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Let's Discuss...caregiving during COVID-19

Let's Discuss...caregiving during COVID-19

Posted by Lacey_adminCCS on Jul 14, 2020 10:19 am

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The COVID-19 pandemic has brought new challenges to many caregivers,
  • As a caregiver what precautions are you taking to reduce your risk of COVID-19?
  • How has COVID-19 impacted your role as a caregiver?

For people diagnosed with cancer,
  • Have you noticed an increase in the level of stress on your caregivers due to COVID-19?
  • Has it been more difficult to find support with your care?

Watch Webinar: Caregiving for a loved one in the time of COVID-19

Join the discussion below!

Laika57‍, carlmz‍, Bridle313‍, Nt250‍, Charlie1‍, VioletFlower‍, Cynthia Mac‍, jorola‍, Partner‍, Nishi‍, KMitts‍, vic777‍ - can you start us off?

Re: Let's Discuss...caregiving during COVID-19

Posted by Laika57 on Jul 14, 2020 11:46 am

My husband was only diagnosed in December, so I can't really speak to caregiving before the pandemic.
I do believe all the public measures have saved his bacon, so to speak. Because he was not inclined to change any of his habits even during chemo. He still insisted on going to the store every day, not washing his hands etc... 
now he is back in hospital, yet again, and visiting restrictions are making it near impossible to get an update. I have been trying to get ahold of his nurse for 3 days now, left messages with requests she call me with an update. - nothing.
time to call the patient care manager again I suppose.
the lack of communication is exhausting.
on the other hand, I'm not spending a million on hospital parking, nor half the day crying over arguing with my husband about why I'm just visiting and not taking him home with me...
Have you hugged your dog today?

Re: Let's Discuss...caregiving during COVID-19

Posted by vic777 on Jul 14, 2020 1:21 pm

Hi

Oh wow, I can so relate with the lack of clear communication when it comes to communicating with the hospital/cancer wards  However, as you have said, perhaps it is a blessing as you know get some time to yourself and can get a rest before your husband comes back home

Ruth

Re: Let's Discuss...caregiving during COVID-19

Posted by Charlie1 on Jul 14, 2020 1:33 pm

The pandemic has really impacted us in so many ways as so many different places have different rules. One day I am allowed to attend a meeting or treatment the next day I am not and it is at the same hospital. He is afraid to go in by himself so I know if we have to take a trip to the emergency he is not going to want to go cause he will want me by his side. It has caused more unwanted stress and anxiety. I don't want him to hear news alone I need to be there to offer support and because of chemo brain, he forgets important questions. I am afraid of not being by his side when he needs me the most. 

Also, I understand the reasoning but you would think one support person would be allowed especially because they are receiving treatment that we as the caregivers are ultra-careful that they are not exposed to the virus. I know it is to protect everyone but he has terminal cancer and I don't want him to be alone. 

I do all the caregiving because of COVID we do not go anywhere or do anything. I do go out to Zumba on Friday nights when it was outside but even that is over now because they are moving it to inside.  I cannot risk bringing home anything. I go to work when I can and I wear a mask and I am not close to anyone. 

We would have family over but not no more.
 

Re: Let's Discuss...caregiving during COVID-19

Posted by Trillium on Jul 14, 2020 11:40 pm

Laika57‍  I’m so sorry you have no communication from the hospital! That’s just cruel in my opinion.
 
  • As a caregiver what precautions are you taking to reduce your risk of COVID-19?
  • How has COVID-19 impacted your role as a caregiver.

To reduce the risk: I am very lucky to be able to attend with my son who would not be able to cope with all of the medication communication with pharmacy and timing of events while at the cancer clinic. 

I try to look out for others that may need help while I am there. I have gotten water for someone and assist if needed. Pushing someone in a wheelchair outside. Pointing out a very soiled seat or non working tv to clerks. So while I am there I also feel that my covid-19 prevention is important for everyone who attends that clinic. I sit at the furthest distance from everyone. Sanitize my hands often even after washing hands in washroom. Always have the N-95 mask on properly and my son follows all of the precautions as well. 

On the days my son has blood work and dr appt then chemo 3 hrs later - we go the beautiful park at the beach. There are very few people there and we choose a picnic table that is in the shade and very far away from others. I shop only if needed and usually pick up my sons groceries too so he does not have to go in. Only 3 family members visit the house and my son usually stays inside watching tv and we have a good distance from each. We never hug etc but I really miss hugs! I have never visited friends and I miss the social life so bad. When I am out I try and touch things as little as possible, especially at the grocery store.

When my son was in the local hospital for 3 days with neutropenia and infection, they did have a policy to call family once per day to update which made me feel better on many levels. The cancer clinic provides a fever card which is given to emerge with instructions to follow for the staff. It is well known in this hospital as it partners with the cancer clinic. Paper copies of all medication are also provided and these decrease need for communication with me.
 

Re: Let's Discuss...caregiving during COVID-19

Posted by Trillium on Jul 15, 2020 2:51 pm

I forgot to add that I also wear disposable gloves when cleaning my sons apt. I just had the opportunity to watch the webinar above: caregiving during covid-19. Good strategies for self care.

