Heading into several stressful weeks, should I ho... - PMRGCAuk

PMRGCAuk

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Heading into several stressful weeks, should I hold steady?

perceptual63 profile image
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I live with two other housemates who are 67 & 69 y.o., I'm 60. The 67 y.o. housemate is having major back surgery where they will be widening his spinal canal and placing two rods in his back. The 69 y.o. housemate is also having major surgery to remove a bad kidney.

Mind you, both of these surgeries are within 2 weeks of each other starting a week from this Monday. That means I will not only be the caregiver for both of my housemates, I also have to take on each of their own household responsibilities in addition to my own (I am the main cook). Then there's also the additional responsibility of taking care of one of the housemates 2 Australian Shepherds that are a little high maintenance.

I am currently at 12mg of prednisone and am suppose to taper to 11mg but was wondering if it would be in my best interest to just hang at 12mg for a bit until things are a bit less stressful where everyone is more on the mend and then I can resume my taper schedule?

I know this should be a no-brainer but I'm just a little overwhelmed at the moment and just need a little support/encouragement to help get me through the next several weeks without losing my mind in the process.

Much thanks in advance.

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PMRpro profile image
PMRproAmbassador

Really don't think I would be reducing my dose in that situation! I was sole carer for my husband through Covid lockdowns and until his death - I needed to go up the dose, not reduce it, There was only one of him and no 4-legged friends!

Is there any chance of home help? I have to confess to shoving cleaning very much to the bottom of the pile but i didn't have pets which changes the need. Walking the dogs is also likely to be hard work - anyone around who might share?

perceptual63 profile image
perceptual63 in reply toPMRpro

I am so awful in asking for help but our neighbor's wife did offer to help. I now have to know well enough when to take her up on it. I can be stubborn as I grew up with the family motto "If you want something done right, do it yourself" as well as me having trouble asking for help in general as I always feel like I'm imposing on others, so I don't ask.

So I guess this is a test for me to know enough as to when to give up control for others to help.

Thankfully we have a fenced in property for both dogs to go outside to do their business but we have the property full of flowers and plants that were watered and maintained by the other housemate that doesn't own the dogs. It takes her about 1 - 1½ hours every couple of days to water everything so now that falls onto me and would have to do that before the sun comes up here in sub-tropical Florida so that I don't end up with heat stroke because of a particular med I take that can cause that.

I need a vacation already. 😵‍💫

PMRpro profile image
PMRproAmbassador in reply toperceptual63

You have to look after you or you can't look after them! You have to know NOW that you can't do it alone - normally there are 3 sharing the tasks. No-one even in full health would manage easily. Something has to give. If it is the plants - then so be it. But that is something that a neighbour can do well, in conjunction with the person who usually does it - and the time could be switched to the evening perhaps, watering in full sun is a waste anyway.

perceptual63 profile image
perceptual63 in reply toPMRpro

It's about 80 degrees here at 6:30am and about 87 degrees here at 7pm so I would need to water the plants early in the AM so I don't heat-stroke out. I'll try watering myself to see if I can take the heat or if it becomes to much to do with all the other stuff I need to do then would ask our neighbor's husband if he could help.

The housemate that is having back surgery thought it was a good idea to also have his larynx stretched a week before his back surgery to get it out of the way since he's been having swallowing problems and that it's been a year since his last stretching. Personally, I don't think having his larynx stretched a week before a having a major surgery is a wise idea. I asked him to ask our neighbor to take him for that surgery as I'll be taking him for his back surgery and he got all bent out of shape that I wasn't taking him for both surgeries.

I'm not Superman and don't pretend to be.

PMRpro profile image
PMRproAmbassador in reply toperceptual63

There is a wonderful word in the English language - NO!

Nightingales profile image
Nightingales in reply toperceptual63

A wise friend once said to me that not asking for help is a selfish action. It makes others feel bad when they want to help and they are reluctant to ask you for help when they need it.

Mayadill profile image
Mayadill

Hi, I know people do fabulous jobs looking after their nearest and dearest, but as Pro said usually one at a time. I think you need a helping hand here. If not, I'm wondering about the exact time-frame, how long will each of your house-mates be in hospital (could it be prolonged on the grounds no-one at home to provide sufficient care), what care would you required to give and thinking of your Pred afflicted muscles would it involve lifting, would you also have to drive them to out-patient follow-up, would the extra household duties be a strain. Is there anyone - a neighbour's teen maybe, who could walk the dogs? Apart from upping the Pred, I'd be drawing up a contingency plan here around the absolute minimum I'd need to do.

perceptual63 profile image
perceptual63 in reply toMayadill

The housemate who's having major back surgery thinks he'll be only in the hospital a couple of days! I've been trying to get into his head the seriousness of his back surgery and what that entails and also his recovery but all he is seeing is the surgery itself and it will be much better than the pain he's been progressively enduring.

