When someone is diagnosed with a degenerative condition, it is very natural to experience feelings of loss, or grief. Additionally, caregivers also have losses to face — both from the declining health in their loved one and also with the eventual death of their loved one.
On March 26, CaregiverTeleconnection hosted “A Presentation on Grief.” The two presenters for this audio conference were Bill Moyer, a grief recovery specialist, and Cynthia Hazel, a counselor. They shared their understanding of grief and offered suggestions to help those who are grieving. In addition, Bill offers advice on things to AVOID saying when someone is grieving such as “I know how you feel.”
There was a short question-and-answer session. We often hear this question in caregiver-only support group meetings:
What about when you are a caregiver of someone with dementia, and they are no longer the person they were?
In this situation you are grieving the loss of the person that they were. Bill considers it somewhere in between anticipatory grief and grieving a real loss. The person that they once were is now gone, they are now a new person, and that changes the way you relate and communicate with them. The basics still apply – finding someone to talk to, trying to come to terms with the new reality. It is complicated. While you are grieving the loss of the person, they are still there with you, in a different way.
An audio recording can be accessed on SoundCloud:
https://soundcloud.com/caregiverteleconnection/a-presentation-on-grief-march-26-2020
Adrian Quintero, with Stanford Parkinson’s Community Outreach, listened to the audio conference and shared his notes. See below.
CaregiverTeleconnection is a series of audio conferences offered by the WellMed Charitable Foundation. You can find information about this service on their website — www.wellmedcharitablefoundation.org/caregiver-support/caregiver-teleconnection/
Robin
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A presentation on grief
March 26, 2020
Audio conference by CaregiverTeleconnection (Wellmed Charitable Foundation)
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach
Cynthia Hazel helps people with personal development, such as reducing stress, loving themselves more, and gaining skills to help round out their personalities.
Bill Moyer has a long background in grief recovery. He used to work in nursing and medical management and now is a certified hypnotherapist. He was his wife’s primary caregiver for the two years she was battling breast cancer. In 2014, he became a certified Grief Recovery Specialist with the Grief Recovery Institute. Currently he works as a hypnotherapist, a Grief Recovery Specialist and life coach. He also volunteers with veterans with PTSD and chronic pain. He wishes to dispel some of the misconceptions surrounding coping with grief.
What is grief?
Grieving is how we deal with loss. In this webinar, the loss will focus primarily on decline in health or eventual death of loved one. There are many other types of losses we experience in life.
If your loved one is diagnosed with a degenerative condition, they will be experiencing their own feelings of loss. This might be a loss of independence, freedom, identity, financial security, among others. They may also have feelings of helplessness, anger, fear, or resentment. Your loved one may not be able to drive, or perform ADLs (activities of daily living) without assistance, or fearful of losing their own home. They might be aware of and concerned about the burden they are placing on loved ones. Likely there is awareness of their own vulnerability, including loss of physical or mental function. They could be showing signs of depression or anxiety. Your loved one could lash out, and unfortunately the easiest target is the caregiver.
The caregiver is also grieving. This may include loss of time, independence, earning potential, or relationship changes in the family.
Cynthia shares her own experience: She is oldest of three children. Her brother was a lifelong smoker since his teenage years. He stopped in his sixties, but had chronic health issues as a result of smoking. He was working as a truck driver and was in a trucking accident while away on the road. He was in an induced coma when she and the family arrived to see him. Cynthia wanted to be able to do something, but she couldn’t and felt helpless. When he came out of the coma the family helped him move to be closer to family. For two or three months everything in her life was slowed down while she helped with his care. Unfortunately, he ended up passing away. Cynthia took on the process of trying to settle her brother’s estate. Her feelings were “all over the place.” Sometimes these feelings were set aside to try to take care of all the estate work. She was left with a lot of grieving. She felt flat and numb a lot of the time. It took her several years to work it out. Cynthia’s mother has some short-term memory issues. It was hard because her mom didn’t always remember that the brother had passed away. Cynthia accepted where she was, what she was going through, didn’t push herself to try to make herself recover on any specific timetable.
Misconceptions about grief
Bill says there are misconceptions surrounding grief, and people may offer unhelpful advice. People may offer such things as:
- “I know how you feel.” This is both not productive and not true. Each relationship is unique. Even if you’ve experienced something similar, it’s not the same.
- “Oh he’s in a better place,” or “at least she isn’t suffering.” These may be true statements, but it doesn’t address the feelings in the moment, and the immediacy of the loss.
- Provide advice about staying busy. It’s simply a distraction, it doesn’t address the grief.
- Time limits on grieving. Also not helpful. As time passes, it doesn’t necessarily mean the grieving passes. The only caveat is, regardless of how long the grieving is going on, if at any time the process causes you to be less able to go through normal routines of taking care of yourself. If these become interrupted, seek out professional help.
