Care to care for a caregiver? - Prostate Cancer C...

Prostate Cancer Caregivers

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Care to care for a caregiver?

Cateydid profile image
34 Replies

I feel pretty lost today, and could use a little TLC. Even if none of you can relate to this particular situation, me just making the time to ask for support feels good to me: like I'm doing what I deserve.

My Joe has not bounced back after ending chemo in December. (His second assault with chemo: 6 doses in 2017. 8 of prescribed 10 doses since June 2022)

Two weeks ago, while doing yard work, he took 3 falls. Suspected broken rib test was negative and corollary chest x-ray showed nothing. He still has nausea, swelling (mostly ankles and legs), shortness of breath, and real fatigue. He doesn't seem to be able to stay awake more than a very short time (2-4 hours) and then will sleep an equal amount.

Worst of all is his psyche. Today he said quietly that he's having more bad days than good: that he's tired: he just feels sick.......that he doesn't want to fight anymore.

I'm hopeful it's 'just a mood,' and does not portend our immediate future.

I do all I know to do, and I ask him always what he'd like me to do. The last few days have been hard because little seems to help.

Have any of you been here? If so, what helped you? I want to not be thinking I'm looking at the end of us, so could use your help. Please and thank you.

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Cateydid profile image
Cateydid
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34 Replies
Lrv44221 profile image
Lrv44221

hello cateydid

As a wife I know what you’ might be feeling

Trying to make a difference with your husband and his care can be hard with PCa

One thing I have found that helps me with my anxiety is to try to remove myself mentally from the situation if even for a short period

for me I take a soak I’m my bathtub, walking listening to music reading and writing. B maybe if you can find something that would relieve you from your situation might help

💜💜😀I’m here to listen/write if you’d like to vent

Cateydid profile image
Cateydid in reply toLrv44221

I find great relief in a long, hot soak 😊…..AND we don’t have a run: just a small shower😢.

I’m so happy I remembered this site today, as I was feeling at wits end….needing to share without fearing judgement. I felt much better having written the post. Then, having such thoughtful replies validates my feelings and lessens the burden. Thank you.

Lrv44221 profile image
Lrv44221 in reply toCateydid

good Saturday morning. Ty for writing back to me. Firstly I would like to let you know I’m so inept with any type of technology. I’m hoping this is private but I don’t know if it is. Lol I think it’s great to have a wife to share with because I have feelings about this that only another wife would understand. We have been married over 30 years. We live in Florida. All alone here no parents siblings or children so this is something that I really need and appreciate. I look forward to hearing back lol💜💜💜

Bethpage profile image
Bethpage in reply toLrv44221

Krv44221m, I'm in Vero Beach. I run a FB prostate cancer support group ONLY for wives/female spouses. My husband and I are all alone in FL as well.

Lrv44221 profile image
Lrv44221 in reply toBethpage

good for you only allowing wives and spouses to be able to use your group 💜

Lrv44221 profile image
Lrv44221 in reply toLrv44221

please share and vent to me as often as possible I really appreciate you 💜💜

Bethpage profile image
Bethpage in reply toLrv44221

It's the consensus of the entire membership. There are other groups that are mostly women but have decided to make a few exceptions. My membership has not changed its collective mind since 2015. Kind of a unique group. Only support, no drama, no arguing of any kind. I'm privileged.

Lrv44221 profile image
Lrv44221 in reply toBethpage

absolutely stunning and I agree. No drama just support 💜

Cateydid profile image
Cateydid in reply toCateydid

this was supposed to say we don’t have a tub😢

Lrv44221 profile image
Lrv44221 in reply toCateydid

oh I totally understood lol💜

Cateydid profile image
Cateydid in reply toLrv44221

I had saved enough money to have another bathroom added to our house….including a tub….but now feel I should save the money for travel and co-pays to see oncs at bigger, more advanced medical centers…

Lrv44221 profile image
Lrv44221 in reply toCateydid

To my dear friend Cateydid,

I just saw this reply from you cand I’m sorry it took me so long to see this. Remember I’m so poor with technology.

You know I have been in your situation about what should I do? A or B?

A good way of looking at what to do, at least for me , is to make a list of the pros on one side and the cons on the other and then it can help you see what you might want to do. Did this help you at all?💜💜💜

Cateydid profile image
Cateydid in reply toLrv44221

thank you

Lrv44221 profile image
Lrv44221 in reply toCateydid

hello again it’s raining here and I’m listening to oldies but goodies. I’m having a lazy day today what is going on with you guys?💜

Lyubov profile image
Lyubov

My dear, my heart goes out to you. My husband also is declining in various ways. It's such a struggle. I too am his sole caregiver. I do the best I can. I try to be as strong and then succumb to some king of relief time. Bless you!

Cateydid profile image
Cateydid in reply toLyubov

thank you the reminder…..

It’s like being on a plane….”attach your own oxygen mask first”.

I feel so grateful for this site: I’ve had no place where I felt safe sharing thes thoughts. Thank you again for responding. Know that it matters!

