorry this has happened."
"Is there anything you need?"
"Do you want a hug?"
"Do you want to talk about it?"
“I don’t know what to say, but I want you to know that I care.” 

Recognizing symptoms of grief in dementia 


Check out this partial list of common grief symptoms:

Difficulty concentrating
Apathy
Anger
Sleep disturbance
Appetite changes
Withdrawal from others
Irritability
Emotional fluctuations
Loneliness
Sensitivity to noise

Remarkably similar to a list of symptoms (or "behavior disturbances") of dementia, isn’t it?


Grief sometimes manifests as physical symptoms too, such as:
Weakness
Upset stomach
Weight changes
Tightness in throat or chest
Aches and pains
Reduced immune response, may get sick more easily 

So, how can you tell if these symptoms are due to grief or something else?

It’s a good idea to have a doctor rule out underlying medical issues that may be contributing to weight loss or some of the other conditions – especially if they have come up suddenly with no obvious triggers.

The Cornell Scale for Depression in Dementia can be a good tool to provide helpful information to the doctor.

Ultimately, we don't always know the cause of the symptoms without a full evaluation of the situation. Heck, half the time we still don’t know after a full evaluation! We can only try our best to figure it out - and we’re better equipped to figure it out if we’re aware of all the possibilities.

We stay a step ahead by:

- Being aware that grief is a possibility.
- Being mindful of the losses and changes in a person’s life.
- Being aware of how we can help during key moments that might arise.

Staying a step ahead is key to success in dementia care. 

So, what if their loved one has just recently died?

There are no easy one-size-fits-all answers to these kinds of questions, but there are some general guidelines that we can consider as we're weighing factors in a given situation.

Dementia or not, a person has a right to know that their loved one has died. If the death is recent, in most cases the person should be told, and reminded if necessary.

In many cases, reminding them won’t be necessary as memories tied to emotions tend to be stored differently and sometimes retained longer.

A good rule of thumb is that if the death occurred in the past year so, the person should be reminded if needed. However, this can vary quite a bit from case to case.  

Look for factors such as whether or not the person is asking to be reminded.

Are they asking “Did my husband die?” or are they rooted in another reality, saying things like “Where is my husband? I saw him this morning.”

If they are rooted in another reality, it can often be understood as communication that their brain can’t handle the truth right now. It might be a better idea to respond within their current reality, or to engage in related conversation while skirting the question.

- “What was he up to this morning?”
- “I heard he used to like taking the boys out camping. What kind of things did you like to do when he was away?”
- “How did the two of you first meet?”
- “Is this a picture of him? How old was he when this was taken?”

There are cases in which it is more effective and helpful to look in their eyes and gently remind them of the truth. “He had a stroke and passed away. You were there with him, holding his hand when he passed. I’m so sorry.”

Keeping a copy of the obituary can be helpful for some individuals. 

Are they accepting the truth or telling you you're wrong?

If they don't accept it, don't force it, period.

Is their reaction to being reminded hurting their health?

Normal healthy grieving will affect our emotions and physical health. But if they can’t eat or can't stop crying for days every time they are reminded (but they are doing okay once they forget, or are satisfied with believing that the loved one is coming back) this should be weighed heavily in the final decision.

Remember that even without dementia, our brains protect us from feelings beyond what we can handle. In some cases, their forgetting may be a protective mechanism that they need right now.  

What if it really hurts?

What if their spouse or adult child is currently in the process of dying? What if they passed away suddenly in an accident – or they have just committed suicide? What if they have been given a terminal diagnosis?

They absolutely have a right to know

Life is sometimes painful, messy and not what we want it to be.

They have a right to be told, to hurt, to grieve. Whether or not they keep being reminded should they forget is another matter. There are very few cases in which neglecting to tell them at least once would be appropriate.  

The dying person has rights too

One caveat is that the feelings of the dying person also must be considered and honored.

If the person with dementia would end up needing too much from the person who is dying, the care team should carefully weigh how to balance both parties’ needs appropriately. Hopefully the dying person is receiving hospice services. The hospice team is a wonderful resource who can help navigate tricky terrain such as this. 

