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How Are All The Caregivers Doing?

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 10, 2020 12:01 am

Hi, I started a message this morning but somehow it got deleted and I was just too tired to start over LOL

Anyways, today was a big day on the roller coaster.

 he had a big day today. CT scan in the morning and physio to see where he's at with his mobility.
He was so excited that he was able to be in a wheelchair and use his legs to move himself down the hallway. So that was a plus and I think it lifted his spirits.
 
The doctor visited this morning and said that they were trying to get this bone marrow biopsy but it would take another week. I don't think he has that kind of time to wait, so she said she would advocate for that to happen sooner. She was successful with her advocacy and he had the bone marrow biopsy this afternoon. 🙏
 
Not sure what happened but this evening he started having high temperature and sweats again. His vitals were a little wonky so they put him on oxygen.
 
I'm sure his body just went through so much today. But he's fighting and wants to continue fighting.
 
The oncologist also paid him a visit and said that "hooray 🥳" they would be offering him chemo on Thursday. He has two choices, one being a milder version I guess to allow him to gain some strength or a stronger version that he said may not end in a good result. So he is going to opt for the milder version and try to gain some strength.

 Of course I am so happy to hear this, as he has continued to get weaker and looks more frail. There's a little worry in my heart that it will knock him down but we must press on. This has been the milestone we have been praying for for weeks.

He can be a bit stubborn at times as he doesn't like to ask for too much help from the nurses. He thinks he's being a bother which drives me crazy because he simply can't do the things on his own that he needs to get done.
 
I had to work through some moments of frustration today because of our communication with technology. He kept losing his Bluetooth earpiece in the bed or on the floor and his phone battery kept dying and it's just so hard to not be able to be there to fix these little problems.
 
But it is what it is and we eventually get it solved 😊

I stopped to get some healing crystals and put them in a little bag and had it delivered - he's not a believer but I'm throwing everything possible at this ❤
 
I started compiling a list of coping tools (quotes and podcasts etc)  to share with others and will add it to another thread.
 I've been making quite a few withdrawals from this supportive site and feel like I should make a few deposits now. 😊

 I read this quote when I feel unsure about life. I heard it first on  a Wayne Dyer CD.

"You need not leave your room
Remain sitting at your table and listen.
You need not even listen, simply wait.
Just learn to become quiet, still and solitary.
The world will freely offer itself to you to be unmasked.
It has no choice, it will roll in ecstacy at your feet."
Franz Kafka

Thanks for checking in. It really does mean so much to me 🙏

🍀


 
 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jun 10, 2020 12:13 am

Clover4‍  sounds like things are moving  along and getting done.     I'm glad  he opted for the lighter version of chemo.    I wish him the best with it and as few side effects as possible.      Healing crystals. . Why not? try anything. .  What does it hurt .      Thank you for sharing  the quote with us.     Are you taking care of yourself?  Sleeping  and eating?  If you are on the east coast it's after midnight  so you aren't sleeping !!! Lol that means neither am I.     Anyway in all seriousness,  keep us posted  on how his chemo is going.     
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 10, 2020 12:24 am

@ashcon ‍ Thanks for following and for your insight.

Yes - I agree that those thoughts are definitely in there somewhere. 
It just took me by surprise as he had been quite stable in his thinking for 6 weeks.

I know now how fragile he might be now - after weeks of feeling so unwell and of course the change in his mobility would 
‍ have been the biggest and scariest part of the decline.
His mind says "get up and walk to the bathroom" but the body is begging for mercy.

I think now is that really sensitive time where he and I need to not sweat the small stuff.

The other night he didn't want to talk about tests, or how much he had eaten or how he was feeling. He just wanted to be on video with me and have me chatter away about silly stuff and lay back and listen.

Bless every single one of the Cancer Patients for their incredible strength at this scary time.

On one of my podcasts the word compassion was defined.

Com - meaning "with"
Pati - to "suffer"

To suffer with

So beautiful.

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Jun 11, 2020 9:35 am

Clover4‍, I can so relate to your situation just now!

