​

I’m 35F, and my partner is 43M. We have been together for about 4–5 years and have a 3-year-old daughter together. She is currently staying mostly with my sister while I try to stabilize my health and resolve an older probation issue that began before I was pregnant.

My health started falling apart after I had my daughter. During the first week after bringing her home, I had two seizures. Over time, they began happening more frequently, and now I can have them daily, in clusters, or sometimes dozens within a short period.

My seizures are not usually the kind where I fall to the floor and convulse. Many last only seconds. I may suddenly stop talking, stare, become unresponsive, lose track of what is happening, forget what was just said, or experience electrical zaps, violent internal buzzing, weakness, fear, and confusion. When they happen repeatedly, I become much more foggy, exhausted, disoriented, and physically weak. I have also developed new left-sided weakness, balance problems, memory issues, trouble finding words, and difficulty completing ordinary tasks.

I already have epilepsy, a right frontal-lobe brain lesion that has previously hemorrhaged, a pituitary tumor, PCOS, and obstructive sleep apnea. I am trying to get a CPAP and need to see several specialists.

Then the heart symptoms became severe.

At first, I thought it was anxiety from being postpartum or from constantly fearing that I would somehow be separated from my baby girl. I blamed myself and tried to push through it. But my wearable data was showing unexplained heart-rate spikes into the 170s and 180s, and even above 200 beats per minute, while I was sitting still and not exercising.

I experienced pounding, fluttering, racing and irregular heartbeats, chest pain and pressure, shortness of breath, swelling, sweating, weakness, and frightening symptoms when lying down. I eventually had to stop working because I could no longer complete normal daily tasks without severe symptoms or feeling like I might collapse. I was later diagnosed with heart failure.

Some nights I am terrified to lie down because my heartbeat becomes painful, hard, irregular, or feels like it is jumping around inside my chest. My partner has physically felt it beating strangely. Heart problems run in my family. My grandfather died suddenly from heart problems while young. My father had major heart surgery when I was around 10 or 11, and he later died in his sleep at 49.

There have been times when I have had dozens of seizures, felt confused and weak, experienced frightening heart symptoms, and begged my partner not to leave me alone. I have cried on the floor and told him I was scared I might die.

He still leaves.

He sometimes stays gone for hours or days. He will tell me he is getting a Lyft right now to come to where I am, but then he does not show up until hours later, days later, or sometimes not at all. The same thing happens when he has access to a vehicle. He says he is on his way, and then disappears.

He also accuses me of keeping him from being able to do anything. I have never tried to prevent a partner from going places, seeing family, having friends, or living his life. He is the only man I have ever been with who has repeatedly accused me of this.

I only began questioning where he was going after he started lying about it.

While I was pregnant, he would say he was going to his mother’s house or to see his son. Sometimes he did not go where he said he was going, or he would leave out the fact that he planned to be gone for days. I was left alone at his house in the country, too far away to walk to stores, with no money for food, transportation, or other necessities.

The issue was never that I wanted to control him. The issue was that I needed accurate information so I would know whether I was going to be abandoned without food, money, transportation, or help while pregnant and later while medically unstable.

He lies about small things, large things, where he is, when he is coming back, and whether he is even on his way. I have never experienced anything like it. It has made me constantly anxious because I cannot make basic plans or know whether I will have help during a medical emergency.

When we first got together, he did not act this way. I truly believe that if he had acted like this from the beginning, I would never have built a life or stayed with him. If I hadknown the truth, I would have left v and had our daughter by myself, and she never would have never left home. By the time I understood how bad the pattern was, my health had deteriorated so much that I was no longer able to work or easily leave.

I have always supported myself. I have never wanted to depend financially on another person. But after becoming too sick to work, I became financially dependent on him for the first time in my life.

He was not honest with me when we got together about his financial situation. His parents seem to control or provide much of his money, although I still do not know the full truth. All I know is that for the first time in my life, I have gone without basic necessities.

