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fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Good Morning,

Many here are the caregivers for those of us battling this beast. They are the voice of the individual going through this journey. My thoughts and prayers are with them all and I cannot even begin to imagine what it is like for them to see their loved one go through this ordeal. Moreso, facing the fact that their loved may indeed lose the battle is again, unimaginable. 

For those of us fortunate enough to have a caregiver, it brings emotions, worries, thoughts and concerns that are also hard to imagine. I'm very blessed in that after all these years, I've found my life partner. We met two years ago and she is the best thing that has ever happened to me in my life. We've been together now for 18 months. She was with me by my side when I suffered my 2nd heart attack. We take care of each other selflessly and without reservation. For those that believe in soul mates, I know she is that for me.

Things were going so well and now this! The heart attack last October was a small bump in the road compared to dealing with cancer. It's funny, but I'm not so concerned with myself as I am with my loved ones. Having survived two heart attacks that would have taken most, I'm quite familiar with my own mortality. My faith and my experience has given me insight and a comfort many others may not have. 

I visited the caregiver thread and have read other posts from caregivers and it just makes this entire ordeal more difficult to handle. Many times, cancer is indiscriminate but being that I was a smoker, I know why I have this and that adds to the difficulty. My partner is a very strong woman but I'm afraid for her. I SO don't want her to see me get so sick. It's not a pride thing either. Having lost family and friends to cancer, I know what it was like for me. Having family that has undergone treatment (my brother-in-law and step sister), I know what it was like for them and their caregivers.

So... how do I, as the one with cancer, help my partner and caregiver go through this? I love her dearly and let her know in my words and actions and will continue to do so throughout this roller coaster ride but what else can I do to make sure she takes care of herself? She has joined the site but has not read nor spent any time here. Perhaps it's denial or fear or both and more, I don't know. I just want to make sure she has the support. My sister and a friend who's partner has recently dealt with H&N cancer have been in contact and I know that will help but I would appreciate any advice on what I can do personally to make this easier once the ride starts.

"T"

 

 

 

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

says to me that you want to make this easier on her than it has been on some other caregivers.  I think the number one thing emotionally, is taking the fact that a person has cancer out on their caregiver.  Anger and being a bad patient seems to take their toll on those who care for us, more than anything else.  It's hard enough to make sure that we are hydrated and fed, without us fighting them every step of the way because we're in pain....With my husband I was very concious of the fact that I could control my moods....and tho I might not be very talkative at times, I bit my tongue and held off in those moments I was tempted to snap at him....knowing that feeling would pass.

Also....I made sure he got out of here on his own....often.  Got a chance to get out of the "cancer ward" and do his own things.  Getting breaks from caretaking are good for the other person's soul.  If you have friends or family to help out, that is good, too.  My sisters helped by bringing in meals, and taking me to radiation a few times....just small things, but they gave Greg a break.

p

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Phrannie,

Thank you for your reply and advice. I'm Ok with the anger issue. I'm angry at "Jack" for messing things up but I'm not angry that I actually have cancer if that makes sense. I can't take back the 35 years of tobacco use. As crazy as it sounds, I still have the urge to light up a big 'ol fat stogie and pour a healthy snifter of cognac or bourbon, especially when the stress starts getting to me.

When I had my tonsillectomy (and biopsies), the pain was awful (I've been told the rads are worse). I was medicated 24/7 for well over a week. When I would be in such pain, all I wanted was to be left alone until the meds kicked in. I know Marcia felt helpless but she soon realized it was best to leave me alone for a bit. As far as eating? Marcia is a wonderful cook. Being from Ecuador, I've had the priviledge to try homemade dishes that otherwise I never would have tried. Eating together is something we truly enjoy. I'm going to miss that as is she I'm sure.

I will gently encourage her to vist the site and read. It's not always pleasent but it's honest and informative....

"T"

 

Laralyn's picture
Laralyn
Posts: 436
Joined: Apr 2012

My boyfriend of 11 years was my caregiver during treatments. Yes, it is really rough on the caregiver but there are bright moments too. The best advice I can give is to give your caregiver permission to do normal things. You may have to insist. There are two factors at work here: worry and guilt. The caregiver worries that something will happen if he/she isn't there, even if the treatment is unpleasant but not dangerous. The caregiver also feels guilty for all kinds of normal life things, because you can't or shouldn't do them.