My Dad’s in hospital, and I can’t be there, and he, too had a fall the other night when he decided to get up in the middle of the night (The nurses say he’s quick, though - they have to really dash when they hear his bed alarm go off!) That being said, his strength is low, too, and they’re working to get some of that back (he’s got pneumonia on top of the rest of it.) His geriatrician has said he doesn’t want him to have chemo again until his strength is back up, and at that point, they want him to be in hospital for a few more days so they can study the effects. I’m very fine with that, despite knowing it will delay me being able to see him. 

It’s great that you took some time and had a conversation about “just things” with him. 

And I love what you said in this, but believe me, no one on this site is reconciling statements.

 I've been making quite a few withdrawals from this supportive site and feel like I should make a few deposits now

For one thing, as you well know, none of us has the time! But, honestly, thanks for thinking of us!

I did start a list of meditation/ mindfulness resources a few days ago... I found it - it’s in this discussion - feel free to chime in there!
 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jun 11, 2020 11:11 pm

Cynthia Mac‍ 

Oh dear. So distressing to hear that about your Father.
Our hands are tied 😔

I do hope he was hurt too much with that fall. He doesn't need any more stress to his system!

I tried to click that link but I don't think it took me to the discussion you put it in (unless I am mistaken)

Also, I tried to upload a photo today and had no success - by either using the attachment icon or the photo icon?


Any thoughts?

Re: How Are All The Caregivers Doing?

Posted by Cynthia Mac on Jun 12, 2020 8:51 am

Oh, Clover4‍ , that’s too funny! I did all the right things, when I went looking for that discussion, and it is the right link... thing is, that post is in THIS discussion! Clearly, I’ve been under a little stress lately! So, if you go to the bottom of this screen, I think my post is somewhere near the bottom of page 5 of this discussion. Sorry about that!

Regarding photos, depending on the device you’re using to upload them, there’s a step in the process that drops out of sight on your screen.I think it’s when the blue and white bar is doing the uploading. You have to scroll down to be able to see the “update” and “cancel” buttons. Hope this helps.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How Are All The Caregivers Doing?

Posted by Charlie1 on Jun 23, 2020 10:17 am

I am not doing very well I am not sure what to do everything is happening so fast one minute my husband is fine and now he has a year maybe to live if the chemo works. He had stomach cancer and had his stomach removed on Dec. 4 2018 and he was doing well CT scans all clear even the one in late February of this year was clear. Then in May he has cancer in his pancreas his lymph nodes and now possibly bones. He is in a lot of pain especially at night I don't know whether I should be at work at home how to care for him. He is still very much independent but I feel so guilty about going to work. but we have to live. I need to know what to expect I need to know what others have gone through. Am I doing the right thing?

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jun 23, 2020 10:43 am

Charlie1‍ I also went to work while I was caring for my fiance  with stage 4 cancer.    I was off for summer to care for him, but when September came,   I needed to live too.     Bills had to be paid.    Part of being a caregiver  is to also care for yourself.    I used to think thst was selfish  but my therapist  assured me it wasn't.     I didn't even know there was such a thing as self care until I sought therapy.  I wasn't coping well either.      Besides needing to live, work gave me a sense of normalcy.   Do you have anyone who can check in your husband  during the day?  Or someone to help you out with basic needs like delivering meals, grocery shopping , cleaning.  Etc?  Get all the help you can,   don't be shy to lean on others for help and support.     I was too shy to ask for help at first....and all it did was get me into a deep hole of depression.      Once his family got involved   to help , a great deal of stress  was lifted off my shoulders.     I also went for intensive therapy.       I saw a social worker daily for a while.    Oncology will have social workers available for  you to talk to.   They also can point you in the direction of any resources  you might need to help you to care for your husband.      Help is available.       You did the right thing by posting and reaching out.   It takes gutts to do that.       I'm sure others caregivers  will post about how they coped  too.   Let us know how you are managing.     
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jul 9, 2020 11:27 pm

Clover4‍   How are things going with your husband? 
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jul 10, 2020 12:25 am

Hi Brighty‍ ,

Thanks for reaching out.

Unfortunately he is now in hospice receiving end of life care :)

He was told he just wasn't well enough to continue treatment on Tuesday.
He moved to hospice today.

