Kieron

Thanks Dee and Gwen. You've both pointed out the very same concerns I have in the back of my mind. The outdoor/landscaping stuff I am handy with and will have a hard time letting go of because I put so much of myself into it over 20 years that I've been here. Unfortunately there are interior things that I don't know how to do and they will eventually need replacing as they wear out or deteriorate. And big decisions like the kitchen. which is not ideal, but is bearable. However if I stay then I will have to have it remodeled, which makes me exhausted just to think about... hiring contractors, making decisions, spending money, arranging utilities/water & electrical work, choosing new appliances, deciding on colors and styles, etc etc ETC! All while trying to work full-time. Taking calls about this issue or that one, while trying to focus on work makes me want to throw up. Did that back in 2013 and it was a nightmare. There's no one really to share it with, to commiserate with, anymore. Ugh. yeah, it just becomes more and more clear that it's time to think about where to go next. Here since 1999 so pulling up those roots is going to be one painful process.

Another to-the-point gem that says so much. 😊 I'm going to remember that one, Marg.

Interesting that some of you are mentioning anniversaries. I'm 2 years away from Number 5. The third anniversary is bearing down on me like a locomotive (March). Incomprehensible that it's been this long, when it seems like it all came crashing down around me last month or so. Maybe I'm feeling some kind of echo in time and space of what was going on at this time in 2017. It's been the catalyst for a lot of thought the last few days. Before bed one night, I sat and just looked at a chair where he used to sit. I'm starting to think there's no point in continuing to live here in this big old house where he'll never be again. It's big enough for a growing family, but it's hard to part with it. I could try roommates and such to make it work out, but people are not trustworthy much anymore, and I've been ripped off enough for several lifetimes. I've been slowly getting rid of "stuff" over the last 3 years and am ready to give away a lot more once warm weather arrives. I had hoped to make a little money off some of the better things but I've found people just want it for cheap --or better yet, for free. I'm more inclined than ever to just hand it all over and say "Here, it's yours, enjoy." The primary problem is, where would I go? I haven't figured that one out yet. And with the instability of the times, it's hard to say whether I should stay or leave. 😐

Tough crowd (of one!), Marg!

This is a thing of beauty and I think we here are all privileged to be able to read this love letter.

OMG I would buy that in a heartbeat, Tachi. That's gorgeous.

I hear about this kind of thing all the time at work. Infuriating. I have clients who are supposed to get personal care attendant services or other support workers who will take them places they need such as grocery shopping. These workers are *supposedly* to help them live at home independently and many times, the worker doesn't show or does the bare minimum, or has a bad attitude and doesn't return the next shift. Or the visiting social workers say they will visit but then don't keep their promise. It's too easy to blow people off. Agencies can't keep employees, don't pay them enough, or otherwise could care less. it's an epidemic and it's disgraceful. One day those no-good no-shows will be in the same situation and wonder why no one is helping them.

Kay, Dee and Gwen are all correct. These are early days for you and it's going to be like this. Everything you're describing is normal, natural and understandable, and I'm sure we all relate to it and remember it vividly. I do want to thank you for your remark about Susie trying to alienate you in hopes you would give up being her caregiver. I never thought of that particular perspective. Without going into detail, I kind of wonder if this is what happened to me.

George, I don't want to say too much here for lack of knowing your situation but I think you are right in saying: I am a skeptic by nature so I don't automatically accept what anyone tells me. I have done some research and listened to/spoken with knowledgeable researchers at conferences who don't follow the "party line" but are true scientists always asking "why? how? what if?" When money, funding and lobbying/influence all come into the picture, then I automatically become skeptical. I think the walking is a smart idea. I need to do more of it myself. 😄 The tai chi is helping my balance enormously and I plan to keep doing it.

Gwen, it's probably the state I live in but we have services like this all over the place. We have a very extensive care network in Minnesota and everything you describe wanting/needing and what Karen mentions (the council on aging, senior services, etc.) is all available here. Of course you have to qualify for it, and it's not free (co-pays and such charges), but it's there and I know exactly how to start going about getting it. It's gotten much harder to access in recent years, due to many people flocking here for help, but at the same time, it's so disappointing when I hear about other regions that simply do not have the infrastructure in place to do things that we kind of take for granted here.

Hello, I too am sorry about what you have experienced. Having been a caregiver for as long as I was, I can say authoritatively that the feelings you have, this "dead stop" as you put it, are real and valid and understandable. I lost 10 pounds in the last month of his life, and it was very strange in the house after he was gone, almost eerie with the sense of emptiness both inside me and around me, with the awareness of things no longer needed to be done. And the feeling of being petrified about facing life without him has only now, after almost 3 years, eased a little. As others have said, it's all very fresh and raw for you right now, and it's going to be that away for a good while, I'm afraid. But I think the urge to write and compose is going to be your strength, as Marty says. I wrote tons of poems and essays in the aftermath and I think some of them are quite good (being my own worst critic means that if I like it, it must be pretty darn good). I think it's said, "You must suffer to write." I found that to be true. ❤️