So encourage or insist that your caregiver get out of the house. If you get sick enough to need someone there all the time, as a friend or family member to take a few turns so your caregiver gets a break. Tell her to go to a movie, go shopping with friends, or whatever will help her reconnect with a normal life. Tell her to go have a big steak dinner even though you won't be there to share it with her. Tell her it's OK to keep eating normal foods or, if you can't stand the smell because you're nauseus (which happened to me), go in the bedroom so she can eat something hot. 

If she's anything like my boyfriend, she won't even mention any of this. She'll just take care of you and not take the time to take care of herself. So remind her and insist! If it helps, enlist friends and family--ask them to invite her out and not take no for an answer. :-)

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Laralyn,

Yes... encouraging her to get out and about will be good for her soul. Marcia is an artist and loves to paint and create things. Allowing her time to do those activities is essential. She does a lot of that now and I don't want that to suffer because of me. In fact, she knitted two wool hats (one to keep my bald head warm ~lol~) in the car while traveling this weekend!

Since I haven't been eating that much over the last few months, she has taken to not eating much herself and that's not good. So as much as she'll be on me to eat, I'll have to be on her to eat! Perhaps good old fashioned bribing will work. "I'll drink this protein shake if you cook dinner for yourself and eat it" ;)~

"T"

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

T,

still fresh in the thick of things here as a caretaker and haven't yet had the opportunity to get back to work or experience much normal yet... And my husband and I have only been married 2 years, and due to the seasons, holidays and virus' out there, we chose not to except much help.. But we did have one special couple that was there to help me when things went awry.  Here are my thoughts...

Phrannie's spot on (she's always lightened my days) -- be a cooperative patient. Each of us has had our own experiences, and we bring them to the table, as you said she was wonderful with your heart attacks. There are days that no matter how hard she tries to imagine  your treatments or pain, she can be empathetic, but you will be right, she can't know.. Try not to blurt that out at difficult moments. Nothing bothered me as much as not being able to make it better.

I am writing today in my caring bridge site, the answer to how I did it.. My side.. And it's two things, one - it wasn't about me. That mind set in my mind, kept me sane and kept more compassion, rather than thinking it's was too bad the windows on the 17th floor wouldn't open, so I could toss him out. It was all about his way of fighting, his needs, what ever worked in the moment, flexibility is now my second name. His occasional rudeness was overlooked, this wasn't my husband talking, it was cancer... Cancer dying, and not liking it! 

The other, unconditional love, fighting my own battle with his cancer by managing his care. If there was a tool, a lotion, a prescription,  a suction pump, etc. I found it, and he'd have it, if the doctors weren't managing him well, I made sure they "caught on" quick.. They now refer to me as a very nice woman who wants what she wants. I am not pushy if they were doing their part. My husband let me me manage his care. But I loved him, no matter what.. That was the greatest thing I knew I could do.. I know he's in there somewhere, and when all these side effects wane, I know he'll come out smiling, and be things will be back to our new normal. I guess the best way to say it is make her part of the team. But when you have a good moment, share that with her.. Let her know how you are feeling, what's changing, let her manage the information and spend energy on people, while you use your energy to fight the cancer.. And say thank you at least once a day... 

The one thing my husband and I did a lot which gave me hope and some relief .. We'd talk about a vacation we want to take.. Cruise? Europe? Camping? Disney?  We'd just talk about it.. It gave us a common celebration and goal To focus on.. It was a distraction for him and myself.

so, be cooperative if at all possible; let her in and give her some jobs, she wants to fight too; let her love you, and when you're up to it? Do something really nice together... Heal together too.

good luck, I bet you are going to do very well in this together,

Kari

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

jumped in here, because I know you're still right in the middle of caring for your husband and everything is still fresh in your memory.

When I first learned I was sick, I went to my sisters and started getting things lined out....me thinking Greg would be relieved that he wouldn't have to be the main person caring for me.  I was WRONG....he was hurt, not relieved.  I'd totally forgotten that part of my story till you brought up letting the caretaker DO the caretaking.  Greg did wonderfully as the main person in charge of my care.  He actually had kinda of a personality change....he quit being his cranky self, and let his compassionate side shine thru....LOL. 

Another thing you hit on....we also planned a trip during my treatment....we talked a LOT about that....it gave us something to look forward to, and guess what?  We're actually going to do it!! Laughing 

I just asked Greg what was the hardest part of being my caretaker.....at first he said "You were pretty easy, but having to be nice all the time was hard"...LOLOLOLOL.....we laughed about that.  Then he said "the secret of getting thru this together is living one day at a time.  Not jumping out in the future....living it one minute at a time if that's what it takes.  And learning that skill was the hardest part"....

p

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Kari,

Thank you for taking the time to be so compassionate and insightful from the caregivers perspective. We had a chance to get away for a few days this Summer to the mountains. We had wanted to rent a beach house but time and finances ruled that out. Yes, a vacation at the beach next summer is a realistic goal and one I will start talking about. I know that will make her very happy :)

The helplessness is definitely difficult. I recall vividly to this day when my children were little and took ill. Arrrggg! It tore me up!

