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Caregiver check in

Re: Caregiver check in

Posted by Cynthia Mac on Feb 4, 2020 8:48 am

LANDSCAPERNF‍ , You’re doing the right thing - looking everyday for some light in the dark. I have learned that no matter how dark our days get, there is, almost every single time, some light in it. Some days it is easy to find, and other days we really have to search to find it, as you’re discovering. As WestCoastSailor‍ Said, there’s something toxic in trying to maintain that “strong silent type” image, and while it might feel odd to emote our feelings, I’ve learned you do get the hang of it.

Vox‍ , your post got me thinking about “life after caregiving.” I think that it will be much like losing a job, or retiring from a career, only with a whole lot of other emotion attached to it. For some people, it could be like an unexpected layoff - you lose the job and you have to grieve for the lost acquaintances, and the parts of the job you liked, and how to move on with all this time you suddenly have on your hands. I really don’t mean this to sound as “nuts and bolts” as it reads, so I’ll reiterate that there’s a lot of other, closer-than-a-job emotions that will also need to be addressed, but viewing it from that perspective might help you create strategies for the things you can expect. The other thing that is apt to happen for us, is that at the same time we are having “caregiver withdrawal” we are also apt to find ourselves in the role of estate executor, which can add to our plate, too.

When I retired, I took a six month break from any new commitments. I wanted to “feel the grass under my feet” and “get the lay of the land.” I did a bit of travelling, and I learned what a two hour coffee break looked like. To that end, our local hospice makes people “take a break,” too. They will not allow a family member to become a volunteer right after their loved one’s death - they have a “waiting period” of a full year before that person can apply to volunteer. 

Thanks for making me think about this - It will be something I’ll have to address at some point, too, and I’m a bit like my late mom - I like to have a plan in place!

Ohmy‍ , you’re getting close to returning to work! I remember some of your posts from a few months back and can’t help but observe how far you’ve come!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Caregiver check in

Posted by Ohmy on Feb 4, 2020 9:10 am

This site has been nothing but help for me and inspirational. . And yes, I sure have come a long way. I still cry at times and I'm trying to get that under control before going to work. Thanks to everybody who who have offered me the support I needed.

Re: Caregiver check in

Posted by Lacey_adminCCS on Feb 4, 2020 9:23 am

justDwilldo:
Good afternoon!  Thanks for the check in, it's nice to know that there are people out there that care and want to know how you're doing.

Recap
Dad has stage 4 lung cancer with mets in his brain and liver.  Diagnosed in October 2019.  Immediately did radiation to the brain followed by radiation to the lung.  Declined chemo.  Finished radiation on January 2, 2020.

Where are things today
Dad developed pneumonia on January 13 and spent 10 days in the hospital.  During that time he was awake minimally and his mental capacity took a dive.  He has dementia from a previous ailment but typically does really well.  He knows everything from 50 years ago but struggles with what he had for breakfast.  He's always happy and cheerful, often sings and whistles.  Does not feel sick most of the time so remembering he has cancer is a battle and I often have to tell him if we are attending medical appointments and he wants to know what it's for.  That's tough.  However, after being really quite sick for three weeks, he's made a good recovery and we found out today that he will not require oxygen as previously thought.  This was great news for me as he's still smoking and my fear he would blow himself and everyone else in the nursing home to smitherines was weighing on me heavily!  We see his oncology team on February 11 and everyday that he is well, loose term, is a happy day for me.  Normal go to work, go home is so lovely, I appreciate it immensely but it isn't lost on me that there are more hurdles in the distance.

What has been the biggest challenge
Accepting that this is happening and that his life is being measured in months has been extremely difficult.  I've been taking care of him for 15 years.  At 39 years old, I don't know much of adult life without being responsible for him.  It terrifies me to think of him being gone.  I'm scared of what this journey will look like.  I don't want to watch this happen to him.  How will I ever get over the void that will be there.  These are all the things I think about when I'm awake, which is a lot.  I struggle to live in the now and often find myself wishing it was last year, before this started, when things were "normal."  Watching him go from being fairly independent with zero mobility issues to using a walker and needing help doing everything while he was sick in the hospital has been a very harsh reality.  I can wish it was last year, but every day I'm reminded that it isn't.  He sang "You are my Sunshine" to me today in the car on the way to the hospital.  It took everything for me not to burst into tears and beg him not to leave me but instead I just joined in and savored EVERY SINGLE SECOND.  That's all I can do.
 

justDwilldo‍ 

I was just picturing you singing 'You are my sunshine" in the car together. These are the beautiful memories that will bring a smile to your face when he is no longer with you. At first they might bring some tears and that's okay. When my Father passed I wasn't sure how to picture life without him. For me it was knowing how important it was to him that I was okay that got me through my grief and helped me start living again.

