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How Are All The Caregivers Doing?

Re: How Are All The Caregivers Doing?

Posted by Lianne_adminCCS on Mar 25, 2020 12:31 pm

Bookie‍ 

Kudos for making your first post. I wanted to direct you to a couple of threads under Forums > Treatments and side effects about chemo that may be helpful to you.

Let's talk chemo - https://cancerconnection.ca/discussions/viewtopic/48/35831

2 chemo videos https://cancerconnection.ca/discussions/viewtopic/48/64870

My chemo days were about 3 hours every 3 weeks. I found it helpful to have a couple of little snacks with me like a protein bar or piece of fruit, some tunes in my ear, a book or crossword - things to pass the time. Often though I just closed my eyes or talked to my mom who took me to appointments, or others getting chemo. However, with things the way they are these days, it is possible he may not be able to have someone with him. 

Generally an anti nausea drug is given before treatment. In my case I took it at home in the morning before I went. I never did throw up but sometimes felt like I could. My hair started to fall out about 2 weeks after my first treatment. My chemo was a breast cancer cocktail so it will be different and there may be variations on how this will happen. Some chemos don't make you lose your hair but I believe his will.
After shaving my head, it was very sensitive I found it helpful to have a soft bamboo like cotton, cap for sleep or a sating pillow case as it felt a little rough on cotton pillow case.

The links I shared have lots of great info in them. On your profile wall I mentioned that there is cancer specific threads as well depending if it is Non Hogkins or Hodgkins - there iare threads for both.

Wishing you both well for the first chemo

Lianne

Re: How Are All The Caregivers Doing?

Posted by Lianne_adminCCS on Mar 25, 2020 12:36 pm

Janesheis‍ 

My heart breaks for you for the position you and your family have found yourself in. Are you able to skype or facetime with him at all? That may ease the distance even a little bit to be able to see each other's face. I know the hospitals near me allow email to the hospital where they are then delivered to each bed/room like mail. We did that for my mom once when she was in hospital during a snow storm

Thinking of you

Lianne

Re: How Are All The Caregivers Doing?

Posted by Janesheis on Mar 25, 2020 1:18 pm

Thanks Lianne, we tried skype a couple times but my dad said it confuses him :(  I just spoke to him just now and we both cried a little when I told him I had to cancel my visit, this really sucks :(

Re: How Are All The Caregivers Doing?

Posted by Janesheis on Mar 25, 2020 1:34 pm

Thank you MCoaster‍ for your kind words.  And the more I read the more I see how many others are in awful situations as well.  Vox‍ that poem hit home, that's how I feel this morning sitting here alone cancelling all our travel plans.  But I do have a healthy husband who is out right now working hard for our community.  He is my rock and I read a whole bunch of you who's spouses aren't doing so well I feel for you.  I am here with you, I am sending you hugs and strength.  We all have to get through this and doing it together is so much better.  Thank you all for giving me this forum to express myself.  It's not like fb...that is so superficial most times.  
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Re: How Are All The Caregivers Doing?

Posted by LMcL on Mar 26, 2020 7:46 am

My husband died on Friday. It’s been very difficult with the isolation of COVID19 to deal with the grief and the practical tasks that must be done to deal with the legal aspects. It’s lonely. My family is helping but it’s so hard,

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Mar 26, 2020 9:11 am

Oh, LMcL‍ , I am so sorry for your loss! And at this moment in time.

When my mom passed away (almost 3 years ago), many people helped with things like survivor benefit applications and whatnot. In my province, funeral homes are designated essential services. Much of anything that needs to be done financially now can be done over the phone, and where signatures are required, by e-mail. If you have a financial advisor you can reach out to, perhaps they can help, too.

Again, I am so sorry that you have to go through this - especially now. We have a discussion for coping with grief, and I see in looking up the link that someone else has recently joined that group. I hope that Cancer Connection can indeed connect you with people who are also going through this so that you will know that you are not alone.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Lainie on Mar 26, 2020 2:10 pm

What I'm struggling with is I want to provide care, but I can't. My ex boyfriend started chemo and radiation this week on Monday, in a different city. I'd wanted to accompany him but I'm not allowed in the hospital. He's staying in a hostel at the hospital until the weekend and he's starting to feel sick from the chemo. I wish I could help him, bring him food, help with laundry, just keep him company...but I feel totally helpless. I can't imagine how alone I'd feel in that situation (although, he seems to be doing really well, has  good attitude and doesn't seem to feel lonely). When he comes home on weekend, not sure I should even see him...scared of him catching anything from me. I feel guilty that I have the luxury of staying safe in my home, working from home. Helpless and guilty, that pretty much sums it up.  Sorry for all you are going through. tough times made even tougher by this virus. 