When she's ready, I'll have her read your post.

Thank you again.

"T"

 

Vee1
Posts: 59
Joined: Nov 2012

to my 94 year old dad.  And previously, to my husband of 14 years who lost his fight with cancer at the age of 39 (adenocarcinoma of an unknown primary with metastisis to the bones), and previously to my close friend who had prostate cancer at 50 years old (died from heart problems 13  years later)...  I get the role of caregiver pretty well. 

You ask an interesting question...how do you help your partner be your caregiver through this?  I guess for me it was when I asked my dad if he could do three things for me...eat as much as you can even though you don't want to, swallow, and exercise your neck.  It isn't easy, but when I see he is giving it all  his best effort, then that is all I can ask.

It was funny...I didn't think I had it in me to be a caregiver again (especially with cancer), but I guess I can.  It is hard to see him weaker and tired, but I keep reminding myself it is going to get worse before getting better and that has to be okay.  I also remind myself I had nothing "big" planned for the next half year so I might as well spend it killing the beast (did I mention how I hate this disease???). 

As a thought, if you printed your post out and let her read it, it might open the door for a bit of conversation?  And, just as a friendly reminder, when on a plane, we are instructed to put our own oxygen masks on before helping the person next to us. If I am not well then I can't be of help to my dad.

My oxygen mask goes on first.

Hope this helps and thanks for listening...

-V 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Your attention to the front of the cabin please......

Hi V,

My goodness you've endured a lot! Your experience and words of wisdom are much appreciated. I love the anology of the oxygen mask. That makes so much sense. Also, short term goals as opposed to grandious long term goals I believe must become the norm.

I will do my part no matter the difficulty. As I've stated in previous posts, I'm angry at "Jack" for intruding into my life. It's my goal to eradicate him no matter what I have to do, even if it means a dose of pain meds just to swallow. That's what I did after the tonsillectomy for almost 2 weeks!

"T"

 

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

My wife was, and still is, my caretaker.  I owe her my life for some of the decisions she made for me during treatments.  In some ways this is harder on the caretaker than it is on the patient.  We (patients) always know how we are feeling at any point in time, and often know what we need--whether that's food, water, rest, or just be left alone and not doted over.  I made a deal with my wife that I would answer every question she asked with 100% honesty, so that she would not have to read between the lines and wonder what's really going on with me.  Not knowing leads to more questions and more worrying.  Neither are good things.

I made a deal with myself that I would be the best patient my wife and doctors could hope for, so that they could help fight my disease with me, not in spite of me.

So, sit down with your caretaker, put all of the cards on the table, and agree to some basic deals about how both of you are going to get both of you through this--not just you as the patient.  And, I would do that sooner, not later.  You'll make better deals with a more level head than you will just to cope with things when it gets difficult--and it will

My wife and I had a great relationship before I got sick.  Our love become even stronger because of this shared battle.  That's one of several silver linings we have found in this very dark cloud of a disease.

 

mike

 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Mike,

Great suggestion and one that we've already spoken about. Marcia is always concerned that I get enough to eat. Many times, since this whole thing started I just wasn't hungry She would ask and I'd say "no thank you" and then she would ask again and I would repeat "no thank you baby" and then the third time whan I would say "baby, I love you but I'm Ok...really" sometimes with a bit of agitation in my voice :) 

She's aware that eating will be difficult but I made a deal with her. I will force myself to eat and drink, whatever it is if she will ask me no more than once (maybe twice) ~lol~ 

"T"

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

T,

 

Good info above, real good.

 

Be honest about how you are doing (tough guys use pain meds too).  You are going to encounter a number of rough patches, so choose your battles wisely.

 

Example:  If you chose to go without feeding tube, then know you will spend hours consumed with eating, (maybe with lots of pain, maybe with none).  Of course a feeding tube doesn’t guarantee eating comfort either.

 

You have to take some of the responsibility yourself.  The caregiver can only recommend swallowing, swallowing, swallowing.  You have to do it.  I made my self drink lots and lots of water (this site (Skiffen16) had me scared to quit swallowing).  The price to pay up front was having to go pee a lot and often (big deal).  In the long run I’ve never had a terrible issue with swallowing.  Believe me my throat and swallowing is nothing like pre-treatment, but livable.

