I am really tired.

[TeePee]

Probably a good idea to find out how Medicare defines home health nurse, or what duties aren't in their job description. Like, they probably don't dust furniture but do change bed linens, don't vacuum the living room carpet but do mop bathroom floors, etc.

Maybe in California that happens but not where I'm at in Kentucky. Home health nurse did vital signs and went over medications with my husband and me. Medicare did pay for Physical Therapy for him which was helpful. They did not pay for home chores.

Prior to my husband, I took care of a male friend who was in a head on with a school bus. He became immediately incapacitated. He had Medicare also. Medicare paid for some nursing supplies, a home health nurse that monitored his V/S and did his dressing changes, and a wound care doctor that came once a month. They did not pay for household chores. There again we were told that if we were Medicaid that home chores would be paid for but since he was Medicare they wouldn't. I do believe that they said Medicare would pay for Respite if needed but he didn't want to go to a nursing home for a short term stay to get it.

 

[Kaila]

Ron’s improvement was short lived. I’ll post more about that on his cancer thread. What I want to talk about here is how devastated I was personally about that.

It’s difficult to describe my landscape of emotions surrounding his cancer journey. Obviously there are highs and lows, and I expected that. But I didn’t understand how deeply and in what manner I would be affected, and how that would manifest in my life.

I stood in the shower and sobbed. I felt defeated, just completely let down and hopeless. There’s NOTHING I can do for my sweet husband to ease his pain, and as a nurturer by nature, this just destroys me.

There’s also the rollercoaster of his journey. I had not anticipated nor expected that he could be in bad shape one day, feel so much better the next, and then plummet again, all in the space of 72 hours. I just assumed that when he’d feel bad, he’d get whatever help he needed and would improve until his next infusion. I do’t know…hard to describe. I guess I expected more linear progress.

He’s typically such a positive, upbeat guy, dealing with life with humor and good nature. This pain and the drugs he’s on have beaten him down and made him cranky, snappy, short tempered and negative and that really hard to be around 24/7, and has added to my upset. When he does feel better he apologizes for his behavior, but he doesn’t feel better very often so the behavior is fairly constant.

I guess I just need to learn, for my own mental health, to have no expectations in relation to his journey, to stay completely in the moment and not assume that any positive change will continue. To just accept each moment for what it is, and not build on that for a continued good outcome.

Also I need to figure out how to not let his sour moods color my own days negatively, because that’s currently what’s happening.

This is really hard.

Thanks for sharing this with us, Ronni.
Even though i wish so much, that things could be different than they are, for you and for him.

 

[Ronni]

Just a vent.

Ron is so discouraged about the way he’s feeling currently. He’s miserable and emotionally spent and in pain and it’s awful.

I told him flat out that whether I agreed or disagreed personally about his decision re next steps, I would 100% support him no matter what, and would go to war with his daughters as necessary if they disagreed with him.

That seemed to relieve him enormously! He just expressed his deep gratitude. Damn. It humbles me profoundly that he relies so much my support.

 

[seadoug]

I so admire the love you have for each other @Ronni. I'm sure there are so many that would love to have the same. I have faith that your support for Ron will get him through this.

 

[Delia]

You have so many people leaning on you right now. Bitch and whine all you want. If you can, find some diversions, mental or physical, whatever helps. Sending hugs.

 

[Pinky]

Just a vent.

Ron is so discouraged about the way he’s feeling currently. He’s miserable and emotionally spent and in pain and it’s awful.

I told him flat out that whether I agreed or disagreed personally about his decision re next steps, I would 100% support him no matter what, and would go to war with his daughters as necessary if they disagreed with him.

That seemed to relieve him enormously! He just expressed his deep gratitude. Damn. It humbles me profoundly that he relies so much my support.

Just keep holding on to one another @Ronni

 

[robin416]

Just a vent.

Ron is so discouraged about the way he’s feeling currently. He’s miserable and emotionally spent and in pain and it’s awful.

I told him flat out that whether I agreed or disagreed personally about his decision re next steps, I would 100% support him no matter what, and would go to war with his daughters as necessary if they disagreed with him.

That seemed to relieve him enormously! He just expressed his deep gratitude. Damn. It humbles me profoundly that he relies so much my support.

I told mine the same thing when they said he had a brain lesion. I would do whatever he wanted. If he wanted to fight, then we'd fight together. If he was too tired after 2 years of the roller coaster ride, I would stand with him then too.

 

[Jules]

I told him flat out that whether I agreed or disagreed personally about his decision re next steps, I would 100% support him no matter what, and would go to war with his daughters as necessary if they disagreed with him.

That’s rough that his daughters have different opinions than he has. They should support whatever he feels; conflict is the last thing he needs. You’re a good woman to support him and there won’t be anyone tougher.

 

[911]

This has probably already come up, but have you considered joining a support group in your area? There are organizations and churches that support such groups here where I live and I have known people who attended the meetings and found them to be very beneficial. You suddenly find out that you aren’t going down the road of darkness alone. Being able to talk out the difficulties of these times can help you by expelling your frustrations, anxieties and uncertainties.

You may want to try attending 1 or 2 meetings and if it isn’t for you, you can stop going.

 

[Blessed]

I totally understand how you feel. I also saw my husband through his cancer fight. He was diagnosed as terminal from the beginning. After I did some research on his rare cancer I knew it to be true.

He never accepted it but we were young, he was diagnosed at 46. We did everything we could. He was given 8 months but we got 5 years and 1 month, after many treatments including clinical trials.

I know you are physically and mentally exhausted. The hard truth is that so many do not understand the strain you are under is as hard on you as Ron.

I am glad that you and Ron are discussing the hard things that come with this. That you will be there to help him regardless of his decision of treatment.

I will keep you both in my prayers.