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Very new here not a clue about being a caregiver

micgrace
Posts: 131
Joined: May 2011

My wife has just be dxed with a stage 3 glioma. I have not the slightest idea on how to be a caregiver. A role I did not want in a club I did not want to join. But I have been chosen. Suggestions.??

mr steve
Posts: 286
Joined: Sep 2009

Mic,

Just be there for her. Just as your love for came easy so will the role of caregiver, thou it is not an easy job. Let her yell and scream at you, then you can come here and scream at us.

Steve

micgrace
Posts: 131
Joined: May 2011

My wife has very rarely screamed at me. She is totally accepting of the fate handed to her and really is an amazing person. I would yell, scream and everything if I had the diagnosis. She was a uni student near the end of her degree. The uni is going to give her a certificate of achievement as she is not ever able to finish it due to the cancer killing off cognitive functions and right hand side functions. I am totally unprepared.

micgrace
Posts: 131
Joined: May 2011

Does anyone have any suggestions on what to say or do with teenagers around a stricken mum.?? How does one look after their needs as well while on a carer pension? I am in Australia where one has access for a disability pension for the victim and a carer pension for the potential survivor.

crowsdarklove's picture
crowsdarklove
Posts: 4
Joined: May 2011

My friend is in the final stages of pancreatic cancer, and he's got a 16 year-old daughter. Even though she doesn't live with him, she has seen him get sicker, go to and come home from the hospital, and has made time for just him and her. Of course this is hard for her, but since my mom, myself, and her grandma have been very honest with her, that has made it easier for us all. Teenagers will understand almost as much as an adult, and never hesitate to ask for or accept their help. Just recognize that, just like you, teenagers will have times where they need a break from being caretakers, and they will also have times where they are simply not comfortable with things. My friend's daughter has learned to deal with having less, and it is highly likely your kids will, too. The most important thing to them is family, even if, being teenagers, they don't always show it. You may be surprised at how loving and accommodating kids and teenagers can be. Please just treat them as you would want to be treated right now. :)

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

There are so many things about being a caregiver I don't know where to start. Here are a few that I can think of off the top of my head:

1) Get a BIG binder and keep everything medically related together - scan results, reports, med lists, release forms from the hospital, insurance stuff, bills, that kind of stuff. Keeping it organized in one place is a good thing. When you visit a new person, bring it with you. This way you have any info your wife's person would need to know.

2) It helped me to focus on one thing at a time and getting through that one thing. For example, when Patrick was dx'ed his first step was surgery. So I focused on getting through surgery successfully before I had any thoughts of the next step. It helped me to look at this as a relay race/marathon versus a constant sprint.

3) Take time for you each day. No, an extra 10 minutes in the shower does not count. Do something each day for you only, and once a week take an hour or so just for you. You are the first and last line of defense, so to speak. If you break down, everything goes haywire.

4) Utilize any and all offers of help. Many times people who hear the news want to help but aren't sure how. Be specific and kindly say "I need to go do ________, could you sit with my wife while I do that?" or "_______ needs to be picked up. Since you work near there would you mind terribly if you grabbed it on the way home? I can get it later/tomorrow" If you are not used to asking for help, this will be the hardest part. But use it as much as you can. You didn't say if you have kids, or if you have any family support. This can be tied in as well.

5) Take each day as it comes. It's going to be hard, but try like he!! not to borrow tomorrow's troubles. Live as much in the moment as you possibly can. It's easier to focus on the good and see the sunny spots when you're not running through the litany of what can go wrong or how bad it is.

6) Read back through some of the previous posts for inspiration or to find a similar situation that you are going through. This works on the board for your wife's cancer also. Be wary of the TMI brain. Sometimes it's better NOT to know everything (trust me on this one).

This sucks, no two ways about it. But you can do this. I gots faith in you :)

Hugs and Loves,
April

P.S. hi steve - good to see you

yv1214's picture
yv1214
Posts: 72
Joined: Feb 2011

Doing something for yourself although might seem wrong at times because of the situation is important. If you need to vent, scream or yell we are all here for you.

hugs,
Yessy

micgrace
Posts: 131
Joined: May 2011

I was writing a thesis to obtain a masters by research and ready to enter into the doctorate program as a high level candidate. I feel torn between 2 worlds. My wifes, who I feel I cannot let down and my world of research. A real problem is a total lack of support for me which sounds very selfish since my wife needs it, not me. This is the last thing I expected.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Almost on the verge of getting just want you want, what you have been working for and BAM! Yup, been hit by that Mack truck.

