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

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

Posted by Lacey_Moderator 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.
 
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

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.
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

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 🙂)
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

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_Moderator 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

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

Posted by Cynthia Mac on Aug 9, 2020 9:45 pm

Hi, Mallen‍ , I am sorry to hear that you feel so isolated, but I’m also glad that you reached out here.

Do you have some activities you enjoy doing that you can do while you’re at home? Reading, sewing, even mundane tasks like overboard cleaning can help take your mind off things and can give your a chance to get away from the harsh reality for a while. 

If you like upbeat music, are you able to use that to try and buoy your own mood? Even if you have to use ear buds. And, if none of that works, sometimes, processing through a good old cry can be cathartic, although it’s my least favourite option.

If there’s anything I can do to help you feel better, please reach out.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

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

Posted by Elsie13 on Aug 9, 2020 11:35 pm

Mallen‍  - there's no good time to have cancer, of course, but you and your husband are newly weds and this is the pandemic!  So there's a huge amount of added stress and problems for you guys. Glad you have connected with Cynthia Mac‍ and Lianne_adminCCS‍ .  I hope you can meet Brighty‍ also. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

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

Posted by Brighty on Aug 10, 2020 12:08 am

Mallen‍  you make perfect  sense.    Thsnk you for tagging me Elsie13‍ .   I went through  a lot of the same feelings that you are going through when I took care of my fiance during his cancer.     It makes things a lot more complicated  for you now that covid is in this mix.     My fiance too was very depressed.   He shut down and became  non communicative  with me  .  I tried so hard to get  him to talk to someone  but he refused.    I even snuck a social worker in once but he wouldn't talk to her.   So I had to save my own sanity  by talking  regularly  to a social worker myself.    Would he be willing to talk with someone? If not would you talk to one?   You can start with your family doctor  for a referral,  or the oncology  social  worker.    Most are doing sessions  by phone or by zoom or some other method.  Like you,     I also relied on work and outings every so often to keep the normalcy  in my life.    Again covid can make that more challenging.      Are you still able to work from home?     There might be a few ways you can get out that wouldn't put you at too much risk.     Sometimes  i meet up with friends in our separate cars.  We park far apart, get take out ... and talk through the window.    There are also  walks you can take... 6 feet apart... or sit together  outdoors and put the chairs 6 feet apart......those type of things could be possible and low risk.   There are also the zoom meetings .  You may be able  to schedule  card nights, or some kind of theme night once a week with friends if the outdoor meetings are not possible.      Let your friends know how much this would help you if they set aside time for zoom dates once a week or so.   This would give you something  to look forward to.       I was also wondering if you are getting any help.    Do you have family members  who may be able to grocery  shop,or  drop off ready made meals for you?    That would take a huge load off.     I'm so sorry you are going through this but you do not have to do this alone.  We will be here to listen, give you suggestions, or just cheer you up when you feel lonely.      
Help is out there. All you have to do is reach out.

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

Posted by Charlie1 on Aug 11, 2020 7:07 pm

Hi everyone! Feeling overwhelmed with everything and now that my husband is allergic to the chemo!! I feel like I am sinking! He is supposed to go for chemo tomorrow and we just received a call that his white cell count was to low and he may not be able to receive the treatment. He has to repeat labs tomorrow. It is like every week something else comes up!?! We were at the emergency the other week cause he had a fever of 104 all because of a UTI. What next! I am super depressed one minute and the next feeling like I am super strong and I have got this. Then I have to remember COVID on top of everything. Not being able to have family around really sucks! What is going to happen next? Terminal cancer what does that mean. The doctor had to fill out a form for our insurance and she put terminal patient will not get better will not survive! It was like a shock to my system like I have never felt before. We talked about it and he says he has accepted it but I have not I cannot believe that he will not survive this. He is buying me a new car so I have a 5-year warranty and I do not have to worry when he is gone. I don't want a stupid car! I really cannot believe this!  Sorry for my rant feeling so alone and helpless right now!

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

Posted by Brighty on Aug 11, 2020 7:29 pm

Charlie1‍  hi.  So sorry  for what you are going through.     The wave of emotions.. the ups and downs are so normal.    One minute  you feel like you've got it and you're  strong, and the next minute  you fall apart.  Very typical  as a caregiver because  you want to be strong all the time, but it becomes so overwhelming .     Add covid to the mix..and it becomes  an almost impossible  situation.     I am glad to hear you and your husband are communicating.     One of  best way to get through  is to have open communication with each other  .     Let him know how you are feeling and follow his lead on how he is feeling.    The cancer is affecting  both of you.   When he next sees the oncologist  you may want to inquire about other options  such as a clinical trial.     Even though  covid is in the mix here you are still not alone.    Therapists are doing phone sessions.  You may be able to still have socially distanced visits with family outdoors sitting 6 feet apart.     Things like that..   they may also be able to help you out with very  little contact such as dropping meals off or groceries  at the door.     You may even consider  asking a family member  to send out regular  email updates on his progress so you dont have to keep repeating it to each individual.       Living in the moment  is sometimes  all we can do in this situation.     Spend time with him... make special memories, have long chats,  sit together  and watch tv, look at photo albums.      And dont keep your feelings bottled up.   Do you have close family or friends  you can confide in? Dont be afraid  to call them up to tell them your feelings,and what you need.   Let us know how we can further support you.   You never have to be alone.  
Help is out there. All you have to do is reach out.

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

Posted by Mznbutler on Aug 28, 2020 2:06 am

Thankfully while my mom was going through her cancer we were able to keep her at home during Covid. We did all her pain management at home. I would go to the grocery store pharmacy and everything. She denied treatments and we did her check ins over the phone. Very blessed she had an amazing dr and pharmacist, and the home care nurses that helped me learn everything that I needed to know. She was kept home until her very last breathe like she wanted. Days before her passing all her kids and grandkids got to spend the day with her and that meant the world to her. The last time she really smiled was that day. I’m so sorry everyone is going through different things during Covid with their loved ones. Not only do I say f*** cancer but f*** covid to 😒

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

Posted by Korhy on Aug 28, 2020 6:26 am

hi briefly read some of the post...my husband starts chemo sept 7 or 8th depending if they work on the holiday. I am so stressed about keeping my house clean still working as i work in a group home and germs and colds and infections are always present. I am worried if covid makes it self present again in a huge way. I am worried about him going in and out of hospital. He will have one chemo treatment where he will be in hospital for 5 days and he will be an hour away so I worry about him not being able to see me.....so many things going on in my mind and super stressed.

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

Posted by Cynthia Mac on Sep 2, 2020 12:40 pm

Mznbutler‍ , thanks for sharing about your Mom’s last days. I lost my Dad in June, too, and there’ve been some high-running emotions as we go through his estate.

Korhy‍ , my dad was in hospital for the last month of his life. The family was allowed in once we knew he was reaching end stage, and we came and went multiple times per day for that week. We all have these images in our heads of people suited up to the max and our loved one living with health care workers who look more like hazmat workers, but I found that on the wards, staff is pretty well dressed as normal, but now they wear a regular old surgical mask. The only time they “gown up” is when they have to go into a room where a patient poses a risk. I hope this gives you a little peace of mind.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

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

Posted by Lianne_Moderator on Sep 10, 2020 5:30 pm

Hello Korhy‍ 

Just checking in to see if your husband had his chemo this week and how you are both managing.

Thinking of you

Lianne