- Advice about replacing the loss – “at least you have family/friends, etc.” This ignores that you are coping with immediate loss, and that life has been upended.
- Any other advice on how you should or shouldn’t feel, or should or shouldn’t act. Those are completely unhelpful, and out of place.
What is helpful to say to someone who is grieving?
Dealing with grief takes action. It’s a process. It involves facing the loss, and coming to terms with the current reality. You are now facing a new reality from here forward. There is no correct or incorrect way to grieve. You are going to feel what you feel. The only caveat is if you’re contemplating harming yourself or others, in which case professional help should be sought.
If you want to help someone who is grieving, simply be there. Listen to what the griever has to say. Be a “heart with ears.” As you’re listening, there’s no evaluation, judgment, criticizing or advising.
Offer to help, but only if you are sincere with your offer.
Help where you can (watching kids, pet care, transportation, cooking, be there with going through estate or dealing with a funeral home, etc.) Griever may be reluctant to ask for help, or may not be aware of what need help they need.
Things to remember when dealing with grief
- This is a highly emotional time. It’s good to avoid making any major decisions, especially financial or legal decisions one may regret later.
- Deal with the emotions. There is no wrong way to grieve (as long as no contemplation of harm to self or others)
- Get help, seek out someone you can trust and talk to.
- Allow yourself time- whatever time it takes. Grieve in the way you need to grieve.
- Try to understand most folks around intend to be of help but don’t know how to, as they don’t know what you are going through.
- Work towards coming to terms with your new reality.
It’s extremely rare that relationships are all good or all bad. There are usually ups and downs. It’s important to take a close look at the relationship. Remember the good times and take stock of times that were more difficult. The process includes making apologies when appropriate, offering forgiveness. (for anything perceived to contribute to the difficulties). Come to terms with any other difficult emotional components (maybe the person had a difficult childhood, etc.) This helps to release some of the inner emotions, including maybe some of the wishes of things we wish we hadn’t said or done.
Where Bill works, they don’t use the word “closure” with their grieving clients. Losses are life-changing events, and for that there is no closure. They prefer the term “completion.” Complete the relationship as it was, and come to terms with the new reality. The physical relationship has reached its completion, but the emotional and spiritual relationship continues on.
Writing a letter
The Grief Recovery Institute developed the Grief Recovery process. This includes expressing forgiveness, apologies, emotional understanding, and saying goodbye. This can be used for any relationship, including a living person not in our lives anymore.
This process is for the griever, not for the person lost. It is for you to come to terms with the change in reality, and to be able to move forward in a new way.
After writing the letter, they suggest finding someone who can listen to you (a “heart with ears”) read the letter out loud. This can help add to the completion concept. Any symbolic measure that helps you feel like you’re letting it go- could be burning the letter, crumpling it up, burying it, etc. Whatever helps you release and be ready to put energies into what’s to come.
Anticipatory grief (or pre-grieving)
Is grieving now over a potential or suspected loss in the future. It may be an ill family member with a terminal illness. It can also be the result of dwelling on an event that is imagined- one that may occur in the distant future, or may never occur at all.
It is experiencing similar feelings as in grieving process; emotions and behaviors as if the event has occurred, such as sadness, anxiety, fear, sleep disruption, changes in appetite, short temper, inability to focus, etc.
Grieving now over what’s not happened yet robs you the opportunity to enjoy the here and now, the current relationship as it is, or to potentially repair a damaged relationship. Anticipatory grief could interfere with being able to provide adequate care to a loved one. Try to find someone to talk to to help with this. Be kind to yourself, and those you care for. Take breaks, get help. Take time to breathe. Life is complicated, beautiful, rewarding and tragic – often all at the same time.
Questions & Answers
What about when you are a caregiver of someone with dementia, and they are no longer the person they were?
In this situation you are grieving the loss of the person that they were. Bill considers it somewhere in between anticipatory grief and grieving a real loss. The person that they once were is now gone, they are now a new person, and that changes the way you relate and communicate with them. The basics still apply – finding someone to talk to, trying to come to terms with the new reality. It is complicated. While you are grieving the loss of the person, they are still there with you, in a different way.
What about anger when dealing with someone with dementia?
Anger is going to come up, both for the person who is experiencing the changes as well as the caregiver. Again, going back to the basics. Do something to deal with the feelings. It’s perfectly normal to have the feelings, not out of the ordinary by any means.
What about coping with loneliness after a loss?
Try to create some semblance of a normal life. There will be good days and bad days. Even years later it is normal to have days of sadness, missing your loved one. It’s important to find activities you can engage in, and people you can relate to. Find ways you can re-insert yourself into what is now normal life.