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Let's Discuss...the importance of caregivers

Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 4, 2017 3:26 pm

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Caregivers play an important role in the cancer journey.  They often wear many hats, providing rides to appointments, personal care, and emotional support.  Do you have someone who cares for and supports you?  Can you imagine this journey without them? 

Are you a caregiver, if so how do you balance caring for your loved one and self-care?

Re: Let's Discuss...the importance of caregivers

Posted by jorola on Oct 22, 2017 2:57 pm

What I did (after not doing anything to balance things and burning out - a hard lesson learned) was to do even small things like:
  • lunch or evening out with my girlfriends
  • day out with my mom, even a phone call to talk about nothing really
  • call to my best friend (who lives 2 hrs away) but best was when she came in for a visit
But even when Mick was not having a good day and I could not leave his side and had to watch him there were things I could do to relax like:
  • binge watching Supernatural
  • jewelry making
  • reading
  • garden/yard work
  • or own of my favorite stress relievers was I would go to one of my favourite online stores and add anything I wanted to my shopping cart just cause and pretend I was going to buy it and ya then delete it all. Some may find that depressing but I found it fun to see how high of a bill I could actually rack up. LOL
But part of that balance is ensuring the patient also has balance too. Balance between treatment and a life. I made sure Mick had a life whenever he was having a good day like:
  • on days he was really good he went out to play pool with his buddies, I would drive him if need be
  • or I would have a buddy or his dad come visit if he wasn't quite up to going out
  • and we needed a normal life too. Mick loves going to movies and out for supper so I would take him to a movie and before his esophagus got bad from the radiation burns I would take him to his favourite steak restaurant. He got a treat and the protein that he needed.
  • or even on a so so day a good cuddle on the couch watching a movie with the puppies like we love to do was good too.
I personally strongly believe in trying to keep life as normal as possible. To let cancer control your life and take everything away is to let it take your power away too is just another way cancer wins the battle. So I think to continue living, laughing, and loving despite cancer is keeping your power over your own life and keeping it so that it is one thing cancer can never take away from you and therefore regardless of the outcome with cancer you win as you continued to live, laugh and love despite it - you have then won as cancer cannot take that part of your life away from you- this is my personal belief. Hope that makes sense.

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 24, 2017 11:46 am

Thanks jorola‍ for providing your experience and tips!!

I'm not the only one who online shops and fills up the cart and then deletes it all???? soul mates lol! cheeky

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 24, 2017 11:51 am

How has your relationship or role changed since being diagnosed with cancer or having a loved one diagnosed?

Sometimes..
  • -People only feel comfortable with a spouse or partner taking care of them
  • -Parents may have a hard time accepting help from their adult children
  • -Adult children with cancer may not want to rely on their parents for care
  • -Caregivers may have health problems themselves, making it physically and emotionally hard to take care of someone else
Do you have experience with any of the above scenarios?

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 24, 2017 12:04 pm

All are welcome to comment!

Some caregivers to start us off..
GrandmaK‍ , supportivewife‍, Brighty‍, ladaallo‍, Amanda26‍, rainbowpromise‍, sguido‍, lauracf‍, Charro‍, MarySR‍, itsawonderfullife‍, Tired‍, AshZ‍, momto2‍, MalcolmS‍, Alanadeannam‍, PBear60‍ , andra‍, jdtv‍, Rickconn‍ 

Re: Let's Discuss...the importance of caregivers

Posted by hkjudy on Oct 24, 2017 1:20 pm

My husband was the caregiver (5 star IMHO) and after my treatments he continued to treat me with kid gloves, feeling that I was fragile.   It drove me crazy for awhile and I finally made him understand that he really didn't need to be in the caregiver role anymore.  

Although he's a reserved British man of an "older generation" and holds his feelings deep down inside, I can tell that he is still worried and protective of me.  I fainted at a concert just the other night (I have low pressure and this isn't uncommon for me) and a friend who was sitting behind us said that she literally teared up when she saw how he held me and kissed me until I came to.  I don't think that this will change now and I really appreciate his love.
Judy (Nanoose Bay, BC)

Re: Let's Discuss...the importance of caregivers

Posted by Minus2 on Oct 24, 2017 1:29 pm

My husband is a great caregiver, although he's not always intuitive, so I needed to be clear in what I needed from him which has worked for the most part.  One frustration I have is that he is so protective and like hkjudy‍'s husband, he thinks I am fragile and he stops me from doing things I think that I'm not only capable of, but that are good for me in terms of recovery from surgery.  My son who lives at home has also been very good to me, checking in to see what I need and preparing meals etc.  He even missed class one day to drive me to a Dr. appointment that was scheduled in response to a problem with my leg less than a week post op.  Don't know what I would have done without them.
Minus2

