How are you coping with caregiving? Open ongoing thoughts.

1474 Posts | Page(s): 1 2 3 4 5 ...147148 Next 

How are you coping with caregiving? Open ongoing thoughts.

by CaregiverPete on Tue Feb 21, 2017 10:34 AM

Quote | Reply
I'm Pete. 
Caregiver to my wife. 
This topic I started is all about caregivers. These are posts about our daily dose of encouraging hope and the unpromising challenges we go through to care for family members and friends. 

Caregivers need support during all stages of cancer. Support for caregivers is sometimes needed to continue even after cancer is gone in one form or another. Let's support each other during these times that change our minds and our lives forever.

Together lets try to heal that small part of us that won't return. We just need to find that person inside us that we're comfortable with, that comes close to who we once were before our lives were turned upside down. 
Caregivers please say or shout what you need to here. This is your place. Tell a pleasant uplifting story or vent your painful frustrations or sorrows.
Be well for today.
Peace to all of you for tomorrow.
 

RE: How are you coping with caregiving? Open ongoing thoughts.

by CaregiverPete on Tue Feb 21, 2017 11:08 AM

Quote | Reply

January this year. My wife and I went to Mexico to take a vacation from 2 years and 3 months of breast and lung cancer Hell. When she had her swim suit on I noticed a lump the size of a penny just above her implant from the mastectomy. I was alarmed.  Talk about tension when your on vacation. 

Three days after coming home we saw the reconstruction surgeon. The Dr blew it off, he said looks like scar tissue,  nothing to be concerned about.  "I'm concerned "

We saw the mastectomy surgeon and she wasn't sure what it was. She said we could do a Ultrasound if you want.

My wife didn't look concerned or urgent to get the ultrasound. I started to see red, I said, "I want the ultrasound!" 

Am I the only one freaking out. I guess so. So today 2-21-17 we are getting the ultrasound.  Fingers crossed. I'm really looking forward to it being nothing. 

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ahole on Wed Feb 22, 2017 09:43 PM

Quote | Reply

Please excuse my username.  I'm really not an ahole, but feel like one a lot of the time.  I'm the one who doesn't have cancer.  My husband is the one who has had head and neck cancer for 3 years.  Ironically, when you said your wife has a lump the size of a penny, that's exactly what popped up on my husband after enjoying a respite from this disease for almost a year.  His doctor said, "It's probably inflammation."  Like your wife, my husband is not concerned.  I'm concerned, and my fingers are crossed......for us and for you.  We don't go in until March 6.  My best to you.

RE: How are you coping with caregiving? Open ongoing thoughts.

by Kpete on Wed Feb 22, 2017 10:33 PM

Quote | Reply

I am caregiver to my husband, 72, with Stage 4 brain cancer, currently being treated with Avastin after having radiation and Temodar (which didn't work.)  Tumor has shrunk, which is great news.   He is fairly mobile and can do most things, but has a short term memory problem.  Recently he had a severe nosebleed, which resulted in his being hospitalized due to his losing a third of his blood volume. Now he is weaker than usual, of course, but very frustrated with the speed of recovery.  I had just received a stress fracture to my foot before his hospitalization for blood loss, and am in a boot.  Just found out today that I may need surgery, and if not that, a cast on my foot.  Luckily it's on my left foot,  so I can still drive him to his infusions and doctor appointments!   To top it off, my brother passed away two weeks ago from kidney cancer.  So, I'm looking for help cleaning the house, and someone to just listen to me cry for awhile.  I love my husband, and he is generally patient with his illness, but when the stress gets to him, he blows, and I'm the one nearby.  I hate to see him so angry with life at this point, and nothing I say can calm him.   So all in all, it stinks being a caregiver.  I cope by taking one day at a time and tackling problems one step at a time.  And going out to dinner when I can't possibly cook one more healthy meal!  Hang in there, everyone!

