Partner is suffering x 10, how can I help
February 28, 2023 12:40 AM Subscribe
There are just many levels and kinds of suffering afflicting him. Would like to be more helpful. If I can’t solve the problems would like him to suffer less.
Have posted before about my own response to some imperfect behaviour. Please if you can turn your attention to him.
The health issues keep piling up. The things he can enjoy are fewer and fewer. He used to love fragrances, now allergic. Used to love food, now the bane of his life. Used to be athletic, is naturally super social, now housebound. Has had to cancel visits with friends because he’s too ill to leave the house. Isolated from family, also choosing this for self protection. His attitude is sort of in the “why me/it’s unfair” category which frankly is understandable.
(Thyroid problems incl Hashimoto’s. Multiple serious digestive issues. Severe TMJ. Photosensitivity and headaches. Short term memory is absolutely shot. Weird and scary rashes/allergic reactions. Extreme fatigue. Has been trying and withdrawing from multiple psychiatric medications that compound these symptoms for a few years now. Anxiety and depression. There is no comfort anywhere for this man. He has a referral to another GI for the gastro stuff, if anyone has thoughts on other specialists he should see or how to approach this that would be helpful. Pharmacist review of medication? Internal medicine specialist? Endocrinologist? Immunologist? Need a bird’s eye view as well as specialists…)
I spend a lot of time trying to solve problems or manage tasks because someone has to, and that’s fine & if anyone has ideas on doing this more effectively that would be superb. But also… very important… ideas on bringing some lightness or inspiration into his world would be amazing. It’s so hard. He’s too tired to even watch a movie most days.
Have posted before about my own response to some imperfect behaviour. Please if you can turn your attention to him.
The health issues keep piling up. The things he can enjoy are fewer and fewer. He used to love fragrances, now allergic. Used to love food, now the bane of his life. Used to be athletic, is naturally super social, now housebound. Has had to cancel visits with friends because he’s too ill to leave the house. Isolated from family, also choosing this for self protection. His attitude is sort of in the “why me/it’s unfair” category which frankly is understandable.
(Thyroid problems incl Hashimoto’s. Multiple serious digestive issues. Severe TMJ. Photosensitivity and headaches. Short term memory is absolutely shot. Weird and scary rashes/allergic reactions. Extreme fatigue. Has been trying and withdrawing from multiple psychiatric medications that compound these symptoms for a few years now. Anxiety and depression. There is no comfort anywhere for this man. He has a referral to another GI for the gastro stuff, if anyone has thoughts on other specialists he should see or how to approach this that would be helpful. Pharmacist review of medication? Internal medicine specialist? Endocrinologist? Immunologist? Need a bird’s eye view as well as specialists…)
I spend a lot of time trying to solve problems or manage tasks because someone has to, and that’s fine & if anyone has ideas on doing this more effectively that would be superb. But also… very important… ideas on bringing some lightness or inspiration into his world would be amazing. It’s so hard. He’s too tired to even watch a movie most days.
This may sound corny, but if he can't go outdoors bring the outdoors to him, within reason. More light (natural light preferred), and if he can tolerate it, more plants around the house. Is he in shape to take care of a pet? It may take his mind off his own problems. Something low-maintenance, of course. And more video calls via a laptop or an Amazon Echo. And see if there's a medical advocate one can hire to help him navigate the system.
posted by kschang at 3:01 AM on February 28, 2023 [1 favorite]
posted by kschang at 3:01 AM on February 28, 2023 [1 favorite]
Best answer: When I was housebound for medical stuff, I took great comfort (and drew hope and inspiration from) the many gorgeously high definition unnarrated nature videos on YouTube. I was especially missing being able to get out in Big Sur, so I was very happy to see that YouTube is a buffet of Big Sur videos. I was nostalgic for the Buffalo River floats of my childhood... and same. I was able to get back to both of those things in time.
Not to be reductive, but you're both overwhelmed and—whether or not he already has a psychiatrist he's working with to manage the psychiatric meds—is it in the realm of possibility to find a counselor (outside of the meds-based approach) that can take this on as a project that's worth some dedicated focus? This might be a good way to approach the task management issues, too, so you don't have to assume all the admin roles that a situation like this presents. You can find help to offload some of that work to give you (both) a bit more mental space. Honestly, there may be a role here for a grief counselor or another professional in the same realm—dealing with difficult circumstances, maybe circumstances that won't change or won't change soon—is a specialty.
