How Are All The Caregivers Doing?

CentralAB‍ You are a gem!

Yesterday was a rough day for me. It was the end of my two weeks of sequestering, and while things have changed rapidly, I felt bad about going out at all, let alone to some of the more frivolous stops I made soon after I got home. I avoided crowds, thankfully, but now wonder if I really needed to go to the fabric store to get zippers for a project. But as time has gone on, and the information has come in, I am doing better. 

Then there’s the nervousness about being around my Dad. AM I safe now to be around him? Should I wait another week or two to be on the safe side? (Meanwhile, he’s hopping in the car and driving to town...)

Then, our neighbourhood was vandalized night before last by a 12 year old who went on a tire slashing spree - thankfully he left my car alone (I was in a row of about 8 houses that he skipped), but many of my neighbours had to be towed, because he took out more than one tire on their vehicles. He’s been caught, but he’s 12 years old. (And they’ve only been out of school a week!) The police said it was the worst case of vandalism he’d ever seen in the city.

With all that being said, today is another day. Last night I re-joined Audible and I downloaded some meditation books by Jon Kabat-Zinn and Dr. Wayne Dyer and this morning I did a 20 minute meditation with affirmations, so I’m feeling stronger.

I am keeping in touch with Dad via phone, and he sounds good, and I really appreciate my sister filling in while I’ve been out of the picture.

Thank you for having your “finger on the pulse” of what I needed today! You really ARE a nurse! 💛

:) hanging in there. Hubby is in hospital. So that's sort of less work for me. But I get less done because I worry so much....
he should be released today as they are turning it into a covid assessment center. They're planning on sneaking in the stent replacement before the official end to procedures is announced. Cross your fingers.

what gets to me is the paranoia. Eyeing everyone sideways, stepping as far away from people as you can. The gut jerk when someone down the street is coughing...

time for fresh air. Funnily enough, there are so many more people out walking now than there used to be. Springtime, or decompressing. Who knows.

justDwilldo‍ , sending you thoughts for a peaceful transition for your dad, and healing and sympathy for your family. 

CentralAB‍ 

Thank you for starting this very important post. We know how challenging it can be to be a caregiver at the best of times..
Sending out a big virtual hug for our fabulous caregivers.

justDwilldo‍ - such a difficult time but I am glad it is eased even a little bit with your appreciation of the facility. Keeping you both in my thoughts

Lianne

Im really happy to see that this topic is appreciated by the caregivers. I couldnt get back to post much as we have had some challenges over the last few days, which I am happy to say were resolved this morning. Ill be able to chime in more after supper. Take care everyone, do what it takes to stay safe & sane. Our loved ones are counting on us.

Thank you for this photo, this is my first time posting and am so grateful to find this site. I hope all of you are all finding some respite from the added anxiety of dealing with Covid19 protocols. 

 

The whole panic thing going on out there is particularly hard on vulnerable & caregivers alike. We have been experiencing a number of challenges. For the life of me I cant figure out why on earth people are hoarding toilet paper, and related products. Its really a cruel way to treat the people who cant get out when they want/need to get some. I have looked every day for a week, with no luck. We are one of the more fortunate, I suppose, because I was able to get a good load of kleenex to tide us over, but now the store shelves are all empty of such products. The only grocery store in town has begun a special one hour opening early in the mornings, from 7am till 8, just for seniors only, but I wont be a senior until April.

We also had some trouble with my wife not being able to swallow pills, and for a week or so I was unable to give a few of them to her. She developed a symptom that was really hard on her and myself, but I didnt know what was causing it and I was scared to let anyone in the house to check it out a little. Luckily, my old "nursing brain" kicked in, and I just back-tracked things a bit, and asked myself: "OK. Whats different now, than from say a week ago, before those symptoms started?" So the thing that came up was the one medication apparently causes withdrawal symptoms, the very same as what my wife was starting to experience. Then I went to the pharmacy, kept the social distance, and asked the pharmacist if that medication could cause withdrawal symptoms, of the kind she was experiencing. She said yes, they could, so we figured out a way to get this med into her and all is well. But with everything else going on, the whole thing was quite amplified, to us. So caregivers, if your "patient" has new symptoms, just remember to think back and check the meds...maybe they are not always being swallowed, or some such thing. Usually they have it on the bottle if the med is not to be discontinued abruptly, and this one didn't have any warnings about that so Im guessing thats why it slipped past me for a while.

Had to have a conversation with the funeral home guy today; not really my idea of a Saturday afternoon conversation. But my wife has always said she doesnt want any last minute panic planning, and to make sure things are arranged, in advance. It does feel good to have that out of the way, and to know that now, I just need to make one phone call when the time comes.

Meanwhile, when the world decides to panic, I have a little survival tip that I use frequently. Just find one thing "normal" to do each day. Today, I bought her flowers. (or, did I buy those for me, lol). Just a small bunch of Tulips for $4.00 and even though she is now totally blind, I told her all about them, and they sit on the coffee table as a little monument to "life goes on," and there is no need to stop loving one another when the rest of the world wants to panic. Its one of the reasons I frequently say:

"there is always a little bit of light."