Re: Let's Discuss...the importance of caregivers

Posted by Alanadeannam on Oct 24, 2017 1:36 pm

Hi all, It's been a bit since I was on Ken has declined quite a bit so my days are spent taking care of him more. Like many others I binge watch Netflix on my iPad while hubby rests on the couch by me...rigt now I am binge watching Bones! I also crochet as I can't seem to concentrate on reading. I also love my Pinterest always looking up new recipes, DIY projects you name it! And when I get stressed out I head downstairs and run on my treadmill. I don't get to get out as much now little quick trips to the store or drugstore. I might have to try your online shopping thingy sounds like fun. We have it hard as caregivers but I think my husband has it's worse as he's living this nasty disease everyday till the end. Have a great week everyone! Alana

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 1:54 pm

Being a care giver is rough.. my fiance gets depressed and shuts down and doesn't communicate with me.. he gets annoyed when I hover over him and care for him so I try and give him space.... the worst part for me is watching someone i love suffer day after day before my eyes and not being able to do anything. If could swich places with him I would do it in a heartbeat

Re: Let's Discuss...the importance of caregivers

Posted by Amanda26 on Oct 24, 2017 2:46 pm

How has your relationship or role changed since being diagnosed with cancer or having a loved one diagnosed?

Our relationship has gone through stages since his diagnosis and we have been different things to each other at different times, if that makes sense.  It was hard for me to care for such a pig-headed and independant person (his words lol) because I didn't want to baby him or make him feel "sick", that was his pet peeve.  We also had our active and difficult toddler to care for and it was an added stress to try and take as much of that off of him as I could.  Hubs has since told me how he could not have made it through with anyone else by his side, knowing his eccentricities and how to soften the road ahead for him - he didn't say too much while he was in treatment and it was really touching to know how much I did help him through it all.  So cliche but we are stronger on the other side of it all - there were days we both questioned our future together, but thankfully it all righted itself :)  

Amanda     

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 24, 2017 4:12 pm

Thanks for sharing all

Alanadeannam‍ - nice to hear from you. Are you getting any homecare help at home? Where are things at right now?

Amanda26‍ - "Our relationship has gone through stages since his diagnosis and we have been different things to each other at different times" -Great point! Thanks for sharing, so glad it all righted itself. smiley

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 4:37 pm

This is ridiculous. . The biopsy results have been in for days already and the doctor hasn't returned our calls! If it's bad news we need to get treatment started soon! Do doctors care about peoples lives?????

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 24, 2017 4:55 pm

Hi Brighty‍ 

How did you hear the results are in? 

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 5:08 pm

HI lacey! The secretary said they came in last week.. it's so frustrating. . It's been 5 months since this nightmare and we are no further along

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 5:13 pm

I'm going to go see Brighty now and cuddle with him

Re: Let's Discuss...the importance of caregivers

Posted by Belanos on Oct 24, 2017 5:16 pm

Brighty‍ 

Well if the doctor hasn't contacted you yet, it probably means that it's good news. They're very busy people and need to prioritize their time for their more serious cases. If he's putting your fiance on the back burner, it's most likely because he's not in any serious condition at the moment. I know it sucks to have to wait in order to be told that, but our health system is pretty much stretched to the limit and the professionals running it can only do so much. It's probably not that your doctor doesn't care, it's just that he's very, very busy. Try to be patient.

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 5:32 pm

Thanks Belanos I pray you are right! !!!! Then all that's left is to schedule surgery and that needs to be done asap

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 24, 2017 5:34 pm

I'm with brighty now.. he is getting fat lol!!!!

Re: Let's Discuss...the importance of caregivers

Posted by Alanadeannam on Oct 24, 2017 5:47 pm

Lacey_adminCCS:
Thanks for sharing all

Alanadeannam‍ - nice to hear from you. Are you getting any homecare help at home? Where are things at right now?

Hey Lacey- Yes we are getting homecare but Ken won't have them here as much...he only trusts me right now and our nurse understands. He sleeps a lot now so it's actually easier now as I am not running around as much. Our doctor doesn't expect my husband to make till Christmas just because everything is starting to shut down. It's been a long road and I know the end is near...there is a part of me that has shut off to it all as its my way to cope. He's a proud and stubborn man but he loves me and he's told me this more now then ever before. We take life as its given we roll with punches and we love with a fierocisty that only we as caregivers can understand!