Our neighbor's wife offered to help. I just have to allow myself to let her help and not think I'm imposing on her by asking for help.

PMRpro profile image
PMRproAmbassador in reply toperceptual63

If anyone is imposing it would be the housemates!!! I know they can't help it but ...

He WILL only be IN the hospital for a few days if it all goes well - but it means a couple of weeks at home needing support and not being able to do things

mayfieldclinic.com/pe-decom...

has a pretty realistic description of recovery times and dos and don'ts.

Nephrectomy is also a major op requiring 3 to 6 weeks recovery. What a shame they are coming so close together - what it needs is for one to get a cold so surgery has to be postponed!!!!!

perceptual63 profile image
perceptual63 in reply toPMRpro

The back surgery housemate initially had his surgery scheduled a couple of months ago but I think the anesthesiologist canceled it last minute due to my housemates A1C glucose being at 12 even on 3 different diabetic meds. So I modified all of my cooking to help him get his A1C to a healthier level, which is now a 7, and it gave him a green light to schedule his back surgery again.

But I didn't think he'd schedule it just 2 weeks after our other housemate just had kidney surgery. Clearly, he just only thought about having his surgery and not taking me into consideration of how everything would shift to me with both being incapacitated at the same time.

I try not to get angry about that.

Mayadill profile image
Mayadill in reply toperceptual63

i think not. 55 years ago i had a metal rod put in my back and was in hospital a long long time. Just looked up how it is today with fantastic advances in surgery: 'about a week'.

perceptual63 profile image
perceptual63 in reply toMayadill

My GP mentioned to me that all her patients that have back surgery usually go to a rehabilitation hospital straight from the surgical hospital. My housemate said that his back surgeon said he'll only be in the hospital a couple of days with no mention of rehabilitation afterwards.

I think his surgeon is being overly optimistic but what do I know.

123-go profile image
123-go in reply toperceptual63

HeronNS and others have made some excellent suggestions and PMRpro has rightly reminded you of the ‘NO’ word but I have to ask, why aren’t your housemates setting up plans now while there is still time? Are they taking you for granted? It’s time to sit down with them and have a serious, realistic conversation before these operations after which it looks right now as though you will be doing all the fetching and carrying and ferrying as well as the usual household tasks that are normally shared. You can’t, with the best will in the world, be all things to your housemates especially as you have your own health issue to manage. What would happen to your housemates if you were laid up? Will you change your forum name to RunRagged?

(I used be that person who didn’t like to say ‘no’- simply because I wanted to help. Then, in my 70s, pre- PMR but slowing down, I decided to politely say, “I’ll dead-head the flowers while you are away but I can’t do that AND cut the grass”, etc etc. It didn’t spoil the friendship.🙂)

perceptual63 profile image
perceptual63 in reply to123-go

I've always been the go-to person in this house as I can fix and build most things (both technologically and physically) where both my housemates are at a complete loss because they are completely inept. But I enjoy doing these things but not cooking. Although I do all the cooking I don't enjoy doing it as I find it very laborious but I do it because I have more control and variation of putting better food in our bodies as opposed my housemate cooking just a lot of pasta and meat and potatoes. My housemate is diabetic, I'm pre-diabetic, and my other housemate doesn't cook at all.

Yesterday, I stated my displeasure with my housemate who scheduled his back surgery just 2 weeks after my other housemate's kidney surgery. I said that I can take him for his back surgery but the larynx surgery that will be a week prior, he needs to call his best friend who is also our neighbor to take him because it's just too much for me in addition to being the caregiver for both of them and taking care of the whole house at the same time. I also said it would have been best if he scheduled his back surgery about a month after her kidney surgery to not have everything pile on me all at once. I then said he didn't think about how this would be affecting me. He said nothing.

So, I did air my grievance and it was in front of both of them when I said it.