It sounds like you needs a more robust coordination of care. You may be dealing with a lot of health practitioners whose approaches aren't integrated with one another and, instead, overlap with little knowledge or consideration of how they may be impacting one another. If that rings true, I would bring this up with every practitioner involved with his care—are there opportunities for greater engagement among them? If he were an inpatient he may have access to a hospitalist who could address this. Do you have access to a hospitalist thought any of his current care providers/locations who may be able to advise you on how to seek this kind of assistance outside the inpatient setting?
posted by late afternoon dreaming hotel at 5:33 AM on February 28, 2023 [6 favorites]
Not to be reductive, but you're both overwhelmed and—whether or not he already has a psychiatrist he's working with to manage the psychiatric meds—is it in the realm of possibility to find a counselor (outside of the meds-based approach) that can take this on as a project that's worth some dedicated focus? This might be a good way to approach the task management issues, too, so you don't have to assume all the admin roles that a situation like this presents. You can find help to offload some of that work to give you (both) a bit more mental space. Honestly, there may be a role here for a grief counselor or another professional in the same realm—dealing with difficult circumstances, maybe circumstances that won't change or won't change soon—is a specialty.
It sounds like you needs a more robust coordination of care. You may be dealing with a lot of health practitioners whose approaches aren't integrated with one another and, instead, overlap with little knowledge or consideration of how they may be impacting one another. If that rings true, I would bring this up with every practitioner involved with his care—are there opportunities for greater engagement among them? If he were an inpatient he may have access to a hospitalist who could address this. Do you have access to a hospitalist thought any of his current care providers/locations who may be able to advise you on how to seek this kind of assistance outside the inpatient setting?
posted by late afternoon dreaming hotel at 5:33 AM on February 28, 2023 [6 favorites]
I see an endocrinologist for Hashimoto's and she is currently the doctor who asks me the most questions about my life and considers them in balance with my thyroid stuff. She is also the first person to tell me that it's Hashimoto's - I had about 10 years of care where nobody used that word and I assumed that my hypothyroid was uncomplicated. Knowing that it's an autoimmune problem shifts my understanding of my body, and that's been valuable.
So consider this a recommendation for seeing an endocrinologist directly. Before this, my primary care doc consulted the endocrinologist but I did not have direct access.
posted by Lawn Beaver at 6:40 AM on February 28, 2023 [4 favorites]
So consider this a recommendation for seeing an endocrinologist directly. Before this, my primary care doc consulted the endocrinologist but I did not have direct access.
posted by Lawn Beaver at 6:40 AM on February 28, 2023 [4 favorites]
Has he already been evaluated for Mast Cell Activation Syndrome (MCAS) or similar mast cell based problems? What makes me ask is the combination of autoimmune issues and new allergies. There are newer biologic treatments that can be a big help for people with mast cell issues. If he hasn't been checked for this yet I would definitely see a an allergist/immunologist who is familiar with mast cell issues for an evaluation. (I run an allergy support group and this is the advice I would give to one of our members with this combination of issues.)
When he is too tired to watch a movie, he might enjoy listening to a podcast or an audiobook. This is something I personally find relieves boredom without requiring too much brainpower when I am exhausted from my own health problems.
Maybe ask the friends he has become isolated from if they would be willing to send him the occasional letter, card, or postcard to help cheer him up? The nice thing about those old fashioned paper communications is that they don't carry an implied obligation for the recipient to reply in a timely fashion like texts or emails do.
Also, please try to make sure that YOU are getting some outside support and quick breaks from your routine now and then to help you recharge your own batteries as a caretaker in this situation.
posted by BlueJae at 8:03 AM on February 28, 2023 [4 favorites]
When he is too tired to watch a movie, he might enjoy listening to a podcast or an audiobook. This is something I personally find relieves boredom without requiring too much brainpower when I am exhausted from my own health problems.
Maybe ask the friends he has become isolated from if they would be willing to send him the occasional letter, card, or postcard to help cheer him up? The nice thing about those old fashioned paper communications is that they don't carry an implied obligation for the recipient to reply in a timely fashion like texts or emails do.