 

Re: How Are All The Caregivers Doing?

Posted by jorola on Mar 26, 2020 7:19 pm

I am so sorry for your loss LMcL‍  Words on a screen can never convey how truly sorry one is. Please know when a member loses a loved one, their loss is felt deeply by many on here. We stand together, through it all. Hold precious memories of your beloved husband close to your heart and there he shall remain, always.
Peace and comfort to you and your family,
Jodie
Live, Laugh, Love

Re: How Are All The Caregivers Doing?

Posted by WestCoastSailor on Mar 27, 2020 12:08 am

LMcL‍ 

So sorry that you are struggling with legal aspects of a death in this time of isolation. I know a lot of social workers are doing virtual conferences to assist with things. Is this a possibility? There is something about seeing a face and not just a disembodied voice that makes it a little less lonely. I can only imagine how difficult it is to grieve by yourself.

When my wife died about eighteen months ago, one of the things I did was make a little photo album. A lot of our photos were digital so I just went through them, made prints at Costco and put them in a pocket album. When times came that felt especially lonely I just pulled it out and looked through it. It seemed to bring her closer to me. One of my fears in those early days was that memories would fade and that was the last thing I wanted. I tried a bunch of other things too but that was the one that worked best for me.

Thinking of you and hoping the clouds lift. Let us know if there are other things that you are struggling with. ONe of the things we do around here is listen.

Angus
 
My story: http://journey.anguspratt.ca

Re: How Are All The Caregivers Doing?

Posted by Bird on Mar 27, 2020 2:40 am

Can someone help me 
my moms started her radiation and chemo treatments this week 
not only did we find out that we would not be able to accompany her to her visits but now she just told us, my sister and I, that we will be able to see her for the next couple 3-4 mths while she undergoing treatments because she is to vulnerable and at risk sick 
I’ve been crying non stop because at a time on her life that she would of needed us more then ever, we cannot be at her side 

she is at home with my dad and he will be bringing her and helping with Everything.... I’m scared for both of them 

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Mar 27, 2020 8:53 am

Lainie‍, you are right to be concerned about inadvertently carrying infection to your ex-boyfriend. It’s hard, but it’s so necessary now. He, sounds to be in good spirits, and I would encourage you to “lean” on that to a degree. What I mean is that if he is managing this well, you can give yourself permission to release some of your concern. Knowing that he is in a “secured” building, and therefore has an additional layer of protection should be a comfort. 

I’ve read of people getting creative with video calling, standing outside and chatting on the phone within safe viewing distance. Some people are even resorting to good old snail mail to write letters and send cards. 

I understand “the guilts,” too. I’m my dad’s primary caregiver, and I haven’t seen him in over a month, because I went on a trip, and, even though it was booked 15 months ago, I felt bad that I went, and have felt the need to isolate from him on top of that. But, I have had to figure out how to channel that negative guilty energy into doing what I can from a distance.  In the last week, I made a dessert for him and had a relative pick it up and take it to him, and I’ve set up on-line banking so that I can pay his bills and save him going out to the bank. I think it’s important to channel our negative energy into creative, proactive endeavours, especially now! Add to that, that I haven’t seen my BF for over a week - first I had the guilts for seeing him at all after my return home, and now I’m wary because he is still doing his volunteer work and — well, you know — immuno-suppressed dad!

Be kind to yourself, and try to look for creative ways to support your ex-boyfriend. Let us know what you come up with!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Mar 27, 2020 9:00 am

Bird‍ , It’s awful that you can’t be “by your mom’s side” right now, and I suppose some of what I wrote in my post just a few moments ago in this discussion could give you some ideas. 

Some other things you can do to support her would be to provide your Dad with good factual information about protecting themselves, cooking meals, and delivering them (or ordering dinner delivered to their home), having long video chats (or whatever length your mom is up for).

