Proper Care of Your Caregiver

Abunai · January 2018

Warning: This is going to get pretty dark. Don't read beyond this point if you don't want a "downer".

Many of you know my history. I visited the doctor after many years of not visiting the doctor and was eventually found to have stage 4 RCC. As my disease has quickly progressed, I've suffered spinal cord compression, hip reconstruction, sciatic nerve injury, much bone deterioration in my lower skeleton, etc.

I quickly became dependent upon my wife as a caregiver.

I have a fear that as I grow less and less independent, I'll become less of a husband and more of a burden.

As my grandmother reached the end of her life, she was cared for by her daughter; my aunt. While they were both very friendly, outgoing, happy people, my aunt confided in me after my grandmother's death, in tears, that at times, she hated my grandmother. Although she loved her as a mother, she grew to think of her as her cross to bear.

I don't want this to happen in my relationship with my wife, but I'm afraid it's inevitable.

I know that there are a lot of caregivers on this site, people who've been caregivers in the past, and others, like me, receiving what will likely be end-of-life care.

How do I postpone the deterioration of our relationship and the transformation from a husband to a burden.

Steve.Adam · January 2018

Not really a downer

Hi Abunai,

Your situation is similar to what may occur in most people's lives. It's good to talk openly about such things.

You should probably talk to more carers. I don't blame your aunt for her feelings, and she stayed to the end, right? Love often involves sacrifices and your aunt only had bad feelings some of the time.

I guess the only carer who's opinion really counts is your wife. She must also be thinking about this.

People often do adapt to hard times.

Steve.

Canadian Sandy · January 2018

Bottom line is what kind of a

Bottom line is what kind of a person your wife is. I myself would not abandon a person dependant on me. It’s frustrating but prayer carries me on. I can’t do as much as I could before as I’m also a patient now but help with little things.

Wehavenotimeatall · January 2018

You are one special

guy to be so concerned about your wife

My heart goes out to you both

I don’t know how long your gma was ill but people under stress and grief often say things that might not be how they really feel

Caring for a very elderly person is demanding especially if the caregiver is not in the best of health or have busy stressful lives going on

but a husband and wife is different

your Life is her Life and vice versa

she will be there every second of every day because she wants to be.

Of course it is difficult but every night and every morning you get to pretend that your Life is just the way it always was and always will be

And you don’t need to even give it a second thought but it obviously upsetting you so try to get your wife to have breaks or extra help ..

that woman you love only wants to love you back... it’s hard on men when they are ill as they are no longer the strong brave one in the equation

Btw she will obviously be reading this so I wish you both the best

Annie

stub1969 · January 2018

First thought

Actually, when I was first diagnosed this was my first thought. The last thing any of us want is to be a burden to our loved ones. I really struggled with what to say so I showed your post to my caretaker after surgery--my wife Her first response was, "He sounds like a nice guy." My response, "Yep, he sure does." After giving it a couple minutes to think, she asked me to relay this message, "You have to trust your love. Trust that she knows how you feel." She also said, "Because of your love and trust, you have to allow yourself to be taken care of and not consume yourself with these thoughts. Your wife feels your pain as you go through this. She would do anything to take it away. You acknowledge her feelings by giving in to her help."

I hope this helps. My wife was very sincere with her message to you.

Stub

rhominator · January 2018

Important discussion

Thanks, Abunai for bringing up a difficult but important topic. And thanks stub1969 for sharing your wife's thoughtful, sincere response.

My wife has been steadfast and loving through my (our) ordeal. I thank the Lord for her.

AnnissaP · January 2018

I don't think this is

I don't think this is negative. I think it is realistic. How unselfish of you to even consider your wife!! I am sure a lot of ill people only think of themselves, therefore becoming a burden. Do you communicate this fear/concern to your wife? I am sure she will appreciate knowing you still care for her and your relationship very much.

