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I'm so sorry for your loss.
things you can do: try to be proactive. Make a list of everything you typically do to help him be comfortable and do it without asking. Try to anticipate needs, ask questions like do you need anything else. Wait and give them real time (1/2 hr-hour) to actually think of things and answer you. Expect to hang around for awhile to take care of them. The more you can anticipate and do at once, the less back and forth. Establish routines which will make things easier for both of you. Above all-be realistic...
Honestly, even on your profile it’s there, that you “feel like a slave”. I don’t know what you are going through, but I’m also not sure what you expect. Caring for someone who is in constant pain, and needing constant help isn’t easy. It’s why so many face nervous breakdowns and ‘burn out’. Your post said he becomes more demanding in the evening- It’s likely your father needs just as much all day long but isn’t getting or isn’t comfortable asking for the help from the caregiver you have during the day. There is also the likely possibility that the caregiver DOES do it all- and doesn’t think of it the same way you do- BECAUSE standard caregiving JUST IS a difficult and demanding job. It’s standard and they aren’t likely to see it as ‘demanding’, just an average day.
Look, none of us are born patient- rarely do you see a baby silently waiting for their parent to get around to changing their diaper. Patience and understanding is something we all have to learn, so it’s forgivable that you’re not quite there yet. But just as a new parent learns to keep giving endlessly to a 10lb tyrant who won’t let them shower or sleep, we can all learn to find the well of patience inside to care for our parents ‘demands’ for our love, support, and care- just like they did for us when we needed them for *literally* absolutely everything.
Consider a different perspective:
-Would you ever dream of hearing a new mom saying she tried to ‘stand up’ to her 2 day old because they constantly needed her?
-What would you say to a mom who complained her baby’s constant crying and ‘demands’ made her ‘feel like a slave’?
-Imagine a baby just waiting around for a parent to get around to them, or not crying out because the person taking care of them seems tired, or just brought them something else so they don’t want to ask again.
-Would you honestly expect someone who needs help with something not to ask? Would you honestly expect them to be uncomfortable or unhappy because it’s inconvenient or irritating for the other person? Just ignore their needs or wants? Just suffer with it? Would you honestly want someone you love to do that?
-Ive been using an average newborn as an example. What if the baby had colick and cried for hours on end? Your father is in constant pain.
Parents take years off their life expectancy by caring for a baby. They suffer through worry and sleeplessness, skip showers and give up everything from hobbies to friendships to money to even their own meals for their children. In general, a Parent would give you a kidney if you needed it. Parents wiped your butt and your nose. Parents fight with their kids to take their medicine and do their homework. They wake up, wipe away tears and listen patiently to the nightmare, accepting they will have to go to work without sleep. They change their hearts, minds, activities, bodies, attitudes, relationships and lives for their children. And they do it again and again and again.
-(Presumably) He did it for you. Now it’s your turn.
No one asks to be in pain. No one wants to rely on someone else this way, it kills something inside of you to need help, and to get used to asking for it. I have the unique perspective of having been a caregiver for my mother, a caregiver for my grandmother, needing care myself and being a Parent. This is just what it means to take care of someone.
Arthritis burns, hot and cold. It stabs. It crushes. It mangles. It rips. Just imagine walking on broken glass, getting stabbed repeatedly at the knee or hip, crushing and mangling your hands in a piece of machinery or being lit on fire and then someone telling you take some Tylenol and shush up about it. I understand it’s painful to hear, but it’s far more painful to experience.
I spent years undergoing low dose chemo for arthritis pain- yes you read that right, chemo. I also tried injections both weekly/monthly injections(orencia among others for example) and surgical steroid and caudal epidural injections. Nothing worked. Lyrica, Celebrex, there’s a ton of meds on the market- but the only thing we have found that treats my pain effectively (after a decade of trying everything under the sun)- was opioids. I initially refused because of my pride, then my fear. But ultimately I took and do still take prescription pain medication. You need to be an advocate for your father to get the relief he needs.
Most need multiple approaches:
- both a long acting/constant pain relief in the form of a 12 hr pill or patch that works like an IV *and* another medication for when even that isn’t enough (like norco that works every 4hrs)
-nerve medication can produce unwanted and painful side effects, but they do help many. Examples-Neurontin and lyrica
-There are other things available like prescription lidocaine patches that you can trim and shape to wrap around fingers or feet.
-TENS machines are another option.
- If you’re in a state where it’s legal, you could try cannabis edibles or oils but for many it simply doesn’t work. There’s also the chance you could try one type of cannabis that doesn’t work but another strain would- there are as many types as there are maladies.
The bottom line is he may need just a little help- or he may need EVERY tool in the toolbox, everything I mentioned and more to get through the day- and it’s likely to change from day to day too depending on hundreds of factors outside of your—or his—control.
The patience required to care for a demanding relative is the same as for a squalling newborn baby who does nothing but poop and eat. It’s something we can only learn by doing including through caring for our parents/grandparents.
It isn’t just a ‘new’ parent who gives to someone who cannot give back - most parents work and clean and care for our children through adulthood without accolades or appreciation. When they need us we should be ready to show the same patience and understanding- they didn’t ask to be in pain and need your help. It isn’t their fault.
Our society brushes off eldercare in a way other countries don’t. We aren’t taught and rarely teach our children to care for our/their elders. Many parents say they don’t want to be a burden or just assume they will end up in a nursing home(which is a horrible fate as anyone who’s worked in one knows). The reality is that these places are too costly for most to afford, (even Medicaid doesn’t cover them except in specific circumstances). Adults end up I’ll prepped and are taken by surprise- becoming only reluctant caregivers.
No one is born patient and this post perfectly illustrates why we should raise every child with the understanding they are to take care of their aging relatives, to teach this very necessary lesson. If our culture shifts to make this the norm, more companies would naturally begin to become more accommodating as a result. Society should support accommodating an aging parent in at least as much capacity as we do a new baby, (time off, adjusted schedule, etc). There is enormous value (both to society and to individual character) in learning to give without reciprocity.
Those tubs look awesome! I see the commercials on television.
Get him some serious pain relief and then you can work on strengthening the joints.
When I am in pain, I am awful to live with, I tell you that. My PCP has been good to work with me--when I don't hurt, I actually get up and DO THINGS rather than stay immobile.
I'm sure he's rather be able to move without pain than have the stress of constant achey joints. I don't think many people enjoy being cranky, but nonstop pain is so tiring.
Calling his doctor is a good suggestion. Best of luck to you. I hope your dad finds relief soon.
Do you get a break from dad? I hope so. It’s hard being a caregiver. Take care.
Best of luck.