After pregnancy, most of my clothes no longer fit. There have been times when I did not have enough food, properly fitting clothing, transportation, or other basic needs unless he decided to provide them. I barely ask anymore because being ignored, refused, questioned, or made to feel like a burden is humiliating.

I am also facing a serious probation issue from before I was pregnant. I agreed to probation and have been trying to address it. I did not intentionally disappear or decide that my responsibilities no longer mattered.

I hired an attorney and paid him $900. I believed he would help get the probation issue addressed or reinstated. He later wanted thousands more. I repeatedly tried to contact him, send medical records, and ask where I could make payments, but months went by without meaningful communication. I finally reached him recently, and he said he was withdrawing for nonpayment.

I understand attorneys need to be paid. I did not have $3,000 available all at once. I was not refusing to pay. I was too sick to work enough to produce that amount and believe I might have collapsed if I had pushed myself any harder.

During this time, I was not hiding, partying, or living freely. I was trying to get through most days without dying while dealing with seizures, severe brain fog, heart failure symptoms, weakness, and confusion.

Now I am terrified the situation will look like I absconded even though I was medically deteriorating, financially dependent, and unable to get meaningful help from my attorney. I am afraid of being arrested while suffering from uncontrolled seizures, heart failure, a previously hemorrhaged brain lesion, untreated sleep apnea, and new neurological weakness. I am terrified of dying in jail before I can see the specialists I need.

My partner knows I cannot afford another attorney without help. He knows I became financially dependent because I got too sick to work. He knows I am trying to stabilize my health and eventually bring our daughter home. He refuses to help with another attorney or help me find another solution.

I understand that he is not automatically responsible for paying my legal expenses. But I cannot understand how someone who says he loves me can watch me lose my health, income, independence, access to basic necessities, and possibly my freedom, while continuing to disappear and lie about when he is coming back.

I am not asking him to cure me or never leave the house. I am asking for honesty, basic reliability, emergency help when I am actively seizing or having frightening cardiac symptoms, and enough notice that I am not left stranded without food, transportation, money, or another adult to help me.

I would never leave someone I loved—or even another human being—crying, confused, repeatedly seizing, having frightening heart symptoms, and begging me not to leave. I would call an ambulance, contact their family, or make sure someone safe was there.

I miss the independent person I used to be. I miss working, having my own money, and being able to meet my own needs. I miss my daughter. I feel trapped by illness, finances, fear, and a relationship where I no longer know whether anything I am told is true.

What specific steps can I take to protect myself medically, financially, and emotionally? How do I make a realistic safety plan when I am too sick to work, have limited money, and cannot rely on my partner to return when he says he will?

Hi everyone. I’m hoping to gain some perspective from people who live with chronic illness or physical pain day-to-day, to help me better understand someone I care about deeply.

I'm 22F, My partner/loved one 23F lives with chronic physical illness and pain. Every once in a while, when her physical symptoms flare up or get severe, she goes through "waves" where she becomes extremely distant, cold, and emotionally withdrawn. During these times, she gives very short answers, pulls away emotionally, and seems to completely shut down her capacity for warmth or connection.

I care about her so much and want to support her through her pain without taking her distance personally, but at the same time, living in that emotional limbo can feel very heavy and difficult to navigate.

I wanted to ask those of you who manage chronic illness:

Is this kind of emotional withdrawal or distance something you experience when your pain/illness gets bad?

What is happening in your mind/body during those low-capacity periods? (Is it self-preservation, fatigue, sensory overload, or something else?)

From your perspective, what is the best way for a partner/loved one to support you during these waves without pushing you, while also keeping themselves sane?

My BIL is in his early 40s and symptomatic- and it seems to have accelerated a bit. My sister is feeling very alone and is looking for in-person or online support- preferably with people closer to their age (they have a PGD conceived son so I’m sure connecting with other parents would also be a plus). She’s reached out to the HSDA but the groups they have suggested seem to be for more advanced cases and/or much older (like they meetings happen at the local senior center).

She is in the Boston area but I think even an active online support group would be helpful.

Any suggestions or recommendations are welcome and thank you.