Amanda26‍ - "Our relationship has gone through stages since his diagnosis and we have been different things to each other at different times" -Great point! Thanks for sharing, so glad it all righted itself. smiley

 

Re: Let's Discuss...the importance of caregivers

Posted by scaredysquirrel on Oct 24, 2017 8:34 pm

Since my cancer diagnosis my husband has been my care giver.  He drove me to all my appointments and went to every chemo appointment with me and was prepared to take me to all my upcoming radiation treatments until his heart attack.  Now we are both care givers for each other.  He can't legally drive for a month so I'm driving him around and I'm trying to help with some of the chores he always does for the outside care of our home.  It's funny how we both had our specific jobs around the house and never really paid much attention to each other's task.  Life can sure change quickly and you have to be prepared for anything!  It's a struggle right now for both of us, be we are managing.  

Re: Let's Discuss...the importance of caregivers

Posted by itsawonderfullife on Oct 24, 2017 10:00 pm

Hi all. It's been a while since I've commented. I was a caregiver for my husband who was diagnosed at stage 4 and had all kinds of medical issues to deal with along the way.

I don't know how people without someone advocating for them get through it. Our doctor said they end up in hospital. I took my first 'break' from work in almost 40 years, other than vacation. I took compassionate care leave and I'll never regret that decision. My husband was bipolar and through everything, his depression never seemed to come back. He and I were close. He could be difficult but he knew I had his back and his best interests were my priority so he trusted me to deflect people who would annoy him and make decisions on his behalf. We also had wicked senses of humour so I tried to keep him laughing. And I kept him connected to his friends and my family particularly when he couldn't speak properly, couldn't write and wasn't mobile. He had been a great talker and conversationalist so losing his voice due to laryngeal cancer was an ironically cruel twist of fate. On his birthday, he couldn't eat but we picked up cupcakes and muffins and delivered them to the staff at the cancer clinic - he had been in the nursing bay for  number of days by then, radiation, for bloodwork, chemo desk, so he sat in the wheelchair while we delivered them around. Because he had mobility issues and was using a walker, having the volunteer drivers to get him to radiation was not an option, so I was his chauffeur. For the last month, he needed to go to hospice - the staff were so good there and I told them to call me any time of the day or night if he needed to talk to me - talking to me reduced his stress level and he was less likely to lash out verbally at the staff. It was 5 minutes from home so I spent a lot of time with him there. i'm so glad I could help make the journey for him as uncomplicated and coordinated as possible. It provided me with a largely guilt-less mind, now that he has passed, and while I grieve, I'm also able to move on creating a new normal without carrying the guilt-monkey on my back.

I returned to work about a month after he passed. About a month later, one of my staff asked if I would talk to a friend of hers in the company about compassionate care leave as her friend's Mom had cancer. So I did. I received a note after she returned to work - her Mom passed a month after she went on leave. I'm not an expert on being a caregiver but I'm happy to pass on what I know and what I learnt. Now I'm actively dealing with my grief through a bereavement fellowship group and finding ways to keep my commitment to my husband - I told him I loved him, I would miss him horribly, but I would be okay. I am largely functioning well but not perfect. Trying not to add more pressure to my life than necessary and giving myself the latitude to let certain things slide until I feel up to dealing with them. Focussing on getting through the stress and grief and come out the other side as a functioning, positive human being. And I picked up an 18 year old starving stray cat with medical issues. I guess I still need to be a caregiver to get through. It will be 6 months since he passed on November 10 andd his birthday is shortly before that. Halloween is the anniversary of his first radiation appointment. I've already started the anniversary list - anniversary of his first medical appointment, anniversary of diagnosis, anniversary of the last time he ate food, and the list goes on. I try to acknowledge the dates, give myself a moment to remember and grieve, and then move on or remember the absolutely hilarious memories we had. I was so lucky to have had him in my life for almost 24 years and we always recognized that we had something special. And I'll always have the memories. I wouldn't have traded caring for him for anything. So anybody who has a caregiver and is feeling guilty - don't deprive people who want to help of the opportunity to help - you're doing them a favour too.(Sorry - what was the question?) Thanks for reading.

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 25, 2017 10:36 am

itsawonderfullife‍ - It has been a while and it's so nice to hear from you. You have shared so much wisdom in your post as always about your role as caregiver. It's so easy to look back and feel guilty about certain decisions after a loved one passes. I'm glad you do not have any guilt and are feeling good about your decisions for your husbands care. I remember reading your posts throughout the journey and you really did take wonderful care of your husband always having his best interest at heart.

I'm so glad you are giving yourself time to work through things and you are getting support. Sounds like you are doing well with your promise. 

It's also very sweet to hear about your new role of cat caregiver :) Have you met happyhooker‍ she became a dog caregiver after her dear husband passed.

Don't be a stranger :)

Lacey

 

Re: Let's Discuss...the importance of caregivers

Posted by Lacey_adminCCS on Oct 25, 2017 10:40 am

Hey Lacey- Yes we are getting homecare but Ken won't have them here as much...he only trusts me right now and our nurse understands. He sleeps a lot now so it's actually easier now as I am not running around as much. Our doctor doesn't expect my husband to make till Christmas just because everything is starting to shut down. It's been a long road and I know the end is near...there is a part of me that has shut off to it all as its my way to cope. He's a proud and stubborn man but he loves me and he's told me this more now then ever before. We take life as its given we roll with punches and we love with a fierocisty that only we as caregivers can understand!