 

The same can be said for all side effects issues (mucus, nausea, pain, etc..).  You won’t feel good, but you have to help yourself too.

 

I wasn’t much of a complainer I was more a sleeper.

 

One side note, prepare the caregiver to hear some disgusting and some times scary choking, spitting, coughing, dry heaves.  It can be very unsettling, but what the heck, it is cancer and you have to fight to get rid of it.

 

You seem ready for this ride, it is not fun for anybody, you rarely have as much control as you think you will, but I wish you the smoothest ride you can squeeze out of this journey.

 

Finally, during my Erbitux infusions my wife would on occasion slip away for a bite to eat or an estate sale (all I wanted to do was sleep).

 

Best,

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Matt,

Ever since I can remember, I loved to sleep. As a full time musician, I lived the life of up all night into the wee hours of the morning and sleep till Noon only to lather, rinse and repeat for months on end on tour. Now, I look forward to Fridays and turn off my alarm lest I forget to do so Friday night and be unduly awakened Saturday morning. Even our cat Socrates knows the routine and doesn't bother Daddy on the weekends ;) 

Being that I will be taking a medical leave from work to seek treatment in Baltimore, I'll take advantage of nap times as much as I need to. After my tonsillectomy, I would take my pain meds and settle in to play some online poker or watch a movie and promptly pass out! ~lol~ 

I'm well aware of the swallowing and as it's my intention to eat (and taste) the foods I love sooner after treatment rather than later. I fully intend to exercise those muscles regardless. I'm not shy of taking meds to control it. I told the docs last week at Johns Hopkins to make sure they give me the good stuff and plenty of it! They laughed and assured me I wouldn't be hurting for lack of meds. Hey, it's kind of a sucky way to catch a buzz but I'll take it! ;)

Fortunately (subjective term), my partner went through the tonsillectomy with me and that had it's moments of hacking, choking, gagging and the like. I know that will be fun... NOT!  I appreciate the positive thoughts and wishes. As I approach the starting line I'm realizing I am preparing for this. I've always approaced trying times in my life by expecting the worse and being really thankful when it wasn't as bad as I thought ;) 

"T"

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

I just don't know a diplomatic way of saying this.  My wife has been very supportive throughout this ordeal.  When I had my reoccurance a year ago, she pretty much assured me she would handle things.  Yet I was still functional, and able to care for myself.  Knowing as i do that failure of treatment would lead to eventual diminishment of my self-reliance and to the need for her to devote substantial time and effort to my care. Being dependent on her for financial health, I basically told her I wanted to care for myself so long as I was able.  That meant driving myself, getting myself to appointments and treatments, basically carrying on to the extent I was able, in order to free her up for important work.   I did  well enough with treatment I needed almost no assistance.  but it was very taxing on me, as it is on all of us going through process, and I didn't have much energy or emotion left over for her.  So it was my wife who became depressed, and it was my wife who needed help eventually.  A year later, she is much better, but it took time and some pharmacologic help to get there.  There really are several patients involved in these prolonged, arduous processes.  And all of them can suffer.  Just an observation.  I have no words of wisdom to offer otherwise.

 

Best.

 

Pat

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

As you all know I am still new, just diagnosed, and starting induction next week. My wife and I have been together over 30 years so we are one, even though we have our share of disagreements, we are as bonded as simese twins. That said, she digests this sort of thing quite differently than I and like you I care a lot about her health even more than mine as we have children, they are late teens so not kiddies). 

She is one to deny and view things through a peephole and she "ran" away from dealing with it which only builds up more and she acts out. Also hearing a word from the doctor CURE and she thinks I am going to be cured. "Maybe", but it is a long 5 year road to declare that word officially.

Her mother is still alive and dare I say more spry mentally than most half her age; she is 97! and does not miss a thing. I reached out to her to help with my wife as I know she listens to her and got her to get back to her doctor to get some medicines to assist her. General stuff like Ativan and other anti anxiety and depression meds. She is doing much better and able to cope with it all. So by all means do whatever you can to help your loved ones around you stay strong as well.

Don

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

The problem with peepholes is they limit your view. It's much easier to see the entire picture through an open window. Marcia is looking through the peephole as well at this point but I've opened the window and have been ever so gently nudging her toward it. She needs to see the storm clouds approaching and make sure she has her foul weather gear within reach. Preparation is essential is weathering the storm.