Ugh, you have my sympathy. I've worked in such places ages ago starting out in my career, and then supported Mark through two "rehab" centers and fought with staff and aides repeatedly to make sure he got what he needed. It was appalling that they sent in tiny 16 year old girls to "help" this big adult man try to sit up in his bed when he had no muscle tone. They're usually overworked and understaffed, and short-tempered, burned-out and hopeless, just trying to get through the day and go home. To say nothing of the real bad ones... I remember a few times encountering other patients or residents waiting hours for a simple assist with something like getting to the elevator to get to their own floor from the community room. it's barbaric that a person is expected to recover in such a grim environment (one of his room windows looked out at a wall-- not even sky or grass or trees!), and eating food I wouldn't feed to a dog, lacking stimulation and having little to look forward to except more of the same. 😝

I'm really sorry to read about this major loss in your life which I cannot and don't want to imagine. Having said that, your BF is giving you clear signals that he, too, doesn't want to imagine the pain you are in and from the description, is telling you non-verbally that he doesn't want to discuss it. Guys are often like that... we tune out rather than verbalize our discomfort. I think that as much as you'd rather have his support, he's signalling that support is not forthcoming. Rather, I would suggest you find a professional counselor or therapist with whom you can examine your grief (which is really quite new and fresh), especially since you don't have a good relationship with your own family. You ask, "should I just end it?" which I interpret to mean the relationship itself. Maybe not end it, but certainly step back and give him space. Giving him space will also give YOU space to breathe and start noticing where you are with your grief and loss feelings so you can work through them. And it is work-- hard work. I honestly don't think you can do the work with his help, because it doesn't sound like it's going to happen. So my suggestion is to find someone who will, preferably a professional support, which could include a grief and loss support group in your area.

I think Maya Angelou is credited for this, and I try to remember it: "When someone shows you who they are, believe them the first time."

I was told something similar about the lungs, from someone who seems to have some intuitive gifts for detecting this kind of thing. I know I mentioned it elsewhere but I was told by a deep-tissue massage body-work specialist that grief is held in the arms as well. it made sense at the time why my forearms, upper arms and shoulders ached so much. That has mostly passed by now.

That's sweet of you. Often when we are "different," caregivers have to be vigilant that our loved one is treated fairly by the hospital, rehab center or what have you, and that means speaking up when things are not right. This includes speaking up for ourselves and our right to fair treatment while our loved one is in the hospital. But the strain of being vigilant can be immense. I remember how it felt to wonder if the next shift nurse or care provider would be sensitive or be very subtly offensive. Earlier, in your first post, you described feeling cheated by this loss. yes, absolutely you were cheated. We've said this in one form or another, but it's discouraging, even enraging, that mean, awful and cruel people remain alive while good, decent and beautiful people don't survive. Since you lost her so very recently, I'd like to share an idea that came to me not long ago. Grief and the experience of loss, pain, separation, and so forth is like a jagged piece of glass that we inadvertently keep getting nicked and cut by as we move forward from the time of the loss. But this jagged glass edge becomes softened and smoothed over by the waves of grief we keep experiencing, and in this way it's just like "sea glass" or "beach glass" that is smooth, silky and lacking in sharp edges. Just as the waves of the water take away the sharp edge, the passage of time and the waves of grief and the tears we shed smooth away that jaggedness, leaving us softer and more rounded. But it takes time. Nowadays there is a lot of sea glass or beach glass that has been artificially smoothed to look real, but it's fake, and the parallels are clear: you can't fake it. The smoothness can only come from undergoing the natural process of grief.

Hello, I am sorry for what you went through. Personally, this was a very difficult thing to read due to to eerie similarities between what happened to your dad and what happened to my partner almost 3 years ago. However the hospital, in our case, was not at fault or negligent, but the rehab center he went to was, and the end of his life in ICU was much easier than what you describe happening to your dad. So whatever it is worth, i do have a sense of what you experienced, and the aftermath, and I wish you some measure of peace in the days ahead.

Very true, Kay. yesterday was the local monthly support group and while it was good to attend (I missed December's group) it just stirred up the grief sludge, because several new people were there, who had just lost their spouse/partner in the last 6 months and they were asking if it gets any easier, etc. I don't mind discussing it but it does set me back a little each time, or so it seems. 🙁

I'm sorry that there hasn't been a response to your original post sooner. It may be that people didn't know how to respond. I can't imagine the experience you describe but it sounds like your decision to step back for healing was what you needed. He made his decisions to listen to others instead of the truth of what you were telling him. it's always tragic when other people maliciously sway someone's view or opinion about a matter that really doesn't concern anyone else. it may be that his insecurity undermined him to the point where he lost trust in you, and no matter what you did or said, it wouldn't be enough to fill that gaping void that was in him. Some people cannot be convinced of our good intentions, nor are they forgiving when we, in our humanity, make mistakes or lash out in anger. It's very unfortunate, and this social media thing we have nowadays allows rumors, gossip, innuendo and outright lies to flourish, and people outside the situation have no context or any way to discern what's really going on. Tragic all around. Feeling guilty is normal and understandable. it's one of the characteristics of those who are left behind, and it's called "survivor's guilt." being angry at him is also natural, because he made the choice to fill his void with substances, and it was too much for him to handle and he lost his life, as many do when they abuse substances. We can be angry at the one who died if, for example, they chose not to eat better, exercise, etc. I'm sure someone will be along with more experience with this kind of thing, with some comments, but meantime I hope you will seek some counseling or therapy for yourself to process what has happened.