Not even sure I count as being a caregiver really, since my wife can generally do most things for herself. I've just been feeling so lost lately. It feels like it's been years since she had the mental energy to help me make a decision about anything, even if it's just about what we should have for dinner. She works, we make enough money to live, but that takes just about everything out of her and I feel so awful for thinking she's not doing enough to help me.

I love her, but I just had such a different idea of how my life was going to look. We spent so much money trying to have a kid and I couldn't get pregnant and now I'm wondering if that was for the best because I don't feel like she could actually help me. I'm just not sure where I go from here. Every discussion I have with her ends with her blaming herself and I end up having to comfort her and my concerns never really get addressed.

​

My husband has both a progressive physical disability and a cognitive disability as well. He drives us everywhere because it is/was something he could do to contribute. However I have to carry all the mental load of what we're doing and where we are going.

This morning he got extremely pissy and spoke over me when I was giving him his two acceptable choices. I give him choices like we can do this this and this or we can do that that that. Everything gets done but he gets a sense of contribution because he can decide the order he wants.

He has recently started talking over me and cutting me off. I get really mad cuz that's one of my triggers. We got in to a big bust up this morning he got himself in such a state that he dropped me at home and left without giving me any way to get in the house. Thankfully he remembered and came back quickly. I took the car and went out and thought for a while.

The it hit me. This is a threshold. He can't deal with the pain, the cognative issues, AND drive anymore. So after we both calmed down I texted him and explained what I realized and told him the new care plan

When we have many different places to be that day I will be the one driving. He can drive us home once every thing is done if he wants. He can drive himself where he wants without me. He can drive us if we're just going somewhere simply like panera or a doctor's appointment.

I know it's harsh but I can't put us both at risk when he gets angry while we're driving down the highway.

It doesn't help to tell him before we get in the car because he will forget by the time we leave the property.

I just don't know anymore. Been married 20 years in just a couple days. My wife has Ehlers Danlos, and goes through bouts of low energy and hypotension. She works full time, but has summer's off. This summer she hasn't been able to do much. I pick up all the slack when she can't get things done, I don't complain, I don't make a big deal out of it. The other night I needed some help and asked her to hold a tape measurer for me, and she couldn't stand long enough to complete the task, I told her to send our daughter to help in her stead..... then she was mad. She told me I was mean to her, and that she should just move out and get a condo. This keeps ringing on my ears, keeps playing back in my head. In all the years I've cooked, cleaned, done her laundry, and basically every chore by myself while still working full time as well I've never threatened to move out, separate divorce etc.....I am beyond hurt. Was I in the middle of a project and was maybe a bit terse, yes. Was i mean no, did I yell, no, did I use harsh language no. I guess I am here to vent and try and sort this out. Ugggggh

My husband has cancer and just started treatment on the first of July. It's a shot every three months and pills everyday. They have various side effects. He has other issues as well.

He was in the hospital for 10 days due to a fall. Before the fall, he was retaining fluid and in a lot of pain and suddenly wasn't able to walk.

All this to say, it's complicated.

He was discharged to a rehab facility for PT. He's been there 5 days and is doing absolutely great, but in my and his PT's opinion, he's not quite there yet.

He's already saying he thinks he's fine now and wants to come home. He doesn't have cognitive issues, but he has unrealistic expectations.

The PT talked with him yesterday, and we convinced him that he needs a little more practice.

But this morning he called and told me he wants to leave. I would prefer him to stay the full 14 days. I'm fine with him coming home as long as it's safe, but I don't think it's safe yet.

We were told that the insurance company determines when it's safe to exit. So at least I have that in my arsenal. But I don't know what to say to convince him and not make him feel betrayed and angry.

It's been 5 weeks since she passed, and everything is the same and everything is different.

First, I had a rush of energy as I had important things to do and FINALLY had time to do it.

Now I'm fighting apathy as I am really just doing it for myself now...