Loudlibrarian profile image
Loudlibrarian

I’m there right now too. You’re not alone in this although it does feel like it most days. I too care for my husband in decline. You say it so beautifully, the end of us. That’s what it is exactly. How can we imagine a future without them? What does the end look like? What else could I be doing? Over and over in my head. When they’re feeling low and tired of feeling like crap how do I make it right? I’m so incredibly grateful for Spring. I’m a gardener, so getting outside and working in the dirt helps me. May you find comfort in the beauty of the outdoors too. Be kind to yourself, women aren’t always great at that. ❤️

Cateydid profile image
Cateydid in reply toLoudlibrarian

thank you for your support!

I’ve been running or walking 5K every day since December 31st of 2022….and prepping to run a half-marathon with two of our kids next month. Plus, I have been outside in the yard as much as possible on the weekends when I’m not at work. Those tools of self-care have been great! AND I’ll keep looking for ways to keep my spirits up so I can share my peace with him.

Thanks so much for taking the time to reply. It goes a long way towards helping me feel not so alone.

erjlg3 profile image
erjlg3

Sending you both love and light Cateydid♥️

Avanat profile image
Avanat

Although my husband is stable right now, I have struggled too. I do several things that help me. I attend a Zoom support call for wives of husbands with Stage IV prostate cancer, I see a therapist and attend a weekly guided meditation class via Zoom. I had never done meditation before and I love it. I have learned to use the breathing techniques when I feel especially stressed and it helps. I also like to read. Getting into a good book can put you in another world for awhile.

What you said about putting on an oxygen mask first is so true. We can’t help our husbands if we don’t help ourselves. I’m now keeping up to date with my own doctor appointments and also trying to regularly exercise. I’m lucky to have some good friends that I can talk and sometimes cry with as well. Hang in there and know you are not alone. 💕

Fight11 profile image
Fight11

Sent you a dm

HikerWife profile image
HikerWife in reply toFight11

Hi - I'm sort of a newbie here - read a lot but rarely post. I noticed you dm'd Catydid - how do you do that? I didn't see an obvious way. Thanks for the help.

Bethpage profile image
Bethpage in reply toHikerWife

To DM, click on the name of the person to whom you wish to send a private message. When you're on that person's page, you'll see "Start chat" in blue on the right side of the page. Click "Start chat" and start typing. After you've composed your message, click "Send."

HikerWife profile image
HikerWife in reply toBethpage

Thanks for the tutorial! (you probably saved me a half hour of goofing around, lol)

Lrv44221 profile image
Lrv44221 in reply toHikerWife

I’m new here to and have not a clue how to use this site but thank goodness Beth told you. So I hope this comes to you privately I hav been married over 30 years and I love hearing how wives cope with this situation. My husband often says to me he’s tired of living like this and I don’t know what to say or do

Do any of you have any thoughts? Thank you so very much 💜💜

HikerWife profile image
HikerWife in reply toLrv44221

Anything you comment here, including replies, is not private!

Lrv44221 profile image
Lrv44221 in reply toHikerWife

okay TY

Bethpage profile image
Bethpage in reply toLrv44221

Lrv44221, in order to remain private, you have to use chat. On the other hand, the Health Unlocked platform is pretty darn hard to find.

Bethpage profile image
Bethpage

I'm a sole caregiver to my spouse who has both PCa and CLL. With 9 years behind me, I've made time to share my experience with other wives/female partners. It helps me to share. I learn, too, so it's a win-win.

Cateydid profile image
Cateydid in reply toBethpage

thanks, Bethpage. I’ve been hit-or-miss on these pages, it I feel drawn to do more….as I can…I’m the future. I’ll be glad to retire again😉

Bethpage profile image
Bethpage in reply toCateydid

Not so much of a hit-and-miss as I do recognize your name. :)

Yank66 profile image
Yank66

Hi there. I’m also the wife/ caregiver now 10 years in. So grateful for the time together, but bordering on burn out some days. Your husband may still be under the influence of his chemo treatments. That takes a while to recover. The whole caregiving thing can be so isolating. I have wonderful, supportive friends, but I don’t feel like I can totally open up to them about the difficulties. I meant “in sickness and in health”, but some days it is just hard to sustain in the long game. Hope you’re both having a better day today

Cateydid profile image
Cateydid in reply toYank66

bless you! His oncologist said he expected Joe to be ‘better’ given being 3 months post-chemo….when in fact, he’s feeling worse.

Today he agreed to take his anti-nausea meds, and has been better about staying on top of Tylenol and Aleve. He’s also eaten something today, so he appears to be feeling better.

Just a few moments ago told me he sometimes thinks he’s dying. His parents are talking to him; he’s having thoughts about people from his childhood. I know this will happen, and we can’t predict when, but I wish I knew if I should keep fighting for him or let him know peace.

I’m going to keep putting it in God’s hands!!!

And allowing you good people to support me.

Thank you

ellie2211 profile image
ellie2211

I don't have very good advice . Just reminders. Remember to eat on time and stay hydrated. It's easy to neglect the self. Also be kind to yourself.

Sending my best.

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