It is surreal. I am overwhelmed by everything and trying to stay "in the now".

He didn't share his sickness with anyone for two months and we just started letting people know now. He was flooded with wonderful messages for the last 2 days and I saw him realize how special he was to people.

The world is very uncertain for me right now but I will shelve those fears until he leaves this world.

I am quite exhausted as it has been such a Tsunami for 2 months.

I hope to make the most of the time we have left together by his bedside.

Even though I have lost four close family members previously, it still will never be easy 😪

I know it will hit me hard, so I am preparing as best I can emotionally.

I appreciate your presence on this site Brighty. You are an angel 😇 
 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jul 10, 2020 12:31 am

Oh Clover4‍  im so heartbroken  for you.   Everything  happened so fast! !!! Lean on your  family  and friends now.   Spend time with him, bring photo albums. .. favourite  songs... books he may like that  you can read to him if he is unable.    Yes, it is best to stay in the now.   He is here now so spend whatever time you have left.     Don't forget  to take care of yourself  too.     I'm so sorry .     Big virtual  hugs to you and stay in contact  with us.    
Help is out there. All you have to do is reach out.

Re: How Are All The Caregivers Doing?

Posted by MCoaster on Jul 10, 2020 1:14 am

Clover4‍ I have just read your post  and would like to join Brighty‍ in saying how very sad I am to hear that your husband is now in hospice.  From the little I have read in your posts about your relationship I know that this time will be filled with great sadness but also much love.

You have had so many losses.  We are here for you.

A big warm hug.

Margaret

ps You are right about Brighty.
 

Re: How Are All The Caregivers Doing?

Posted by Essjay on Jul 11, 2020 8:12 am

Clover4‍ so sorry to hear your news. Sending hugs and best wishes for the time ahead xx
Triple Negative Breast Cancer survivor since July 2018

Re: How Are All The Caregivers Doing?

Posted by CentralAB on Jul 11, 2020 10:14 am

Hello Clover4‍ I have been out of the loop for a short while on a break, just trying to get caught up. Im so sorry to hear this news of your husband being in Hospice. And you are right, this kind of thing never gets easier, no matter how many times we have done it. I hope you and other loved ones are able to say whatever needs to be said to your husband while he can still understand whats being said. I have seen people who didnt do that and then have regrets after the person died. I found that to be important when my spouse was dying from cancer. And I hope you will be able to take time for yourself, just to do whatever it takes to recharge your own batteries. Do something that helps you to be stronger for your husband. Please keep us posted anytime. We are here for you.
________________ "there is always a little Light"

Re: How Are All The Caregivers Doing?

Posted by Clover4 on Jul 12, 2020 1:23 am

Thank you CentralAB‍ 

We are comfy in his room now and he is at peace with what is to come. I am able to spend the night so we are so much more at ease. 

We went from watching news coverage of the effects of Covid to being right in the middle of it.
Thirty eight days apart and on our 4th day back together preparing for his exit.
Life is ironic.
Yesterday was my Sister's birthday and we are in the room next to the one where her spirit left in 2011.
I find this very comforting actually.
He waited to tell everyone he was ill, so he was flooded with wonderful messages for the last two days.
People were able to speak openly and honestly and the sentiments were beautiful.

I actually felt sad for so many of them because they had so little time to prepare. Many were shocked and devastated.
It was his choice though.

I agree - don't wait when your person gets to this stage. Say it all when you can look each other in the eyes. Hold their hands and say whatever it is you need to share.

We've talked about dying and who he will see when he arrives in heaven (his Dad)🤗 and what a great ride we've had these last 21 years.

@CentralAB I've been loving your photos.
I am so envious that you are in the Rockies. I worked in Banff and Jasper 86-90 and have a deep, deep love of those places.
There is magic in those mountains  and I imagine/hope healing has been a little easier when surrounded by that immense beauty.
You are so fortunate :)

Thank you for your thoughts :)



 

Re: How Are All The Caregivers Doing?

Posted by Brighty on Jul 16, 2020 9:51 pm

Clover4‍  I just wanted to check in and see how you are coping.     Hope to talk soon. 
Help is out there. All you have to do is reach out.