Also, please try to make sure that YOU are getting some outside support and quick breaks from your routine now and then to help you recharge your own batteries as a caretaker in this situation.
posted by BlueJae at 8:03 AM on February 28, 2023 [4 favorites]
Podcasts in the category of 'friends talking about something' might feel a bit social. I like How Did This Get Made? for this, but the options are virtually limitless. Also open, peaceful video games like Breath of the Wild or A Short Hike?
posted by lizard music at 8:48 AM on February 28, 2023 [2 favorites]
posted by lizard music at 8:48 AM on February 28, 2023 [2 favorites]
I wonder if an occupational therapist might be able to help here. They often work with sensory processing conditions, and in some ways this is an inverse challenge: your partner needs more sensory input in certain ways that don't trigger other sensory or physical reactions. They may also have some solutions for getting the appropriate amount of circadian stimulation when photosensitivity is an issue.
Can one of his friends take on an organizer/emcee role for coordinating online socialization with his people - some low-lift stuff they can get together on Discord text/voice/video to do? Depending on the types of people they are, they could do movie or tv show watches, the thing where everyone gives a 5-10-minute presentation on a topic they really love, games or trivia or jackbox.tv, etc.
If you have any money to throw at this, you might consider just privately hiring a medical professional - probably a nurse - to review everything going on and prepare a sort of CV of current known diagnoses and treatments and help or actually BE your concierge for dealing with and trying to unify the various doctors working with your partner. Their job would not only be to look for inconsistencies and translate for you, but honestly a little bit to scare their care team into best behavior and answers that actually make sense. They may also have better advice for getting him more comfortable or who you should talk to for more help with that, which is why I'd recommend finding someone local to you and your general regional healthcare environment. Given that you're really hiring them to explain things rather than perform medical care, this might be the perfect gig for a nurse that's currently not working, maybe stay-at-home parenting or retired, and anything you need them to attend can be done via Facetime.
posted by Lyn Never at 9:24 AM on February 28, 2023 [2 favorites]
Can one of his friends take on an organizer/emcee role for coordinating online socialization with his people - some low-lift stuff they can get together on Discord text/voice/video to do? Depending on the types of people they are, they could do movie or tv show watches, the thing where everyone gives a 5-10-minute presentation on a topic they really love, games or trivia or jackbox.tv, etc.
If you have any money to throw at this, you might consider just privately hiring a medical professional - probably a nurse - to review everything going on and prepare a sort of CV of current known diagnoses and treatments and help or actually BE your concierge for dealing with and trying to unify the various doctors working with your partner. Their job would not only be to look for inconsistencies and translate for you, but honestly a little bit to scare their care team into best behavior and answers that actually make sense. They may also have better advice for getting him more comfortable or who you should talk to for more help with that, which is why I'd recommend finding someone local to you and your general regional healthcare environment. Given that you're really hiring them to explain things rather than perform medical care, this might be the perfect gig for a nurse that's currently not working, maybe stay-at-home parenting or retired, and anything you need them to attend can be done via Facetime.
posted by Lyn Never at 9:24 AM on February 28, 2023 [2 favorites]
Sounds to me as if your partner might have eosinophilic esophagitis
Which is known to be associated with Hashimoto's as well as a range of autoimmune disorders:
Food sensitivities, skin problems, and reactions to inhaled substances are all central to the development of EoE:
There is a very helpful 'pathophysiologic overview of EoE' in the body of the article which includes the information that it afflicts mainly males and does typically feature mast cell activation.posted by jamjam at 12:42 PM on February 28, 2023 [4 favorites]
Eosinophilic esophagitis (EoE) is an emerging disease that is distinguished from gastroesophageal reflux disease (GERD) by the expression of a unique esophageal transcriptome and the interplay of early life environmental factors with distinct genetic susceptibility elements at 5q22 (TSLP) and 2p23 (CAPN14). Rare genetic syndromes have uncovered the contribution of barrier disruption, mediated in part by defective desmosomes and dysregulated transforming factor beta (TGF-β) production and signaling, to EoE pathophysiology. Experimental modeling has defined a cooperative role of activated eosinophils, mast cells, and the cytokines IL-5 and IL-13, mediated by allergic sensitization to multiple foods. Understanding these processes is opening the way to better treatment based on disrupting allergic inflammatory and T helper type 2 cytokine–mediated responses including anti-cytokine therapeutics and dietary therapy.
Which is known to be associated with Hashimoto's as well as a range of autoimmune disorders:
Finally, EoE has been associated with a number of autoimmune conditions including Hashimoto's thyroiditis, rheumatoid arthritis, celiac disease, inflammatory bowel disease, combined variable immunodeficiency, multiple sclerosis, and Sjögren's syndrome.115 Table 3 summarizes the known Mendelian diseases associated with EoE and attempts to synthesize what we can learn from them.