Her primary physician has advised her to conact her is she finds herself suffering from any signs of depression. I went through a period of depression after my heart surgery and did a course of anto depresants. Unfortunately, while they did take the edge off, the side effects were awful and I won't subject myself to that again. My 1st wife suffered from SDD and I know the signs all to well. Marcia is a strong woman but I'll keep a close watch on her for sure.  

Good luck on the treatment Don. Many prayers and positive thoughts for you and yours!

"T"

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Pat,

Your words strike a chord. Like the last chord in "A Day in the Life" by the Beatles. You're right. When it comes down to it, it's between God and myself. 

Having survived two heart attacks in the last 5 years relatively unscathed I have a pretty good grip on life and death. I'll share a bit of an interesting experience with you. In 2007, when the symptoms of a heart attack were coming on, I ended up driving myself to the hospital (I lived alone). It was about a 15 minute drive. I was in severe distress. Sweating, hard to breath, pain down my left arm rendering it useless, crushing pain in my chest etc.  

They say when you're facing death, your life flashes before your eyes. That wasn't the case with me and in retrospect I find it rather amusing. What was going through my mind was "Well this SUCKS!" Also, I was praying that I didn't pass out and crash and hurt someone else. Then the thought came to me... "Damn... I should have cleaned up my apartment! The place is a mess! THEN... I thought.. "Oh Man... I should have turned off my computer and emptied the cache!" ~lol~  

I adopted a life philsophy after that. It comes from Ecclesiastes. In the words of King Solomon (I paraphrase):

"Eat. Drink. Enjoy the word you do. Be thankful for the blessings God gives you in this life. Live, LOVE and seek out the things that bring your heart joy. The rest is meaningless, like chasing the wind" 

I take that to heart and intend on savoring every moment. 

"T"

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

the short version...

having read all the trials of caregivers on these boards...I've actually been thankful for never having had one. Wink nope, didn't want to put anybody through all the worry. I was grateful to the kid (he was 20 at the time) for driving me to my chemo sessions, but other than that...he was smart enough to leave me alone to sleep and take my meds.

you might find some info here:

Family Caregiving 101

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

You are a very thoughtful person to put Macia's feelings at the top of your list. I agree with seeing that she gets some "Marcia time". Most importantly, be honest with her.  Tell her how you feel, let her know if you are worried, if you don't want to talk, if you want to sleep, how much you appreciate her, how you look forward to enjoying those special meals together again.  Whatever you are feeling happy or sad, share it, you are in this journey together.

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

I truly apprciste all the thoughtful and honest answers. As I've been replying, Marcia was here with me and I read some of the responses to her. I encouraged her again to say hello. When she does I know she will be greeted with warmth and support. I did let her know I'm concerned about her and her well being. She needs to take care of herself in order to take care of me. 

Marcia (she is the one holding our boy Socrates on the Pets thread) has been through some very rough times in her life. Two major back surgeries without the support of anyone and having to raise her son on her own. Despite all the adversity, her faith in God is strong and she is one of the most optimistic positive people I've ever met. She has an almost childlike innocence in her approach to life. Something as simple a bird visiting our bird feeder in the back yard, a tiny flower blooming or the sunrise we saw on the way to Johns Hopkins makes her giddy with joy. I have to admit, her enthusiasm for life is contageous even when I'm not in the best of moods. 

I just hope I can meet her enthusiasm and positive attitude as I fight this beast within. I'm very encouraged at this point concerning my decision to seek treatment at Johns Hopkins. I got the call today and my surgery is scheduled for the 7th of February (just a few days shy of my 54th B Day...Happy Birthday to me eh?). It will be done with the DiVinci Robot. As much as I'm not looking forward to another surgery, I think it's pretty cool that it'll be a robot doing it and one of the best oncology Surgeons in the nation at the controls. 

Here's to getting that tumor out of me! Thank you again everyone. I'm very glad to have found you!

"T"

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Thanks for the link. I forwarded to my partner. With the exception of a very short (and in retrospect, big mistake) 2nd marriage, I've been on my own since 1999. I had become very self sufficient and used to being on my own. Now. since Marcia and I have been together, I can't imagine my life without her. I do hate the fact that I'm putting her through this but at the same time I'm thankful for her support and love. I just want to make it as easy as I possibly can for her. 

In the short time we've been together we've learned each others moods, quirks and the like. She's very good at giving me space when I need it and I do the same for her. Having taken the time while on my own to learn about myself, I know what triggers certain reactions and moods and have a pretty good handle on controlling them. I know that "Jack" will present challenges to that as well. Here's hoping I keep ahead of his shenanagins!

"T"

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