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I'm a caregiver....

Re: I'm a caregiver....

Posted by jorola on Sep 29, 2019 4:59 pm

Wow, timing or what?
I have been a caregiver almost consistently since I was 12 years old and I am now 45. I am currently feeling more content and at peace than I have been in a very long time. The most difficult part is ensuring I take time to focus on myself and letting the care giver role go. What helps me cope is telling myself over and over it is ok not to take or feel responsibility for someone else's health anymore.
Live, Laugh, Love

Re: I'm a caregiver....

Posted by LANDSCAPERNF on Dec 4, 2019 10:31 pm

Hello, and my sincere hope for other caregivers.
I am a husband and caregiver to my wife with stage 4 breast cancer.  she has been undergoing treatments for 2 years now and it has been emotionally, spritually, and physically draining.  what i find so difficult in this role is that we were so close thru our marriage, always talked about our feelings, and leaned on each other.  now i feel that i can't be open with her, because she is going thru so much that i don't want to burden her with my fears, worries, stress, and concerns about things.  i feel so lonely and isolated from her more and more.  when i try and say that i feel overwhelmed or am having a hard day at work trying to balance the money, house, her care, the kids, family....she seems to make me feel selfish since she is the cancer patient.  i don't know if anyone can share their experience and if they have any helpful advice.  i want to see her get well and go with her to every appointment and treatment... but i get scared too.

Re: I'm a caregiver....

Posted by Brighty on Dec 4, 2019 10:59 pm

LANDSCAPERNF‍   Hi there.  It's been a long time since we heard from you.    I went through something similar as a caregiver.    My fiancé and I lost that communication we had once he was diagnosed.      Being a caregiver is draining and even more difficult when there is lost communication.    You feel so helpless.     They don't tell you what they want or need and you are at a loss all the time as to what to say or what to do.      Is it you that feels like you would be a burden, or has she said that?     Sometimes even though she is going through a lot, she still may want to hear about the normal mundane things going on life, or work anecdotes.   She may still want to be part of the world by hearing what is going on with you.      Would she agree to go for an afternoon out, maybe lunch or movie, just to get a break from cancer?     How about councelling for the two of you?  A social worker can give tips on how to get that communication you once had back.         If she doesn't feel up to that, I would suggest you going yourself, so you get strategies how to cope as a caregiver who feels isolated.   You are such a great husband to take care of her and be there for everything over the past 2 years.   But have you taken a break ever?   Do you ever take time for yourself, to do the things you like to do?    Do you go out with friends, or are you able to confide in a good friend about your feelings?     Do you have family support or anyone that can look after her while you go out and have a break?        You are important too and need to look after your well being as well.      Do you have a hobby or something you love that you can take the time to do for a bit a day to get a little break?     Do you enjoy exercise?   Exercize can take a lot of the stress off you and get those endorphins going.  It does wonders for the mood.      I hope you are getting adequate sleep, eating properly and looking after yourself as well.     Caregiving can be exhausting and you need all your energy.......you need to feel well , to feel like you are also able to look after her needs as well.     I'm sure other caregivers will chime in with their thoughts.   You are doing  a great job.   You are just feeling overwhelmed and may need a bit of a break.  I hope you are able to obtain strategies from a councellor so you can back the communication you once had.      Check with your family doctor for referals...and I would also recommend getting a physical for yourself.   You've been doing this for two years and might have neglected to care for yourself.    .   Also check in with the oncology social worker.....they have great tips and much experience with this topic.       They deal with situations like this on a daily basis.    And most hospitals do have support  groups you can join for people going through what you are going through so you don't feel as alone.   Just ask around at the hospital she is being treated at.    Reach out, and you will be surprised at how much help and information you will receive.   They may even be able to connect you to a home care nurse to come in a few times a week to give you a break.    There are many options out there.   Others may come up with even better suggestions, so I'm glad you reached out and got the ball rolling on this one.      You are no longer alone, and we will take care of you here.      
Help is out there. All you have to do is reach out.

Re: I'm a caregiver....

Posted by Essjay on Dec 5, 2019 7:35 am

LANDSCAPERNF‍ so glad you reached out, and I'm sorry you are in this situation.

