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Dementia Grief & Loss: Adjusting After Bereavement (Part 4 of 4)

In this four-part series, we explore the stages of dementia grief and loss for those affected. Understanding the process, accepting your feelings and learning healthy ways to cope with the emotions will help you and your family during these difficult times. Walking this path is never easy, but with compassion, understanding and acceptance, you and your loved ones can have a meaningful, fulfilling and loving journey.

The period between a dementia diagnosis and the eventual death of the person has been labeled “the long goodbye” by experts, and for good reason. When individuals are diagnosed with a terminal disease such as cancer, heart disease or anything else, they are able to retain their “self” until the very end. But for individuals with Alzheimer’s disease or another form of dementia, the disease robs them of their personalities, abilities and self. By the time someone with cognitive impairment passes away, the person they were – the person whom loved ones remember – has been “gone” for some time.

“It seems a little taboo to say, but when a loved one with dementia dies, it can feel like they’ve already passed away years ago,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “The family and friends of someone with dementia become strangers over the course of the disease, and vice versa. This can make the grieving and adjustment period unique once the individual has passed away.”

There’s no right or wrong way to process the feelings that come following a loss, says Andrea, nor is there any one road to follow. “You may find yourself wavering from one extreme to the next. One day, you may feel relieved that the ordeal is over; the next, you may be wracked with grief and remorse. It’s important to remember that all these feelings and stages are normal and are to be expected following a complicated loss that a disease like Alzheimer’s can cause.”

Dealing with Loss and Bereavement

Throughout the dementia journey, those who love the individual experience grief in many ways. This can begin as soon as a diagnosis has been made, throughout the caregiving process and all the way to after the person has died.

Everyone’s relationship with grief and bereavement is personal, and everyone will face it in their own unique way. How you and your family members will feel after your loved one has passed away is affected by many different things, including your relationship, your history, your role during the dementia journey, the grief you’ve already experienced throughout the process and so on.

Sometimes, after an individual with dementia dies, their caregiver may discover that the grieving process doesn’t start fully until days, weeks or even months after their loved one’s passing. This is known as delayed grief. It’s not uncommon for caregivers to feel a sense of emptiness or loss of purpose. It can be hard to adjust to life without your loved one after they’ve been a part of your daily life for such a long time.

To cope with these feelings and the grief you may be feeling, it helps to talk to someone you trust. This can be a close friend, family member, spiritual leader or a professional psychologist. Dementia caregiver support groups can be especially helpful during this time. The most important thing is to recognize your emotions, accept them and work through them in healthy ways.

Tips for During and After Bereavement

  • Try not to make any big, life-changing decisions immediately following the person’s death. While moving to a new place, getting rid of all your loved one’s personal items or getting a new job may seem like a good idea at the time, it’s best to wait and process your feelings so you don’t do anything you might regret later.
  • While it’s important to reflect and grieve in your own way, try not to become isolated from friends and family. Being around others you trust, and love can help you work through your loneliness and sadness and help you build a path to what life will look like now.
  • It’s okay to hold on to mementos of your loved one, such as a piece of jewelry they always wore or a favorite comfort item. Keeping these items can help you feel connected to your loved one and give you an anchor during the grieving process.
  • Take care of yourself physically, mentally and spiritually. If you’re a religious person, consider reconnecting with your spiritual family and practicing your beliefs – this can be helpful and healing following a bereavement. Be sure to stay in touch with your personal physician, too. You are more susceptible to illness following a loss (everything from catching colds and the flu to depression). Get enough sleep, eat a healthy diet and get plenty of exercise.
  • Try to reconnect to people, hobbies and interests that you enjoy. You may pick up an activity that you’ve put aside, or you may want to try something new. This will give you something to look forward to and be interested in and can also give you a social outlet.
  • When you’re ready, talk about your loved one and reminisce over the life you shared. You can commemorate their life by creating a photo album, sharing personal belongings with those they loved, collecting donations for a fund, planting a tree or holding a memorial service.

Know that readjusting to life following bereavement can be a long process, but that there will come a time when you’ll be able to move forward. If you feel like you’re struggling and unable to reach the point of acceptance, please consider finding professional support to help you find what you need.

For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.

Premier Senior Living, Dedicated Care

The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.

Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.

Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.

At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.

For more information or to schedule a personal tour, contact us today.

Dementia Grief & Loss: Supporting the Dementia Caregiver During the Grieving Process (Part 3 of 4)

In this four-part series, we explore the stages of dementia grief and loss for those affected. Understanding the process, accepting your feelings and learning healthy ways to cope with the emotions will help you and your family during these difficult times. Walking this path is never easy, but with compassion, understanding and acceptance, you and your loved ones can have a meaningful, fulfilling and loving journey.

Alzheimer’s disease and related dementias don’t affect just the person who’s been diagnosed. Experts often say that family members are the “invisible second patients” of dementia. This is especially true for family caregivers, many of whom are spouses or adult children of the individual.