Re: Let's Discuss...caregiving during COVID-19

Posted by jorola on Jul 18, 2020 3:42 pm

Thanks for the tag Lacey_adminCCS‍ 
I was an active caregiver to my husband back in 2014 and 2015 when he was diagnosed with stage 3b lung cancer. Then he was declared NED. I thought those were t end of my caregiver days. He had a small heart attack in October 2019 but only very minor damage to the heart but needed to stents in the "widow maker" spot of the heart. He bounced right back from that too.
Then came COVID-19. This has turned my world upside down. Due to having 3 strikes against him - severe peripheral vascular disease, previous lung cancer and now the heart attack, his doctors have told him if he gets this virus that it is an 80% chance it will kill him. Man, I hate statics. I mean he beat them before with the lung cancer as they told him he was not going to live 8 months but with this, it is something you can avoid so why risk it right?
So this means I am back to doing all the grocery shopping, errands etc although I have cut this down to only thing that are absolutely necessary. I order as many things as I can (based on availability and price) off of Amazon. People were good about wearing masks and the 3 meters distance in the grocery stores until recently so now I am moving to click and collect. I do get produce from a small local store where people are still good about masks and it is not very busy.I have been working at home since the beginning of March. Because of Mick, my employer is respecting my need to keep my family safe and is not requiring me to return. Our whole office has not returned yet and is not looking at returning until September and then looking at a hybrid approach.
The hardest this for me was Mick's reaction to the virus. Where he took having life threatening cancer in stride and even with humour -- not joking - he seriously did, he reacted to the virus with severe anxiety. This was not my solid as a rock Mick! It threw me for a loop. I had to often talk him down and use science and number to calm him down. He has gotten better but he has his moments.
Like I said I thought my caregiving days were done but seems that I have been pulled out of retirement. Of course I am willing to do anything for my hubby, as he is for me. That's what you do for the person you love, your soulmate.
Live, Laugh, Love

Re: Let's Discuss...caregiving during COVID-19

Posted by Trillium on Jul 18, 2020 4:49 pm

jorola‍ - Wow, how scary this whole covid virus 🦠 is for you and your husband! I hope you both have some fun things to do during this extra isolation layer you have to have. 

Hugs
Judy (previously known as violet flower 🙂)

Re: Let's Discuss...caregiving during COVID-19

Posted by CentralAB on Jul 27, 2020 7:53 pm

I thought I would post this information re covid19 here for everyone who would be interested in detailed research on responses to, covid 19

Covid 19 Resource List from The National Academy of Sciences, based in Washington. You can download pdf books and papers about it. Its free to download as a guest, so ignore the book prices. Just download as a guest anything you are interested in. Its a bit scholarly, so be prepared.
________________ "there is always a little Light"

Re: Let's Discuss...caregiving during COVID-19

Posted by Mallen on Aug 6, 2020 3:38 am

I’m new here but I thought I’d start by reading and joining this discussion- I had a complete meltdown when we went into social isolation back in March, because I couldn’t face the idea of being all alone with my husband, with no supports and no friends and no family. We have had a really really long year after he was diagnosed last June, and the hits kept coming. He’s been severely depressed and non communicative, and I relied on going to my work, getting out of the house each day, sometimes seeing friends for lunch, to just feel sane and have brief moments of lightness in my life. But then adding social isolation to an already incredibly isolating experience was almost too cruel to bear. I lost my time away from the house, my brief treasured moments with my friends, the ability to see my aging mother... Now somehow it’s worse because as people start to be together again and start relaxing, entering stage3, going to dinners, resuming their lives- still I cannot join them. It sounds silly but it hurts watching my friends making social “bubbles” and seeing each other again. we just can’t risk it, so we remain alone.I can’t afford to be reckless, or even relaxed. And because my husband is so detached from me because of his depression, it’s like I’m alone, on top of alone, on top of alone... does any of that make sense?

Re: Let's Discuss...caregiving during COVID-19

Posted by Lianne_adminCCS on Aug 6, 2020 6:47 pm

Mallen

Welcome to the community. I am so happy you found us and took that step to reach out. The cancer experience and caregiving for a cancer patient is challenging at the best of times. To add the risk and isolation of COVID is a whole other level. I will say that you are not alone in your feeling of being alone on top of alone. There are so many here who understand how you are feeling. As difficult as it might have been at the beginning of this time, now seeing how some people are getting back to some sort of normalcy and not being able to do that can feel isolating all over again. For yourself, if is important to be kind to yourself and give yourself some space for self care. Even if that means going for a walk alone or go to a park to read. Is it possible to bring a coffee to a park and meet a friend there at an acceptable distance where you can still be safe but give you that friend interaction that you so miss.
Would your husband be open to speaking to a professional? Most if not all cancer centers have patient ( and family if you are interested ) counseling available for free.

We have a lot of caregivers here that completely understand where you are coming from. I want to introduce you to Emd92‍ whose husband has a similar diagnosis and is close to your age  as well.

We are here to listen and support you as best we can and you can ask questions, rant, whatever you need. Continue to reach out - we are listening

Lianne