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.