Loss is hard for all of us, whether it be the person facing an Alzheimer’s diagnosis or the caregiver who watches their loved one go through the progressive changes of Alzheimer’s and other dementias. Feelings of grief and loss are very real. These feelings can be especially powerful when mixed with feelings of guilt – after all your loved one is still here, or frustration for the patient who is experiencing a loss of themselves and can do so little to manage or stop the progress of the disease.
The dementia patient, no matter the cause, experiences what has been described as “thousands of little deaths” or losses of many aspects of their personality. As the disease progresses, loss of independence, familiar surroundings, relationships, and awareness compound feelings of stress and anxiety that are part of the condition’s progress.
Ambiguous loss is, simply put, a feeling of loss for something that you can’t quite put your finger on. It’s easy to understand a physical loss, when a relationship is over or a person dies, they’re not physically there anymore. But an ambiguous loss is a loss that is difficult to put into words and understand; the person is there physically but otherwise is a different person.
Caregivers of dementia patients often suffer from feelings of ambiguous loss as they psychologically lose their loved ones. The grieving process is marked by roller coaster feelings of hope and despair as the disease progresses. Each stage requires its own adjustments and acceptance, all of which can be very stressful.
Dementia patients also suffer from feelings of loss and grief as they lose their sense of self. As they go through each stage and repeatedly have to adjust to feelings, thoughts, and physical reactions that are not who they have been, there is that same roller coaster ride of hope and loss.
Managing any grief and loss can be stressful but there are steps that you can take to help with the situation.
First, notice and label what you are going through. Naming what you are feeling is the first step in being able to move forward. Journaling, feelings mapping and support groups can help you identify your feelings that may be hidden under the surface. For the dementia patient, caregivers and loved ones may have to help reflect what is going on for the patient.
Next, try to accept the new reality. Acceptance is not closure, but it can help you and your loved one move forward. The sooner you can find acceptance, the easier it will be to make necessary decisions and find adaptations that will help both you and your loved one.
Look for the good in the situation and maybe even the humor. There’s something to be said for letting go of the things around us. Whether it’s physically cleaning out clutter or psychologically not focusing on the things that have brought stress and anxiety into our lives, there is freedom in letting go. Shining a light on the positive, through laughter and smiles will go a long way.
Find support. It’s easy to feel isolated in these feelings and yet you are not alone. Whether through an organized support group, the support and advice of a trusted friend or professional therapy, there are people to talk with about your grief. You also might want to think about respite care. While we may think that we can “do it all,” respite care can provide necessary breaks.
Read our guide to caring for elderly and aging parents
Get involved. Many people find that the best way to deal with frustration, grief and loss is by “doing something.” Whether it’s an organized Alzheimer’s charitable organization or volunteering at an assisted living facility, sometimes doing for others is the best way to help yourself. Involvement and activity is helpful for the dementia patient as well, include them in as many “daily chores” or other kinds of meaningful activities as possible. Everyone wants to feel valued and activities tailored to their abilities will go a long way toward managing feelings of grief.
Grieving in the final stages of dementia can be especially hard. At this stage, dementia patients may not remember or recognize members of their family. They may lose the ability to communicate and their bodies become a shell of the person they once were. At this point, we know that death is on the horizon and yet our loved one is still here. It is hard to know what to do, and what to feel. Sometimes just sitting with your loved one and holding their hands quietly is enough for both of you. Remember that everything you are feeling is valid and try to use the techniques listed above to help process this last stage.
After the death of a loved one to dementia, it’s not uncommon for grieving family members to feel numb, a void, or even relief that the long arduous process has ended. Remember to be kind to yourself.
Getting support while caregiving for a loved one with dementia or Alzheimer’s is crucial for both your wellbeing and your loved one’s. Respite care is one option, giving the caregiver a short-term break. There are several types of respite care including in-home professional personnel, adult day care, or short-term stays in an assisted living facility. Which one works best for you and your loved one will depend on your individual circumstances? Ask yourself questions about what is needed and prepare for the unexpected. If there is another family emergency, what arrangements are there for care if you cannot be the person giving it? Does your loved one need overnight care or care for a few hours, or just some activities to keep everyone engaged.
Bartram Lakes, our assisted living facility, offers short-term respite care for recovery from a hospital stay, care during a caregiver’s vacation or for a trial run of the assisted living/memory care community. Amenities include private rooms, three meals a day, medication assistance, assistance with daily living activities within a safe and secure facility. If you are a caregiver for a loved one with dementia or Alzheimer’s and are feeling the need for respite care support, talk with one of our staff members at (904) 528 3500 for further information
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