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messy thoughts

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

My boyfriend was one of those people who never even gets a cold. Now, in the space of 4 months, he has been hospitalized, undergone treatment for metastasized cancer, and on top of it somehow ended up with a detached retina, and has had 2 surgical procedures to repair it. He was doing really well with the cancer treatment, but the eye problem on top of it has knocked him for a loop, and I've never seen him so depressed and demoralized. Yesterday he had his second eye surgery and now has to keep his head face down, literally, for a week. He hardly slept last night. And when this is over, he goes right into chemotherapy. It's hard to know how to motivate him to keep his spirits up (or my own), when there doesn't seem anything to be positive about at the moment.

Mostly this post is just a venue for me to vent; I stayed home from work today to take him to the eye doctor and he dozed off on the sofa, leaving me alone with my messy thoughts. I'm also struggling with figuring out when to be on him about being compliant with doctor's instructions, and when to back off. I can see him now with his head tilted in the wrong position, but if I keep harping on it he will tune me out or get angry. If I don't, it drives me crazy knowing it could affect a full recovery.

I was also thinking of all of you who have multiple medical issues or are caring for someone who does; it's hard enough dealing with the cancer, much less than dealing with that on top of other issues. Neither of us ever imagined we'd be in this situation, but here we are. It takes a lot of inner strength and resources.

Thanks for listening!

Noellesmom
Posts: 1368
Joined: Aug 2010

Karenbeth,

You are struggling with many of the same issues we all are. Bless your heart. You seem to have a good handle on it and how it affects your lives.

It is your boyfriend's responsibility to follow the doctor's orders and unless he is so heavily medicated he can't remember to do so, you have to let him take the lead on this. On the other hand, if he IS heavily medicated, he won't remember you staying on top of him about it, anyway :)

Hugs to you. More people will be posting with the wonderful support they alway provide to each other.

wifflefrog
Posts: 32
Joined: Sep 2010

Its very difficult to stay motivated for both of you. I have a 9 month old child and my husband has metasis of his cancer. We occassionaly get in disagreements about how he should care for himself and sure you hate to be the nag. It changes everyday, so what works one day does not always work the next. So my suggestion be flexible & when available time for yourself no matter how you can do it.
Some of my techniques:
1. Let him know you care & love him thus why you are harping. Eventually he will understand and share with you his frustration as he does not want to be a burden.
2. Let him know it is his decision, but how he may feel if its done wrong. Walk away and when he realizes he can't do it alone, he will ask for help.
3. Just spend time with him and try to talk about other things. He is so very frustrated and he again hates being a burden. So treat him human & he will again let you know its tough.
4. Talk to him about your feelings. Pick the right time, but he needs to know its tough for you too and its okay to share that.
5. Also I just read somewhere that ask him "How it feels?" not "How he's feeling?" because of course he feels like crap, but maybe he can describe a bit more about what's going on.
Definitely good luck as its not an easy road and the caregiver gets beat up a lot, but don't put your feelings (messy or not) aside because they need to come out.

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

Thank you both for the suggestions and support. I felt better as soon as I wrote the post, just in getting my feelings out. Then my mom called, from an ambulance. Now I am worrying about him, and also caring for my mom with a broken kneecap. We did arrange for home care for her starting on Monday, so I can have a break. When it rains, it pours, and I am sure ready for some sunshine. Yeesh!

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

. . . . sometimes you pull out the board games and make your own fun! I am in no way trying to sound callous or insensitive. But in the middle of feeling like the boat you're in is sinking, you'll find that itty bitty ray of sun. I've heard for years "don't sweat the small stuff" or "stop and smell the roses.' Now is the time to put all of that into practice.

Perfect example: my bathroom is in a current state of kinda not clean like it should be. Eh, do it later. The mold colony isn't demanding health insurance yet. I exaggerate but you see what I mean. Finding humor in things that just are not funny helps me out quite a bit. I'm waiting for my hubby to get home to try and talk him into getting a tattoo on his neck that says "neck breather" as opposed to the med ID jewelry. Hey you're a neck breather for life now, why not make it easier for EMTs just in case? And don't give me the it might hurt excuse, buster, you are sleeved and went through surgery. a neck tat is a walk in the park now!