123-go profile image
123-go in reply toperceptual63

Good for you for speaking up. I hope my response didn’t come across as a lecture: that wasn’t my intention; instead I wanted to offer a degree of empathy and support. I recognise that you are in a difficult position and that you are are facing a brick wall in as much as that your housemates appear to feel that you are able to take on all they ask of you having been so efficient and accommodating in the past. I hope you all find ways to ease the situation to the satisfaction of everyone. Your own health and well-being is as important as that of your housemates and I wish you well.

Shiv14 profile image
Shiv14 in reply toperceptual63

People feel really good about themselves when they help others so by allowing your neighbour help you are giving them that pleasure.

perceptual63 profile image
perceptual63 in reply toShiv14

Our neighbor said she is more than happy to help out and has reassured me that she will be there for me and to not worry.

The powers that be seem to be looking out for me through this support group as well as from our neighbor.

I am truly grateful for the support here and from our neighbor.

HeronNS profile image
HeronNS

Tallk to the neighbour who has offered to help. Tell her the things that are going to be done and perhaps she's actually in a position to round up a couple of other nearby friends who would be happy to chip in for some occasional relief. Who knows, maybe someone knows someone else who loves to walk dogs, or is a champion gardener? What about other friends of your housemates? No one has to commit to walking the dogs every day or arriving at your place at the crack of dawn a few days a week, but sharing the load is an absolute must for you, and enlisting your neighbour's help not only to help directly but also to widen your circle of helpers could be a way to go.

Don't try to put on too brave a face. Ability to express need or vulnerability is a kind of strength in itself.

And, no, follow your instincts and PMRpro's advice - no tapering and maybe an extra mg or two at the beginning until you find your stride.

Good Luck! 🍀

perceptual63 profile image
perceptual63 in reply toHeronNS

Yes, I didn't think tapering during all this would be a good idea but I'm not really too fond in increasing either. I've been on a 5 week taper so I'll skip the next 5 weeks in tapering and then hopefully resuming after that time.

But I think this is going to go beyond 5 weeks.

Mayadill profile image
Mayadill in reply toperceptual63

Hi again! My understanding - Sick Day rules - is you can up your dose for up to a week without then having to taper again, just go back to your normal dose. I'm thinking some weeks of this could be harder than others, for instance when someone is just out of hospital, and it might be an idea to increase the Pred to give you a boost then. Of course you have a double whammy here. Forewarned is forearmed! i do think it would be really useful to know exactly - forensic detail! - what you'll need to do when each of your friends arrives home. Maybe talk to your GP? Assuming no complications, it will get easier with every day.

PMRpro profile image
PMRproAmbassador in reply toMayadill

"Assuming no complications, it will get easier with every day."

Not necessarily - tempers fray, on both sides. And the person doing all the caring gets tired. Been there, done that.

Mayadill profile image
Mayadill in reply toPMRpro

True. So have I. My mum, in and out of hospital. But the person's health/his ability to do things does/should improve, at any rate in this situation. The last time my mother came home the ambulance had a do not resus note but she made it and died in her own bed at 95 about 6 weeks later.

PMRpro profile image
PMRproAmbassador in reply toMayadill

Mmm - but there is a difference between husband or mother and housemates.

perceptual63 profile image
perceptual63 in reply toPMRpro

Yes, thank you for this clarification. Although we all have lived together for many years we are still not related in any way. Just old friends which forgoes making any medical or legal decisions for either of them.

perceptual63 profile image
perceptual63 in reply toMayadill

I've had about 22 surgeries, both major and minor, to have an idea of the good, bad, and ugly after a surgery is done and both housemates are treating having back surgery and having a bad kidney removed as a cake walk, which neither is. They are both up there in age, so there's that. My housemate who's having the bad kidney removed still only has the other kidney working at just 32%. There are 5 Stages to kidney disease and she is at Stage 4 kidney disease (Stage 5 is dialysis) in addition to her coronary and peripheral artery disease.

So there are a few wild cards at play here to be unable to break it down into bullet points on what to expect when each comes home.

And then there's me being able to keep it together throughout both their recoveries and taking care of the house, cooking, food, shopping, laundry, garden, and 2 intense dogs.

Though thank you for the thoughtful optimism.

PMRpro profile image
PMRproAmbassador in reply toperceptual63

Do either of them have family?

perceptual63 profile image
perceptual63 in reply toPMRpro

My housemate who is having back surgery doesn't have living relatives in the US after his parents passed as he is first generation here and his parents and family are all from Germany. My other housemate who is having kidney surgery has family living in the US but they all pretty much live about a 1000 miles away in different US states to offer any help. We moved to the state of Florida about 3 ½ years ago.