 

They’re lovely, CentralAB‍ . Thanks for sharing!

Welcome to the site J64‍ .and kudos on taking that first step of posting. It is not always easy.

Let us know how we can best support you

Lianne

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

 

I haven’t been on for awhile but some days I think I’m losing my mind!! Today was supposed to be his nineth chemo. He asked me to cancel it because he can barely stand for any length of time. He said to tell them he is not giving up but just needs more time to gain some strength back...they are totally good with that and now the apt is one week away! Fingers crossed that he will be strong enough. His appetite has decreased more so it’s puddings jello and ice cream as well as protein drinks.  He has lost close to 20 lbs. I know some that have lost 100 lbs so we are doing better than most. There is no cure but we are hoping for remission or just to stop it from growing further. Stage four is hard when it has grown and affecting the entire liver.  
yesterday I had a good cry while sitting by myself.  I have hobbies but I am not interested in doing any of them, I wonder why?  Today I thought it was my daughters birthday, I even posted birthday wishes....I quickly realized I was a week early!!!  Wow WTH where is my brain going these days! COVID 19 is the added enemy right now. I don’t go out of the house for fear of bringing this enemy in to the house and affect my husband, not sure I could handle that!  We have young people that live nearby and are friends with our children.  Every time they go to the store they ask if there is anything we need. They drop it on the front porch and I wipe everything down before bringing it in the house. I then etransfer the money. Works out great.  It has been two weeks since his last treatment and he is still spending most of his day in bed.  
I miss family connections.  I spend a lot of time online, maybe I should just stop that and limit my exposure but I like keeping in touch with everyone and I don’t want to miss their messages.  Take good care all of you. As the saying goes “this too shall pass” just wish I knew when.

Hi Dot75‍ .   Sorry to hear things aren't going that well.   It's a double whammy,  dealing with cancer  and now this horrible  situation.     I'm crossing  my fingers that hubby can get his chemo  treatment  next week.    Have you consulted a dietician  about the loss of appetite?   He or she may be able to advise on the best diet for your husband....stuff that is highest in calories .      You mentioned you have hobbies.     What do you like to do?  Can it be something  you and hubby are able to do together? Something  simple  of course that won't take too much effort .  Even just watching tv together  .   I'm no doctor  but it sounds like you are in a bit of a rut and that's totally  understandable given the circumstances.      Can you talk with a councellor  by phone?    Not surprising  you got the date of your daughters b day mixed up.   With every day just rolling  into the next right now with covid I think many  of us are losing track of dates and time.     I'm glad you have someone to drop off groceries for you.     Some people show their kindness in the worst of times.     I'm not sure too much time on line is such a bad thing these days.   It's all we have now and you don't want to lose connections.     Please feel free to lean on us.. we're here to listen and  be there for you... so don't hesitate  to log on and post.     

Hi Brighty, thank you for the kind post.  I like to read, I like to paint with acrylics on canvas, I like crochet, crafts of all kinds.  I like to cook too.  I was cooking new recipes for awhile, but they were only for me. My husband is diabetic and he only likes certain things and his taste buds have changed on top of everything else. It was difficult enough before that!!  I’m not complaining but I fear I’m shutting down.  I was reading a good book “The Emperor of all Maladies.  I was enjoying it too, but all of a sudden I stopped reading it, I stopped making some new recipes and I haven’t picked up anything to try either like crochet or painting etc. I do clean the house and keep things going that way, I don’t think about anything else when doing that! I miss our girls random visits as well. I talk with them and even had a video chat with our eldest granddaughter which was really nice!
my sister is in the same boat as,I am just 4 treatments behind us. He has stage four as well!!   Some days I sit and look out at our fifth wheel trailer and feel like I am mourning the fact we may not be able to go again!!  I have been looking at my garden as well and saying that maybe when the nicer weather comes I could go and play in my garden!!  I took the garbage out to the curb last night and just stopped and took some deep breaths and enjoyed the smell of the cold crisp air, almost reminded me of autumn not spring.  
maybe I will dig out some yarn and see what I can whip up!! Worth a try I think....it might get me out of the blues for sure!!    I will check in again and let you know if I choose something that I like.  Thanks again,
Dot75

Yes, please do check in again Dot75‍ .    Maybe we can do this together.    We can each try a recipe  and post how it went.   I admit  I'm not a cook but since I have nowhere to be now I might try my hand at cooking... ( been saying  that for 46 years) but maybe this is my golden opportunity.     Post and maybe  we can motivate each other to cook and continue  our hobbies!!! 

Vox‍ What a beautiful, but heart-wrenching poem. So many of us are asking “Who am I kidding?” These days, and hope can be in short supply. I’ve been trying to draw strength from my ancestors who lived through greater challenges than this one that has been put before me.

And, I’ve been trying to help others who are struggling, through e-mail and socially-distant communication.

