FOR ALL THE CAREGIVERS FEELING BLUE, STRESSED, OR MISUNDERSTOOD

Moonbeam864

Newlywed and feeling not alone anymore

Thanks for sharing Your story.  My husband and I dated for three years before he proposed. We are older and didn't see any reason to rush to get married. Six months after he proposed, he was diagnosed with stage 3 bladder cancer. We had are Catholic and had already completed the necessary marriage requirements for the church. We called the priest on Monday and were married the following Saturday with family by our sides. I couldn't let him take this journey alone. His adult kids have been great to help when needed. 

A month after we were married we found out he is stage 4. Managing the "emotional" journey is hard. I have found myself saying "He's doing ok" so I don't have to explain the fatigue, endless hiccup, nausea, etc. and the ultimate prognosis. I end up in tears, every time. Nothing is more comforting  to me than lying next to him at night listening to him gently snore. 

There is one younger woman who was a mutual friend and had introduced us. She wasn't setting us up, it was pure happenstanc. They have never been more than friends and she is 30 years younger than him.  Since we got married, She calls him to check on him weekly and never reaches out me. I have blocked her from seeing some Facebook posts because she'll see it and she will immediately call or text him. I find it direspectful. Am I being silly?

Many of his friends have reached out to both of us. My 98-year old Dad finally realized what the situation was when he saw my husband this past weekend. My Dad lives a couple hours away. I really think the issue is they don't see how he looks, how much weight he has lost, how he struggles after chemo, and how fatigued he is. He has nephrostomy tubes draining both kidneys. He has surgery every month to replace the tubes. They aren't around him daily to witness his struggle.  

I have 2 children, (one who is in middle school), I am self-employed running 2 businesses, managing my Dad's care and affairs, along with my husband's.  You definately learn who your friends are, and are not. You also make new friends or grow existing relationships with those who have been or are going through the same thing. I wouldn't change a thing. I love my husband and I believe that God brought us together for a purpose. It's my pleasure to help him through his journey. Its not always easy and I wouldn't do anything differently. 

Unfortunately, there aren't any local support groups, so thanks for letting me share our story. 

Option B

Laelo831 said:

Very excited that I found

Very excited that I found this group. I am 25 and am the sole caregiver of my mom, who has lung cancer and brain mets. Although I love being with her and helping her at her most vulnerable/weak state, it does take a toll on me. She sleeps most of the day, so I don't have much communication or bonding with her anymore. I spend most of my time in the house alone. She no longer walks, so I change diapers and bathe her in the bed. I have yet to find a way to get her to doctor appts now that she no longer walks (we have stairs). And it's just been a very stressful time. Most days I have alot of resentment toward her, because she smoked for 30+ years. In the back of my mind I just wish she had quit or never picked up the habit to begin with and her life wouldn't be declining from this horrible disease. Which then makes me feel very guilty and selfish. It's a never-ending cycle of emotions..but I am happy to be here and to be among others who may be experiencing similar things. 

It's very hard and it's time...

I can tell that even those good moments are so few that your mom would tell you it's time to call hospice.  She loves you and I know she wants you to have help. You can show her love by being kind to yourself and taking back some of your own life, so you don't have those negative feelings because you aren't drowning in the situation because hospice will be there.  They can take care of everything.  I hope this is an option for you and I'm sending prayers your way.

I am putting it off as far as possible but I've just started this journey.  My husband's bone mets pain is being controlled at this time, but he needs blood transfusions weekly.   Luckily, the doctor believes he has at least a year until we need to talk hospice.  But we are talking about both his wishes and needs and my own as well to prepare ourselves.  And it sucks to have to think about it.  But hospice is almost always needed.

Just remember, your mom knows how much you love her.

PrincessFiona60

Thank You

I was wondering as I was reading posts if I was going to lurk or participate.  After reading this wonderful post by Meowycat and the rest of the comments I decided to participate.

I have been Caregiver to my spouse for the last coupple of months. We start Chemo and Radiation for Bladder Cancer next Monday.  Yes, I said "We" this is my journey as much as it is his.  I also work full time as an RN in Long Term Care, so I am on this ride 24/7.  My Parents are helping with transportation to the daily radiation treatments, doing the run when I am at work.  I am so grateful for their help.

Mom has been cancer free for 11 years, so she and Dad are familiar with what needs to be done.

 

ClaCla

PrincessFiona

Wishing you and your husband best success with his bladder cancer treatments.  Broke my heart when I read your other post talking about eating alone in restaurants etc.  God bless.