I imagine many not-sick, not-caregiver people would find my attitude appalling, but I hope I got you to crack a smile. Cancer totally blows, no way around it. But it's a good day today - he woke up and so did I!

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

mswijiknyc: yes, a sense of humor is essential and I am a fan of black humor in particular. We are not quite at the point of joking about the cancer yet, but we laugh where we can. And I did go out to dinner with friends from out of town, and drank two big lovely glasses of wine. And it's Sunday afternoon, and I made it through a weekend of taking care of my wonderful but patience-trying mom :)

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

while I don't always know the words to say and find somethings harder to say. I think you hit the nail on the head as my daddy would say.
I try to find humor in the smallest things and that is not easy.
Like your bathroom! I am O.C.D. and I clean as a stress relief. I have a very clean bath room! NOT. Somehow these days are getting where if it is clean a fairy came in at night. Cause you know where Zinnie is at night!
Greg is a couch potatoe always has been and I must say he is still doing a good job at what he always done best. Me not so much, I see dust bunnies all over the place in fact They do mulitply! I see two running under the bed pretty sure there will be four under that if I looked.
Oh well As I slowly reach for my comfort of my Debbie cake! and crumbs fall to the floor. I think I shoul clean them up but want to see if they will mulitply too!
My brain is scambled but looking back it always has been. So I figure maybe in what others call new normal , Most things are still the same. Just our way of thinking has changed. We have been to the Mountain but can we still climb it? Always up hill battle.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

LOL.....a "neck breather" tattoo....I love it. I'll suggest that to my husband also. After surgery and the following numbness combined with the fact that his neck is hard as a brick after so much radiation, he shouldn't feel a thing. :-)

Def need to make things easier and more OBVIOUS to the EMTs. The day after T-giving we had to call 911 'cause he couldn't breathe (turned out to be a huge mucous plug in his stoma). I had told the 911 operator that he was a total neck breather. I told the EMT that was writing down info that he was a total neck breather. then they decide to give him some oxygen and this young girl pulls out the air tube with the little nose clips, looks at the head EMT and says "should I hook it on his nose?". AARRGGHH! I repeated once more.....he's a total neck breather! We were warned that would happen but I didn't believe it.

anyway, I don't find the humor appalling. If we don't laugh at these things we start crying.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Karen, I so understand how you feel. I think my husband is the worst patient ever. I feel like I'm constantly walking that fine line of when to say something and when to keep my mouth shut. sometimes it feels like I want him to live more than he does. Wish I could give you better advice but I'm looking for it myself. But I know that sometimes it just helps to vent. I'm beginning to wonder if a punching bag would be useful. :-)
Debbie

3Mana
Posts: 829
Joined: Aug 2010

I know it's hard to be a caregiver, but since I lost my husband in March, I would give anything if I had him here right now. It is such a life changing time when you lose the love of your life.
So hope all of you who get frustrated, please don't. Just thank God that he's still with you.
Christmas is going to be very hard without him. "Carole"

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

Carole- will be thinking and praying for you over these next couple of days.

ketziah35
Posts: 1154
Joined: Jun 2010

My mom has colon cancer and my dad is being checked for lung. I find myself having messy thoughtd too, but when they come I try to meditate and daydream just for a few minutes. I call it a positive distraction. I go to a happy place. Like my new thing is to think of what I would do if I won the lottery. Now it is unhealthy to get stuck in a daydream, but. Just togo there for a few moments keeps me sane. It is free and time efficient. If you want some eye candy to get away when you can't get away try googling this resort-Jade Mountain. Just remember to come back towards the light in a few minutes lol.

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

Yes, that helps. It must be so hard dealing with both your parents being ill.

When I find anxiety and fear getting the best of me I try to remember to take deep breaths and remind myself to just let it go. It usually works, at least for the moment.

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