Dot75‍ , I’m glad to hear the change in your message in just six hours. I had an “attitude adjustment” myself on Sunday in the form of a good cry. Apparently I’d been bottling up emotions for a few days, and things changed substantially after I allowed some of them to flow.

I’m glad that your hubby’s team is on-side with deferring a treatment. Are you able to “bulk up” his food by adding whey powder to smoothies (or is he non dairy) or other high-fat options? (Maybe nuts, or cooked legumes...)

 

I have not written for a while.  My husband went through 2019 as the year of cancer - from diagnosis to treatment to surgery to all clear. We felt extremely fortunate and got ready to close this chapter with the new year - 2020.

However, a pain developed and it was thought to be gall bladder. A trip to Emerg found a collapsed lung. A fluid draw was taken for analysis and it got worse. An ambulance was called, hospital admittance, a chest tube for drainage and a very vicious infection bloomed. The chest tube drained and drained and drained. The chest fluid grew very thick and would not drain, the antibiotics had some impact but could not defeat the infection.  A surgical chest wash was done removing a litre the infected sludge but could not get it all so an additional two week regime of IV antibiotics was completed.  

Five weeks in hospital!  

I suffered a lot through all this time. It seemed my calm and brave demeanour evaporated.  I reached out to our family and friends - they came through in more ways than I could imagine.  My sister-in-law came, my neighbour took our dogs into her own house, neighbours cooked, encouraging emails came daily. Our optimism returned.

we are now home and gaining our physical strength. It continues to be a long road as a blood clot formed in the lung so we are taking it very slow. 

I write all this under this topic as it was the question posed made me realize the journey and the progress we have made to get to our normal.  I have always appreciated the contributions of those in this group.  Thank you one and all. 

caregiverCAL 
Catherine

Hello CaregiverCAL‍ 

Nice to hear from you.  Wow you have both been through a lot of late. I am happy to hear that things are improving now.

Thank you to your contributions to this group as well.

Take care

CaregiverCAL‍  I'm so very sorry for this set back and what you went through.    I'm glad you had support... I'm praying hubby recovers  soon...... please don't hesitate to lean on us here.... we understand  and will support  you.    Check in with us again to update us.    

Good morning everyone, I am a new caregiver for my newly diagnosed husband.(B cell lymphoma) We are doing ok but he starts his first round of chemo tomorrow (8hours) and Friday for 2.5. I am not sure what to expect over the next week and we have not had a chance to speak with his Dr. yet about these things. Tried calling in to the cancer clinic yesterday but they are so busy and I found myself feeling guilty that someone else likely needed them more than I do at this point so I hung up after 15 minutes on hold. However, I did not sleep much last night with all the anticipation of what is to come. Will he be throwing up, will he be bed ridden, will he super tired, when will he lose his hair. We would like to take control over as much of these things as possible - he has even decided that he is going to shave his head likely next week before he ever loses his hair because he wants to control the "when". He is such a strong man and I fear that seeing the physical changes in him over the next 5-6 months is going to break me. 
I am looking for some ideas of what I should make for his lunch to take with him Thursday?
thanks everyone 

Welcome Bookie‍ .   I'm sorry you have to be part of the cancer club..  the club thst no one wants to join.    Glad you found this wonderful  supportive  group.     It's hard to say how your husband  will react to chemo because  each individual  reacts different.    Normally  before chemo sessions there is 'chemo teaching ' but like they won't do that in person now.   I would try giving another call.. they may do it with you over the phone or refer to  something on line to watch  in order to be better prepared .    What does hubby like to eat?   He may take a lunch and/or maybe some light snacks with him.    He must keep hydrated. .  That is most important.     Chemo is not as bad as it used to be... they now give anti nausea meds before chemo.    Try calling again and let us know what else  you find out.      If you have any more questions  don't hesitate  to post.   We are here and we will listen.    There are very knowledgeable people here who will reach out to you.     Good luck and keep us posted .   

Really crappy because my dad is in Montreal with lung and lymph node cancer, no treatment because he's had too many recent strokes, and my husband and I were coming to see him/say goodbye April 29 but now we will have to cancel the trip :(  I may not see my dad alive again..... VERY SCARY!!!!  Also even if I did go I'd be so scared to bring the virus to him.....This is like a nightmare we can't wake up from!! :(

Janesheis‍ I am so sorry that you are experiencing this stress and heartache.  Not only is your dad so ill but because of this awful virus you may not be able to see him.   My heart and thoughts go out to you and your dad.

The virus situation changes from hour to hour and plans have to change with them.   I am in BC and heard a doctor on CBC radio this morning say that sometimes it is possible to arrange a visit to someone who is very ill.    I am sure that visitors would be checked for the virus.   Is it possible to connect with him by phone or better still something like FaceTime?  

It is always important to have support whether you are the caregiver or the person who is ill but more so at present.   We as a community have knowledge and experiences of cancer and do “get it” and we care for and support each other so please keep in touch.

Healing thoughts.

Margaret

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