Best thought is to speak to your advisors at school and honestly explain the situation. See what they have to say. Also look at the treatment plan for your wife and see if you can handle the course load while taking care of her.

If it's possible, see if you can dial back for the time being. People can be incredibly compassionate. Never know until you ask.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Yes, yes, one of the toughest things about being a caregiver is having to put your life on hold. Many of us have lost jobs, contracts, educational oppotunities, you name it. You get to feel angry and grieve these losses.

On the plus side, you must let others in on what's going on in your life, and allow people to support you. You will be amazed at how many others have done their time as caregivers, and want to help you. They will make it possible for you to buck up and carry on.

I do research work, too, and it has saved me at times. There's nothing like losing yourself in good work for a few hours to redeem a crummy day in caregiver land.

micgrace
Posts: 131
Joined: May 2011

Hi good to see I am not alone after challenging research work. I will be teaching chem tomorrow afternoon at the uni for a break. I was just about to finish off and submit a very significant materials research paper as the dx became apparent. I do feel cheated by that. But I do love my wife very much and hate to see her suffer. However she has lost much more than me so I feel I am being very selfish pursuing academia.

ButterflyLake's picture
ButterflyLake
Posts: 44
Joined: May 2011

Hey Micgrace: You're not alone on this. I've been caregiving for my mother (Stage 4) without support as well. For a long time (too long), I tried to make everything work (being a full-time lawyer, new wife, and primary caregiver). If I could go back, I would have done it differently. It was too many hats to wear.

Somewhere along the way, I realized that I only have one mom, and I reallly only want to have one husband. So, the job had to go. It sucks to have a big career set-back, but there will be other jobs, and other opportunities. It has been a blessing to be fully present with my mom as I care for her and to be able to spend time with my husband.

If it is possible to take a sabbatical or a leave of absence, please consider it. On the other hand, it is good to have a distraction--something that keeps your mind busy. But if you are under deadlines and a huge time-commitment for your doctorate program, understand that the cancer patient's journey is unpredictable. Sometimes, you will have to drop everything to handle the unexpected. Would it be worth it to just push back entering the program for a semester or a year?

Just a last thought: The anxiety (and sense of loss/feeling selfish/guilty) associated with losing my job all slipped away when I realized that it won't matter to me in the future. I probably will not even remember the name of the company when I'm 75. But, I'll always remember that I gave my all to help my mom.

Good luck to you!

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Mic, I know what you mean about being a caregiver. It can be a demanding role, especially for someone who's never done it. You'll get better with practice. Meanwhile, I often kick myself into action by imagining what it would be like if Mom were living in the most swank assisted living or rehab facility in town. They would tempt her with breakfast even if she said she didn't want it, change her sheets while she naps in the recliner, go to the library and get an armful of books for her to read.

Much depends on what treatment plan lies ahead, but stage 3 anything is usually treatable. The big thing to remember is that being a cancer patient is an exhausting job. Your task is to make it easier, one day at a time.

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

Caregiving is a tough role. We want to fix our loved one. We want to take away the hurts. You can't. All you can do is the best you can do. Be there in whatever way you can. April hit all the high points. It sounds like you have a long road ahead of you. I'm sorry that both you and your wife are having to deal with such a difficult dx. Do remember that you do need to take care of yourself. That is one of the hardest things to do. Prayers and hugs, Fay

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

and by posting here you took an important first step to being a more effective caregiver.

I am a caregiver to my wife (urethral cancer, surgery on 4/12, now recovering at home), and this is a role I have had in the past (she also had squamous cell carcinoma a dozen years ago). No one wants to be part of this 'club' but here we are, and we can try to make the best of it by gathering information, doing what our partner or spouse or family or friend needs us to do, and by staying as strong as we can. If this sounds trite or simple, it isn't.

Cancer is an unwanted and wholly unwelcome evil that crashes into our lives and turns everything upside down. But we have to meet it head on and and use every available means in our personal aresenal to take it on. April provided a great list for you, and as a caregiver I can atest they all ring completely true. I would reiterate that you should create that binder and when you visit doctors, take a lot of notes and if you do not understand, have them explain something again.

And let me add that at times it is hard to find anyone to talk to except for those on this network. Use it. I have and I have done it a lot, especially the chat feature.

I am sorry to see you here, but I will say welcome, mic....ask questions. We will do our best to give you straight up answers. There is no BS on this site.

Conchal

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

I know exactly what you are saying we are all in a very unwanted role. For me I can't say this is anything new..My Dad was diagnosed with stomach cancer in feb 2009 we've had our ups and downs but i can tell you this much

I have met some wonderful people on this site and received alot of information, whereas i could not get any of this from the doctors prior to this. I found out the right questions to ask, what potential procedures i might expect.