How much detail should we share?

Although the person may have a right to know that their loved one is dying or has died, it might make sense not to get into too much detail.

Perhaps simply letting them know that their son has died in a car accident would be sufficient, without expanding into how much he may have suffered or how much he may have been at fault. 

Stay in this moment

Helping a person with dementia grieve may not be easy, but it is very important, and it can make a significant impact on their quality of life.

Keep in mind that whatever the person needs in this moment is what they need in this moment – it may be different in the next. Reevaluate the situation often and respond with whatever they need
this time.

"Where's my husband!?" The wild-haired, sharp-tongued woman shrieked as she barrelled down the hall behind her walker.
She always sounded upset even when she wasn't. Her voice had a rather high-pitched, shrill quality and she was quite loud due to her hearing loss. 
With an aching heart, and fair dose of trepidation, the aide gently reminded her that he had recently passed away. 
The staff had put a lot of their hearts into Lana and Bud over the past six months or so when she came to live in memory care after his debilitating stroke. 
Bud had been Lana's sole caregiver for years as her cognition declined. Most of the outside world was unaware of the depth of her impairments. 
The world found out quickly enough when Bud was suddenly hospitalized, unable to move or speak.
She got their attention right away at the hospital when she started whacking him with her purse, chiding him to get up and get moving.
Although she wasn't trying to hurt him, there are strict laws about reporting any instance of hitting or verbally mistreating a "protected" person, which includes elders. Hospital and nursing home staff are legally bound to report every episode.
He moved into a nursing home and she into memory care. Staff in both communities worked really hard to support their mutual wishes to see each other, while trying to prevent any mistreatment - and any more reports.
It was a tough six months as the teams worked together towards this seemingly impossible goal.
Eventually, he had another stroke. She was there with him (yelling at him to get his lazy butt out of bed) when he died.
She remembered his passing for a short while before she started asking to see him again.
"You no good liar!" Lana wailed. "He was just here! Don't you tell me he's dead! He is NOT."
"Lana, I am so sorry, I must be terribly mistaken," the aide answered wisely. "I will go find out what is going on."
As she ducked around the corner to collect herself, Lana continued to scream for her husband.
Another staff member approached.
"Lana, is this the weekend of Bud's fishing trip? Doesn't he often go out fishing with the boys?"
Lana stopped for a moment. The wheels turned around in her mind as she considered the question. It certainly rang familiar…. Suddenly she snapped to a decision.
"Oh, that no good idiot! Always going off fishing when there's work to be done here!"
The aide fought the impulse to defend Bud's honor. Easily one of the devoted husbands ever, it didn't seem fair to let the comment slide. But she knew better.
"Lana, my husband is always off camping and hunting too. Drives me crazy… want to have a cup of tea?"
Over tea and cookies the two bonded, the situation resolved, a little bit of grief work accomplished.
The staff quickly learned that Bud was "out fishing"... Until one day when Lana heard that he was "out fishing" and she started trembling, shaking and crying.
"I know he's not fishing. I know that's a lie," she sobbed.
The aide was mortified, speechless. "Lana, I'm so sorry... Bud passed away. He had a stroke."
Lana looked up to search her eyes, her sobs subsiding a bit. "Is that true? He died?"
The aide nodded. "I'm sorry."
Lana breathed an enormous sigh of relief. "Oh, thank God!" She exclaimed. "I thought he was out with another woman, and that's why he's been gone!"
The aide answered Lana's questions: It was a stroke; she had been with him.
They had tea and cookies together.
From then on, it seemed almost random which answer Lana preferred to hear on any given day – whether Bud was out fishing or waiting for her in Heaven.
It was always really obvious if you chose the wrong answer!
But if you did, you just apologized for the mistake and corrected yourself.
You had tea and cookies and played cards, and in doing so, built new relationships from reclaimed energy together.



What losses do you see in someone you know with dementia? How do you support them to grieve?

Share your story on the ABC Dementia Facebook Page.


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