Posted by ColleenYoung on Mar 8, 2012 8:09 am
Our group is growing. In fact we just got 2 new members this week. I thought it might be nice to start an introductions thread. I'll get the ball rolling.
My name is Colleen and I am the moderator of the community on Virtual Hospice. (Virtual Hospice and CancerConnection.ca work together to support people in both our communities.)
I'm also a caregiver of the sandwich kind - young family and aging parents. My father went through treatment for stage 3b colon cancer 2 years ago. Things are okay now but he bears the burden of long-term side effects from chemo that reduce his quality of life. I know it is only a matter of time before I will be an "active" caregiver again.
I look forward to meeting you.
Posted by girlwiththeblackberet on Mar 12, 2012 9:55 pm
While I was a caregiver, I felt isolated, like my family and I were the only ones going through such a stressful and emotional experience. I wish there was a community like this when I was acting as a caregiver. I wish to share my experiences to support other caregivers so that they know they are not alone.
My name is Arminnie and my mom was diagnosed with metastatic breast cancer in 2010. I am also a caregiver of the sandwich kind - my family ranges from 6 - 22 years and my mom is 61 years old, single and self-employed. My brother works away alot, and my sister is a single, professional so the majority of the care for my mom falls on myself.
Have learned some hard lessons this summer with her chemotherapy treatments about my limitations and seeking alternative supports.
Look forward to meeting you.
Posted by ColleenYoung on Aug 21, 2012 4:25 pm
Welcome to the caregiver group. Sorry to hear about your mom. It is so important to recognize and understand our human limitations as caregivers. Sharing on a forum such as this is a great way to help find alternate supports and even just to know you're not alone, which can be more helpful that one might know. I look forward to sharing with you.
Posted by goldenlover on Aug 21, 2012 7:06 pm
I know this is going to be a long and difficult journey, and I look forward to connecting with other caregivers who understand!
Now, I am going to go hug one of my 3 Golden Retrievers for comfort. Thanks!
I feel so much for your situation. Thank you for sharing as it has helped me realize that although I feel like I'm running out of strength for all the challenges I face, there are others who are so strong and shoulder such big burdens. It inspires me to push on!
I'm glad you have your puppies to love and to love you back. They are so undemanding and live in the moment which is a great example for us in these challenging times :)
My thoughts and prayers are with you!
Posted by goldenlover on Aug 22, 2012 1:37 pm
Posted by Liane on Aug 25, 2012 2:21 pm
My name is Liane, recently lost my 77 year old Mom, very suddenly to liver cancer July 19 2012, she was diagnosed after 5 days in the hospital and passed 5 days later... I spent most of the 10 days at the hospital with her and was with her during her final 12 hours in Hospice., my Mom and i were very close. Just as Mom was admitted to the hopsital my Dad (also 77) told me his prostrate cancer was back, and more agressive. After visits to his doctor i have learned he has stage T4 prostate cancer it has metastisized into his marrow, my Dad has several other health issues and is too frail for chemo, he is currently getting Zalmeta infusions once a month, as well as a couple of other drugs. My brother lives locally and my sister resides in south america, the care for my Dad primarily falls on me, ..... I have recently seen a grief councillor, through my local hospice society, to help deal with all of the emotions I have right now, and allow myself some time to grieve for my Mom, but with the focus now on Dad I feel lost, angry, depressed to name a few... I have a very supportive husband and 2 children of my own and recently feel like I have abandoned them, that is very difficult as well. I have a full time job, and my employer has been extremely supportive... allowing me flexible work schedules and time off when ever needed. Just getting by one day at a time.
Posted by goldenlover on Aug 25, 2012 3:34 pm
I am so sorry for the loss of your mother, and now having to deal with your father's illness as well. You have every right to have all the feelings that you are experiencing. I too am swamped by caregiving, so I understand that some days you simply want to have your life back! My only suggestion is to try to take some time every day, even if it is only 15 minutes, for yourself. Read a book, take a walk, take a hot bath, anything that makes you feel good and like you have some control. You need to take care of yourself too. Let your emotions out as they will eat you up inside if you try to suppress them too long.
I will be thinking about you. Take care.
Posted by wendy1481 on Aug 26, 2012 7:53 pm
My name is Wendy and I'm 34yrs old. I have been married a little over nine years and have 2 young children - my son is 7yrs old and my daughter is 5yrs old. This past February my mother-in-law was diagnosed with stage IV lung cancer which has spread to her brain. Unfortunately, she is one of the rare individuals that has the mestastes cancer spread faster than the primary cancer. She has 6 tumors on her brain in various locations. She had surgery the beginning of March to remove the most troublesome tumor, shortly after she received 2 weeks of whole brain radiation. She lived with us for 4 months before we moved her home with psw's and private nursing ( only so much we wanted our kids to see). I have been her primary caregiver up until recently but she requires more care than I can give now. I have done things for her I never thought I would be capable of doing for anyone besides my own mother - but I'm very glad i did. I'm so glad we had her live with us for 4 months because she got to enjoy her only 2 grandchildren everyday:) She has just passed the 6 month prognosis time we were given by the doctors and living each day one day at a time. It's all you can do.