RE: How are you coping with caregiving? Open ongoing thoughts.

by CaregiverPete on Thu Feb 23, 2017 01:52 PM

Quote | Reply

On Feb 22, 2017 9:43 PM Ahole wrote:

Please excuse my username.  I'm really not an ahole, but feel like one a lot of the time.  I'm the one who doesn't have cancer.  My husband is the one who has had head and neck cancer for 3 years.  Ironically, when you said your wife has a lump the size of a penny, that's exactly what popped up on my husband after enjoying a respite from this disease for almost a year.  His doctor said, "It's probably inflammation."  Like your wife, my husband is not concerned.  I'm concerned, and my fingers are crossed......for us and for you.  We don't go in until March 6.  My best to you.


Hi. A.
Thank you for your post and reaching out to me. I really need people like you to communicate with that understand what's happening to us as caregivers in the community. 
The ultrasound my wife had was done and the lump showed the same characteristics of a cancer.  The doctor read the imaging and said it is probably fat necrosis. I gave him a look of distrust.  My wife could tell I was about to say something I would regret.
My wife then saw to defuse the situation and asked for a biopsy.  The doctor said that he would put the order in for one. There was still alot of tension in the room. The staff left and I emotionally broke down inside.  I thought I would be relieved but I wasn't.  
I'm very glad that my wife spoke up and saved my comment that was in one breath from coming out. 
As we walked outside back to our vehicle from the hospital my wife asked. What were you going to say. 
I paused. 
You really want to know hun?
I was going to say to the doctor  (jokingly smile with an edgy intimidating glare) " If in 3 months from now this lump turns out to be full blown cancer?........can I come back and kill you then, like you killed her"? 
My wife was relieved to have had the intervention before me having the opportunity to say something. I know better than to say that...... but at my unstable mind at that very second would have yielded a very bad situation. 
Thank you Ah*l*,  but from now on I would really like to refer to you as Ahelpingheart. You give me strength in your positive closing remarks to my wife and me. I too wish you well. Remember that your husband would not be where he is today if he didn't have you in his life. My wife told me that she would be dead by now if she didn't have me.
Buried alone....or...ashes thrown without her only Pete by her side.......
Please keep in touch.....
Pete.

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ahole on Thu Feb 23, 2017 10:52 PM

Quote | Reply

You know, Pete, I sometimes wonder if my husbands seeming lack of concern and his jokes are his way of coping with his fear.  Yesterday he told me that Bella says the new lump is not cancer.  Bella is our Golden Retriever who very urgently sniffed the last neck tumor.  She is either getting used to it like we are, or her nose found nothing to get excited about.  I just told him that's good news, and left it at that.  I'm like you, I worry and I freak out and it's usually me interrogating the doctors.  But we've been doing this so long that part of me has relaxed into realizing that this is not my battle; it's his.  I'm just a bystander, although he has remarked to me, too, that I'm the reason he's still alive.

I realized today as I made yet another creative milkshake, that I automatically know how many calories he has taken in any given day without even stopping to calculate.  My husband has already been "killed" once by a doctor who thought a CT could wait because he was doing so well.  The cancer came back with a vengeance during that short time.  You just never know.  It's such a sordid little dance that everyone does.

Thank you for renaming me. :)  Pete, we caregivers have to stick together in this. Please let me know how the biopsy goes, and I will keep you posted too.  - Patty

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ahole on Thu Feb 23, 2017 11:03 PM

Quote | Reply

I can sure relate to what you say. Sometimes I think if I have to think of another meal to cook I'm going to take a sledgehammer to the kitchen and be done with it. My husband is 75, has Stage 3 Head and Neck cancer, and he gets testy from time to time. I try to remind myself that it's not him yelling at me.....it's the disease.  Sometimes that works and sometimes I lose it.  Depends on the day.

My heart goes out to you because I unexpectedly lost my older sister this last September. I did a lot of yelling at the universe and crying in the shower.  How dare something else bad happen when I had enough to cope with?  But life keeps going, complete with all its warts. Nothing stands still just because you're trying to help someone battle cancer.

I'm so happy to hear you are asking for help. I'm not very good at that.  If you can get out once in a while, that's great.  One of the biggest things I've realized lately is that this is not my battle and it's not my cancer, and I have to take good care of ME and find things to look forward to.  You hang in there, too, and peek your head up once in a while.