Mayadill profile image
Mayadill in reply toperceptual63

Then it's not unknown territory. You said you were feeling overwhelmed - just the sheer load? Anyhow, you're supported and encouraged!

perceptual63 profile image
perceptual63 in reply toMayadill

Thank you for your support and encouragement to what may be bestowed upon me in the coming weeks.

It's truly appreciated. 🙏

Flutterbies57 profile image
Flutterbies57

Take care of yourself first. A small delay in going down , will not be a big problem. Take care and do call for help if you need it . All the best for all three of you.

perceptual63 profile image
perceptual63 in reply toFlutterbies57

Thank you for your support.

Yes, I plan to stay at 12mg for the next 5 weeks then reassess whether or not to resume my taper to 11mg

Missus835 profile image
Missus835

You know what they say about a crashing plane...when the oxygen masks drop? Give yourself the oxygen first so you are then able to help the others. You are not superman or a nurse. This could be a humility test for you. Talk to the neighbour who offered her help and also the one who is "the best friend". If your housemate gets salty, tell him to make his own arrangementsSee what he can do more than drive. When you help (in most cases) does it make you feel good? It will make them feel good too. My spidey senses tell me you are the one who could end up more sick.

Get in touch with their Surgeons or their offices, for a realistic recovery time. They may well need re-hab and have said they have a perfectly good caregiver at home. Who's going to give them their meds? Do you have authority to do so?

Prioritize...you being #1. Can dogs go into a kennel for a week or so? Can you make some meals now and freeze them? Maybe the neighbour can water the plants?

If you are unable to realize this, you are already stressed and take Pro's advice - up that Pred now or you may all need homecare. NO is a short word and very powerful. You are a wonderful person and I say all out of love. "Just say no." Having been one who had to learn this lesson.

perceptual63 profile image
perceptual63 in reply toMissus835

I've learned from the past that high stress makes me very sick so I try to avoid getting myself into very stressful situations. But this upcoming stressful situation is completely not of my making. I knew ahead of time that both housemates needed surgery but what makes this difficult is that the surgeries were scheduled too close to one another and I believe not much thought was given on how much of an impact it would be on me. But I've also learned from the past that pacing myself when in a stressful situation helps to mitigate at least some of that stress.

The dogs are both rescues and have never been in a kennel since my housemate has had them in addition that they are both old at 8 and 10 years old. So personally, I would rather not stress them out too. In particular, one has separation anxiety and the other is on prednisone and an autoimmune depressant for a rare disorder that causes muscle wasting in her skull and jaw so she is too immune compromised to be around other dogs.

As far as the household chores go, I'll do what I can do with what is coming my way and will rely on my neighbor when needed.

anutycrixp profile image
anutycrixp

Time to get some paid help… cleaner/ housekeeper, dog walkers etc .Everyone contribute financially towards this. A big wake- up call regarding the future as well. Time to all discuss this ,managing inevitable aging and health requirements etc etc.what were they expecting to happen? That you would take on everything and their lives would smoothly carry on as they recover? At least the dog owner could have them kennelled for a few weeks for a start.I feel angry for you… please take care of yourself during this tumultuous time ,get any help you can for yourself but why they haven’t made arrangements for their their own stuff I don’t know. Also please don’t take on any personal care,if needed they can pay for a carer to come in for this. Here endeth the sermon!, sorry just feel for you ,best wishes and let people help…they love it!

perceptual63 profile image
perceptual63 in reply toanutycrixp

Unfortunately, my housemates dogs are obnoxious anytime someone comes in the house. The constant barking tends to unnerve everyone in the house so having cleaning people come in would just create more chaos. If I outlive my housemate, who is a perpetual dog owner, there will be no more dogs in this house. I'm just done.

Thankfully, I've given up on the idea that I need to do everything. Realistically, I can't do it all on a consistent basis but my initial response to it all was to keep the boat afloat. But now I understand that some water can get in the boat without it totally sinking.

HeronNS profile image
HeronNS

The kennel idea for the dogs sounds like a good one, but possibly the owner would need their companionship during recovery? But a dog walker could really help here, especially someone who can keep them out long/often enough to get them tired out!