Posted by goldenlover on Aug 26, 2012 9:49 pm
Posted by ColleenYoung on Aug 29, 2012 1:48 pm
I'm so glad to see people coming to introduce themselves on this thread. When I started it back in March, it stayed empty for some time. Thanks for welcoming everyone Goldenlover. It helps so much to know that a new post doesn't fall in to a vacuum. Great to have your insights as a former CCAC case manager.
Welcome Liane and Wendy. It always feels wierd to say welcome when I wish the circumstances were such that you didn't need to be here. But alas, they are and I'm happy that we have found a place to share.
My caregiver role has shifted from my father to my father-in-law, whose prostate cancer has metastasized to his bones - everywhere. They found it when he broke his back - ouch. He's healing well, got radiation and is back home with hospice care.
As I mentioned in the original post, I am also the moderator of Virtual Hospice and I was wondering if any of you would like to offer some support to a member there about Caregive Exhaustion? The member's situation seems to echo yours a bit Wendy.
Posted by goldenlover on Sep 2, 2012 8:46 am
I hope all you other caregivers out there are holding up ok.
Posted by ColleenYoung on Sep 2, 2012 5:20 pm
So sorry to hear about your frustrating week. Incredible how we patients and caregivers have expertise to offer eh? There's a whole movement underlining how patient and caregivers should be equal partners in their care, part of the healthcare team, etc, etc. I agree with many principles of the "participatory medicine" movement, especially when it concerns shared decision making, but there are times that we just need the medical professionals to "take charge", like with the ongoing diabetes management of your husband. Sounds like you should take steps to make sure you get respite. It's a long road and you need to take of yourself to be able to take of him. Would love to hear any tips or ideas you have about that so that I can share them with my mother-in-law. She's amazing, but I do worry that she takes it all on.
Posted by hopperman on Sep 22, 2012 6:32 pm
Have a stupendous weekend everyone.. and remember.. smile .. eventaully the world will smile back at us in some way shape or form!
Posted by goldenlover on Sep 23, 2012 9:19 am
And, Colleen, thank you for your comments. We finally have a diagnosis. My husband has a form of Non-Hodgkins Lymphoma, MALT variety, stage 4. He is to start chemo on Tuesday, with hopes of a remission and alleviation of his pain, as there is no cure. To say that my world has been turned upside down would be a gross understatement. But, I am coping, taking each day as it comes. Being a nurse, I have already let the homecare team know my limits. I will take care of the diabetes end of things, but they have to do all the regular nursing that they would give to any other patient who didn't have a nurse for a wife.
So, our journey begins on Tuesday. Wish us luck!!
Posted by hopperman on Sep 24, 2012 2:15 pm
Posted by girlwiththeblackberet on Sep 27, 2012 9:32 pm
She was a very caring personal always volunteering her time to help others. By using my experiences as her caregiver to support others in this community who are caring for their loved ones, I feel like I’m carrying on her good works.
Here's a photo of us in happier times.
Posted by ColleenYoung on Sep 27, 2012 10:14 pm
I'll be thinking about you tomorrow. You can treasure that she passed along to you her gift of caring and volunteering time to help others. Thank you for all the support you offer.
Would you call it serendity that at the exact same time that I received the notification of your message being posted, I received a notification of a post from a new member on Virtual Hospice?The message is from a young woman who posted Scared to say goodbye. She is losing her mother. And another member posted a couple of days ago Missing my mom.
I know that your reaching out to these two young woman would mean so much to them. I hope my request is not out of place, especially on this date. But I could not ignore the serendipity of the timing and trust that it is further proof of how much you help people and carry on your mother's legacy of caring kindness.
Posted by heather1 on Sep 28, 2012 9:04 am
Sending a virtual hug your way, followed by a real one when I see you.
Posted by Joanne_53 on Sep 28, 2012 11:35 am
I lost my mom in February 2005 from Acute myeloid leukemia (AML).
Celebrate what you had and all the wonderful memories .... that is what keeps me going. When I was diagnosed with breast cancer in December I felt so lost because I wanted my mom to be there with me. I truly believe now that she was beside me through my journey.
Posted by girlwiththeblackberet on Sep 29, 2012 2:43 pm
Thanks so much for your kind words. Yesterday, I was looking at some more old photos and they brought back many good memories.
Colleen, I will pop over to the VH community and respond to the two community members you mention.
Posted by ColleenYoung on Sep 30, 2012 4:28 pm
You truly have a heavy burden to bear and I'm glad that you have this group to turn to. With all the emotions you are experiencing, I just want to let you know that there are other resources should you need to speak to professionals at any time. Of course, you have a direct connection with your local hospice. I can't say enough good about the services hospices offer for free for family members, for you and if needed perhaps for your children and husband.
Sometimes, however, questions can come up in the middle of the night. In these cases you can turn to the resources on Virtual Hospice. The clinical team has written many great articles including topics like Mindfulness, Depression, Stress & Distress, Talking with Children and Youth and so many more. If you have a more specific question, you can ask our team a question confidentially on Ask a Professional.
My father-in-law also has stage 4 prostae cancer that is riddled throughout his bones. I'm finding the complexities of family dynamics to be a challenge to navigate, especially from afar.
I look forward to hearing from you again.