I am really tired.
- Thread starter Ronni
- Start date
Ronni
Well-known Member
- Location
- Nashville TN
I appreciate the suggestion. We’re not there yet. He’s able to be by himself for periods of time, he mostly just sleeps anyway.
I’m still working so I prep food for him before I leave to make it easier on him to feed himself. I’m not concerned about him being alone, not yet anyway.
You’re sweet to suggest that, but I do go to work every day so that’s a change of scenery and a bit of away time for me. I love what I do, so work isn’t a chore.
But yes, burnout! Definitely feeling that acutely, at times. Feel like I’ve hit the wall physically, emotionally, mentally. I just want to turn off my phone and curl up in bed in the dark. Those are the times I KNOW it’s time to find some space, take time for myself and do things for a couple hours that are far removed from what I’m dealing with at home.
That keeps me on an even keel, at least temporarily, till it happens again, then rinse and repeat. I’m looking forward to taking some time that’s longer than a couple hours here and there.
Ronni
Well-known Member
- Location
- Nashville TN
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.
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.
katlupe
SF VIP
- Location
- Norwich, NY
Ronni, I am so sorry for you and what you are going through. I cannot give you any advice as I have never gone through this. But I understand that you need relief from the emotional stress you are dealing with. Is there some way you can do something away from him when he is in the cranky mood? Maybe go outside in your garden for awhile or just go shopping.
robin416
Member
Ronni, what you're experiencing is almost line for line what I went through. I blame some of this on my hub's medical team since they didn't prepare me for the what ifs. There were a lot of surprises and what ifs. We would go along like a normal couple and suddenly it would all fall apart.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.
If he's receiving steroids, they should have warned you that he's going to have outbursts of anger. Mine could feel it coming on and would remove himself to a quieter space until it passed.
The crying is a bit of a tension release and does help for a bit. Until the next thing smacks you both.
I made it through but I'm a tough woman with medical training. But not trained in what all cancer entails. The ups, the downs, the terrible surprises.
I'd give you all sorts of advice for how to relieve your stress but really, there's nothing until Ron finds a plateau and sticks there.
I feel for your reactions and it sounds like maybe Ron needs to be in a facility with medical staff until his treatments are over. I would ask about
this with his doctors or at the hospital. You do need to distance yourself for caring for him at this time but still be in contact with him as he recovers.
this with his doctors or at the hospital. You do need to distance yourself for caring for him at this time but still be in contact with him as he recovers.
Ronni
Well-known Member
- Location
- Nashville TN
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.
hollydolly
SF VIP
- Location
- London England
Ronni...I have nothing to say from experience, I've not walked the road you're taking so I'm not of any use to you with suggestions....except as your friend..
to listen and have you know that....Not only are you suffering from the shock of Ron's sudden serious illness.. but on top of your step-daughters' illness too.. trying not only to care cheerfully for your husband while his mood is low and irritable, understandably..but you're having to deal with a double whammy.... not just his daughter, but Ron's feelings towards not only his own pain but his darling daughters' too..
I can feel your absolute sadness, and exhaustion.. but I sense some anger too.. I hope I'm not offending, and it would be absolutely understandable that you my feel that and anyone would..... because after all you didn't ask for this...did you?.. this came out of the remanants of the Tornado that swept past your home in the last few years..
You promised in sickness and in health and you love and adore that man, and you will stick by your vows come hell or high water.. but I can feel the anger against this horrendous disease that's created this huge fissure in your family dynamic... and this is just so unfair for you.. while you''re doing your utmost to care for everyone physically and emotionally.. ..no-one seems to be caring too much for mum.. (((hugs)))
Gardenlover
Well-known Member
Ronni, try to be gentle with yourself through this. You’re navigating some really difficult things, and there’s no perfect way to handle it. You’re showing up with love even when you’re exhausted and that is no small thing. It’s essential that you take some time for yourself.
Ronni
Well-known Member
- Location
- Nashville TN
@hollydolly Thanks Hols ❤Ronni...I have nothing to say from experience, I've not walked the road you're taking so I'm not of any use to you with suggestions....except as your friend..
Not only are you suffering from the shock of Ron's sudden serious illness.. but on top of your step-daughters' illness too.. trying not only to care cheerfully for your husband while his mood is low and irritable, understandably..but you're having to deal with a double whammy.... not just his daughter, but Ron's feelings towards not only his own pain but his darling daughters' too..