“The grief that dementia caregivers experience is very unique,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “For many, they deal with shifting grief every day as they watch the person they love change and lose their abilities. Because many caregivers are caring for their loved one 24/7, they don’t get a chance to separate and find the time to deal with and manage their grief properly. They have to fit it in along with the day-to-day tasks required to keep their loved one safe and well.”

If you know a family member or loved one who has become a dementia caregiver, it’s natural to want to help. However, it’s also natural to not know what to do in the situation – which can lead to people not doing anything because they don’t want to accidentally do something to make the situation worse.

“Friends and family can be a great help when it comes to assisting caregivers during the grieving process and beyond,” says Andrea. “Grief is something we shouldn’t have to deal with on our own and knowing that there are others who care about us and want to help can do wonders for our emotional and mental state. Even though it may seem difficult or awkward at first, it’s important to reach out to dementia caregivers and offer your support in any way you can.”

Dementia Grief and Issues Unique to Caregivers

As we’ve mentioned in the first two parts of this series, the grief that comes with a diagnosis of dementia can be multifaceted and complicated. Caregivers and family members have to deal with grief all throughout the dementia journey, since it’s a progressive disease and loss can be something that happens every day. This causes many complex emotions, even when the person with dementia is still very much present and capable.

Dementia caregivers especially have to face some unique issues. Because of memory loss and the changes that happen in a person with dementia, caregivers may feel like the loved one they’re caring for has already passed away – even though they’re right there. Their loved one is psychologically no longer the same person, which is a loss that can strike caregivers over and over.

According to psychologists, grief is strongest for caregivers right when the individual is diagnosed and as the death of their loved one draws nearer. There are also other points when grief can become significantly higher, such as having to move a loved one into a Memory Care community. Surprisingly, it’s been shown that grief and other damaging feelings (like depression) can actually lessen when a loved one with dementia has transitioned to full-time professional care.

Still, every person processes grief in different ways, and we shouldn’t assume that caregivers are “doing fine” just because it’s been some time since a diagnosis. Even if a caregiver doesn’t necessarily “need” help, it can be very healing to know you’re thinking about them, you care and you’re willing to assist whenever necessary.

How You Can Help Support Dementia Caregivers

Check in regularly.
If you know anyone who’s loved one has passed away, you know that there’s a flood of support and assistance following the death, but that it trickles away after the funeral. A dementia diagnosis can be a similar type of situation. Unfortunately, grief doesn’t work in the same way, and it’s after those “trickle down” times when caregivers may need the emotional and physical support the most.

Checking in regularly with a caregiver can do wonders to boost their mood and let them know you’re thinking about them. Shooting off a quick email or text message throughout the day can make them smile (even if they don’t have time to respond). You can also send a card or call them regularly, just to say hi. Don’t forget about the power of personal touch – schedule a visit, drop by with coffee, or offer to come over and handle some chores. Being in contact with someone who cares will help lift a caregiver’s spirits like nothing else.

Be specific when offering to help.
Acts of service are a very real expression of love and support and are a boon for grieving caregivers. Instead of asking “what can I do to help?”, think of specific offers you can make that a person can say “yes” or “no” to. For example:

  • “I’ve got a couple of hours free tomorrow afternoon. May I sit in for you while you run errands or take time for yourself?”
  • “I’m going to the grocery store. What can I pick up for you?”
  • “Do you need some laundry done? I can pick it up today and bring it back clean tomorrow.”
  • “Do you need someone to do yardwork? I have some time this weekend and would be happy to do it.”
  • “I made a bunch of freezer meals to share with you. There are enough for a few weeks of meals.”

Recognize signs of depression and caregiver stress.
It’s easy for caregivers to have a hard time accepting help, even when it’s detrimental to their own health. If they don’t take the time to care for themselves, this can lead to depression, caregiver stress and ultimately caregiver burnout. This is harmful for both the caregiver and their loved one. If you notice any of these signs, talk to other loved ones and see how you can get the caregiver the assistance he or she needs.

  • Being constantly overwhelmed or worried
  • Being tired all the time
  • Gaining or losing lots of weight
  • Losing interest in activities or hobbies
  • Getting sick often
  • Abusing drugs or alcohol
  • Being irritated or angry, often at minor things
  • Constant feelings of sadness or hopelessness

While a caregiver may not always be open to your help, keep being persistent. Remind the caregiver that they are not alone and that you and others care for them – that can be the biggest comfort of all.

For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.

Premier Senior Living, Dedicated Care

The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.

Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.

Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.

At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.

For more information or to schedule a personal tour, contact us today.

Dementia Grief & Loss: Managing Your Feelings (Part 2 of 4)

In this four-part series, we explore the stages of dementia grief and loss for those affected. Understanding the process, accepting your feelings and learning healthy ways to cope with the emotions will help you and your family during these difficult times. Walking this path is never easy, but with compassion, understanding and acceptance, you and your loved ones can have a meaningful, fulfilling and loving journey.

