I would like to thank everyone for their time and thoughtful responses to the survey. It was incredibly uplifting to read through them. All total, there were about 25 responses. I am going to list the responses…
TOPICS CAREGIVERS WANT TO HEAR ABOUT
Legal and financial how to’s ie: living wills, power of attorneys etc.
Assistance to relieve my fears as a caregiver
Problems with siblings who won’t deal with the illness of our loved one or participate in the sharing the role of caregiver
Critical family and friends who judge the way we are caregiving to our loved ones
Many were coming to accept the idea that you can plan and organize just as you always would but you can not control the fact that everything can go up in smoke just like that, leaving you frustrated and sometimes, even stunned
Many of you responded that you were very tired most of the time…Several indicated that they had difficulty sleeping, because they were afraid something might happen in the middle of the night to a loved one who was living in their home.
Many requested support for their family. Some family members are into denial and don’t want help.
Funeral arrangement information.
Coping with co-workers while caregiving…repetition of updating the current situation of their loved one, taking time off, delegating work and more
Communicating with parents and grandparents about decisions, dealing with realities, choices etc.
Handling our loved one who receives our care and their anger
Suppressing our apathy for our loved ones
Looking at our own issues of mortality and how our lives have been put on hold, or dying in many ways
How to keep our lives functioning and stable
Working with family members who are mean and critical
Keeping our loved one happy and comfortable during the terminal deterioration process right up to their passing
Couples who are disabled and caring for one another needing respite, help cleaning and assistance in the home, shopping, transportation etc.
How to vent with our loved ones, communicate, share, cry, have intimacy and remain loving
DIFFICULTIES EXPERIENCED AS A CAREGIVER
Dealing with family members and relatives who do not approve of or agree with the way you are caregiving and dealing with unrealistic family members
When there isn’t a will how do we distribute their personal effects. The difficulty in communicating with loved ones, especially our parents as to what they would like us to do…Do we donate to charities, have garage sales, who do we give the savings to. Many of the ill are not willing to discuss these issues.
How to stay on top of abuse of the elderly, our loved ones in nursing homes
Lack of sleep
Learning all there is about the illness or disease, new technology and methods that are available, reactions to new experimental medications and possible conflicts with other meds
Letting our loved one remain as independent as they can during the various stages of their disease or illness.
Giving up the need to be absolutely on top of everything. Not being able to control everything, including the pain and suffering our loved one is experiencing
Making and coordinating doctor appointments and treatment schedules and juggling work schedules or personal family life
Learning not to react when our loved one is not in control of their anger.
Learning how to not get angry with all that we do, feeling guilty and as if we aren’t doing enough
Keeping our sanity especially when we ourselves are ill
Keeping my own life active and maintaining an optimistic attitude for myself and my loved one
Keeping love alive
48 hour days that aren’t long enough to do everything
Feeling guilty when your loved one has difficulty in asking for help from yourself as well as other family members, especially children
Feeling guilty about taking time for yourself
Feeling overwhelmed, can’t cry or discuss what you are feeling
DIFFICULTIES OUR LOVED ONE IS EXPERIENCING IN THEIR ILLNESS WHICH AFFECTS US AS THE CAREGIVER
When a parent has never really communicated, dies and we have no idea of illnesses or disease which had a history in the family’s health history, which might be affected ourselves or our children.
When they forget things, misplace them or destroy them
Their anger and violence over their current situation
Their unwillingness to live a quality life out in their final days, to have love in their heart for themselves and others
Their lack of intimacy
Their inability to get information straight
They won’t let us support them in getting back on track and having fullness and the quality of life in their lives because of their current deterioration
Coping with a loved one whose dysfunctions from their upbringing are heightened by their illness, disability or disease. They are not willing to work on the issues at hand, emotionally
MOST RESPONSES WERE IN FAVOR OF:
keeping a journal
writing and processing the journal exercises
spiritual, inspiring stories
many would like weekly topics in the chat room while others felt that even if there was a scheduled topic, many don’t adhere to it.
Almost everyone said they would like to contribute to the newsletter and the site
The Healing Circle
(please submit your loved ones names as well as your own)
were willing to discuss the final stages with their loved one they were caring for, although they didn’t always feel the care receiver was willing to communicate
Most were willing to learn what was necessary to complete business affairs, about funeral arrangements, etc., living wills, etc. when their loved one was terminal. There were also those who were scared to think about it and learn.
MEMBERS COMMENTS WERE:
A few indicated that they were no longer Caregivers but that it was important for them to help others in their time of need through the chats, from their own experiences. It is a healing for them to participate through the lessons they have learned as Caregivers.
Most indicated they loved the humor and the support in the chat. It really pulled them through the weekly challenges of life
Many shared how they were learning things at present that may not be of use in their current situation but they felt that the future would incorporate use of much of the knowledge they were receiving
Several indicated they loved the personal stories, the resources, the essays in the newsletter and most of all the sharing in the chat because they finally realized they were not alone in what they were going through. Others were going through the same trials and tribulations as well as the honor in their role as caregiver to a loved one