Being a caregiver is so difficult. the fact is my father says it's not "his cancer" it's ours because it affects the family as much as the true patient.
Hang in there we have our good days and our bad days but the fact is people are here to hold you up when you are weak and celebrate our good news.

Feel free to contact me if i can be any help to you what so ever...even just a shoulder to cry on or an ear to listen

Valerie

micgrace
Posts: 131
Joined: May 2011

I got a bit of a serve from a well meaning relative about taking it easy by feeding my wife and not getting her to try and feed herself. I do believe and trying to get her to do as much is possible to try and regain some functionality (eventually, I hope). I make her constantly remember events and dates. I make sure she constantly moves the weak left side limbs and so on but this person thinks she should be treated like a total invalid.

Thoughts.??

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Has this relative lived with you and your wife the entire time you have been together? No? Then personally I don't care who it is, tell them to shove off. You know your spouse and your situation and your LIFE better than any one. You probably can look at her and know what she is thinking sometimes (which in the coming months will be a good/bad trait).

Tell them thank you kindly, I will take your advice into consideration, then proceed to ignore it.

But that's me ;)

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

Follow your instincts. You are the primary caregiver and know your wife best. There were times when I had to stand back and watch my husband
struggle with some task, striving for some independence. It wasn't always easy. I agree that you need to allow her to do as much as she can for herself. She is a cancer survivor, and you are helping her survive with dignity. Fay

micgrace
Posts: 131
Joined: May 2011

The relatives think I am a bit mean by making her do things and when she she has completed them increasing the difficulty. I do believe the brain can form new circuits given the right input. Operation is today. So hopefully she doesn't lose too much functionality. She is very frustrated that she can no longer do easy things like walk and remember things.

yv1214's picture
yv1214
Posts: 72
Joined: Feb 2011

to see hope you're doing well, as well as ask how the operation went. Well I hope.

hugs from my house to yours,
Yessy

micgrace
Posts: 131
Joined: May 2011

Its a glioblastoma. The dreaded stage IV. The majority was removed as it was clearly defined but was pressing into the ventricle. She deterioated somewhat on rhs movement and has little knowledge where she is. The have put her on steroids to reduce swelling.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

and don't forget to breathe. Sending all the happy thoughts I can.

micgrace
Posts: 131
Joined: May 2011

I am still breathing. My wife is still semi comatose after the resection. I hope she regains some functionality soon. I had so little time to prepare prior to dx and hospital and thats hard to take.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Just wanted to note that post-surgery, everyone looks like they are on death's doorstep. Looks can be deceiving! Your wife will begin to regain strength, slowly, in a few days, and will continue to improve. Don't let what you see today make you afraid of tomorrow, because there is a major plot turn coming up where you get your wife (and your life) back. Chip up!

micgrace
Posts: 131
Joined: May 2011

she is becoming conscious of her surroundings and can communicate. I certainly wish to regain some normality for as long as possible. Or even a cure from this dreaded menace. The glioma is the dreaded glioblastoma multiforme with median lifespan of under 12 months even with agressive therapies. However, some 1% end up living to a ripe old age. And she is a mere 42 years old.

neverquit
Posts: 221
Joined: Oct 2010

I hope your wife becomes part of that 1% club. Each victory against cancer (no matter the type or stage) is a victory for anyone who has lost a loved one to this dreaded disease. I lost my husband of 31+ years to stomach cancer (7 month battle) on 1/23/11, so I am pulling for your wife and you. Take care and one day at a time.

micgrace
Posts: 131
Joined: May 2011

An improvement today in cognitive abilities, however the right side limbs remains basically dead. She is supposed to be moved to a ward once a bed is available. My sister seen her for the first time post op and was impressed by her progress. It is good considering how she presented prior to surgery.

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

I have been reading your posts and am pulling for you and your wife. I hope she continues to improve. All the best to you.

Karen

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I have also been lurking and reading of your wife's progress. In this battle we have to learn to celebrate the small improvements. Like others have said one baby step at a time. When my husband was diagnosed the literature said about a 2 yr survival. He made it six. Buying time is what it is all about. I hope you and your wife can buy many years. Fay

micgrace
Posts: 131
Joined: May 2011

I have been made to realise by all here that I am not alone in a desert going through a nightmare. She has good cognitive function. At least that survived the surgery and not a complaint from my wife. I would be whining like hell if it was me. Again thanks to everyone.

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