APny · January 2018

I think husband-wife

I think husband-wife relationship is vastly different from mother-child. It doesn't matter how old you get your parent is still your parent, the one you relied on to nurture you. So when things are turned around and your parent depends on you, it does something to you, even on an unconscious level. So your aunt's feelings are totally understandable. But when people marry it's for better and worse, sickness and health, and as corny as that sounds, it's part of our wedding vows. We grow old together, we manage sickness and pain together, I think every one of us who hopes to live to old age together realizes that one or the other may become dependent on them. It's truly to your credit that you fear becoming a hardship for your wife but I really don't think you can compare your aunt's reaction to a parent to a wife or husband's reaction to the spouse. Definitely discuss this with your wife. Hugs to you!

foxhd · January 2018

Abunai,

We have more in common than many others. This trip is exhausting all our finances. I need help with most ADL. This drives me nuts as I look healthy and can walk for miles. Surviving can feel very selfish.

ImNotDeadYet · January 2018

I've been on the other side

I was my ex-wife's caregiver when she had breast cancer in the early 2000s. I remember a friend who made it a point that one night a week, we would arrange someone to be in the house with my ex, and he would pick me up and take me to dinner. I know my situation is light years different from yours. However, the point is, if possible, it would be good to find some way for her to regularly get some time for herself - even if it's a couple hours a week. I know from my very limited experience, that made a huge difference in the quality of care I was able to provide. I wish you and your wife all the best as you work through this trying and life-alterning situation.

Abunai · January 2018

Thank you all.

I appreciate all of the feedback and input, everyone.

You're all very supportive and a lot of the posts were very touching.

While my wife knows that I have a "group" on the Internet, she doesn't visit this site or read my posts. I did speek to her, about a week ago, about this subject. She was very sincere in saying she'd never grow to hate me. She actually seems to enjoy caring for me.

But, yeah, I don't want to become more of a burden than I am a husband. I've cared for my wife and family for over 30 years. Not comfortable with reversing the roles.

Again, thank you all for your input.

I didn't really intend for this thread to be totally about my situation, though. There have to be others, either caregivers or care-receivers that can chime in with their experiences or thoughts.

sandy23 · January 2018

As the Caregiver

I can tell you that your wife will never hate you. She knows that you are an amazing, caring, compassionate person. Every post that you write reminds us all of that!!

Let me ask you this, if the roles were reversed, would you resent her? Would you be angry or feel hatred toward her? You absolutely would NOT!! And that is exactly how she feels.

You mentioned that you didn't intend on this thread to be totally about your situation, so I thought I would go ahead and ask, if that's okay. My question is how does it feel to be on the other side of the care? My husband started to get frustrated with me after his surgery, and even now, when I would tell him "Don't lift that, it's too heavy" or "Maybe that pain is something to be concerned about". I know that I worry enough for everyone, but when does it go behind worry and become nagging or just being silly?

Abunai · January 2018

sandy23 said:
As the Caregiver
I can tell you that your wife will never hate you. She knows that you are an amazing, caring, compassionate person. Every post that you write reminds us all of that!!

Let me ask you this, if the roles were reversed, would you resent her? Would you be angry or feel hatred toward her? You absolutely would NOT!! And that is exactly how she feels.

You mentioned that you didn't intend on this thread to be totally about your situation, so I thought I would go ahead and ask, if that's okay. My question is how does it feel to be on the other side of the care? My husband started to get frustrated with me after his surgery, and even now, when I would tell him "Don't lift that, it's too heavy" or "Maybe that pain is something to be concerned about". I know that I worry enough for everyone, but when does it go behind worry and become nagging or just being silly?

I can tell you...

From my perspective, I still want to be as self sufficient as I was before cancer. It's tough to need help with lifting things, picking stuff up, etc.

I've always thought of it as a guy thing.

It's also tough for me (another guy thing) to admit when I'm in pain or to admit to the level of my pain.

My wife does call me out on these things. I've never seen it as nagging. I may be annoyed about the reminders of my limitations at the time, but I know it's because she cares.

Proper Care of Your Caregiver

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