Food sensitivities, skin problems, and reactions to inhaled substances are all central to the development of EoE:
Multiple lines of evidence support an allergic etiology as an underlying mechanism for EoE. First, patients with EoE have a high incidence of concurrent atopic disease (Figure 1).3 Recent evidence shows that EoE is correlated with higher rates of asthma and airway hyperresponsiveness.15 Sensitization to cutaneous, ingested, and/or inhaled allergens is likely necessary in the development of EoE, and in some patients, seasonal allergens may play a role.16–18 Second, the success of dietary antigen elimination has provided profound insights into the role of food allergens in EoE. Removing the 6 most common food allergens leads to clinicopathologic remission in 50–75% of children and adults, and further studies and clinical experiences reveal that adding some of these allergens back into the diet leads to reoccurrence of the mucosal eosinophilia.19,20 Third, murine models using sensitization and challenges with oral ovalbumin, peanut, or inhaled aspergillus or dust mite antigen lead to IL-5–, IL-13–, and eotaxin-dependent esophageal eosinophilia.Since it is an emerging disease, I think if it’s at all possible, you should seek out a specialist who knows about it and has treated it before.
There is a very helpful 'pathophysiologic overview of EoE' in the body of the article which includes the information that it afflicts mainly males and does typically feature mast cell activation.posted by jamjam at 12:42 PM on February 28, 2023 [4 favorites]
If he needs time to pass subjectively faster while he waits for doctor appointments or waits out the withdrawal process, playing videogames has always worked like time travel to the future for me. I start a new engrossing game and it's suddenly three weeks later.
posted by Jacqueline at 3:50 PM on February 28, 2023 [1 favorite]
posted by Jacqueline at 3:50 PM on February 28, 2023 [1 favorite]
Best answer: Depending on your budget - a new adjustable bed will make things much easier to bear. Also, strong suggestion that he hook up with some of the still coviding groups and go to virtual hangouts and events. Lots of people attending from bed or other states of exhaustion and medical vulnerability and mostly just having fun together. I would also encourage him to talk on the phone with friends instead of pinning everything on being able to go out.
I suffer in many of the same ways he is - and the only way I get through it is absorbing hobbies (hydroponic gardening and some arts) and distanced friendships. I play Mario Kart and Mario Party with a half dozen people once a week, talk to two different friends for hours on a weekly basis, have zoom coffee dates and am involved in hobby groups. I listen to a lot of books on tape, spend some time outside every day, and just generally understand and accept that my full time job is to destress because anything that pops me up into a state of anxiety or stress exacerbates everything and makes my situation worse.
I don’t know how you help someone focus on what they have instead of what they don’t have, and I know no one who tried to help me down that path was successful. But I read a quote that said something like instead of trying to fix your life, what if you just add one good thing at a time. And I started adding one good thing at a time until I had very little time to suffer. I mean, I still SUFFER and how, but I have adequate distraction and joy that the suffering isn’t consuming most of the time. I’ll still have weeks where it’s the only thing on the menu, but I listen to books and play games and tend my plants.
posted by Bottlecap at 3:00 AM on March 1, 2023 [4 favorites]
I suffer in many of the same ways he is - and the only way I get through it is absorbing hobbies (hydroponic gardening and some arts) and distanced friendships. I play Mario Kart and Mario Party with a half dozen people once a week, talk to two different friends for hours on a weekly basis, have zoom coffee dates and am involved in hobby groups. I listen to a lot of books on tape, spend some time outside every day, and just generally understand and accept that my full time job is to destress because anything that pops me up into a state of anxiety or stress exacerbates everything and makes my situation worse.
I don’t know how you help someone focus on what they have instead of what they don’t have, and I know no one who tried to help me down that path was successful. But I read a quote that said something like instead of trying to fix your life, what if you just add one good thing at a time. And I started adding one good thing at a time until I had very little time to suffer. I mean, I still SUFFER and how, but I have adequate distraction and joy that the suffering isn’t consuming most of the time. I’ll still have weeks where it’s the only thing on the menu, but I listen to books and play games and tend my plants.
posted by Bottlecap at 3:00 AM on March 1, 2023 [4 favorites]
As far as task management goes: a virtual assistant was a godsend for me after I had a series of mental breakdowns a couple of years ago.
posted by creatrixtiara at 9:03 PM on March 1, 2023 [1 favorite]
posted by creatrixtiara at 9:03 PM on March 1, 2023 [1 favorite]
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posted by cotton dress sock at 12:53 AM on February 28, 2023