Can anyone suggest resources for starting life over at age 45+?

[prairiewindmomma]

pitter-patter---if I were to make an analogy about your situation, I would say that you've been walking barefoot on broken glass.  For some situations (like pulling a child out of a burning house), we would all encourage you to keep running on the glass to get through that moment of crisis.  In other situations, we would encourage you to stop and pull out the glass and put on some shoes.  We might also tell you to block people from throwing glass bottles in your pathway....and if you can't do that, choose a different road.

Can you tell us more about these kits? At least tell us the general care area? I've had caregiving things before where I've done it rather than nurses (wound care packing, oxygen tank switching, dysphagia feeding) because the nurses cried in frustration.....but sometimes I really did too much if I thought that was my responsibility and not that of the nurse in charge, iykwim. I'm having a hard time figuring out where these kits fall into the big picture scenario above. 

Running on broken glass forever isn't a great long term solution.....hugs!

[Faith-manor]

Pitterpatter, I think the way forward with the care giving is to go not just to the patient and their family, but also to social services and inform them you can no longer provide this service. What is likely to happen is that the person will need hospitalization when this level of care is not provided and then the hospital social worker had to force a solution. Medicare is a pain. They insisted that my mother and I learn to drain my father's chest tube, an unusual chest tube that is not at all the normal one and so many nurses are not trained on them. I refused. I knew it would create a dependency that would wreck my life. Mom did it. But then when she needed to be hospitalized, there was no one to do it. My father's O sats dropped, I called an ambulance, and he was transferred to the hospital where a surgeon who knew how to drain the lung was found who then trained the RN's to do it. I did not sign for any responsibility for him, and in the absence of anyone in the home to live with him and provide this service, Medicare was forced to pay for a nurse until my mother was released from rehab. It was that or he went to a nursing home, and the nurses there learned to do it, or he went back to the hospital. It seemed cruel. But the crueler reality is that I was destroying my relationship with my husband and my children, dropping the ball on homeschooling, and becoming increasingly depressed.

I think, though it may pain you upfront, you need to give the family a reasonable deadline by which they figure this out, or allow the chips to fall where they may. The patient may end up in the hospital, there may be some drama, etc. but you have done a heroic thing for far too long, and now you need to save yourself and your daughter from a future paralyzed by this one thing.

Insurance always wants to claim people are too well for a facility. That doesn't mean this is actually the case or that it can't be forced. Someone who is so fragile, requiring such unique care that another person has to give up their life, a person who cannot advocate for self, and even had issues remaining conscious, is a person who needs a staff. Do not let anyone make you feel guilty for recognizing you have come to the end of your rope on this issue. 

The reality for this patient and family is that they are nuts to have the fate of a medically fragile patient entirely on the shoulders of one person. You could have your own medical emergency and become unavailable by force for an extended period. I was in a car accident 7 years ago that took me out of commission for two months. Something like that, god forbid, could happen to you. 

[BusyMom5]

When I'm in a situation,  it helps me to think about my own kids and what I'm teaching them, and if I'd want them to be in this position- and what I'd tell them if they were.  

1.  If she faced the same medical situation,  would you want her to make the same sacrifices you have?  Would you encourage her to limit her commitment?  One year?  Two?  

2.  Would you want her to remain in an unhealthy relationship "for the kids" even though the kids already know its a mess?  Are the relationships she sees ones that you want her to have?  She is learning how to be in a relationship from watching yours- what is she learning?

3.  When thinking about yourself,  your health, your needs, do you want her to only see you sacrificing yourself for these others?  Is this healthy?  

I think you need to take a step back from the day to day happening around you.  Try to look at it from the outside,  like we are.  Look at what is happening as dependant dysfunction.  DH depends on you, DD depends on you, medical needs person depends on you..... but you have no one to depend on.  That's not healthy.  You are cracking under the strain and I guarantee your DD knows it.  

As for what DD will do.  Well, its going to take you a few months to make a plan.  Shes in 10th grade, and from my experience that's the age kids start going out and doing a lot more in the community.   You are picturing her alone at the house, trying to learn by herself online.  I'm picturing her going to CC classes, volunteering at the library twice a week, or an animal shelter or wherever suits her interests.  I'm picturing her driving herself places, maybe getting a PT job over the summer.   I still think you can homeschool her well!  Especially if you just work part time, and utilize weekends.  If she does a few classes online, that's great!  It teaches independence.   You can check in with her on Monday, Wednesday,  and Friday to check her progress.  

My teens have started CC classes in 11th grade, so you are right there at the end. 

Congratulations!  You've almost made it!!!!  Now is the final transition,  where you start handing her education off to others, snd helping her juggle it all herself.   DE classes have been great for my kids- even the ones that were badly taught!  

[pitterpatter]

I was trying to be a little cryptic to protect my identify. It wouldn't take much for someone out there to figure me out. Why anyone would want to, I do not know. But, these posts do turn up in search results. What I've revealed here over the years would cause family issues that I don't have the bandwidth to deal with.

It's ostomy care. It is an extremely difficult ostomy. Doctors bring other doctors in to see it. Doctors want this person to remove their bag while in the hospital just so they can look at it. And, that's a heck no!! The stoma is recessed (the part that usually sticks out died and had to be cut off). And, there are a number of fistulas involved. New ones can form at anytime and wreak major havoc. The person is also overweight, and the ostomy is in a very bad spot. The more weight the person gains, the less wear time we get out of the bag. (We used to go 7 days on a smaller bag. Now, we go 4, but it really needs to be 2-3 days due to breakdown sometimes, but I don't want to be there changing it that often.) But if I get too greedy with my time, I'm punished. Bags don't stick when breakdown bleeds or oozes. Then, we enter hell.

We use the biggest bag that is available, which there is only one option for. But, I have to adapt the bag because it doesn't work as is. I've had to put hours of research in online finding other supplies from various companies to add to the bag to make it work (and are covered by Medicare). I've had to modify supplies and methods so many times over the years that if this version of the bag quits working, I don't know what I'll do. I am out of ideas and products to try. This person also gets intestinal blockages fairly frequently, which causes all kinds of problems. Things you can't even think of until it happens. We literally had a bag blow off the body when a blockage released. The pressure was that immense. There was one situation where the hospital overloaded this person with fluids and the area around the stoma started seeping. The bag would not stick at all. That means poop everywhere 24/7. That was super hell. I had to beg the hospital to take them back. I had to convince them it was a real medical problem. Luckily, it was, or it would have been all mine to deal with. (Fluid overload can be serious. We didn't know the issue was fluid overload at the beginning, though. The hospital had actually caused the issue when this person was in the hospital a couple days prior with another issue. They were actually negligent.) This is the situation that made many nurses cry. Few nurses want to deal with ostomies under the best of circumstances. No one wanted to deal with this. Some couldn't cope at all. And, it takes way too much time, so it's high stress for them. They have other patients they need to tend.

The person cannot see the stoma when looking down due to weight/size. Using a mirror to change it is difficult. I've trained this person, but I admit, it would be difficult with a mirror with a clear mind...more so with a less-than-clear mind and weak hands. So, I draw on this person's stomach with a Sharpie so when they change it, they can just line up the marks. (Sounds easy enough, but it's not. Putting an ostomy bag on virtually blind is nerve-racking and not at all failproof.) This method only works so long. If the marks rub off, that's a problem. If the person (or myself) forget to draw the marks, that's a problem. The angle the person lies in when I change the bag is different than when they do it. That can be a problem because skin moves and the marks shift. If the holes don't get covered correctly, the bag leaks, sometimes instantly. I have literally not even made it into my house after changing a bag before getting a phone call to come change it again...because something failed. There are numerous ways for a bag to fail. Manufacturing flaws are the worst because then numerous bags that I spent time making may or may not need to be trashed. The bags are expensive to make. Medicare only gives us so much. Hospitals don't even stock the bag size or supplies we use. We have to supply them. I have exceeded the knowledge of most ostomy and wound care nurses. They ask me questions. And, I teach them. (And while I do have some pride in this, it also makes me feel alone and helpless.) We ask and ask for help. We get little. I think there is one nurse that works in a clinic setting that has ever actually helped me beyond the first time this person came home from the hospital with the ostomy years ago. I feel as though my entire family's happiness depends on how well I perform. I know my happiness does.

1 hour ago, prairiewindmomma said:

Can you tell us more about these kits? At least tell us the general care area? I've had caregiving things before where I've done it rather than nurses (wound care packing, oxygen tank switching, dysphagia feeding) because the nurses cried in frustration.....but sometimes I really did too much if I thought that was my responsibility and not that of the nurse in charge, iykwim. I'm having a hard time figuring out where these kits fall into the big picture scenario above.

 

[Mrs Tiggywinkle Again]

Ostomy care is difficult, and it’s difficult to find an in home service that will deal with it.

Fhe truth is that Medicare doesn’t really cover facilities anyway. Your loved one will have to pay for it with any assets they have until assets are gone and then go on Medicaid. Nursing homes will not want to deal with the ostomy(and if the patient is obese they are even more hesitant) but oh well. 
If you took the person to the ER and said they cannot take care of their own needs and I cannot do it anymore, and there is no one else, a facility would be found.  It might not be a facility close to home and it might not be the most high class place, but one would be found.

i have very strong feelings about elderly people expecting family to give up their own lives to care for them.  My mom has done that for her parents and in so doing has one daughter who is now no contact with her and grandchildren she has not even met because they live across the country and she can’t take more than two days off caregiving. Her life has not been pleasant over the last six years when she should have just insisted that her parents find a nice assisted living and then skilled nursing home.  Instead her marriage has greatly suffered and there’s been irreparable damage to her relationships with some of my siblings.

in past decades, the decades our elderly parents remember, caregiving was not this intense or went on this long, because people simply passed away instead of living with chronic diseases.

Its not wrong to save yourself.



 

[prairiewindmomma]

In addition to ^^,  is there a reason why they can't just revise the stoma or just do a straight resection and reconnect? It doesn't sound like the person is in a viable long-term solution.  I'm sure you've considered this, and you don't have to share, but in my own experience....we spent way too long fussing about a port placement and how wonky and hard to access it was, when the solution was super simple---just placing again on the opposite side. Sometimes if a care team sees you making something work, and seeing that you are competent, there's not as much push to find a solution.  

Stop making things work. This isn't a realistic long term solution, iykwim.

 

 

 

[pitterpatter]

This has long been under discussion, and will likely come to a head very soon. It's super high risk. Only one hospital in the area, a very good hospital, will even consider it. And, they may pass in the end. This person's intestines are a mess with a bunch of different issues (hernia too).  Most doctors have never seen anything like it. Even though the intestines are technically set up for reconnection, after removing fistulas, etc., there likely won't be enough to actually reconnect. So, moving the stoma is the only option. Moving the stoma could be great. But, the really fabulous thing about fistulas is that they often seem to find a way to come back. I am terrified. If the surgery sets off a whole new batch of fistulas, they can pop up anywhere around the trauma area at any time...days, weeks, months after this person is released from the hospital. Then, I'm potentially troubleshooting and changing multiple bags. I had to do this very thing before I tracked down the bigger bag. D-Day may come very soon. If this person chooses to undergo surgery, which in many ways I'm all for, then I will be putting my foot down. I can do no more than I'm doing now. And, I really can't do what I'm doing much longer. It's going to be horrible. This person is a narcissist and will be working against me. I'm not without empathy, but I feel like a parasitic twin. And, I have the essential part to the other's life. This person's quality of life is directly connected to me. I can detach and survive. But, I have to live with guilt the rest of my life. To the other person, my sacrifices are small. But, no one knows how all this has affected my family and that my perfect marriage is ending. (I did put my foot down once before behind closed doors to get the person admitted to a nursing home with a different issue, but this person got better enough to return home. Nothing I could do. And, besides the ostomy stuff, it was right. This person wasn't there for ostomy stuff.)

33 minutes ago, prairiewindmomma said:

In addition to ^^,  is there a reason why they can't just revise the stoma or just do a straight resection and reconnect? It doesn't sound like the person is in a viable long-term solution.  I'm sure you've considered this, and you don't have to share, but in my own experience....we spent way too long fussing about a port placement and how wonky and hard to access it was, when the solution was super simple---just placing again on the opposite side. Sometimes if a care team sees you making something work, and seeing that you are competent, there's not as much push to find a solution.  

Stop making things work. This isn't a realistic long term solution, iykwim.

 

[Sneezyone]

I cannot make this decision for you but I can tell you, having been in the position of choosing between the (mental/physical) health and safety of another and the survival of my family and marriage...I chose my marriage and kids. It isn't/wasn't easy but it has/had to be done. I provided one year of intensive support after which time I offered to identify community health resources and facilitate care by becoming a conservator/guardian. Is that an option for you?

[thatfirstsip]

Yes, I think you've clarified the issue for yourself in that post. Your choices are to continue giving your own life to this person, losing your own health and sanity and happiness and marriage and future, or to cut yourself free, live your life for you, and deal with the guilt.

For the guilt to be winning out over the possibility of freedom from the misery you're enduring, it must be a. Immense and b. Very frightening.

There are things that can help you process the guilt, so that you can live in freedom. It's very treatable.

[Jaybee]

39 minutes ago, thatfirstsip said:

Yes, I think you've clarified the issue for yourself in that post. Your choices are to continue giving your own life to this person, losing your own health and sanity and happiness and marriage and future, or to cut yourself free, live your life for you, and deal with the guilt.

For the guilt to be winning out over the possibility of freedom from the misery you're enduring, it must be a. Immense and b. Very frightening.

There are things that can help you process the guilt, so that you can live in freedom. It's very treatable.

The bolded part might be giving you some pause, OP, because you don't want to be a selfish person, unwilling to give of yourself. But in your situation, it isn't a choice between living selfishly or not. It is making wise choices for the other things in the first part of that sentence above: "your own health and sanity and happiness and marriage and future," which isn't selfish, because some of those other things really should be your priorities over sacrificing them for someone not in your inner circle of you, dh, and dd. Short-term emergencies are one thing. Ongoing life-eating sagas are another.

[elegantlion]

1 hour ago, Mrs Tiggywinkle Again said:

Its not wrong to save yourself.



 

This, so much, this. Please remind yourself of this. You are worth having a life that does not require you to walk on glass. 

 

 

And remember to take one day at a time. You will not fix it all in one day but you can do something each day to move forward. 

 

Many hugs to you as you navigate all of this. 

[KungFuPanda]

Is the caregiving THE big issue in your marriage? If you walked away from it tomorrow could you save you marriage, finances, and future? If that’s the case, give 2 weeks notice and rip off the bandaid. If you disappeared tomorrow everyone except your own family would find a way forward without you. You don’t HAVE to sacrifice these last few years at home with your daughter. Just stop. There are other people in the world. It’ll get handled. You really don’t have to forfeit your life so that someone else doesn’t have to manage their own. Who would even ASK that if someone?

I get caregiving. I have a disabled son. It seems like you have taken on a level of medical complexity that should never be handled by a non-medical person. What if you’re preventing anyone from finding a better solution because you and Dr. Google are “handling” everything? 

Edited January 5, 2023 by KungFuPanda

[fairfarmhand]

Choose guilt over resentment. Every time. Guilt can be over come. Resentment will eat you alive and turn you into someone you do not recognize. Ask me how I know this…

[Faith-manor]

19 minutes ago, fairfarmhand said:

Choose guilt over resentment. Every time. Guilt can be over come. Resentment will eat you alive and turn you into someone you do not recognize. Ask me how I know this…

Bingo. BTDT.

Even if the marriage is over no matter what, you have your daughter. Spend what is left of her childhood carving out a future for the two of you.

[Eos]

Edited to avoid sounding like a pile-on, hadn't read the other replies.  Is the worst that can happen is your narcissistic tormentor will die and release you from misery and you will feel guilty? 

Two week's notice sounds like the right amount of time.  Let those who haven't performed this service come up with the next plan, not you.  Find a therapist quick, even one online, that works with codependent issues and tell them you need practical right-now help to extricate yourself from this situation. 

Faith's advice about getting divorced before the FAFSA year is very sound, but you won't have the resources to navigate it if you are still in your current state of mind.  Ending this caregiving relationship seems to me to be the key to your mental health.  Guilt or shame are emotions you can work through afterwards with a therapist.  Please disregard what I suggested about doing elder care above. I love the thought of you working at a university in some capacity - being around young people and ideas will be like a strong new wind blowing you forward.  

Edited January 5, 2023 by Eos

[Eos]

Not quoting but re-reading the post where you describe your terror of possible worse issues with new fistulas - you are suffering from traumatic stress and need it to stop.  You're not a parasitic twin, you're a traumatized survivor.  Please don't teach your daughter that this is normal by continuing in the behavior.  Get therapy and get out, not necessarily in that order.

I'm super impressed you have been able to post this information.  You are truly courageous.  

Edited January 5, 2023 by Eos

[Eos]

You are not being greedy with your time when you wait a few days to do something that is literally ruining your life, you are being courageous.  That tiny flame of "no I don't want to" is the flame of self-worth, self-love, strength.  Because that flame still burns, no matter how small and hidden you keep it, we know you can change this situation. Your fear of discovery by someone close to the situation is so sad.  You have a right to grief and a right to anger over this situation.  Anger is such a healing force for women.  It's not violence.  It's just a feeling that we get to have.

Edited January 5, 2023 by Eos

[pitterpatter]

You are not wrong. I think about this a lot. DD and I have talked about it on a couple of occasions. She has strong opinions about the caregiving situation and that person's narcissist tendencies, but she admits that it doesn't affect her overly much anymore. She's sad for me but okay herself. (I have extricated her from the situation as much as possible, but she has no clue how much different her life could have been.) Apparently, in today's youth culture, the trend is to just drop people that cause you unhappiness. I guess she has heard this from several YouTubers she watches. And while this is true in the extreme, if no one is ever willing to sacrifice a little of themselves for others, then where does that leave us as human beings? What is the point of marriage and friendship? Who can anyone rely on when they're in need? Ultimately, you're not wrong, though. It's been such a gradual thing that only now am I truly seeing all that has been lost. But, there is no going back. I cannot reset that past...only attempt to set a new future.

For what it's worth, I don't walk around the house crying (well, I do, but not where anyone can see). I'm not in hysterics. I don't cry on DD's shoulder. DH and I aren't yelling at each other. I make sure I take time to positively engage with her during and outside of school. And, I encourage DH to do the same. But, she knows DH and my lights are out. She sees his out more than mine. But, we still make a good family. And, she's owed that. 
 

14 hours ago, BusyMom5 said:

When I'm in a situation,  it helps me to think about my own kids and what I'm teaching them, and if I'd want them to be in this position- and what I'd tell them if they were.  

1.  If she faced the same medical situation,  would you want her to make the same sacrifices you have?  Would you encourage her to limit her commitment?  One year?  Two?  

2.  Would you want her to remain in an unhealthy relationship "for the kids" even though the kids already know its a mess?  Are the relationships she sees ones that you want her to have?  She is learning how to be in a relationship from watching yours- what is she learning?

3.  When thinking about yourself,  your health, your needs, do you want her to only see you sacrificing yourself for these others?  Is this healthy?  

I think you need to take a step back from the day to day happening around you.  Try to look at it from the outside,  like we are.  Look at what is happening as dependant dysfunction.  DH depends on you, DD depends on you, medical needs person depends on you..... but you have no one to depend on.  That's not healthy.  You are cracking under the strain and I guarantee your DD knows it. 

.

[pitterpatter]

Thank you, Eos. That is powerful.

6 minutes ago, Eos said:

You are not being greedy with your time when you wait a few days to do something that is literally ruining your life, you are being courageous.  That tiny flame of "no I don't want to" is the flame of self-worth, self-love, strength.  Because that flame still burns, no matter how small and hidden you keep it, we know you can change this situation. Your fear of discovery by someone close to the situation is so sad.  You have a right to grief and a right to anger over this situation.  Anger is such a healing force for women.  It's not violence.  It's just a feeling that we get to have.

[Kanin]

13 hours ago, Jaybee said:

The bolded part might be giving you some pause, OP, because you don't want to be a selfish person, unwilling to give of yourself. But in your situation, it isn't a choice between living selfishly or not. It is making wise choices for the other things in the first part of that sentence above: "your own health and sanity and happiness and marriage and future," which isn't selfish, because some of those other things really should be your priorities over sacrificing them for someone not in your inner circle of you, dh, and dd. Short-term emergencies are one thing. Ongoing life-eating sagas are another.

Anxiety really cripples executive functioning. When you're trying to navigate other very challenging issues, having the anxiety of caregiving is going to seriously compromise your ability to make good decisions in other areas. You might not be able to notice that your decision-making ability is compromised, but it is. 

I might start by making a list of names of people that I need to give my two week (or three, or however long you want) notice. Just having a list can start the ball rolling. 

[Faith-manor]

1 hour ago, Kanin said:

Anxiety really cripples executive functioning. When you're trying to navigate other very challenging issues, having the anxiety of caregiving is going to seriously compromise your ability to make good decisions in other areas. You might not be able to notice that your decision-making ability is compromised, but it is. 

I might start by making a list of names of people that I need to give my two week (or three, or however long you want) notice. Just having a list can start the ball rolling. 

This is a good first step.

Give yourself grace. If you have three people or five or whatever who need to be contacted, call one or two per day so it isn't overwhelming, and set the two weeks notice date for two weeks from when the last phone call will be made so you don't have to face so many conversations in the same day. It may also get easier after your make that first leap. Or if you have email or group text for all of them, you could craft a message, and send it to the entire group. Rip the bandaid off instead of drawing out the pain. Whatever works for you. It is okay if you do not want to have personal conversations, and choose to so something like a group message.

For what it is worth, the only GEN Z adults I know who drop relationships seemingly easily are ones who themselves have personality disorders. The reason it looks suspect to Gen X on the outside is that we don't see what is going on in the undercurrent of these relationships. We are also a generation that was hammered to put up with all kinds of abusive, toxic behavior, and just keep marching along like the energizer bunny, guilt tripped into never ever standing up for ourselves. They have watched, taken notes, have more access to information about abuse, trauma, toxic relationships, etc.and they do.not.play. This is the number one issue employers have with Gen Z. They work to live, but they do not live for work. They will do the job, clock out, and won't kill themselves putting up with unreasonable demands for constant overtime, insane schedules, etc. I have watched Gen Zers step up and do far more for each other than my generation ever did for the people they love. But they only do this when relationships are not toxic. It is different to us when we look at it from our position of not really knowing the situation, the conversations, the nitty gritty of the relationship. 

Edited January 5, 2023 by Faith-manor

[pitterpatter]

Yes, and no. The caregiving situation coupled with a couple of other stressful situations at the same time was a huge catalyst for setting off latent mental issues in DH from some trauma he experienced during childhood. Neither of us knew they existed...not to the extent that they have manifested anyway. There has been a lot of slow change in him. And, it's ongoing. We have never argued or fought about any of the caregiving stuff. That is not our way. It was a situation where we got sucked into something we thought was temporary. We thought/kept hoping things would improve. Things kind of improved, but not really. Not in the way we needed them to. We both have always seen the situation for what it is...a series of very unfortunate events that we can't figure a way out of. We don't really blame anyone. And, maybe that's part of the problem. It would be so easy to get angry and blame and hate people. I think we will always live on the edge of that. But, when you analyze all that has happened in our lives and place yourself in other people's shoes, you can feel their pain and desperateness too. You can see the domino effect of evil people and tragic events in other people's lives from years ago, and how it all has shaped the people in our own lives. And, ultimately shaped us. Can I blame the person I am caregiving for. Absolutely, but I know the evil and tragedy that shaped this person. Can I blame my DH. Sure, but I know the evil from his past that shaped him too. It is what's transforming him now. Ultimately, DH saw a way out of his despair. A way to a different life. Sadly, it doesn't involve me...not in the way it used to anyway. While we used to be perfect for one another in just about every way, we no longer seem to be able to provide what the other needs beyond basic companionship. And while I would give just about anything to have my old DH back, he's not that person anymore. And, I am trying to accept that. But, it's very much like looking into the Mirror of Erised. We are trying to reshape our love and friendship into a different form...for DD's sake, but for our own sakes too, I think. I'm just not sure we're going to be able to manage it. It may end up being enough for him, but I don't think it will ever be for me.

I'm not sure that this exactly fits here, but if I'm not out of the caregiving situation before divorcing and DD goes off to college, I'm afraid I'll never get out. When it's down to just me, it will just be me sacrificing. I'll be the perfect fit to move in full time, won't I? Except that I've never been the perfect fit. I think we all know I'm caregiving for a parent. I did not have a happy childhood. I counted down the days in that house for years. College was my out. When I came back home for the summer after that first year, I sat numbly in my room when I wasn't working...counting down the days until I could go back to college. I never came home from college again...nothing beyond the days right around the holidays. This is not the first time I've been in a caregiving situation with this parent. They were shorter stints, though. And, every time I've gone "home" to help, I've sat numbly waiting to be out again. Having DH got me through. Without DH, I won't make it.
 

13 hours ago, KungFuPanda said:

Is the caregiving THE big issue in your marriage? If you walked away from it tomorrow could you save you marriage, finances, and future? If that’s the case, give 2 weeks notice and rip off the bandaid. If you disappeared tomorrow everyone except your own family would find a way forward without you. You don’t HAVE to sacrifice these last few years at home with your daughter. Just stop. There are other people in the world. It’ll get handled. You really don’t have to forfeit your life so that someone else doesn’t have to manage their own. Who would even ASK that if someone?

I get caregiving. I have a disabled son. It seems like you have taken on a level of medical complexity that should never be handled by a non-medical person. What if you’re preventing anyone from finding a better solution because you and Dr. Google are “handling” everything? 

[madteaparty]

7 minutes ago, pitterpatter said:

Yes, and no. The caregiving situation coupled with a couple of other stressful situations at the same time was a huge catalyst for setting off latent mental issues in DH from some trauma he experienced during childhood. Neither of us knew they existed...not to the extent that they have manifested anyway. There has been a lot of slow change in him. And, it's ongoing. We have never argued or fought about any of the caregiving stuff. That is not our way. It was a situation where we got sucked into something we thought was temporary. We thought/kept hoping things would improve. Things kind of improved, but not really. Not in the way we needed them to. We both have always seen the situation for what it is...a series of very unfortunate events that we can't figure a way out of. We don't really blame anyone. And, maybe that's part of the problem. It would be so easy to get angry and blame and hate people. I think we will always live on the edge of that. But, when you analyze all that has happened in our lives and place yourself in other people's shoes, you can feel their pain and desperateness too. You can see the domino effect of evil people and tragic events in other people's lives from years ago, and how it all has shaped the people in our own lives. And, ultimately shaped us. Can I blame the person I am caregiving for. Absolutely, but I know the evil and tragedy that shaped this person. Can I blame my DH. Sure, but I know the evil from his past that shaped him too. It is what's transforming him now. Ultimately, DH saw a way out of his despair. A way to a different life. Sadly, it doesn't involve me...not in the way it used to anyway. While we used to be perfect for one another in just about every way, we no longer seem to be able to provide what the other needs beyond basic companionship. And while I would give just about anything to have my old DH back, he's not that person anymore. And, I am trying to accept that. But, it's very much like looking into the Mirror of Erised. We are trying to reshape our love and friendship into a different form...for DD's sake, but for our own sakes too, I think. I'm just not sure we're going to be able to manage it. It may end up being enough for him, but I don't think it will ever be for me.

I'm not sure that this exactly fits here, but if I'm not out of the caregiving situation before divorcing and DD goes off to college, I'm afraid I'll never get out. When it's down to just me, it will just be me sacrificing. I'll be the perfect fit to move in full time, won't I? Except that I've never been the perfect fit. I think we all know I'm caregiving for a parent. I did not have a happy childhood. I counted down the days in that house for years. College was my out. When I came back home for the summer after that first year, I sat numbly in my room when I wasn't working...counting down the days until I could go back to college. I never came home from college again...nothing beyond the days right around the holidays. This is not the first time I've been in a caregiving situation with this parent. They were shorter stints, though. And, every time I've gone "home" to help, I've sat numbly waiting to be out again. Having DH got me through. Without DH, I won't make it.
 

You need to do it for your daughter. She cannot keep witnessing this. I’m afraid you will lose her too. You clearly won’t do it for york self but think what message you’re sending to her. I think we are responsive to our children for far more than we are responsible to our parents. 

[thatfirstsip]

But it's not cutting off anyone. It's ceasing to provide unpaid care for which you are not trained, to a degree that would burn out any single nurse (who is trained, and paid) and would normally be done by a team. 

If this doesn't seem qualitatively different to you than no longer speaking to your unsupportive grandmother, I think you should consider that you're in a really abnormal and messed up situation, and your brain is rationalizing to keep you from facing the abnormality of it.

[ScoutTN]

The suggestion about finding a counselor, even an online one, asap, is good. You need another voice helping you to prioritize your life, your Dh and Dd. Someone to help you sift tjoughts and take action.

[Faith-manor]

32 minutes ago, madteaparty said:

You need to do it for your daughter. She cannot keep witnessing this. I’m afraid you will lose her too. You clearly won’t do it for york self but think what message you’re sending to her. I think we are responsive to our children for far more than we are responsible to our parents. 

I agree. And one thing is always come back to as a parent is, "Should I be setting an example of this as acceptable for my children?' And with my dad, that was the straw that broke the camel's back. I realized I was not only burning bridges with my kids, but the messaging was also, " Let others wear you down to a fit of despair", and my heart would be broken into a million pieces if they experienced the brokenness and dyfunction, the exhaustion and resentment that I was experiencing. It had to stop so that they understood that they are people too, spo that the example I set was not so toxic. My primary responsibility is not to parents, but to my children who did not ask to be brought into this world. I needed them to know they should not allow another human to so significantly use and abuse them.

For the sake of your dd, cut that apron string. Set the deadline. Let the chips fall where they may. If money is okay, take your Dd somewhere in a couple months, a spring break trip, just the two of you. Spend some quality mom/daughter time together, no interruption from care giving. Start to make some fresh memories.

I 100% get where you are with your husband. My niece is in a very similar position. She and her husband split amicably, and are friendly, and easy going on behalf of their son. They still care for each other, but they had to let go for both their sakes. It has turned out well, and grand nephew is in a very good place mentally because his parents split in a healthy way. It isn't bad. Don't let anyone make you feel that way. People change. We don't have control over other people, or how other people's histories and trauma plays out in their lives. All we can do is the best we can do, and breaking up in a non dramatic, amiable way is actually quite healthy.

[Kanin]

What happens if you call their doctor and say you cannot keep caring for them? 

My heart breaks for you. You need to get out. 

I hear what you say about not blaming. I also can be angry at people and yet feel empathy for the forces that shaped them into what they are now. If you ask me, that's a good quality... but as others have said, not if it wears you down so you're not even a person anymore. I 100% agree that you have to set an example for your daughter. Not just for caregiving... but in all aspects of relationships. If she sees you advocate for yourself in this relationship, she will have a frame of reference for other relationships, even romantic ones. She won't think it's okay to let a partner walk all over her, because she saw her mom refuse to be treated that way. 

You're obviously a very strong person to be withstanding all of this. So, use your strength in a different way now. It will be hard, but I don't see how it could possibly be harder than what you're enduring now.

[pitterpatter]

I want to thank everyone again. This has been really helpful for me the past couple of days. But now, I'm feeling a bit too overwhelmed. I need to step back and let it all simmer; process. You are not wrong. Many of you have posted similar advice to what I've posted to others here. What I've posted in this thread was beyond my original intent. And, it's truly only half the story. The other stuff I'm not willing to share. And, it's substantial. Thank you, again.  I'm off to take a break.

[Soror]

Hugs @pitterpatter🤗

[Faith-manor]

Lots of love, PitterPatter! 💓💓💓

[mommyoffive]

Sending you lots of love and hugs.  We care about you PitterPatter and just want the best for you.  

[BusyMom5]

Hugs and prayers for peace 💓

[Carol in Cal.]

It seems like there have been little steps, baby ones, one after another after another, that led into this caregiving situation being so extreme.  And at some point there is going to be a Big Catastrophy that puts an end to it, or makes it patently obvious that things have become unreasonable.  Which they have.

One way of thinking about this is that by detaching significantly you are preparing for the B/C.  And that that will make the BC survivable, which at present it might not be.

You’re doing a big, huge thing, that snuck up on you.  It has had very difficult effects on you and on your marriage.

It must be hard to think about saying no to your narc person and having to bear the extreme and almost certainly dishonest negativity that would follow, on top of the marriage difficulties and the impending leaving of your DD.  So I encourage you to think through what you need to say yes to in order to say no to the narc person.  

I think you might need to say yes to insisting that they hire a night nurse or two.  Because you simply can’t do a good job when you’re too tired to think straight or even maybe drive safely.  You might need to say yes to a date night with your husband every week, with someone else trained up to be on call for the caregiving.  Because whether or not you build your relationship to where it was before, you and he are still married and still raising a daughter, and still need some good relationship time right now.  It sounds like he needed you present when you had to do caregiving, and that this effected him more than anyone reasonably could have anticipated—knowing that, it’s perhaps wise to mitigate it with some more time spent together consciously putting aside all the difficulties and giving your brains and hearts a chance to relax.  If you do that, I’ll bet you’ll be more capable day to day.  I think you need to say yes to spending quality time with your DD before she stops associating being with you with having anything positive to experience or even discuss.  And I think you might need to say yes to spending some time on your own development, whether you end up married or not, because for so long you have been poured out only for others.

All this adds up to—you have other very important reasons to ease out of this being a full time hands on on call unpaid job, and into perhaps being more of a coordinator of a team approach to it.  It’s crucial for your good, for your patient’s good, and for your family’s good.  If you don’t do this, a catastrophy will do it for you, guaranteed, and you will, I fear, wish that you had.