Do either of the patients have medical insurance which includes some level of home care during earliest days of home recovery? I don't know your system,but are there public health nurses who can come in and give you some respite occasionally as they monitor the patient's needs?

perceptual63 profile image
perceptual63 in reply toHeronNS

The housemate who is having kidney surgery I believe will be okay with her recovery as long as there are no complications, and if she were to have complications I foresee her being admitted to the hospital. I'm not worried there. The other housemate who is having back surgery does have insurance for long term care because I said to him many years ago that I can do a lot of things but I refuse to ever clean his buttocks. For a spouse, yes, but not for a housemate. I draw the line for that.

We have a gated property for the dogs to run around but I would still have to pick after them. Putting them in a kennel is really not the best option for them and would be less stressful for all involved if we maintained their daily routine as best as possible as both dogs are anxious dogs, with one particularly more so than the other.

HeronNS profile image
HeronNS in reply toperceptual63

I perceive you working out the way to handle these things. Sounds like you really will be able to manage - but do take up the neighbour's offer to help.

Years ago I learned that when you accept help you are actually giving the other person a gift, the opportunity to do a kindness - as you are doing for your housemates. The key is not to impose, and I sense that there is a bit of inadvertent imposition occurring in your case because both of your companions are going to be needy at the same time, rather than one or the other being a partner with you in caring for the third person. Most unfortunate timing, but these days, one takes what medical care one can get when one can!

perceptual63 profile image
perceptual63 in reply toHeronNS

With the help of you and others here in this group has made it possible for me to address the various issues and their remedies (whether good or bad) that I will be experiencing with both housemates being incapacitated pretty much at the same time. I feel that talking these issues out has greatly decreased my anxiety about the whole mess of the situation, although it will be stressful. I just have to remember to pace myself and to breathe.

I truly appreciate you and your words and to everyone else here for all the support you've all given to me.

Pippah45 profile image
Pippah45

Goodness me, I would be feeling put upon - taken for granted and several other things. If the owner of the dogs has dog insurance it is possible that they could be looked after by that. Lots of dog insurance here include kennel fees if the owner isn't able to take care of them. I think I would add a few takeaway meals to what you need to do the job. I don't know about Fl but I tend to water the garden in the evening and find it quite therapeutic.

As the others have said do look after yourself and I wouldn't drop the dose until you can take a breath or three! If you are on Thyroid meds it could be an idea to increase them for a week or so too.

Modern surgery is a wonderful thing - I was able to cope alone 4 days after surgery with a new hip. And with major abdominal surgery I looked after myself straight out of hospital. Until I got an infection in the scar and then help came in as needed.

perceptual63 profile image
perceptual63 in reply toPippah45

I'm going to stay at 12 mg until things are a bit more settled down after their surgeries. I'm skipping the next 5 week taper to hold steady at 12mg then I'll reassess if I should resume my taper again or hold off for another 5 weeks and then reassess again.

Funny how you mentioned thyroid meds as I do take them but for the most part my levels have been consistently stable for many years. But I do need to watch my nutrition as stress seems to tax it if I'm overly stressed as it shows up as canker sores and acne.

It's hotter here in the evenings as opposed to early mornings for me to water the garden. My housemate has his dogs on a ridiculous wake up schedule that has them up at 2 am I think because he has insomnia. That's not happening with me while he is in the hospital as I get up around 5 am or a little thereafter. So I'm thinking after I feed the dogs and have my breakfast I can head outside to water the garden around 6:30-7 am, just as the sun is starting to come up. It'll be a lot cooler in the morning by nearly 10 degrees than in the evening as the sun doesn't set here until about 8:30 pm. Well, at the very least, that's the plan.

Regarding surgeries, yes, modern medicine has come a long way. For me, I've had most of my large intestine removed due to a bad fall off a ladder. The surgery was a success but how I healed was a whole other story. The year following this major surgery I ended up complications that included a bowel obstruction surgery and then another bowel obstruction surgery that included revising my new connection because it had scarred down so badly and perhaps that is what caused my bowel obstructions in the first place.

Hopefully, my housemate who is having kidney surgery won't experience any complications and just deal with the aches and pains of recovering.

My other housemate on the other hand that is having back surgery is the wild card here. I've also had bone surgery in both elbows due to a birth defect so I know bone pain. Bone pain is like no other pain. It's a deep constant achey pain that only goes away with healing and time. I have a sense of what my housemate is in for but feel he doesn't have the overall gravity of it all. But maybe it's best he is ignorant to what he is in for as I was when I went in for my intestinal surgery as there was less fear going into it.

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