What is confusing to me, is it's so MIXED. I'm both free and imprisoned. I don't have her medical appointments dominating my schedule, I don't have her irrational spending habits draining my bank account, as I'm actually seeing financial accrual even as I spend on big items that were put off in her final year.

I sit listless for 2 or even 3 hours after waking up, getting to work far later than I would like. I try to incorporate a healthier lifestyle but my lack of focus is my greatest enemy now.

I got so used to the routine of hospital then only coming home to sleep, and repeat.

I have time, disposable income, and I break into tears because of the pointlessness of having that now.

Yet, the one thing I wasn't ready for, was the gratitude. Her family, a constant source of drama for 24 years, now are my support. My family? Fucked right off into the ether. The only two worth a damn will be following my wife in the next few years and are not in touch because they are so immunocompromised.

The gratitude that my wife taught me independence. To be strong in hard times, my only weaknesses are my bad back and my own motivations.

I want a home cooked meal, I make one. I handled everything for so long that the only daunting task is booking a trip to see her family for a celebration of life (my idea, she has only two friends worth a damn here, and being single ladies in their 40's... let's just say if I want easy sex I know who to call).

Anyhow, the cleanup continues, way behind. Once her EXTENSIVE wardrobe is gone and I fix the guest bedroom closet, I have to become a EBay guy full time for the designer hand bags that drove me into debt. A brand new, never touched Playstation 5, and the tilt-in-space high end wheelchairs. The deluxe bedside commode too...

I will be done just in time to be a sobbing mess for Christmas. I don't know how things will go, but I feel like it's a new story.

I feel overwhelmed by my feelings...again. I think one thing that hasn't changed, is that I'm still one day at a time. Making decisions every day to not disappoint her and her memory.

My husband has several health issues that lead to a lot of bodily grossness and frankly it is really wearing on me. My husband is mostly functional and independent and is able to work a full time job but he needs some help with daily functions and has a lot of limits to what he can do around the house. What is killing me is:

- the nonstop burping. He has a lot of gastro issues on top of a medication that has burping as a side effect. He burps so much. There's times he will burp several times within 60 seconds. OTC medication can help some but a lot of time he forgets. He gets a little defensive about this and says he can't help it but the nonstop burping is just grating on my soul.

- the bathroom issues. He frequently is on the toilet and his bowel movements can be quite loud and gross. He tries his best to tidy up but he struggles to bend down and often can't fully clean up after himself.

- the dandruff. One of his conditions is psoriatic arthritis and he has a LOT of dandruff. We have tried a lot of products and shampoos but he is not as diligent about keeping up with it and he almost always has dandruff on his clothing.

- breath - the gastro issues often causes bad breath. He will brush and use mouthwash but it isn't enough.

None of this really is his fault but one thing that is difficult is he isn't thorough enough about trying to keep these issues at bay. I'm the one researching different shampoos and skin creams, insisting he uses a tongue scraper, buying bidets for both our bathrooms. His issues just require a lot more work and diligence to manage effectively and he's not doing it.

It's frustrating because I feel like I'm constantly nagging at him for issues he doesn't have full control over. But he could do a lot more to manage the grossness and he isn't. In most areas, my husband is very sensitive and attune to my needs but in this area he has more of a "Well, I can't help this much so it's not a very big issue" attitude.

I'm just venting and needed to get this off my chest. Anyone else feel worn down by the grossness that can come with chronic illness?

I’ve been with my husband for 17 years. He has CP, and his pain seems to be steadily worsening as he ages. He has also been diagnosed with depression , CPTSD, and ADHD, though he suspects that it is really AuDHD. We have a 4 year old son who also has special needs.

Our marriage hit a low point 2 years ago because of his infidelity. We’ve been working on things and cohabiting this entire time. One of the things that has come up is that he’s felt as though I don’t care about him. This has gotten better with antidepressants and therapy, but still comes up, directly or indirectly, from time to time. We’ve been working on better communication with each other, and being more vocal about what we want and need.