Thank you for sharing that beautiful inside look at your relationship with us. Keep singing.

Lacey

Re: Caregiver check in

Posted by Lacey_adminCCS on Feb 4, 2020 9:27 am

Ohmy:
Thanks for starting this post. To recap I have I had stage one. Colon cancer had surgery on September 18th, and I'm still on disability waiting for a work return plan. I'm still feeling emotional at times and tired in the mid-afternoon from fatigue. Hopefully I can get back to work and get a portion of my life back I guess. I'm still on 10mg of Cipralex. For my anxiety and I hope to be back to normal soon. A new normal

Ohmy‍ 

It is great to hear you looking forward to your return to work. You will get your new normal figured out with patience and time.

There is a great resource Cancer and Work: https://www.cancerandwork.ca/. Have a read through and let me know if you find the info helpful!

All the best to you!
Lacey

Re: Caregiver check in

Posted by Murphysmom on Feb 10, 2020 10:05 am

It's been a long time since I wrote on here.  I have been logging on every day though, reading and praying for others.   Well my 88yr old dad was diagnosed with stage 4 Pancreatic cancer, mast to other areas back in March.  He was given about 3 months to live.   He's had no treatment, except for so so many medications.  Whenever something starts to go wrong with his body/health, a new med seems to perk him back up.  He's had many ups and many downs.   It's now February!  He's really not thrilled that his 3 months have past so many times.  He'd just like to go to sleep and not wake up.  He's still at home with my mom, in a house that's very dangerous for the two of them (laundry in basement, ceramic steps to get anywhere), but that's where they want to be, and they're happy.  Dad's health was so good in January that my siblings and I were asking if a CT scan could be arranged to see if he even is as ill as all say.  The doctor said no to this, that the one a year ago was enough.   He seemed so well, that my sister and I booked winter vacations - we both leave next week.    And it seemed that the next day that we were booked and paid for, dad's health has started to decline again.   I've had so many people tell me that we're all in "anticipatory grief" mode.  We have been living on pins and needles for such a long time.   It's so hard to see him suffering.  And our poor mom is just so tired.  Really not sure what to do with this vacation.  Thank goodness for cancellation insurance.  I guess we will just wait and see.      
 

Re: Caregiver check in

Posted by Lacey_adminCCS on Feb 10, 2020 11:43 am

Murphysmom‍ 

I'm glad you decided to post today and get things off your chest. 

The not knowing when is so difficult. I remember that from when my Dad was sick. It can be such a rollercoaster up and down.

Sending strength,

Lacey

Re: Caregiver check in

Posted by Cynthia Mac on Feb 11, 2020 7:14 am

Murphysmom‍ , Dads, eh. They can be real “energizer bunnies”! As a “fellow daughter,” though, I know how hard it is to see them start to fail.

Have you checked the fine print of your insurance? I had an awful time getting insurance that I could cancel because of Dad’s cancer. There was one that I could have got for “any reason” IF I had bought it at the time of booking (before we even knew his cancer would metastasize), but even it wouldn’t cover me for that “preexisting condition.”

I hope you and your sister return well rejuvenated so that you can offer your mom some relief. From what you wrote, she’s feeling the weight of the worrying.

Thanks for “reading in the wings.” Your note is a reminder that lots of people, both patient and caregiver, quietly come here every day without us even knowing it!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Caregiver check in

Posted by Essjay on Feb 11, 2020 7:37 am

Murphysmom‍ it is so hard, putting your life on hold when you have news such as you have. We lost MIL to pancreatic cancer 15 years ago, and it was a traumatic time. 

Regarding the vacation, I would ask yourself if you would be able to relax and switch off while you are away. If that’s not you, then maybe it’s not beneficial to go? Could you take a break closer to home so you can respond to a change in your dad?

You will need that vacation, and you will know when the time is right.

Sending strength. Essjay 
Triple Negative Breast Cancer survivor since July 2018

Re: Caregiver check in

Posted by CentralAB on Feb 11, 2020 11:06 pm

Vox:
Hi..status quo here.