I know these things aren’t the same as being there to “plump up the pillows,” and I hope you can come up with some creative ideas, too.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Bird on Mar 27, 2020 10:16 am

Thank you !
Told my son for Easter we will dress up likes bunnies and go hop around her yard !!
lol

Re: How Are All The Caregivers Doing?

Posted by MCoaster on Mar 27, 2020 12:52 pm

Bird‍   Sorry that your family is facing the stress of your mom being ill.  Your profile photo says it all about how close you are.  Your mom is  very fortunate to have such a caring and supportive family.   Your dad will also be carrying a heavy load and will also appreciate having your and your sister’s support I am sure.  

The idea of The Bunny Caper is beautiful.   Is it going to be videod for later viewing?   Keeping the mind from wandering too deep into the negatives is hard to do and is only really useful if it can be used to move forward to better and more constructive thoughts.   I use mindfulness a lot as do others in this community.  Have you and your family tried it?   Basically it is using concentrating on your breathing to give your mind an opportunity to move on to other thoughts.   Lots of videos on the web about it.   Also I see lots of helpful suggestions from others in this special community who speak from personal experience.

If it is possible I would love to see a bunny photo.

 You are in a worrying and sad place at the moment and please know that we are here for you and your family when you need us.  You will be in my thoughts next week.

Warm hugs.

Margaret
 

Re: How Are All The Caregivers Doing?

Posted by Bird on Mar 27, 2020 1:13 pm

Hi there 
i have not tried mindfulness 
will definitely look it up and try 

I will speak to my mom via FaceTime and we can call each other 
I guess later on as the weeks go by maybe we will be better using email depending if her throat hurts 

I’m hoping the weather will start to be nicer and we can go see her thru her window and maybe talk that way 
she’s about an hour away 

how can I help my dad ?



 

Re: How Are All The Caregivers Doing?

Posted by Lianne_adminCCS on Mar 27, 2020 1:35 pm

Bird‍ 

I can only imagine how difficult this is for all of you right now. My mom is only 10 mins away and is in pretty good health. I did a (long) walk to her place just to say hi from below her balcony. It was nice but also left us both in tears. I hope you get a chance to do something like that down the road. I love the bunny idea!

As to your dad, let him know ( privately ) that he can reach out to you if needs to have a place to share his concerns, questions, vents . Caregiving can be challenging and if he knows he has a soft place to land in you and your sister, that could be very helpful.
Sending good old fashioned snail mail with a nice letter, a drawing from your kids ( not knowing how old they are ). You could arrange a meal prep delivery or similar service - with current drop off protocol. Just some things to brighten their day and make it a little easier where possible.
Under this Forum , there are many other discussions about Caring for someone with Cancer. You may find other ideas that members have shared or you can pose a question there by starting your own topic.

I am glad you reached out.

Thinking of you

Lianne

Re: How Are All The Caregivers Doing?

Posted by WestCoastSailor on Mar 28, 2020 10:41 am

Bird‍ and Lainie‍ 

I started a reply a day ago and then through my tears inadvertently hit the wrong key and lost the whole damm thing. I actually just said "Fuck this." (which as  Lutheran lay minister is pretty strong language) and went for a walk. Still I can speak to this both as a caregiver and a patient. And I want to.

Supporting means different things for different people because we all are different. I have discovered a couple of basic principles. Be creative.  Listen. And something around here we call "holding space." Let me start from the back. One of the things we wrestle with is difficult emotions. Anger, grief, resentment... you get the drift. Sometimes we need to allow ourselves and the patient to experience those emotions. We often don't even have the words for those emotions. Just making the space for those to happen is important. I cried this morning at a post of a NYC  neurosurgeon telling his wife as he left for work that he didn't know if he would be back. He had left letters for her and each their children in a desk in case he didn't.  He had things that he didn't know how to say face to face but he wanted them said. I think that is support. So "hold space" to allow the emotions.