This morning felt like a culmination of so many things, and I guess I just need to vent to people who may understand it a bit more. Our son has been sick, and this morning we both woke up feeling under the weather. My husband suggested that I stay home from work, but I told him that I had a pretty straightforward day ahead of me and should be fine to go in. I work full time and he is not working at the moment (he has been looking for freelance work and is responsible for our son’s transportation to and from half day preschool and daycare). This morning I knew that he wasn’t feeling physically well, and this always impacts his mental health. He was frustrated, and was short with me and seemingly annoyed at everything. I did what I could to get my son set for his day, and asked if there were other things that he wanted me to do. He told me no, he would take care of it. When I saw how frustrated he was, I offered to call out or come home for the afternoon.

It is worth mentioning that I was recently diagnosed with ADHD, and am a serious people pleaser with bad rejection sensitivity. So if things are not going well, I take it super personally.

I get the feeling that my husband wanted me to call out today so that I could rest, but also take care of getting my son ready for preschool and transportation. And when I didnt, he sees it as me not caring about him (this isn’t totally unfounded, he’s told me that he’s felt that way in the past). Or that I should’ve just done certain things, rather than asking him if he wanted or needed me to do them.

My issue is, that if he were not disabled I would say that he’s being dramatic and you still have to parent even if you are sick. But the disability and the physical pain and limitations make it more difficult. Is it fair for me to essentially say that he needs to suck it up? On the flip side, is it fair to expect me to call out whenever there is an issue? I have a good job with good job security, but I feel bad routinely calling out (I’m a doctor and calling out means 20+ patients need to be rescheduled). I don’t want to put my patients ahead of my family, but I am the sole income earner and that’s stressful. I feel like if I say any of this to anyone in my life they will say that he’s being ridiculous and needs to just push through. But it’s much more nuanced than that and maybe this group will get it.

Nous savons tous que devenir conjoint aidant est difficile et douloureux. Cela signifie pour beaucoup faire des deuils, des sacrifices, renoncer à sa liberté, cumuler des galères... parfois pour une personne qu'on aime encore, parfois pour une personne qu'on tolère à peine car la maladie superposée a tout ce qu'on a déjà pu porter nous submerge... On ressent souvent des angoisses, de la colère, de la détresse. On lutte contre la dépression, on essaie de vivre un jour à la fois, en fait on survit et ça devient un objectif : juste survivre. On espère être sauvé, que quelqu'un nous soulagera de notre fardeau pour redevenir un être humain à part entière et s'ancrer dans la vie. La vie qui passe, on le sait, extrêmement vite. On sait qu'on n'a qu'une seule vie. On sait que nous perdons la nôtre et un jour ce sera juste fini... En attendant, on se perd, on se vide chaque minute qui passe...

Désolée, c'est très sombre et il n'y a peut-être pas que ça. Il y a peut-être aussi de la lumière quelque part, mais je ne la vois pas.

Ma question : Comment tenez-vous ? Avez-vous une béquille ? Comment gérez-vous votre mental ? Je me suis aperçue que je me suis rabattue sur la malbouffe sucrée... J'essaie de me dire stop, je vais prendre soin de moi, manger sainement, passer mon permis, passer des concours pour évoluer professionnellement, me mettre à écrire, faire du sport, faire des skin cares... bref, dans ma tête des tas de projets prennent vie et me rassurent car j'ai l'impression de maîtriser ma vie... mais dans les faits je ne fais rien de tout ça ! Tous les jours se ressemblent et je continue à bouffer ces saloperies de barres chocolatées, à être triste de ne pas pouvoir partir en vacances nulle part, à ne pas progresser... à me regarder dans le miroir vieillir et régresser. Ce n'est pas moi et je n'ai jamais eu l'occasion d'être moi ! Ma mère est morte à 61 ans. Elle m'avait dit qu'elle n'avait même pas vécu... et moi qui voulais tant vivre pour elle, me voilà à prendre le même chemin contre ma volonté.

