Coping with the Grief, Guilt & Stigma of your Parent’s Dementia Diagnosis

After finding out that your loved one has been diagnosed with dementia, you’re likely experiencing a range of emotions, everything from denial and grief to guilt and fear. You may feel lost and be wondering what the future holds or how this disease will affect and impact you personally as well as the family as a whole. As a primary caregiver it helps to acknowledge your feelings, learn about the disease, know you are not alone and seek support for yourself. 

Coping with the Grief of a Parent’s Dementia Diagnosis 

Dementia is a disease that forces you to grieve for your parent while they are still alive. While, they are still with you physically, as the disease progresses, many of the features that created their identity begin to fade away.

Coping with grief starts by acknowledging your own feelings and seeing how those feelings are impacting your everyday life and your ability to be the primary caregiver for your parent.

Another mechanism used for coping is to get an understanding of dementia and its progression. Learning about the disease, what it does to a person’s physical and cognitive functions, and how it progresses, will help you know what to expect. Knowledge can be emotional power.

One of the most difficult coping mechanisms to accomplish is to identify and consciously separate your emotions as the family member when evaluating and providing the needs, oversight and decision making for your loved one with dementia.  Seeing things as they really are can be extremely difficult when you look at something emotionally.

The most important coping strategy is to not walk the journey alone. Seeking help for yourself along the way is so important for you to be able to stay physically and emotionally healthy while being the primary caregiver and most likely decision maker.

There are many sources of support available such as a minister, dementia based support groups, a close friend or confidant. Whatever your journey brings, feelings need to be acknowledged and coping methods established to ensure your own well-being.

Dealing with the Stigma of a Parent’s Dementia Diagnosis

Like many diseases that alter a persons’ cognitive and social abilities, people living with dementia and those supporting a parent with dementia are often stigmatized. 

Dementia-related stigma is due to fear and lack of awareness and understanding about the disease. Unfortunately, it has also been identified as one of the biggest reasons why people don’t seek help. Stigma may be impacting you this way as well. Is it stopping you from reaching out?  

We live in very critical society, so changing the way people see dementia can seem impossible. However, with the population now quickly aging and the prevalence of dementia increasing, people are beginning to see and hear information regarding dementia more frequently in public forums. 

Knowing and understanding that the diagnosis of dementia comes with a negative social perception can provide you the opportunity to look at the situation more realistically. It can help you truly look into where your mom or dad may be in their disease process as well as help you determine what type of assistance you may need in meeting care and safety needs. But how do you get to the point of feeling comfortable enough to overlook the stigma? Disease knowledge and personal support are the keys necessary to work through the changes you will face.

The word “dementia” as it relates to a parent, can stir feelings of fear. This is generally based on the fear of the unknown. Once you have had the opportunity to process the diagnosis, many questions will start coming to mind.  Learning the answers to those questions will help you both understand the disease and look ahead to the decisions that will need to be made on behalf of your mom or dad to ensure a stable and safe environment for them.

Most family members and loved ones caring for a person diagnosed with dementia have difficulty working through the emotions and decisions. Knowing that you are not alone, there are many other people going through the same thing you are, can be comforting.  Don’t be afraid to reach out despite what society as a whole may think.

Understanding Your Feelings of Guilt

One of the strongest and most difficult emotions personally related caregivers’ struggle with is guilt. As the primary caregiver of someone diagnosed with dementia, you want to do the right thing for your mom or dad, the way you think they would want things to be done, the way you promised them you would a long time ago. 

Unfortunately, as dementia progresses, it brings with it unrealized circumstances and overwhelming difficulties which can make it impossible for you to be the caregiver you want to be, the caregiver you think they would want you to be, the caregiver that you promised to be. 

Primary caregiver guilt is generally a response to having unrealistic expectations of your ability to control your parent’s situation as well as misconceptions about the disease. As the primary caregiver, you are being challenged to make decisions for your parent that include; personal care, safety needs, financial oversight, health needs and even living environment. You want to do the best for your mom or dad but sometimes the reality of the disease can become emotionally and physically overwhelming for you, limiting your ability to care for your mom or dad in the manner you would like. 

It is natural for you to have feelings of guilt. Understanding where the guilt is coming from gives you the chance to remind yourself about the reality of the situation. Sometimes, you need to be the daughter or son and leave the caregiving responsibilities to those who are trained to care for those living with dementia.

Below you will find a few good practices & coping mechanisms for dealing with the guilt of caring for a parent with a dementia diagnosis. 

  • Be honest about your parent’s ability to make decisions. 
  • Acknowledge that feeling guilty is a normal part of the process for caregivers. 
  • Understand that no one person can care for an elderly person 24 hours per day alone.
  • Be kind to yourself and take care of yourself, too. 
  • Start a journal and write down your feelings and thoughts. 
  • Explain your concerns, pain and distress to your family member, parent or spouse. Most family members don’t know what to do to help us, until we express our concerns.
  • Unload the guilt, it’s detrimental to your physical and emotional well-being.
  • Seek professional help if your feelings of guilt or depression continue for more than two weeks. 
  • Forgive yourself and forgive your mom or dad. Neither of you asked for this and you’re both doing the best you can.

Building a Community of Support

All of the tips and coping mechanisms we’ve listed above all pale in comparison to building a great community of support. Whether you’re caring for a parent with dementia in your own home, with or without a home health care provider, or have a parent living in or transitioning to a memory care community, you are going to need an emotional and mental health support system. 

There are so many options available to you. Your local community likely has a support group for people taking care of their aging family members. If you’re having a hard time, find a local group, ask your parent’s doctor for a referral to a group. Most health care providers are a part of several support communities and are more than willing to help you find one that works for you. 

If you don’t know where to look for support, you can start with the Alzheimer’s Association. They are trained professionals and can direct you to area support groups.

Talk with your own primary care physician. Let them know the challenges you’re facing and see if they can give you referrals or references for mental health counseling. It can be tempting to rely on your spouse, family and friends, but they’re not equipped to deal with helping you through your grief, guilt and stigma. Matter of fact, they may be too bogged down in their own grief to be of much service to you. 

Last, but not least, seek out support from your local communities of faith. Whether you’re religious or not, there are many faith-based organizations that are experienced in working with families who are caring for a parent with a dementia diagnosis. Seek out these organizations in your neighborhood and find the services that work for you and your family. 

No matter what you decide, know that you don’t have to do this alone. Whether your parent has recently been diagnosed or has been living with the diagnosis for years, you need to put self-care and your mental health at the top of your priority list. You can not be an effective caregiver if you’re not properly caring for yourself.