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Please introduce yourself

Please introduce yourself

Posted by ColleenYoung on Mar 8, 2012 8:09 am

Hi everyone,

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.
Colleen


RE: Please introduce yourself

Posted by girlwiththeblackberet on Mar 12, 2012 9:55 pm

In the spring of 2006 my 62 year old mother, was diagnosed with metastatic breast cancer. I decided to work-part time in order to be one of her main caregivers. Three rounds of chemotherapy and few months later there was nothing more doctors could do for my Mom. In late September, she passed away peacefully at home surrounded by our family.

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.

RE: Please introduce yourself

Posted by on Aug 21, 2012 3:56 pm

Hello fellow caregivers,

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.

Arminnie





RE: Please introduce yourself

Posted by ColleenYoung on Aug 21, 2012 4:25 pm

Hi Pinkers,

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.
Colleen 

RE: Please introduce yourself

Posted by goldenlover on Aug 21, 2012 7:06 pm

Hello fellow caregivers!  My husband most likely has lung cancer (the final diagnosis is still pending after 2 1/2 months of testing, but all indications are that he has it).  I am also the caregiver for his 91 year old parents, and we have complete responsibility for his 65 year old handicapped brother.  Although all of the relatives are in assisted living facilities, all their medical, financial and other needs are managed by my husband and myself, which is  a huge amount of work, stress and responsibility.  Complicating the situation is the fact that my husband is also a Type 1 Diabetic (Juvenile) and he controls his diabetes by using an insulin pump, that most doctors and nurses know NOTHING about.  So, I have to be with him at all times through future chemo/radiation to manage his diabetes if he isn't able.  It is all so overwhelming!  I have solicited support from some extended family to care for the parents and brothers, and they have stepped up when asked, but the parents still call me first, because I am also an RN.  Being a nurse is a blessing and a curse.  I know how to take care of him, but I also have seen the worst of cancer, and have trouble shaking those images when I think about my husband.
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!

RE: Please introduce yourself

Posted by on Aug 22, 2012 11:53 am

Hi Goldenlover,

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!
Arminnie

RE: Please introduce yourself

Posted by goldenlover on Aug 22, 2012 1:37 pm

Hi Pinkers!  Thank you for the support.  As you are also a victim of the "sandwich generation" you are dealing with many of the same challenges and frustrations as I am.  I still have one child at home part time (he is in University about an hour from here, but comes home every weekend).  I cared for my mother for several years before she passed away from a heart attack, so I understand how difficult it is. I will be sending good thoughts and prayers your way.  

RE: Please introduce yourself

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. 

RE: Please introduce yourself

Posted by goldenlover on Aug 25, 2012 3:34 pm

Liane,
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.
Goldenlover

RE: Please introduce yourself

Posted by wendy1481 on Aug 26, 2012 7:53 pm

Hello everyone,

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.

RE: Please introduce yourself

Posted by goldenlover on Aug 26, 2012 9:49 pm

Hello Wendy!  I am so sorry for your mother-in-law and your situation.  As a former case manager for CCAC, please make sure that you contact them (if you already haven't done so) for support.  I don't know where you live, but in most places CCAC still has money and services for the oncology clients.  You are so kind to think of her needs to see her grandkids as much as possible.  I know that while I am dealing with my husband's cancer, just on last Friday I called my son and said that I need a "grandkid fix".  Sometimes the joy and energy of children gives us a little more strength to deal with the next challenge or even next hour.  Take care of yourself too!!!  We all need a break now and then.  I will be thinking about you!
Goldenlover

RE: Please introduce yourself

Posted by ColleenYoung on Aug 29, 2012 1:48 pm

Hi Everyone,
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.

RE: Please introduce yourself

Posted by saracarolyn on Aug 29, 2012 2:14 pm

Hi Colleen - I am sorry to hear about your father-in-law.

RE: Please introduce yourself

Posted by goldenlover on Sep 2, 2012 8:46 am

Thanks Colleen.  We have been through an exhausting, frustrating week!  My saw the surgeon on Tuesday to learn the results of the needle biopsy of the lung, just to find out that it was also  inconclusive!  So, that was 2 biopsies that were inconclusive.  That evening his shoulder pain got so intense that there was no way he could get comfortable or sleep.  We ended up taking him to emerg early Wed. morning, and he was admitted to the hospital and they did a core biopsy on Thursday.  We should have those results within 10 days.  This was our first "in hospital" experience and it made me realize how much I am going to have to be involved in his care, because of his diabetes and insulin pump.  No medical personnel know how to operate a pump, so when he is heavily medicated, I have to do it.  I did manage to teach the nurses how to read his blood glucose on his pump, so I was able to check into a hotel for 2 nights and they had my cell number to call if there were any questions or problems.  OMG, this is going to be a long hard journey!  Homecare pain management team is now onboard, and at least he is comfortable now.  
I hope all you other caregivers out there are holding up ok.