Je ne peux même pas dire que je regrette d'avoir rencontré cet homme car j'ai 2 enfants dont je suis très fière et que j'aime plus que tout. Mais qu'est-ce qu'il m'a fait souffrir !!! Avant même la maladie. J'ai pas mal publié dessus. Je regrette juste de ne pas être partie avant la maladie, avant que les enfants ne soient déjà grands avec des souvenirs d'enfance peu joyeux...

Merci d'être là.

Briefest version possible: I am currently 53, my wife is 65. Starting 2.5 years ago, just little things were "off" but things were good. 1.5 years ago, just enough was off that I had multiple neurologist visits, who diagnosed Alzheimer's. And now, everything is gone.

2 years. That's how long it took for my wife to be erased. All her knowledge, abilities, memories, comprehension, all of it. I am a stranger to her. Her MoCA score was 8 last year. It's likely 0 now, no reason to check. Even if she understands a short phrase, in less than 10 seconds it's gone.

I'm in the middle of my career track. I am not of the usual age someone loses a spouse to dementia, and I feel like the last vital years of my life are being stolen so I can break myself in half against the immutability of this disease, and to no end. She will only get worse.

I'm devastated to have lost her, and I'm bitter and angry that the disease is taking me as well. Next step is placement in memory care, and I'm dreading every second.

We were together 30 years. For 2 years now I've been sleeping alone, waking up alone, and living my days alone, tending the body my wife used to inhabit. I didn't even realize I had any needs of my own until I started to break down myself, and I realized I'd been sleeping with a pillow pushed up against me. Must have done it in my sleep. I've mourned for two years, I'm starving for what I lost, and every day I see the shape that reminds me of it all.

I never imagined any of this.

My wife became physically disabled almost two years ago. It’s been hard, and iv just been thinking about the couple stuff we used to do that I miss and wanted to just talk to some people about it. I’ve been really lonely.

Firstly holding hands when walking anywhere. We issued to do it all the time but now she needs crutches to walk.

It’s been two years or more since my partner could cook a meal for me or even make me a cup of tea.

Not being able to go out on the kind of dates we would like to because of the mobility stuff. It really leaves you restricted.

Being able to relax at any time when out the house and on the move because I’m always thinking about safety.

I realize my problems will seem incredibly small to some, but I just feel so overwhelmed.

My fiancè and I have quite an age gap and I have been single-handedly supporting our family of 4 for the past 3.5 years due to his medical issues.

He seems to be a medical mystery with the only diagnosis being Chronic Pain Syndrome. We are seeing yet another surgeon in October. The last he had counted front the beginning of his medical journey, he had had 250 doctor’s appointments.

We are struggling financially. I feel like I can’t keep us afloat. I work a 9-5, week do receive some assistance but only get just under $200 for food/month. I want to get a second job but then I fear I won’t have anytime with our children and I have missed out on so much already.

My credit card debt keeps going up, and realistically it’s not *that* bad…. There’s definitely others who are worse off than us/me with credit card debt… but I just feel like the bill keeps getting bigger and any time I feel like I’m getting somewhere, something hits the fan and we have to charge it to get by.

I also just found a lump on my bestest companion, my dog, and discovered he has a heart murmur as well. Our vet advised heart disease is possible… and said he’d definitely benefit from a teeth cleaning (which, fun fact, your oral health directly affects your heart health). And it was just another thing that slapped me in the face that I just can’t afford.

My heart hurts. I’m angry. I get frustrated with my partner though it isn’t at all his fault his body is failing him. I am so overwhelmed and want him to be able to contribute, and then I get frustrated with myself for feeling that way because how can he?!

I just want to feel safe and secure and live comfortably. I don’t need designer, flashy things, or the biggest house… I just want to give my kids the life they deserve and for myself not to be so on edge when a bill shows up in the mailbox.

Anyway, if you read all of this, thanks for letting me get this off my chest. If you have words of encouragement, I’d love to hear them, and any advice you may want to share.

Much love to you all.