RE: How are you coping with caregiving? Open ongoing thoughts.

by tfruman on Fri Feb 24, 2017 12:37 PM

Quote | Reply

I've been a full-time caregiver to my wife for 14 months now with no end in sight. The situation has changed several times over the last year so answering the question would be different depending on when it is asked and answered. At this point, she is cancer free and in recovery mode so life is a good bit easier but there have been several points where I was barely holding it together. There were at least four times last year when she might have died but we managed to pull a rabbit out of the hat each time. My wife has ovarian cancer which isn't the worst in long term survivability but is not good. Apparently she has a rarer form which means treatment techniques are more of a guess beyond the basic "cut and gut" as she likes to call it. Two months after her initial surgery it was discovered that it had matastisized to her lungs. We stepped into the chemo phase of treatment. Then a couple of months later it was determined it had also lodged in her brain (five distinct tumors). The long term survival rate goes way down at this point. She also developed complications along the way. At one point one of our doctors actually said, "it was nice knowing you" after a consultation. I know he did not mean it the way it came out but there was no doubt to us that in the entire team of doctors not one thought she would see the end of the year. I put all this in to emphasize it was not a cake walk. 

During the last year I have had to negotiate with doctors and PAs, track insurers, challenge provider billings, navigate FMLA, COBRA, Disability and Medicare, research treatments and care, treat open wounds, administer lots of medications, physically manage an invalid, cook, clean, empty bed pans, and always be there physically, mentally and emotionally. I sometimes joke I've become a stay-at-home, single mom. There were times I was so physically and mentally exhausted, friends and family had to intervene, but I still had to have her see me as strong and in control. I have cried often, usually quietly and alone. There were periods when I could hardly get a few hours sleep all night. We've spent months together in our home, only going out to see doctors or to get some treatment (I think there are five movies on Netflix I haven't seen at this point). 

But if this post is to give others something to help them along the way, you must be 'all-in' if you want to help your partner. You have to realize life has changed and cannot fall into the trap of 'only-if'. Don't fret for what has been given up, stay focused on what you still have.

My first suggestion is one that I used over and over again with my wife:

1) Focus on the problem in front of you - If you start looking too far down the road at all the what-if's and might-be's, you will overwhelm yourself. There are many things to learn and address when dealing with cancer, but stay focused. Be aggressive in dealing with things that come up but line them up as much as you can and deal with them one at at time.

2) Stay committed to the best possible outcome - Sure, realism has to enter into the situation, but remember, even if the stats say only 1 in a hundred survive after 5 years, someone survived so why can't it be you. Follow the plan of treatment, use your insurance effectively, get help from friends and families. Be positively selfish.

3) Do the paperwork - Keep detailed notes on every doctor discussion, track progress and details as much as possible, keep up with insurance filings and billings. Keep a list of medications, every doctor will want to see it and validate. Be diligent with billings, they make a lot of mistakes (I could provide volumes on this alone). Keep a handy list of each doctor's contact information. Get an easy to use calendar and use a pencil (I actually went to Google Calendar which made life infinitely better since I could access it easily from many devices). 

4) Know your limits, both of you - There are limits to anyone's capabilities and here is where patience and perseverence come into play. While we constantly advocated for aggressive treatment plans, we did everything we could to eliminate any other responsibilities to keep the stress down at home. Pace yourselves and find the path that fits your ability. As someone else said to me, "It's a marathon, not a sprint."

I will wrap this up by saying for us it has been the worst of times, and the best of times. We have struggled through the treatments but have enjoyed our time together, loving each other and caring for each other. There have been some fierce times, agonizing times and times we both felt despondant, but we always came back to each other and our desire to come out the other end as best as we could.