Listening is so important. Just ask the question. "I don't know what to do to support you. Is there anything that I can do?" I have no idea what the answer might be. And the only way to get that answer is to listen. Sure there are things that people have done for me that I didn't even know I needed until they did it and I realized that it was exactly what I needed. An example. About a year ago I started listening to podcasts. I was describing to a friend some of my struggles with spirituality and all the people that wanted to tell "Everything happens for a reason." I knew that it didn't or at least if it did I didn't know what it was. Sshe laughed saying, "you might find Kate C Bowler's podcasts helpful. Called "Everything happens and other myths Christians tell." It was exactly what I needed. She lifted my spirits and let me know I wasn't the only one that struggled with that. But those are the exception to the listen. Often people know exactly what they want. A friend is dying and he wants to put his photos in order. His partner is scanning them and they are adding a narrative to them. Doesn't have to be done in person and will be a tremendous legacy for his children and grandchildren.

Finally "Be creative." This is a new time. We are all doing things we have never done before. Well some of us have and we are helping those who haven't. What I'm struggling to say is we don't have lists of what to do with covid and cancer. It has never happened before. The unprecedented lockdowns, physical distancing, and social isolation  are all new. Online dance parites, virtual coffee breaks, are all new to many people. How can we combine what we know with what needs to be done? Maybe that needs to be a new thread here.

Know that we walk with you in this difficult time. Let us know if you come up with new ideas.

Angus
My story: http://journey.anguspratt.ca

Re: How Are All The Caregivers Doing?

Posted by CentralAB on Mar 31, 2020 7:00 pm

Vox:
Who am I kidding
I sit often and eat meals by myself and think I can do this
  Who am I kidding
I sit and watch tv, or listen to music by myself and think I can do this
  Who am I kidding
Its quiet in my home and I say, I can do this
 Who am I kidding
Another crisis, more medications, I can do this
  Who am I kidding
He says, I’m ready, I can do this
  Who am I kidding.

I have always felt safe in our home, knowing my husband is with me…….. today, I don’t feel so safe…even though he is still here

 

Hello Vox‍ I always appreciate someone who writes poetry, thank you so much for this. Maybe you are just "kidding" yourself that something isn't "normal" just because its hard to do or, I know sometimes, for me; its because I dont always get something done, then I kid myself and think "it must be something about me thats "wrong..."

Caregivers can get quite stressed over such things; but your poem reflects beyond that by acknowledging your perseverance and desire to do the best you know. Your husband is very fortunate to have such a caring wife to help him through this. I hope you are doing well, and finding ways to care for yourself too? I wish I could reply to all thats said in a more timely manner, but I do feel bogged down these days.

Today I saw this female Downy Woodpecker outside my window, and it looks like she was praying for the right "man" to come along and get with the program of starting a family. It reminded me of new life, new things, and possibilities beyond my own scope...as caregivers, we can always find ways to look beyond ourselves, and pull ourselves, or even someone else out of the doldrums...

2e36dc5d685ff02c7c9108b04c4e3f11-huge-do
 

Re: How Are All The Caregivers Doing?

Posted by MCoaster on Mar 31, 2020 9:22 pm

To all caregivers I say:

Thank you for all that you do for your loved ones.   Thank you also for sharing your thoughts and experiences and allowing us accompany you in a small way on your journey.

You are very special!

With love.

Margaret

Re: How Are All The Caregivers Doing?

Posted by CharlotteS on Apr 1, 2020 12:21 pm

My heart goes out to everyone. We are doubly worried now about the lives of our charges and ourselves. I am reminded by the saying "you cant be any good to any one, unless you are good to yourself first."  It is so hard to look afterselves. My husband...bless his heart has dedicated a few short minutes after every meal for us to play one hand of Rummy. We dont keep score but we laugh and tease each other about who is the greastest card player. Little things become charished moments. Stay strong my friends. If we can stand up to the monster named Cancer we sure as h**ll can kick the Covid  down the street.

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Apr 1, 2020 12:36 pm

Oh, my. I took some big steps today! I did a grocery run for my Dad, took them to his place and wiped everything down, picked up his tax paperwork and got him a current bank balance.

Then I came home, wiped down all MY groceries, and Lysol-ed the interior of the car!

Dad’s energy was fairly low, and there’s been a wheeze in his breathing that I noticed the last time I saw him, but I was able to see him, and DO something for him.

Now that I’ve been showered down, I’m enjoying a fabulous lunch of tomato sandwiches - one with sliced turkey and one with cheddar!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying