Caretaking, anticipatory grief and how to stop living in the future

[Patty Cakes]

It's actually a very common TMS situation - caretaking for someone who has wronged you or has brought up/triggered old wounds. The conflict in feelings and emotions often contributes to symptoms (and it often leads to feelings that we are ashamed of deep down). There's a story I remember from a book where a man (who was a doctor) had to care for his father whose failing health was due to obesity and alcoholism. His father had abused him physically as a child when drunk. His pain began shortly after he was made to take care of him.

Part of him deep down wanted revenge on his father physically, another part of him despised himself for wanting to help his father and win his approval. By allowing these conflicting feelings and understanding that they were just feelings, not necessarily things he needed to act upon...

"Eventually he was able to behave dutifully without feeling like a sellout. As his ability to tolerate his feelings increased, his pain gradually subsided" - "Psychophysiologic Disorders" (2019) - pg. 240.

It's all about allowing those conflicting feelings without guilt. The man above was able to do that above and that was his way out of the pain. I wouldn't be surprised if it were similar here - no feelings are off limits and they are all ok

Thank you for sharing this. That line about the 'hair shirt' (had to look it up--never heard that before) hits so close to home. I've had some pain for years, but over the last couple of years, as my husband's illness escalated, the pain got worse and shifted sides. Sometimes multiple times a day. Looking back, I realize my body was carrying emotions and exhaustion that I didn't even realize. All I knew is that I was in physical pain. Just reading this and understanding that I don't have to fear the feelings—that I can just tolerate them without guilt—brings so much relief. Thank you for putting it into words.

 

[Patty Cakes]

I've got another question. I"ve always had very vivid dreams. SInce doing this work and even prior, my dreams have much to do with something I journaled about or some truths I've uncovered. They usually involve people I've worked with, that I haven't seen in years. For instance, last night my dream was about two women I worked with for years. WE were all together but one was tormenting me, saying awful things about me. I told her to stop. The other woman said, oh just forget what she said and make up with her. I said, she hurt me and I'm not going to act like she didn't hurt me and I'm not talking to her. I can typically connect the dreams to something I journaled or thought about. Does this happen when u are doing this TMS work? Is it a good sign or not, that I'm processing all of this through my dreams? IT happens most every night.

 

[Cactusflower]

I've got another question. I"ve always had very vivid dreams. SInce doing this work and even prior, my dreams have much to do with something I journaled about or some truths I've uncovered. They usually involve people I've worked with, that I haven't seen in years. For instance, last night my dream was about two women I worked with for years. WE were all together but one was tormenting me, saying awful things about me. I told her to stop. The other woman said, oh just forget what she said and make up with her. I said, she hurt me and I'm not going to act like she didn't hurt me and I'm not talking to her. I can typically connect the dreams to something I journaled or thought about. Does this happen when u are doing this TMS work? Is it a good sign or not, that I'm processing all of this through my dreams? IT happens most every night.

That's the subconscious for ya!
We work things out in our dreams - I don't place too much importance on it all. I have dreams where I'm spoken too and been treated poorly my whole life. I used to be frightened of them. Now I realize that it's just my inner 2 year old that can come out in my sleep, but awake and conscious my adult self (and like you, even sometimes dreaming) takes over and rationally expresses my current desires. Love that you are practicing your boundaries in your sleep! I wouldn't judge weather it is "good" or "bad" or even a "sign", it just is. Things can be what they are without us chewing them over (and over and over, and then worrying about that, and then thinking more about that - the mind is a funny thing!

 

[Patty Cakes]

That's the subconscious for ya!
We work things out in our dreams - I don't place too much importance on it all. I have dreams where I'm spoken too and been treated poorly my whole life. I used to be frightened of them. Now I realize that it's just my inner 2 year old that can come out in my sleep, but awake and conscious my adult self (and like you, even sometimes dreaming) takes over and rationally expresses my current desires. Love that you are practicing your boundaries in your sleep! I wouldn't judge weather it is "good" or "bad" or even a "sign", it just is. Things can be what they are without us chewing them over (and over and over, and then worrying about that, and then thinking more about that - the mind is a funny thing!

Thanks! Blood Moon suggested a book called Rewire Your Mind Without Willpower. I never knew the mind was so powerful. The book has been so helpful.

 

[Patty Cakes]

Directing this post to Blood Moon and welcoming any thoughts from anyone who understands.

I’ve been reading your story, and it resonated so deeply with me that I felt like I needed to reach out. Like you, I know what it feels like to have a hyper-vigilant nervous system that traps you, and I understand the weight of caring for an aging loved one.

Right now, I am struggling so much with anticipatory dread. Sunday I have to go to a wake for a cousin. I wasn't close to him, but I want to pay my respects, and I’ve already set a hard boundary that I am only going to the wake for a short time—no mass, no burial, because I know my limits.

Even so, I am terrified. The truth is, I feel like I am currently surrounded by loss and mortality. My older guinea pig, Tot, is struggling right now. Jeff, my husband, has significant health issues and medical crises. And just yesterday, my elderly mother called to tell me she nearly choked to death on her soup.

It feels like death and loss are breathing down my neck from every single direction. When I think about walking into a funeral home on Sunday and seeing a casket or an urn, it feels like an avalanche of grief that I just don't know how to survive. I have spent my whole life anticipating events, worrying about them days or weeks beforehand, replaying conversations afterward, and living in fear. I am just so tired of being afraid.

I am trying your practice—catching the loop, breathing in, breathing out, and grounding myself—and it helps in the moment. But I wanted to ask: how do you deal with that overwhelming dread of an upcoming event when your nervous system feels like it's already maxed out? How do you stop your mind from fast-forwarding into absolute terror?

 

[BloodMoon]

One thing that might help when you actually get to the wake is to have something very simple that you can do without anyone noticing.

If you start to feel overwhelmed, rub the tip of your index finger gently in a circular motion against the tip of your thumb. Concentrate on the sensation of it. At the same time, when you're not having to talk with anyone, you could concentrate on your breathing. You don't need to try to change your breathing, just notice it. It gives you something physical and immediate to anchor your attention to.

Anchoring yourself like this can bring the fear down, and can help stop that horrible escalation where one fearful thought leads to another and another.

You could also keep a little 'touchstone' in your pocket to hold onto if you think you might find that helpful. A touchstone can be, say, a smooth stone, a piece of jewellery, a coin, or anything with a texture you find reassuring.

And you could try imagining a protective cage of golden light around yourself. Not something that shuts you away, just something that gives you a bit of space between you and everything that's going on. You can see what's happening, but you don't have to absorb all of it.

Before Sunday, when you notice yourself already imagining the wake and how awful it might feel, I'd try saying to yourself, “It's not happening now” and turn your attention to something else whilst lengthening a few of your out-breaths. Because it isn't happening now. You don't have to experience it in advance. You can also use your touchstone, or gently rub the tips of your index finger and thumb against each other.

You don't have to try to make yourself not feel frightened. I think that can actually add another layer of pressure. The anchoring is there to help bring the fear back down when it starts to rise.

And you've already given yourself permission to leave when you've had enough. That's important too.

Can you stand another book recommendation?!

It's called 101 Ways to Find Calm: How to Use Your Body to Soothe Your Mind by Rebekah Ballagh. Below is something from the book. You can do the full exercise while you're out of the house, but you can practise it at home first and remind yourself of it when you're out, if you find it helpful.

 

[Patty Cakes]

One thing that might help when you actually get to the wake is to have something very simple that you can do without anyone noticing.

If you start to feel overwhelmed, rub the tip of your index finger gently in a circular motion against the tip of your thumb. Concentrate on the sensation of it. At the same time, when you're not having to talk with anyone, you could concentrate on your breathing. You don't need to try to change your breathing, just notice it. It gives you something physical and immediate to anchor your attention to.

Anchoring yourself like this can bring the fear down, and can help stop that horrible escalation where one fearful thought leads to another and another.

You could also keep a little 'touchstone' in your pocket to hold onto if you think you might find that helpful. A touchstone can be, say, a smooth stone, a piece of jewellery, a coin, or anything with a texture you find reassuring.

And you could try imagining a protective cage of golden light around yourself. Not something that shuts you away, just something that gives you a bit of space between you and everything that's going on. You can see what's happening, but you don't have to absorb all of it.

Before Sunday, when you notice yourself already imagining the wake and how awful it might feel, I'd try saying to yourself, “It's not happening now” and turn your attention to something else whilst lengthening a few of your out-breaths. Because it isn't happening now. You don't have to experience it in advance. You can also use your touchstone, or gently rub the tips of your index finger and thumb against each other.

You don't have to try to make yourself not feel frightened. I think that can actually add another layer of pressure. The anchoring is there to help bring the fear back down when it starts to rise.

And you've already given yourself permission to leave when you've had enough. That's important too.

Can you stand another book recommendation?!

It's called 101 Ways to Find Calm: How to Use Your Body to Soothe Your Mind by Rebekah Ballagh. Below is something from the book. You can do the full exercise while you're out of the house, but you can practise it at home first and remind yourself of it when you're out, if you find it helpful.

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I very much appreciate all of your suggestions. That energy shield is brilliant, especially when dealing with my husband. I think I tend to absorb all his negative energy, especially when we're sitting in the same room. I will use your suggestions tomorrow. I'm so glad I could finally share my fears with someone who truly understands. I never felt I could share my thoughts,the way my mind operates, since I thought I was the only one that had a mind like mine. IT feels good to be able to say it, to someone like yourself. That knows what it feels like. Thank you so much.

 

[BloodMoon]

I very much appreciate all of your suggestions. That energy shield is brilliant, especially when dealing with my husband. I think I tend to absorb all his negative energy, especially when we're sitting in the same room. I will use your suggestions tomorrow. I'm so glad I could finally share my fears with someone who truly understands. I never felt I could share my thoughts,the way my mind operates, since I thought I was the only one that had a mind like mine. IT feels good to be able to say it, to someone like yourself. That knows what it feels like. Thank you so much.

I'm happy to try and help . I believe you are well on your way to feeling generally better. Why? Because you're very open to new ideas, you’re open to trying them out and seeing what will work for you.

 

[Time2be]

@Patty Cakes, you have a very good insight into how you feel! That can help you tremendously. My impression is you are not a person who sugar coats things. When read your post, I thought, well, I would also feel trapped. It’s a lot you have to deal with. Very simply: do you take breaks from care giving? Experience something joyful? There is a brighter future, of course, but yes live in the present. To have joyful moments in the present might help you to not sink into dreadful anticipation.

 

[Patty Cakes]

@Patty Cakes, you have a very good insight into how you feel! That can help you tremendously. My impression is you are not a person who sugar coats things. When read your post, I thought, well, I would also feel trapped. It’s a lot you have to deal with. Very simply: do you take breaks from care giving? Experience something joyful? There is a brighter future, of course, but yes live in the present. To have joyful moments in the present might help you to not sink into dreadful anticipation.

@Patty Cakes, you have a very good insight into how you feel! That can help you tremendously. My impression is you are not a person who sugar coats things. When read your post, I thought, well, I would also feel trapped. It’s a lot you have to deal with. Very simply: do you take breaks from care giving? Experience something joyful? There is a brighter future, of course, but yes live in the present. To have joyful moments in the present might help you to not sink into dreadful anticipation.

Thank you so much for your kind words. I really appreciate you taking the time to write me.

I've had a very tough few days. My husband ended up back in the hospital because he cracked his pelvis, and now we're looking at him going into a rehab facility. He has been in all the local rehabs before, and they won't take him back except for long-term care, which brings a whole mountain of new worries. On top of everything, because he's on dialysis and has so many medical complexities, everything is up in the air. To add to the heartbreak, I lost one of my guinea pigs, Tot, on Friday, so it has been an intensely difficult time.

You hit the nail on the head: I have a tremendous amount of uncertainty about the future—about what is going to happen even two days from now—and it wears heavily on me. I am someone who likes to be prepared and have things settled in my mind; uncertainty is a huge trigger for my stress. My physical pain and my right side are flaring up today, I think just from holding onto all of that stress and not knowing what life is going to bring next.

One of the eagles, Blood Moon, suggested a book called Rewire Your Mind Without Willpower. It's been incredibly helpful to me. I haven't read the whole book yet, but it helps me understand how my mind operates with the worrying, the anticipation, and going over and over the same thoughts. The tips, like using a worry stone and other grounding techniques have really helped keep me anchored. I hope they can help you too. But even with those tools, it takes time to stop the worry, the uncertainty, and the anticipation of what might happen. In the past, I thought I was the only one whose mind operated the way mine does.

You are so right about the present moment. I am trying to carve out little pockets of time for myself where I can find some joy and keep from sinking into dreadful anticipation. Thank you again for listening and understanding—it means more than you know.

 

[Adam Coloretti (coach)]

To add to the heartbreak, I lost one of my guinea pigs, Tot, on Friday, so it has been an intensely difficult time.

I'm sorry for your loss I know how difficult it is to lose pets.

 

[Patty Cakes]

I'm sorry for your loss I know how difficult it is to lose pets.

Thank you very much. I"m so thankful he lived to almost six years old.

 

[Patty Cakes]

I wanted to share something I've been thinking about while dealing with all this heavy stress, grief, uncertainty and pain over the last few days.

For a long time, I used to try to force positive thinking when my anxiety started spiraling. People always say "stay positive" or "try to look on the bright side," but honestly, the more I tried to do that, the worse my brain felt and the more my body hurt and my stress worsened.

After reading some of Rewiring Your Mind, and knowing that looking on the bright side or think positive doesn't always work with people like myself, I've started doing the exact opposite. I just looked right at the worst-case scenario.

Instead of running away from all the "what ifs," I let my mind go there and ask: Okay, what’s the absolute worst thing that could happen, and how would I handle it?

And bringing that fear out into the light actually took the blind terror away a bit. It turns this giant, scary monster of what if's into something concrete. But the biggest thing is--when reality doesn't turn out nearly as bad as that worst-case picture in my head, maybe I can actually feel a real sense of relief instead of constantly bracing for the next shoe to drop. I still am uncertain about what will happen to my husband, what rehab he will go to, will we have to spend hundreds or thousands of dollars for rides to dialysis, and on and on. MY lil guinea pig passed on Friday morning and I had to deal with his death, picking his little body up, putting him in a box and taking him to the vet was something I didn't think I could do but I did. I rehearsed scenarios in my mind, that were terrifying. No question it was extremely difficult but I did what needed to be done, despite my fears.

Stopping that internal fight of trying to force myself to be positive when things are genuinely so hard has taken some pressure off me. Has anyone else found that letting yourself look at the worst case scenario actually calms the panic down instead of making it worse? I still feel the pain today but it's not as bad as I thought it would be, given all what's happened today.

 

[Cactusflower]

I think we're trained to think "positive" in a false way. We also tend to think in negative "what if's".
What If: I can handle it?
That is actually a positive what if and a positive thought without being false and fake nice.
Similarly to goodism and people pleasing - we're taught they are genuine when they are fake nice.

I'm sorry you are having to deal with so much.
As for the worrying about future planning, if the hospital or facility of any kind he goes to has a social worker, sign up to speak to one so you can learn more about navigating the system, what you might qualify for in the way of assistance of any kind. If you live in a city, there might be some community service that can offer you support too where you live. A social worker can also help your family make difficult decisions. I think part of the heaviness of what you are going through is the fact you need some kind of support.

 

[Patty Cakes]

I think we're trained to think "positive" in a false way. We also tend to think in negative "what if's".
What If: I can handle it?
That is actually a positive what if and a positive thought without being false and fake nice.
Similarly to goodism and people pleasing - we're taught they are genuine when they are fake nice.

I'm sorry you are having to deal with so much.
As for the worrying about future planning, if the hospital or facility of any kind he goes to has a social worker, sign up to speak to one so you can learn more about navigating the system, what you might qualify for in the way of assistance of any kind. If you live in a city, there might be some community service that can offer you support too where you live. A social worker can also help your family make difficult decisions. I think part of the heaviness of what you are going through is the fact you need some kind of support

 

[Patty Cakes]

Unfortunately I've been dealing with the medical system with him for over two years. The system is totally broken and beyond frustrating. he will be going to a rehab today or tomorrow for at least a couple of months. I reached out to our local senior center for any support group for caregivers and I haven't heard anything yet. I don't have to do anything physical for him when he is home but it's just the emotional toll that it's taken on me. Just the uncertainty from day-to-day is hard. I've been doing the suggestions that blood moon had written me about and they've been very helpful, as has the book about your mind. Yes maybe I could say I can handle it but frankly I'm having a hard time in doing so. the medical system just isn't working and I can't get the proper help that he needs, especially when he comes home. It's been a frustrating cycle that I feel caught in ever since he got really sick. so I guess my thinking is that for two months or at least I hope so, they'll keep him in the rehab but my mind goes to what happens when he gets home? This is basically the cycle I get caught up in, all those what if's. I've always been a planner, prepare myself for the future, as best I could. With my situation now, I've lost any sense of that and that's been very stressful. But I guess in using these techniques like the worry stone and continuing my reading of Sarno and the book about the Mind, have been incredibly helpful and I will continue to do so. I've never been one to just live for today and thats sort of what I've been having to do. I just hate uncertainty and that's been my life the past 2+ years. But I shall continue on and do the work. I've noticed that my pain doesn't flare up to an 8 or 10 anymore like it used to so I know that these techniques and the work I'm doing is working. I use to blame and link my pain on physical things that I did. I no longer do that anymore, which is HUGE for me. I noticed when I'm stressing about something, I will suddenly feel that right sided pain. And I'm catching myself when that happens and I'm not fueling the fire by worrying more about it, which in the past flared my pain up even worse. So I can see for myself that I'm making progress with this TMS pain. That's not to say that I don't have the pain but it's not at the level that it was. So I'll continue doing the work, using the tools that I've been taught. . But I guess just being in that kind of caretaking role, dealing with hospitals, rehabs, doctors has been extremely stressful. I thank you all for your help, your tools and all the advice that you all have given me. I so appreciate it.

 

[Cactusflower]

Patty Cakes: Have you searched to see if you have a Caregiver Resource Center in your state? There is one in my state and it has a few centers with caregiver support groups but also hosts weekly virtual groups.
There are other groups that meet through our County social services network, VITAS healthcare offers groups in a variety of states, Kaiser offers some groups ... it seems there are options outside of hospitals/hospice/senior care facilities in certain places.
If your husband is making decisions for himself that aren't always in his best interest you may need to speak to the facility about their impression of his competency. This is also something you could discuss when he visits emergency rooms etc. It would depend on the Doctor if you can get engagement, but some might be willing to help.

 

[Patty Cakes]

Patty Cakes: Have you searched to see if you have a Caregiver Resource Center in your state? There is one in my state and it has a few centers with caregiver support groups but also hosts weekly virtual groups.
There are other groups that meet through our County social services network, VITAS healthcare offers groups in a variety of states, Kaiser offers some groups ... it seems there are options outside of hospitals/hospice/senior care facilities in certain places.
If your husband is making decisions for himself that aren't always in his best interest you may need to speak to the facility about their impression of his competency. This is also something you could discuss when he visits emergency rooms etc. It would depend on the Doctor if you can get engagement, but some might be willing to help.

I will definitely look into that. When he was hospitalized a couple of weeks ago, he said he was going home, despite the doctors advice that he needed to stay. I was told he was competent and he could decide. I refused to go pick him up but had to argue with him, to get him to stay. It's things like this that ups my stress and thus my pain.

 

[Adam Coloretti (coach)]

Stopping that internal fight of trying to force myself to be positive when things are genuinely so hard has taken some pressure off me. Has anyone else found that letting yourself look at the worst case scenario actually calms the panic down instead of making it worse? I still feel the pain today but it's not as bad as I thought it would be, given all what's happened today.

Yes and I think this is a great shift! Making the worst case concrete and then being able to compare what actually happened to it (which 99% of the time isn't as bad as what our minds speculate) - then that thought of "huh, that wasn't as bad as I thought" can lead to "what other things might I be making bigger than they are in my head?". This plays out a lot with chronic symptoms, especially returning to physical activity (if a person can have an experience with an activity they've been avoiding that wasn't as bad as they thought, even if it causes symptoms, that can be a huge turning point).

 

[Adam Coloretti (coach)]

I've noticed that my pain doesn't flare up to an 8 or 10 anymore like it used to so I know that these techniques and the work I'm doing is working. I use to blame and link my pain on physical things that I did. I no longer do that anymore, which is HUGE for me.

Both massive pieces of progress! It happened like that for me also, the upper ends of the pain scale were removed, even though I still had consistent symptoms - I'm excited for you that it's following a similar path for you