[KungFuPanda]

7 hours ago, pitterpatter said:

Yes, and no. The caregiving situation coupled with a couple of other stressful situations at the same time was a huge catalyst for setting off latent mental issues in DH from some trauma he experienced during childhood. Neither of us knew they existed...not to the extent that they have manifested anyway. There has been a lot of slow change in him. And, it's ongoing. We have never argued or fought about any of the caregiving stuff. That is not our way. It was a situation where we got sucked into something we thought was temporary. We thought/kept hoping things would improve. Things kind of improved, but not really. Not in the way we needed them to. We both have always seen the situation for what it is...a series of very unfortunate events that we can't figure a way out of. We don't really blame anyone. And, maybe that's part of the problem. It would be so easy to get angry and blame and hate people. I think we will always live on the edge of that. But, when you analyze all that has happened in our lives and place yourself in other people's shoes, you can feel their pain and desperateness too. You can see the domino effect of evil people and tragic events in other people's lives from years ago, and how it all has shaped the people in our own lives. And, ultimately shaped us. Can I blame the person I am caregiving for. Absolutely, but I know the evil and tragedy that shaped this person. Can I blame my DH. Sure, but I know the evil from his past that shaped him too. It is what's transforming him now. Ultimately, DH saw a way out of his despair. A way to a different life. Sadly, it doesn't involve me...not in the way it used to anyway. While we used to be perfect for one another in just about every way, we no longer seem to be able to provide what the other needs beyond basic companionship. And while I would give just about anything to have my old DH back, he's not that person anymore. And, I am trying to accept that. But, it's very much like looking into the Mirror of Erised. We are trying to reshape our love and friendship into a different form...for DD's sake, but for our own sakes too, I think. I'm just not sure we're going to be able to manage it. It may end up being enough for him, but I don't think it will ever be for me.

I'm not sure that this exactly fits here, but if I'm not out of the caregiving situation before divorcing and DD goes off to college, I'm afraid I'll never get out. When it's down to just me, it will just be me sacrificing. I'll be the perfect fit to move in full time, won't I? Except that I've never been the perfect fit. I think we all know I'm caregiving for a parent. I did not have a happy childhood. I counted down the days in that house for years. College was my out. When I came back home for the summer after that first year, I sat numbly in my room when I wasn't working...counting down the days until I could go back to college. I never came home from college again...nothing beyond the days right around the holidays. This is not the first time I've been in a caregiving situation with this parent. They were shorter stints, though. And, every time I've gone "home" to help, I've sat numbly waiting to be out again. Having DH got me through. Without DH, I won't make it.
 

Get out. You are clearly depressed and your family member is not getting better under your watch. They are getting steadily worse as you have PTSD; more like TSD because you are IN it. They need care that is beyond you. I don’t want to imagine what the home is like. It sounds like they need serious nutritional oversight too. By being the go-to person you are delaying real care and change and destroying yourself in the process.
 

Give notice tomorrow. Be completely out by March. DO things with your daughter. Turn off your phone. Do you want to be an involved grandmother? Do you want to have your own life for a while before that happens? There is no better moment coming down the line. When the pain you’re IN is worse than the pain of change it is past time to act. You’ve DONE more than your part. You deserve to not do this work. 

[scholastica]

Prayers for you, Pitterpatter.

[dirty ethel rackham]

On 1/3/2023 at 1:15 PM, pitterpatter said:

 

I am trying to decide whether to try to pick up a medical-related degree/certification of some sort. Something that is a two-year program, but I just don't know whether I want to do that or stick with the skills I already have. I half wondered whether there will be travel nurse type opportunities for other health positions in the future. I think that would enable me to travel a bit. But then, I don't know whether I'll have the energy for 12-hour shift work, or working overnights, etc.

On 1/3/2023 at 6:12 PM, pitterpatter said:

I'm actually not a nurse. I was thinking about other healthfield-related jobs that I could acquire with a two-year program that might be needed in the same way as a travel nurse.

 

I am so sorry you are dealing with all of this.  My heart goes out to you - that is so much stress!!  I think you have received excellent advice from others here and I pray that you are able to make the changes necessary for your own future and that of your dh and dd.  

Regarding a possible future career ... I went back to school in my late 50s to become a sonographer (ultrasound tech.)  With my youngest child's graduation on the horizon, I was lost and didn't see a future.  An acquaintance who happened to be a career counselor at our local community college invited me to come see her.  I didn't see myself going into "health care" - I wasn't sure what I wanted, but, at my more advanced age, wanted something with a good return on investment of time and money.  She directed me toward the allied health fields and sonography intrigued me and met my requirements.  There were lots of other programs that I could have taken.  So, that might be a starting place ... see a career counselor just to explore options, even if you don't end up going to school there.

Regarding the 12 hour shifts, working overnights ... not every job health-care job is like that.  I've never had a job that had 12 hour shifts - they were available, but I didn't want that.  I did my stint taking overnight call at a hospital job, but I lasted less than a year. There are more daytime jobs or rotating shifts that don't go into the late hours.  There are travel opportunities in many different kinds of allied health fields which pay very well, but you usually want to get some experience before jumping into that.  I know several travel sonographers who make bank.  They can be picky about what contracts they take.  

[Laurel-in-CA]

Just a few thoughts from my personal experience -- may or may not be valid for your situation, I know.

About your daughter learning at home alone...I've had one kid go full-time to the CC at 16...he thrived. He was so very ready for a bigger pond, not to mention that he was done learning from me and I couldn't teach pre-calc. You may find that online classes and CC in person classes help her get ready for the next step to f/t college.

When covid hit in 2020, dh was laid off and I had to go back to work and youngest dd was in her senior year. She did her whole senior year online at the CC and worked pretty much independently while I was working from home and dh was job hunting (for 10 mo!). Her only complaint was that she would much rather have done in-person classes, but she did really well. Again, she was ready for the bigger pond.

Finally, someone mentioned eldercare as a possible job for you. I have a dd who does elder care and even with a CNA it doesn't pay that well, either in a facility or working for an agency. With your current struggles, it would probably be healthier to focus on something else; if I were you I would be so done with that level of care. DD left that field because she was working in an elder care facility and had 3 patients die in a week. She just found it too overwhelming.