I also wanted to share something...I have bought a bunch of dollar store paints and canvases..and I paint my feeling..because as so many have said.. therapy doesnt always work 
putting paint onto canvas  -and no I'm not an artist - I find therapeutic.. just using different colours to Express to myself how I'm feeling.

my 2 cents worth
vox

 
I hope we will see a picture of your work soon! :)

Re: Caregiver check in

Posted by Cynthia Mac on Feb 12, 2020 7:46 am

CentralAB‍ , Vox‍ Did post one of her paintings... I think if you go back to her post, you’ll see a small indicator of a file attachment at the bottom of it. It was quite amazing, how the “red figure” in the painting appeared to have a fist or cudgel raised against the sky!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Caregiver check in

Posted by CL4ENOO on Feb 13, 2020 5:58 pm

Hello everyone,

Just checking in again after my husband’s chemo round two. I also wanted to say that I am checking in on this site many times a day and reading everyone’s stories and experiences. I don’t often reply as I tend to just write when I need to clarify my own thoughts. But my heart is with all of you, all of us. It’s a real comfort to check in and read everyone’s updates. 

I am coming to dread IV chemo week. Chemo day is every third Friday, and the weekend after has been rough. Rougher with this second round. My husband has been struggling with neuropathy - thankfully it has been getting better eventually over the week. But this time, he couldn’t even start the car. I also had to help him get dressed.  He works with his hands so this has been brutal on him. He’s also been a lot more emotional lately - chemo effects?,  plus having cancer of course. It’s been so hard to see him tearful and expressing hopelessness. He’s also been a real jerk at times too and it’s not always easy not to take it personally. But I know in my heart that that isn’t who he is. I’ve encouraged him to reach out to the counselling offered through the Cancer Agency. I know he doesn’t like “worrying” me, but I want him to talk.

Good news is that we have our MRI re-check booked for March 10th, which takes us to three rounds of chemo. We’ll get to see how much we are kicking this tumour’s a** and hopefully move on to stage 2 of daily chemo/radiation treatment for 6 weeks...and getting us closer to eventual surgery. Fingers crossed. 

Thanks for listening everyone. Much love and strength to all of you. 

 

Re: Caregiver check in

Posted by Dot75 on Feb 14, 2020 9:33 am

Hi all, it’s been a week like no other for us.  My husband is type 2 diabetic. On Monday we went for the fifth chemo before the scan to see if it is shrinking the tumours. He told them how blurry his vision was and he was very week etc. The suggested he see an eye Do tor and decided to not give him the Mvasi. In the meantime he mentioned to me that maybe it’s his sugars being too high. That made sense....when we got home we checked his sugars with our monitor and it would even give a reading other than HI so I took mine to make sure it was working and mine read 5.5. Scary!!  I gave him extra metformin and no sugars from then on.  It started giving me a reading after second day of 33 whoa ....then 27.6 then 23.....I contacted our family Doctor and she has ordered a different medication for him called genomed.  Diahrea came as well maybe from the increased metformin.  Poor guy was having a rough week and so was I.  Our family Doctor is one of the best.  She gave me her private number as well.  She would like to come and visit him as well.  When she found out he had the scan done she was able to pull it up and told us that the chemo is in fact working and it shows that the tumours are starting to shrink.i also found out that he also had a nodule on his adrenal gland and that the lymph nodes are also shrinking as well as the colon tumours and the liver lesions.  There is hope in all of this!!  He just doesn’t know how long he can take the chemo because of how it makes him feel.  We will find out on the 24th.  Happy Valentine’s Day to all of you xo Don’t give up hope. 

Re: Caregiver check in

Posted by Brighty on Feb 14, 2020 9:40 am

 Great update Dot75‍ ! That is good news! Your have  also given
​​​​hope to many others out there too so I thank you for that.     
Help is out there. All you have to do is reach out.

Re: Caregiver check in

Posted by Elsie13 on Feb 14, 2020 6:20 pm

CL4ENOO‍ , I think that having a cancer diagnosis, and going through treatments, can cause a person to sometimes act like a jerk, and you being the closest person, emotionally and physically, you're the one who's going to hear the complaints from him. Seeing a counsellor sounds like a good plan.  How does it work, would they see both of you? 
I do hope you get good news on March 10th and can move to the next phase of treatment. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!