RE: How are you coping with caregiving? Open ongoing thoughts.

by CaregiverPete on Fri Feb 24, 2017 02:08 PM

Quote | Reply

On Feb 22, 2017 10:33 PM Kpete wrote:

I am caregiver to my husband, 72, with Stage 4 brain cancer, currently being treated with Avastin after having radiation and Temodar (which didn't work.)  Tumor has shrunk, which is great news.   He is fairly mobile and can do most things, but has a short term memory problem.  Recently he had a severe nosebleed, which resulted in his being hospitalized due to his losing a third of his blood volume. Now he is weaker than usual, of course, but very frustrated with the speed of recovery.  I had just received a stress fracture to my foot before his hospitalization for blood loss, and am in a boot.  Just found out today that I may need surgery, and if not that, a cast on my foot.  Luckily it's on my left foot,  so I can still drive him to his infusions and doctor appointments!   To top it off, my brother passed away two weeks ago from kidney cancer.  So, I'm looking for help cleaning the house, and someone to just listen to me cry for awhile.  I love my husband, and he is generally patient with his illness, but when the stress gets to him, he blows, and I'm the one nearby.  I hate to see him so angry with life at this point, and nothing I say can calm him.   So all in all, it stinks being a caregiver.  I cope by taking one day at a time and tackling problems one step at a time.  And going out to dinner when I can't possibly cook one more healthy meal!  Hang in there, everyone!

Hi Kpete 
Ouch with your foot. My wife had one before her having cancer. It was so painful for her. I hope you can have a speedy surgery and get mobility back soon. I know your not going to let a cast slow you down.
My sincere condolences go to you for your brother. 
Talk about adding more stress to your life on top of a stress fracture. Good job with dealing with it Kpete.  It's all we can do is suck up the pain and get past it...to the next challenge. 
I hope someone soon can see that you need desperate help in the physical condition your in. If you were my neighbor I'd be helping you with more than house cleaning. I'd get some groceries done too. Put me to work!  Unfortunately I'm not there for you. I hope friends and family come to your aid pretty darn quick.  Make some calls Kpete. Tell those people you need them like yesterday!
I know when you cry. I'm crying too. I cry all the time about losing my wife someday soon. A beautiful song, a beautiful sunset always brings me to tears.  When you cry , I'm crying with you.
Kpete don't let your husband stress out on you. You both have cancer. He has it physically.  You have it mentally and physically through being exhausted all the time. If he has these stressed out angry tantrums, you have every right as a wife and as a women to give him some of his crap right back to him. Shout back, slam a door, break a glass  in the sink, grab a head of lettuce from the refrigerator and throw  it against the wall so he can hear or see it. Do something!
Let him know when he treats you poorly this behavior can happen from you. 
You are a strong woman that has the wieght of your husband and the house hold on her shoulders. Tell him you understand that he's in pain, but you deserve dignity and respect at ALL times. You love him. Demand his love back. 
I'd treat you to a caregiver dinner if I could. 
Get those friends and family to help! 
Tell that loving husband of yours to treat you like a loving wife!
Be well Kpete....

RE: How are you coping with caregiving? Open ongoing thoughts.

by Ahole on Fri Feb 24, 2017 09:43 PM

Quote | Reply

Tfruman, I was very touched by your post.  There is a peace in your words that spoke to me in a very kind and comforting way.  Clearly you are a veteran on this journey just like I am in caring for my husband with head and neck cancer for almost 3 years.  Our situation has changed many times and the emotional roller coast is hard to bear.  But you give good, common sense advice that I wish I had heard in the beginning. If you can ground yourself in the nuts and bolts of caregiving, you have very little time to dwell on possible outcomes hanging out there in the future.

I had to smile when you said the doctor told your wife it was nice knowing her. My husbands oncologist said, "You look pretty good for a ticking time bomb."  It's just a reminder that doctors are people too. We have a great relationship with this genius in white and nothing he could say can shock us anymore.  My husband is a realist and he didn't flinch. I dutifully wrote the remark in my handy-dandy notebook as yet another piece of information.

Bless you for what you do every day and the love that you do it with. Your steadfast commitment to your wife and the journey you find yourselves on is a beautiful testament to the partnership of marriage.   I have no doubt you will both find healing no matter what. - Patty

1474 Posts | Page(s): 1 2 3 4 5 ...147148 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.