I agree with giving notice as quickly and thoroughly as you can so you can begin becoming more independent and forward-looking. Blessings on you! Major transitions are always so hard.

[ktgrok]

On 1/4/2023 at 5:55 PM, Mrs Tiggywinkle Again said:

 

i have very strong feelings about elderly people expecting family to give up their own lives to care for them.  


 

This. There is a HUGE difference between say, having a sane, mentally and physically competent elder move in to your home because they can no longer do lawn/house upkeep and maybe are not comfortable driving anymore, and doing actual nursing care 24/7. The first is indeed admirable and if family relationships are good probably desirable in many cases. The second is NOT desirable, and more importantly, NOT feasible. A care facility has shifts of people, not one working 24/7 or on call 24/7 365 days a year! Because that isn't safe!

My mom was a nurse, and worked in geriatrics her entire career - from candy striping in highschool to retirement - the last decade or so as an activities director. She LOVES geriatrics. When my grandmother was no longer able to live at home due to alzheimers my mom did initially move her into our home - and grandma had a trust set up to pay her a reasonable salary for it so mom could quit her job to do it. BUT my mom still had her go to an adult daycare place 3 days a week so mom got a break (and grandma got more mental stimulation) AND when things got to a certain point she did know it was more than she could do and moved grandma to a nursing home. We were lucky in that my aunt (mom's sister) worked in a nursing home at that time, a good one, so we moved grandma there. 

Mom knew, having worked in care facilities, that there was a point where it wasn't safe, because grandma required 24/7 care, she needed someone on night shift, and no one person can do that. And she needed two people to help move her, etc. 

Mom told me and my sister VERY firmly that if/when she is in such a state she insists we put her in a nursing home, and do NOT try to care for her ourselves. 

[katilac]

On 1/4/2023 at 2:37 PM, pitterpatter said:

 The other thing I don't get is that if I'm working full time as a single mom, who is supposed to homeschool my daughter? All I see in that is her being alone for hours on end and miserable...a situation where she'll be at high risk for becoming depressed herself.

In a truly precarious financial situation, which it sounds like this is going to be, I'd be working full-time ASAP and putting dd in school. 

I'd also be moving from the rural area to somewhere with more opportunities. Now, not when dd goes off to college. You can try to stay close enough to simplify co-parenting as much as possible, and you don't need to take official action on anything else to do these things. 

This will also push the caregiver necessities to a hard decision point, which is probably what you need. You will need to move to support yourself and dd at some point, and doing it now just prevents the inevitable crisis that will develop and need immediate attention and decisions. 

You need to be out now, for both practical and emotional reasons. 

[Faith-manor]

1 hour ago, katilac said:

In a truly precarious financial situation, which it sounds like this is going to be, I'd be working full-time ASAP and putting dd in school. 

I'd also be moving from the rural area to somewhere with more opportunities. Now, not when dd goes off to college. You can try to stay close enough to simplify co-parenting as much as possible, and you don't need to take official action on anything else to do these things. 

This will also push the caregiver necessities to a hard decision point, which is probably what you need. You will need to move to support yourself and dd at some point, and doing it now just prevents the inevitable crisis that will develop and need immediate attention and decisions. 

You need to be out now, for both practical and emotional reasons. 

Also, I do know many moms who do work while also homeschooling at the high school level by moving their kids to community college classes online or in person if old enough to drive, and then have some electives that hit they manage, grade, answer questions evenings and weekends etc. but are self I study for many assignments because high school students can be more independent with non-technical things like art history, many of the social sciences, etc. There are a lot of resources out there. The main thing is to have strong instruction for foreign language (and often times that is best being outsourced to a college anyway), math, math intensive sciences like chemistry and physics, and English writing. Even if you did part time to help saving money for the inevitable move, it makes it easier to move into full time work once she starts college because you have recent work experience on your resume`. The hard thing can be working out extra curriculars, but maybe dh can help with the driving for that or a family friend or another parent involved with the extra curricular.

[katilac]

3 hours ago, Faith-manor said:

Even if you did part time to help saving money for the inevitable move

This reminded me of an online job OP might want to consider: online test scoring (and you can search for positions using those exact words). I've done this for Pearson in the past, but there are other companies as well. 

The pay isn't great, like $12/hour, but it's seasonal and can be done from home, provided you have a good internet connection. They do have bonuses if you work enough regular hours and hit certain bench marks. They like you to do at least 20 hours per week and I think they prefer if you do more. 

They have different subjects, and they let me list preferences at the beginning, but all they ever give me is math, lol. 

They do have scoring centers along with the online positions, and there is at least some room to grow if you like it (reviewers, supervisors, etc). 

Customer service and data entry are two other areas that have a lot of remote work. 

 One reason I think you should consider starting now is that it can take much longer than you might imagine to get your feet under you, and you don't want to feel pressured to take something or stick with something.  Things moved really slowly when I first started to switch from contract work to outside employment. Once I had recent employment to list (versus my contract work, which was actually more complex), I started getting a lot more hits. I'm sure it has something to do with the resume bots and me not wording things correctly. 

Then I tried several different things before finding what suits, because it can be hard to tell when you've been out of the game for a while. Bouncing around a bit didn't seem to lower my hits; having recent employment to list seemed to be the crucial aspect. 

Edited January 8, 2023 by katilac

[Laurel-in-CA]

Also, linkedin has lots of short videos with hints on the job hunt; watching and posting help you show up more in online searches and such. Connect to the people you know and build a network on there if you can. You can also use it to research companies by name and see their job postings. Indeed is also a useful place to look at job postings. These were the primary tools dh used for job hunting after his last 2 layoffs. You may not be ready to apply anywhere yet, but you can start getting familiar with the new ways to job hunt.