I can feel your absolute sadness, and exhaustion.. but I sense some anger too.. I hope I'm not offending, and it would be absolutely understandable that you my feel that and anyone would..... because after all you didn't ask for this...did you?.. this came out of the remanants of the Tornado that swept past your home in the last few years..
You promised in sickness and in health and you love and adore that man, and you will stick by your vows come hell or high water.. but I can feel the anger against this horrendous disease that's created this huge fissure in your family dynamic... and this is just so unfair for you.. while you''re doing your utmost to care for everyone physically and emotionally.. ..no-one seems to be caring too much for mum.. (((hugs)))
Angry? You bet I’m angry!
This was not supposed to happen! We were supposed to live out our golden years together, active and happy and working on our house and enjoying the grands and taking trips and going on adventures and trying new things…..and now every bit of that is uncertain at best, and worst case will never happen! Eff cancer and all its fallout not just on the patient, but also on all the loved ones it takes down with it!
Ronni
Well-known Member
- Location
- Nashville TN
@Jules thanks for the suggestion, but he doesn’t need full time care, not yet anyway, hopefully never. I’m working and he’s ok while I’m gone. There’s just a lot more to do now, not only caring for his needs both when I’m at home and prep for when I’m not, but also doing all the house things I normally do, and also all the things HE normally does.
I had to find someone to mow the yard every week. Take the car in for service, water the outside plants and shrubs, power wash the deck for summer…all things he takes care of. As well as all the inside stuff he normally handles…loading and unloading the dishwasher, he takes care of the floor upkeep, runs she sheets and towels laundry etc. Because I still work full time and he was scaling back on his work, he happily took over some of the household chores.
And really, I can manage all the physical stuff, it’s the emotional load that weighs heavily on me, and so makes the physical stuff that much harder to manage.
Ronni
Well-known Member
- Location
- Nashville TN
@Rae, apologies for being snippy in my response to you.
It came off more harshly than I intended. I’m just so frustrated, and want to leep Ron close for as long as I can. I was up and down all night because he was having trouble and I shouldn’t respond when I’m this tired. My filter goes all to hell I’m afraid.
Mea culpa
Teacher Terry
Well-known Member
It might help you to hire some things such as someone to clean your house every 2-4 weeks, take care of the yard, etc. You can only stretch yourself so thin. You are in an impossible situation.
I know from recent experience that Medicare would pay for my husband's home health nurse but not for a home health aide. They said if we were Medicaid, they would pay for a home health aide. It's worth checking out though. Rules change all of the time. I'm not sure, but Medicare might pay for Respite.
OneEyedDiva
SF VIP
- Location
- New Jersey
Ronni, you are tired and rightfully so. You've been through so much and are doing so much! Have you looked into respite care? I'm not sure if it would work in you and Ron's situation though. Respite care is actually for the caregiver(s), not the patients. I used it when I had to care for my mother at home and I was suffering with sometimes debilitating A-fib attacks. A caregiver came in only a couple of hours a week for a couple of hours a day, but it was a big help. I believe my mother's Medicare paid for it because I don't remember us paying anything.
Is it possible to take a leave of absence from your job? It might relieve the pressures of having so many new things on your plate. What's so hard is not being able to fix this for Ron. I know. I didn't want to admit we couldn't just be like we always were, it would take time but we'd manage like always.
It is tiring and frustrating! For both of you. Get some help, you can't do it all @Ronni, have a quiet place to hide out in. Being scared is okay, how can we know what comes next?
I will send you both healing thoughts. Don't be afraid of asking your doctors for a script for anti depression medicine. We both took a low dose of Zoloft. It took the sharp edges off the bad days, didn't take them away but we didn't give a #%*".
It is tiring and frustrating! For both of you. Get some help, you can't do it all @Ronni, have a quiet place to hide out in. Being scared is okay, how can we know what comes next?
I will send you both healing thoughts. Don't be afraid of asking your doctors for a script for anti depression medicine. We both took a low dose of Zoloft. It took the sharp edges off the bad days, didn't take them away but we didn't give a #%*".
Ronni
Well-known Member
- Location
- Nashville TN
CaliS
girl next door
- Location
- West Coast, USA
Murrmurr
SF VIP
- Location
- Sacramento, California
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.