Alanadeannam‍ - It's great that your husband is trusting of your care and you have a supportive nurse. I imagine it's also demanding on you. Sounds like you are taking time for things you enjoy. I'm glad he is able to express his love for you during this very challenging time. Keep rolling with the punches girl, you're doing a great job in an impossible situation. Enjoy the little things about each day :)

You have a community of support behind you, pop in when you can

Lacey

 

Re: Let's Discuss...the importance of caregivers

Posted by rainbowpromise on Oct 25, 2017 4:52 pm

I finally made it back here.
Thanks Lacey for putting me in touch with another support group, but all the ... everything takes up a large chunk of time.
In answer to the question.

How has your relationship or role changed since being diagnosed with cancer or having a loved one diagnosed?

I will start with my history of my caregiving. I'm certain I was the horrible and bossy big sister, but where I had a right to pick on my little brother, other bullies didn't. I remember marching down the lane to confront the neighbourhood bully for punching my brother and returning home crying because he punched me in the stomach too.
At age 8 I looked after my new baby brother because my mom didn't want him.
By age 12 I was the protector of every child in the low rental block we lived in. While parents neglected their children, I brought them into a warm kitchen and fed them cookies and hot chocolate. Not all that nutritious, but it was all I had.
Even as an adult, I slip into the role of caregiver almost whenever I am faced with someone in need. This included my mother.
So when she was dealing with breast cancer in 2015, I was there. I sat in on appointments, took notes, and researched. I made a month worth of freezer meals before I had to return to my own home and family. All this while still recovering from a heart attack in 2014.

Now my focus is on my husband since Aug of 2016.

Where I am the "caregiver" my husband has always been the one willing to be cared for.
I was hurt, angry, and even vengeful when my husband was diagnosed. The reason is because when I had that heart attack, he didn't come to see me at the hospital even once.
When I called him to pick up the van, the words I didn't say were, "I'm scared, come and hold my hand."
He picked up the van without even stopping in to ask about me.
When I called to tell him that they were setting up to take me to a bigger hosptial for surgery, I was really saying, "I scared, come be with me."
He wouldn't even turn the sound on the TV down while talking to me.
When I called to tell him I was being emergency transfered, I was saying, "I might not ever come home."
When I finally called to say I needed a ride home, he sent one of the kids.
When I asked him to stop smoking in the house, he complained every chance he got for more than a year.
I went to every test and appointment on my own. On the day I was allowed to drive after a month, he gave me a pile of errands to run. I was terrified out there driving.
 
I have been to every appointment with my husband. When I try to leave him to deal with it on his own, he loses it. Not angry, but more like brain function. Just the other day we went to the 3rd floor of the hospital, got off the elevator, and walked to a doorway withing easy sight. When I offered to wait downstairs for him, he freaked out that he would get lost.
This is the man that used to do all the driving because I didn't learn until I was 30. Now he depends on me to know where we are going and when. He doesn't even get out of his chair to dress until I tell him to. Then he goes and stands by the passenger door until I get there.
He has a key.

I keep thinking, "What if it was me?"
The answer is that I would be dealing with much of my treatments and tests on my own. I could get a ride if I ask, from my children, not my husband.

I thought we were going to look after each other as we grew old, but that is not the case. But, in my husband's defense, I saw the writing on the wall more than 30 years ago. Before that I had this strange prescription for glasses that was all wrong. The lenses were rose colored.

I will see where this journey will take me. We are not faced with only cancer. That is actually the easy health issue in his case, but it is the only one they can treat to some extent. His heart is constantly irregular and fast. Any exercise tires him and alters his breathing. His legs swell if he isn't on daily diuretics. He has a hernia that is large enough to make it difficult for him to walk. He has to wear pants that are 5 sizes too big to accomodate it. He has regular attacks of gout. So far he is not bad enough to need oxygen, but that day will come for his emphysema. We find out in Dec if he has another (third) cancer. All stage 1 or 2.

In light of all that, I do everything and will probably have to find work some time in 2018.

I might have to resort to writing Harlequin romances for money. {shudder}




 

Re: Let's Discuss...the importance of caregivers

Posted by Brighty on Oct 25, 2017 5:26 pm

rainbowpromise‍  wow, you are dealing with a  LOT!  I think I remember reading a similar post like this from you a few months back and felt so bad that your husband was not looking after you after your health scares.      You are an amazing person to do so much for him and for so many others.      I hope you are looking after yourself too.     

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