I am really tired.

Murrmurr said:
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.
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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.
 
Ronni said:
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. 💔
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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. 😭😣🙁
❤️
 
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.
 
Ronni said:
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.
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Just keep holding on to one another @Ronni
 
Ronni said:
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.
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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.
 
Ronni said:
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.
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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.
 
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.
 
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.
 
I saw my doctor Friday for my 6 month well check. I told her I was falling apart, and why. She’s such a receptive audience and I felt heard and understood. ❤️

She upped the dosage of the lexapro I take. Said that it should help with the emotional rollercoaster I’m on. Also discovered that my anemia has really ramped up, and referred me to a hematology clinic for some regular iron infusions until the levels are back up. Until now, diet alone has been keeping the anemia under control, but the added stress and my diet being a bit more haphazard has taken its toll.

I’ve also had an issue with one knee. I think I hyper extended it exercising and now its swollen, and uncomfortable/painful since. Upon exam she decided she wanted some imaging done,, so I have a referral for that too. I’ll go today. Meanwhile she prescribes meloxicam to help with the acute discomfort and said we may need to talk about a little PT once she sees what’s going on.

She emphasized the need for me to stay in touch with her for whatever I need, said we can schedule telehealth visits as frequently as I want, and said she’d be back in touch once she got the rest of the results from the blood panel.
 
Blessed said:
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.
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You put that so eloquently. Every time I see Ronni do an update and read the latest, I feel it in my gut since it's been my experience also.
 
Been There said:
I had a lot of problems using Meloxicam. Stretching before exercise is always a good idea.
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I did too. They made me sick to my stomach, dizzy and a little anxious. I only had to take them for 10 days after I spilled my bike and broke my thumb. I tried to take it at the same time each day at dinner between 5-6.

BTW, how are you getting along these days. Is life still getting ahead of you? Remember to care for yourself. It’s not being selfish to do what you have to in order to stay healthy, so you have the energy to take care of others.

Best wishes from me to you.
 
Ronni said:
Curious what kind of problems @Been There?
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Nausea, headache, a few hives, which were mostly around my stomach area and a bit drowsy. It wasn’t as bad as Gabepentin, but the dizziness, which only lasted for about 4 hours, bothered me most. I was told by the Pharmacist that if I should get hives, I should stop and contact the doctor, which I did and he said that because it was only a few hives and they itched to keep taking the medication until they were all. If it gets worse and the hives spread stop at once and call back. It was only a 10 day supply at one once per day. They did take away my pain, but then created other problems.
 
@Been There @911 interesting. So far I’ve had no reaction that I can discern from the Meloxicam, and it is decreasing the discomfort in my knee. I haven’t been taking it long though so here’s hoping there’s no cumulative affect.

Also @911 thank you for your good wishes. ❤️ I’m maintaining, trying to devote a little time to myself daily, though it doesn’t happen every day.
 
Ronni said:
@Been There @911 interesting. So far I’ve had no reaction that I can discern from the Meloxicam, and it is decreasing the discomfort in my knee. I haven’t been taking it long though so here’s hoping there’s no cumulative affect.

Also @911 thank you for your good wishes. ❤️ I’m maintaining, trying to devote a little time to myself daily, though it doesn’t happen every day.
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I have 2 really bad knees. In fact, the left knee is bone on bone. I use Voltaren Gel and wrap it, and take 2 Advil and go to bed. Two nights of that and it feels good again. I was getting shots of Synvisc, which also works well.
 
Ronni said:
@Been There @911 interesting. So far I’ve had no reaction that I can discern from the Meloxicam, and it is decreasing the discomfort in my knee. I haven’t been taking it long though so here’s hoping there’s no cumulative affect.

Also @911 thank you for your good wishes. ❤️ I’m maintaining, trying to devote a little time to myself daily, though it doesn’t happen every day.
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I think the posters are right. You “must” take time. I knew a woman in Virginia that had her mom living with her. Her mom rarely came downstairs for anything. This woman had to run up and down the steps, run her to doctors’ appointments, run her meals upstairs and again to get the dirty dishes, run her meds up, etc. all day, everyday for years. The woman doing all the running died suddenly. People said that woman never had a moment of peace to herself. After she died, mom went into a nursing home and within a year, she died.

Food for thought.
 
Ronni said:
I appreciate the sentiment @Rae but that won’t happen. While I fully understand the need to take time for myself when needed to recharge, I won’t ever agree with removing Ron from his home and his familiar and comfortable surroundings, his beloved pets from whom he derives much comfort, and also from me, his biggest supporter and cheerleader, his comfort and yes, his rock through these difficult times.

To have him moved to a facility to enable MY comfort would be a selfish thing to do. I am many things, but selfish isn’t one of them.
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Ronni, My sister's husband had a massive stroke immediately after they came from from a night of dining and dancing at her sorority's annual function. She was in a total state of shock. When he was released from the hospital, he was in a vegetative state but she refused to put him in a nursing home. . She had a hospital bed brought in and all the life support equipment needed. She had help from their children, our brother and a niece. I hadn't met my (half) siblings when it first happened, but got to "meet" Clarence shortly before he passed. It was heartbreaking and exhausting, but she did it. Bless you for doing the same for your husband. I imagine you couldn't sleep at night if you didn't.
 
Been There said:
I think the posters are right. You “must” take time. I knew a woman in Virginia that had her mom living with her. Her mom rarely came downstairs for anything. This woman had to run up and down the steps, run her to doctors’ appointments, run her meals upstairs and again to get the dirty dishes, run her meds up, etc. all day, everyday for years. The woman doing all the running died suddenly. People said that woman never had a moment of peace to herself. After she died, mom went into a nursing home and within a year, she died.

Food for thought.
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The challenge for those of us that found ourselves in the same place Ronni is, even if we were able to remove ourselves, our brains were still glued to the challenges we faced/face.
 
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