Hello, I am sorry to read about your losses. I think it's quite natural and understandable when you say, That's what some call the grief switchbacks, like those mountain roads that seem to double back on themselves, seen as squiggles from an airplane. You think you have made progress, only to find yourself sort of looking over at territory you thought you already left behind. it's very possible that the loss of your mother has dredged up sadness and grief from losing your dad so long ago --and in such a traumatic way. Someone here once said that any grief left over that hasn't been dealt with in some manner, lies in wait for us down the road until we do address it. And, please remember, your newest loss is so, so fresh at barely two months, and then there are the holidays that we just had. Yikes but that's a lot to consider! It's going to feel what it feels like for some time longer, I'm sorry to say, and for guys, it's a little harder because of the need or desire to "keep it together" for others. I noticed that being active, doing things, helped me come to terms with my situation a bit better than I think I might have. You will find what works for you.

That's for sure. I noticed that the 18th month hit me really hard for some reason; it just felt more real, more final. Now Year 2 has 3 months left in it and I'll be starting Year 3. And I had to stop and add it all up when I typed that 🤔. Curiously, I'm finding the amount of time he's been gone is almost losing its meaning. It's a little like staring at a black-and-white illustration and suddenly noticing the negative space, rather than the image you're supposed to be looking at.

Yep. These past few years really "brought home" to me the meaning behind the old saying, "Only the good die young."

Hello there. I, too, can only say how sorry I am you lost her and are now feeling lost. As others have said, we get it. For men, it's a little different, this grief journey, than it might be for women. The anger at yourself, and at her for her lack of self-care, is so, so completely and totally natural, normal and understandable. Myself, I had to push my partner at times to do better with this kind of thing. He would lie or minimize things, too. He didn't want to worry me. In fact when he first collapsed and was sent to the ER, he minimized his symptoms to the ER doctor and made light of the incident, just wanting to go home. I get that but I was furious when I heard him blow off my concerns during the ER doctor's questioning of the events leading up to the collapse. He did it again the morning after, when they were getting hm ready to start walking around in preparation for discharge, as we were all unaware of the septic bacteria in his bloodstream about to overtake his system (evidently, moving around caused a pocket of septic bacteria to break open or something, and leak into his bloodstream). Because of his typical guy attitude, we will never pinpoint what anyone could have done to prevent it in the very beginning. He had some symptoms the night before which I, myself, blew off as inconsequential. Looking back, I think the cascade of events was starting even then. Did I blame myself? Yes. I still do, a little. But I came to realize, over the last almost-3-years, that he didn't want to be a burden, part of his upbringing. Drawing attention to yourself was an invitation to be a target. So I have to take things like that into consideration. Could there be something like this, that she didn't want to worry you? Absolutely you can blame yourself, and you will. That's unavoidable, a very human reaction for a finite being like yourself who can't know in advance what will and won't happen. You can drive yourself nuts with the what-ifs, and it sounds like you are. Again, a similar experience here with "should I call 911?" not doing it and regretting/wondering ever after... I get it. I still do it. Just not as much, because the intensity softens with time, distance, and perspective. It's a hard road to walk. The holidays, and certain anniversaries, make it harder, but it's still so very fresh for you. I hope you will read through the forum when you're able to, to see that those of us here understand and will listen.

Sorry for that ordeal, Gwen. Maybe I'm a starry-eyed optimist, but I would think that place would have a patient advocate that you can go to to lodge a complaint about that "doctor" (who doesn't sound like he deserves that honorific). I'm not sure what state you reside in, but there's also the various state boards overseeing licensure and such. At any rate, sounds like he ought to remember that old admonition, "Physician, heal thyself"! He's doing more harm than good, even if only in a subtle manner. How sad for everyone involved.

This has been a tough one in some ways, as it's the time of year when Mark was just coming around from his first brush with death, awake, talking, eating a little dinner, moving around in the ICU bed. We had a little Christmas with him in the hospital room, and spirits were hopeful all around. Little did we know... but while this time around was indeed tough, something interesting happened today, on Christmas. About a week ago I was digging around in a cabinet and found an overnight bag, just a little one that is meant for toiletries, probably intended for guys. 😎 It had gotten shoved into a corner under some towels or something. I decided to take it with me for my overnight visit to immediate family, and just shoved personal effects without really looking, stashed it in my duffel bag, and off I went. Today I was getting ready for dinner at 1pm, and took my toiletry bag to the bathroom. When I opened it, I found a ten dollar bill in one of the pockets. Logically, it was always there, left behind during one of our trips in the past. But today, it felt like a surprise gift from him, because he was the last person to touch it. I have no idea how long the bag itself was sitting under the towels, either, so across time and space, I like to think he left this for me.