RE: Please introduce yourself

Posted by ColleenYoung on Sep 2, 2012 5:20 pm

Hi Goldenlover,

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.

RE: Please introduce yourself

Posted by hopperman on Sep 22, 2012 6:32 pm

Hello fellow caregivers! my name is Hali, i am 23 years old and my husband; Rudolf is 27 he was diagnosed with Hodgkins Lymphoma in December of 2011. We have been married for almost 3 years (October 10th actually). We have spent most of our time on opposite sides of the world, I am from Winnipeg, manitoba and he is from Durban South africa.We spent about 4 years trying to get him here and 6 months after he landed he was diagnosed.. i guess he was meant to be treated here.. and thank goodness b/c our team of doctors are amazing! We are so blessed. But being a young married couple and not really having the time to get settled once he landed here, we were stranded and had no option but to move back in with my parents. Yes it is so nice to have the help, but also frustrating because we have very limited privacy and very limited time to continue to try and build a relationship during this journey. Any who... the way we get through it and the crazy things i do to keep positive... is laugh ... at lot. and try to find the humor in everything. surround myself with positive people who make me laugh. take long hot baths with candles and jazz... oh yeah and when all else fails.. take a bath with a glass of wine!!!  I would be thrilled the have the opportunity to chat with other caregivers and share experiences and tips and tricks to get through this!
Have a stupendous weekend everyone.. and remember.. smile .. eventaully the world will smile back at us in some way shape or form!

RE: Please introduce yourself

Posted by goldenlover on Sep 23, 2012 9:19 am

Hello Hali!  It sounds as though you have an amazing attitude to help cope with all of this!
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!!

RE: Please introduce yourself

Posted by hopperman on Sep 24, 2012 2:15 pm

Good Luck Goldenlover! Taking one day at a time I find is the best way to go. If we plan too far in advance and dont reach our set goals. it can some times throw us for a loop. my word of advice is to make sure you take care of yourself. I have a first aid background as well and I have always been on top of my husband with it.. it drives him crazy as he is supposed to be the "man" and take care of his wife. Make sure you set aside at least 20 min a day for yourself. Whether it be in the car on the way to work, or in the bathroom, taking an extra 20 min to put on make up and make yourself feel pretty. sending all my luck your way for tomorrow!!! luckily we have a week of. our stem cell transplant plan comes to play on the first of october and chemo round 3 starts on wednesday next week. so we have this week to feel like a normal ish couple! :)

RE: Please introduce yourself

Posted by girlwiththeblackberet on Sep 27, 2012 9:32 pm

Tomorrow, on September 28th it will be six years since cancer took my Mom, Marilyn.  While time has passed, this time of year always makes me sad. I miss her so much!

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.
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Here's a photo of us in happier times.

RE: Please introduce yourself

Posted by ColleenYoung on Sep 27, 2012 10:14 pm

Dear GWTBB,
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.
Colleen

RE: Please introduce yourself

Posted by heather1 on Sep 28, 2012 9:04 am

Hey GWTBB -  Thanks for posting the pic of you and your mom. I know when I think of my mom it really helps to remember and focus on those good times, which far outweighed the bad.

Sending a virtual hug your way, followed by a real one when I see you.

Heather

RE: Please introduce yourself

Posted by Joanne_53 on Sep 28, 2012 11:35 am

Thinking of you today --- it was great "meeting" you the other day .... you are doing great things and your mother would be so proud. 
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.
Joanne

RE: Please introduce yourself

Posted by Tracy_admin on Sep 28, 2012 1:40 pm

Thinking of you today GWTBB. Thank you for being such a strong and supportive member of this community. Take care.

RE: Please introduce yourself

Posted by girlwiththeblackberet on Sep 29, 2012 2:43 pm

Hi Coleen, Heather, Joanne and Tracy,
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.

RE: Please introduce yourself

Posted by ColleenYoung on Sep 30, 2012 4:28 pm

Hi Liane,

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.
Colleen


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