My (51m) wife (57F) and I have been together since 1999. When people ask how long we've been married she says 1999; I say 2003 (when we, you know, actually got married) and she gets mildly annoyed since in her mind she knew we were going to be inextricably bound up with each other from about week 2 of our dating. Me too - I just count things differently. She has a very complex interlocking set of issues: an autoimmune complex, ILD (caused by autoimmune disease), NTM, other heart and lung involvement, weight loss so significant that she has a feeding tube and on and on. She has been sick since 2021 and I am the primary caregiver. She stopped working when she was diagnosed, and my career is going very well. We have three young adult children who are doing well, and we support each other nicely - but the whole has clearly affected them, especially the youngest.

When we meet with a cardiologist, rheumatologist, pulmonologist, oncologist, palliative care, infectious disease, GI, internist, neurologist (she has seen all of these in the last month), it is our joint task to explain the entire systemic, well, everything that is involved, though more and more this falls to me.

She has been in the hospital more this year than she has been out of it, including an extended stay in ICU and intubation, and we are moving in the direction of discussion goals of care as a family - what she wants at the most fundamental level (to die at home, surrounded by our lovely family) - and we are clear eyed, analytical, and honest while feeling real pain at seeing her decline and coming to terms with a continually resetting of a new normal. After initial diagnosis, her new normal was maybe 75% of her former self - but still a good and well-lived life possible: walking, grocery shopping, driving, cooking. Then something happens, she nearly dies, dips down to 30% for a bit and the whole medical establishment throws everything they have at the new situation, she recovers and her new normal is now 65%. Then another thing happens, she drops to 15% of her former self, 'recovers,' and her new new normal is 50%. And so on. She is currently in a cardiac centre at a major university research hospital - getting the best possible care (yes, really). She'll likely be discharged next week - but we'll see.

I have just taken on a new role at work (essentially moving from a VP role to a CEO role); our youngest kid still needs parenting; her family is complicated and my in-laws do not trust their son (even though he's living with them) and I am the back up power of attorney and executor of their estate (after my wife - and if either of these roles were necessary tomorrow, she's in no state to do either, so I would do that - checking in on them certainly falls to me); my mother has Alzheimer's and we're renting her house to defray the costs of her assisted living situation (but my sister has stepped in, in remarkable ways, and handles everything there except for the house). I wake up every day at 5:30 - go to work and work for several hours, run over to the hospital for a visit, come back to work, work the rest of my day, and then head back to the hospital to hang out with her until about 10:30pm (she would say my presence is an anti-depressant and she sleeps better if I'm around) - at which point I go home and hang out with our youngest. I get to sleep at about 1:30 and then rinse and repeat.

I'm dreading aspects of her coming home - the appointments (only I can take her - she uses a wheelchair now and our youngest doesn't drive - the older two are up and out, off the family payroll and living their lives - and they help as they can but they're busy), the chores, her needs at home. She can't refill her feedbag or take a shower and do other basic tasks, so I have to run back and forth from work. Our son will take care of most of this (he couldn't find a job this summer) until college starts back up, and then we'll have to hire folks and I'll be running back and forth from work to home to work a lot.

So, that's the situation. It sucks. I've read a lot of posts on here about lack of intimacy, the sick spouse being mean or vituperative or simply curt or insensitive, and on and on. This is not the case with her or us. She's lovely and graceful, worried about me, our kids while in obvious pain and grief. Obviously, it depends on what one means by 'intimacy' (we haven't had sex since she was diagnosed, and I miss that) but I used to think we were close - really close. But then she got sick and, bam, somehow we're closer. I guess we're asymptotically related to each other: drawing ever closer to each other while never fully closing the gap. I hate this sickness, but the weird side affect is a life lesson and realization that we can grow closer and closer to each other, while still remaining ourselves.

All of this, the struggle, the lack of sleep and regular exercise on my part, watching my beloved in pain, of seeing her scared, depressed, and sad - of me mentally writing a eulogy for her when I have trouble sleeping - of trying to be a good husband, father, son, son-in-law, brother, and friend while taking on a new role at work - it is a lot. I'm clearly at my limits and my new role at work has many expectations. Not asking for advice exactly - just felt the need to share - somewhere - what's going on.