As a caregiver to a loved one with dementia – or as a person dealing with a diagnosis of dementia – managing your feelings of grief and loss is one of the most challenging, significant issues you will face. Dementia is a progressive and ultimately fatal disease that destroys brain cells, resulting in memory loss, ability loss and ultimately the loss of one’s self. Whether you’re the individual with dementia, you’re caring for a spouse or you’re a loved one watching the disease progress in someone you care about, loss and grief are feelings you will walk hand in hand with throughout all stages of the dementia journey.

“Grief and loss are not feelings we feel and then get over,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “Instead, they are ongoing emotions that will ebb and flow throughout the journey, shifting to focus on different aspects at different times. One day, you may mourn the loss of your plans and dreams for the future. The next, you may grieve the loss of the person you loved – even if he or she is still there. These feelings of grief and loss can make the experience even more difficult as you move through the process of the disease.”

It’s important to remember, says Andrea, that those living with dementia are feeling those emotions of loss and grief as well. “Dementia can be doubly difficult for those living with it because they are mourning the loss of the abilities and future they hoped for as well as the reality of what they’re losing day by day,” she says. “For those of us who are caregiving or love someone with the disease, it’s important to find ways to manage our own grief while also supporting and helping our loved ones through their personal journey of loss and grief, too.”

Ambiguous Grief and the Dementia Journey

As mentioned in the first part of this series, ambiguous grief is a form of grief that differs from the more “traditional” grief that comes from a loss like death. This is because ambiguous grief does not have closure or resolution, because you’re dealing with the loss of someone who is still alive and, often, someone who is still quite present physically and mentally. However, the ambiguity for the future and the feelings it causes can be difficult to cope with. Fortunately, understanding this very unique form of grief can help to forge a path forward.

“Ambiguous grief is what you feel when a loved one is still physically there but is not as present in the same way as they were before,” says Andrea. “This form of grief is complicated because we aren’t taught how to process this form of loss, and friends and family may not know how to provide adequate support.” Ambiguous grief can also confuse existing relationships and prevents the parties from moving on. For example, if you’re married to someone with dementia, you may not feel like you’re still in a romantic partnership because your spouse no longer recognizes you.

These feelings of grief and loss are ongoing and not a one-time trauma that can be worked through and dealt with. Throughout the dementia journey, you and your loved one will experience many losses, and it’s important to acknowledge each of them. It’s surprising, but healing happens when you’re able to allow yourself to feel the loss, grieve through the pain and move past it instead of avoiding it. By recognizing, adapting to and moving from these losses, you and your loved ones can make the positive changes needed to enhance the quality of life for everyone in your circle.

Tips for Managing Your Feelings

Find others who share your experience.
Look for others who are dealing with dementia, whether it’s an in-person support group, online forum or others in your circle who have lived through a similar experience. Finding those who understand where you’re coming from is the best, most healing thing you can do to cope and manage your feelings throughout the dementia journey. Being with people who understand where you’re coming from and who won’t judge you will provide immeasurable support.

Understand that grief is not a linear experience.
Unfortunately, grief is not something you will experience and move past. Loss will come throughout the journey, and each time you will need to accept, absorb and move through it as it comes. Knowing that some days will be easier than others, and that loss can come in waves, will allow you to be gentle with yourself and give yourself permission to grieve as the losses come – while also celebrating and enjoying the moments that are good (of which there can be many). 

Find ways to mourn in your own way.
Each of us walk the grief and loss journey in our own way. There is no one right way to navigate your feelings, so take the time to find ways to grieve and mourn in your own way. This may be by communing with nature, going to church, finding a support group or any other approach that works for you. Don’t get caught up in the “right” way to grieve and instead focus on what works for you. If you need to cry, that’s fine – but if you want to laugh or make jokes, that’s okay, too. Consider speaking to a therapist experienced in dealing with dementia loss to manage your feelings and find creative, productive ways to mourn.

Practice mindfulness and acceptance.
Learning techniques like meditation or mindfulness can be instrumental in managing and accepting your grief during the dementia journey. It may seem strange that your most powerful tool is learning to accept your grief and be present in the moment. However, accepting that dementia and the grief that comes with it is merely a part of your life that you are learning to live with can help refocus and reframe your state of mind.

Cherish the time you have left.
As much as you can, cherish the moments you have with your loved ones for the time you have left. Spend time together, make memories together and create fulfilling moments that will fill you up and nurture you for years to come. Remember that, although we don’t know what the future will hold, we can hold fast to what we have at this moment – and that we can live, love and experience life in those heartbeats and those breaths. Take each moment and each day as it comes and embrace the love and life that can stem from living an existence of love and appreciation.

For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.

Premier Senior Living, Dedicated Care

The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.

Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.

Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.

At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.

For more information or to schedule a personal tour, contact us today.