Brighty‍ has some great advice...and I totally agree that open communication is essential.

I would encourage you to have a conversation with your wife. She has likely noticed you don't talk about stuff any more, and she will have her own thoughts on why you don't, likely different to yours. Be open with her - you don't want to burden her, but you have stuff you are worrying about. She may encourage you to talk about it, she may tell you she can't handle it, but give her a chance to participate. There's a good chance she's worrying about some of the same things, and doesn't want to burden you either.

I give this advice but I know I'm crap at it myself, but in my experience the times me or my husband opened up about our feelings during my cancer journey we're the most tender and loving, and even if we couldn't solve the problems finding we shared feelings was comforting.

I wish you well, and if we can help further, we are listening. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: I'm a caregiver....

Posted by Cynthia Mac on Dec 5, 2019 8:06 am

LANDSCAPERNF‍ , I’m glad you’ve written in. It wasn’t even 12 hours ago that I wrote in another thread, “communication is so important.” I know, though, that it isn’t always easy.

There are some things that we, as caregivers, don’t want to share with our “patients” because we don’t bring them down or add to their already heavy load. I’m finding my “patient” (Dad) is doing that with me once in a while, but with him, I can write that down to a parenting habit. Or, I could be the strategy of an older person who fears that if they give full disclosure, they’ll be forced to change their living situation. Either way, it’s worrisome for me. My Dad has been in depression for a few months now, and from what you’ve written about your wife, and the changes you’ve seen, your wife might be, too.

There is a discussion going about anti-depressants here on the site. I’m suggesting it not because I think you or she needs such a thing, but to help you know that depression is a common experience for people undergoing treatment.

You note clearly that your isolation not just a feeling of general isolation, but isolation “from her.” From that comment, it says to me that she is turning away from you. She is probably turning inward, but she is still turning away from you. I believe that in any relationship, when one or both of the parties turn away from a situation or each other, it makes it exponentially harder to resolve matters - it doesn’t matter if it’s a parent and a rebellious teen, a situation such as yours, or a woman living with an active alcoholic, when one or both parties turn away, rather than toward each other and the situation, the challenge ramps up steeply.

You are doing everything you humanly can for your wife, and I encourage you to keep “turning toward.” Brighty‍ Provided some excellent suggestions for getting help for the feelings you’re having that you don’t want to add to your wife’s load - in that case, you’re not “turning away” but you’re making one more opportunity for her to “turn toward.”

As an active participant in your wife’s treatment, you would not be out of line to speak candidly with her doctors about her symptoms and the effect they are having on you, ideally with your wife, but, if you are concerned about her falling out with you over it, you can tell them about it privately. Again, communication is important. If the medical team does not know all of her symptoms, they cannot treat all of her. If they know what you are experiencing, they can set you up with a social worker to speak to.

Again, I’m glad you wrote in.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: I'm a caregiver....

Posted by Ten77 on Dec 5, 2019 9:22 am

. I have been a caregiver for 3 months and I am currently feeling hopeful and a bit terrified _. The most difficult part is not having control  and filling out countless insurance and government forms what helps me cope is copious amounts of lists and an inappropriate sense of humour.  The  unexpected best thing in this has been how much closer my husband and I have become and how ( at least for now) our communication has improved.  

reading the stories above leaves me with no words .  You all are not alone.  

Re: I'm a caregiver....

Posted by LANDSCAPERNF on Dec 5, 2019 8:49 pm

thank you to all of you that responded, and for your thoughts.... it is great that you have the time and concern to reach out and help on this site.  Is there an actual caregiver support group chat room, or moderated chat online program ?? i would like to hear from others and discuss our shared issues and struggles

Re: I'm a caregiver....

Posted by Brighty on Dec 5, 2019 9:00 pm

LANDSCAPERNF‍  on this forum, click on "forums" and "caring for someone with cancer".   There are some posts and discussions you can join.      I think Wellspring has a support group for caregivers.    In Toronto it's 416-480-4440.   What city are you in?    
Help is out there. All you have to do is reach out.