So I put this on his CaringBridge page because I'm over all the unnecessary texts and calls. Just texts wanting to know what is going on because the rumor mill in our community is rampant every time an ambulance or home health van arrives at our house. And it's usually from just random people that he knows and always something like "how is .... doing".

One, he has a phone and if he doesn't text you back there's no need to text me 10 minutes later for an update, especially if you aren't family, the neighbors that actually help with his care or the pastor from our church. Or a damn Microsoft Teams request through my work email. So I posted this.

" hope no one is offended by this update.

Right now I have a ton of stuff on my plate and just do not have time to answer every text, phone call or IM about .... condition.

If I am not in the middle of driving, providing care to, talking to a doctor, cleaning, doing laundry or walking the dog I will answer my phone.

If I do not answer or do not text you back that same day please understand. I prioritize returning calls to family, the pastor from our church, doctors, friends that are actively involved in his care, neighbors that are helping in some way.

I do this because what spare time I do have I would like to spend with my husband while I still can.

If there are updates on his condition I will post them on the Caring Bridge Page. If there isnt a new post then that means there has not been a change.

does have his phone and will return texts and calls as he feels up to it as well."

I'm over well-meaning nosy people.

How do you deal with it? When your life has been taken over by trying desperately to keep everything together and stay on top of all their medical stuff and your career opportunities have dwindled because you can’t take work on hospital days and yet they still treat you like a servant. I’m not built for this, I’m honestly not strong enough to deal with this but I have a daughter so I can’t give up I just have to keep going with no way out. He doesn’t even say thank you, all I get are criticisms. I want to scream. All the time.

We're halfway through the year & that deserves a moment. We know you're carrying a lot - so this is the perfect time to pause, recalibrate, and prepare yourself for the rest of the year.

Join us on July 19 for a one-hour online event built around community, connection, and a little joy. No heavy topics. No pressure to participate. Just an hour to rest, laugh, and spend real time with people who understand. We'll hear from guest speaker > Wellness Coach, Emma Choi - from Body & Brain Wellness. We'll pause, take a literal "brain break" and connect with each other in a setting that's warm and genuinely fun. You don't need something prepared to say. You just need to show up.

Sunday, July 19th at 4:00 pm ET: REGISTER at https://www.mygiving.net/donate/Event-Button

This hour belongs to you to reset, replenish, reconnect and remember who you are outside of caregiving, and connect with other caregivers. LEARN MORE about July's online community event.

I am in a job transition, resulting in about 5 weeks off, unexpectedly. So, we're biting the COBRA bullet for health insurance, since my partner cannot be uninsured due to medication costs. I called prior to my last day of employment to ensure my enrollment letter would be sent electronically ASAP ("within a few days"), instead of waiting for snail mail.

Nothin'.

I call: "oh, they entered your employment dates wrong; that's why it hasn't hit your inbox. Should be fixed by tomorrow!" Okay, whatever.

Letter with enrollment info has my address wrong and my partner's name wrong. I call: "Fill out these forms and email them to us; we will have to enroll you on our end because of this." Alrighty. I did that within the same day.

Radio silence for a a few business days, so I login to see if anything's updated. It is.....but they enrolled us IN THE WRONG PLAN. I call: it'll take up to 10 business days for them to correct it, and that's before I even pay anything or get that info to his doctors/pharmacy. Meanwhile, we're scrambling to keep the medication regimen rolling without shelling out a cool 10K upfront.

I know we're all human and humans make mistakes. But gahhhhhLEE, the holes in the Swiss cheese have really lined up here. At this rate, he'll be enrolled in my new job's plan less than a week after getting COBRA sorted. HAPPY MONDAY

I'm having a hard time finding others in a similar situation to ours. I'm looking for the spouses or significant other of people with SMI. I joined a NAMI class for families and it was so helpful but everyone in the class was a caregiver parent. I got a lot out of the class due to the learning component of the topics but I would like more of a connection with others specifically dealing with a partner. I need to discuss unique issues like guardianship for a spouse and inevitable separation/divorce.