Post-Intensive Care Syndrome (PICS) - Let's talk

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@rosemarya

Rhoda, I hope that you will have a safe journey to Rochester. I have just now read your message, and I want to encourage you to have all of your questions and concerns written on a list so that you and your husband will remember all of them.

Don't be shy about asking about genetic testing, or about asking any questions. My experience at Mayo has been that they welcome questions, and that they (at all levels of care) will provide answers in way that a patient can understand by breaking down the medical terms. I remember an occasion when a doctor asked for my list, and he read it himself and provided me with very complete explanation of my concerns, and how one could relate to another.

On another occasion, very soon after I arrived at Mayo from ICU in KY, one of the liver doctors asked me to describe the symptoms that I had been experiencing. I recited my list, until I came to a particular symptom that I brushed aside by saying, "O that's not important". (It had been shrugged off as not important at a different hospital) The doctor at Mayo askd me to tell him, anyway. And he wrote it down in his notes.

I understand the anxitey that you are feeling as you return to Mayo. I return annually, and there is always an excitement and anxiety for me, too. My husband and I enjoy sitting in the Ghonda lobby between appointments. We enjoy looking at the artwork that is displayed throughout the many departments, too. I hope you will be able to enjoy a few quiet moments between your appointments and procedures. I wish I could send some warmth and sunshine your way. I am sending a virtual hug.

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@rosemarya so nice to hear from you! Thank you for the encouragement to ask questions as I tend to be shy. Fortunately my husband helps to make sure we get out all the information and questions. It helps me so to hear your experiences and reminds me that all the symptoms are important. I am excited, anxious and hopeful. I too love the lobby and, if I have the right one, the piano music that is often live there, especially at lunchtime. I have added questions regarding genetic testing to my every growing question list. The primary purpose of this visit is to end or minimize the episodes of infection which lead to adrenal and septic shock and the frequent ICU visits and you have reminded me that there isn’t any information or question that is not valuable. I know from Mayo that they are having me come back because they think there is something they can do and I hang on to that hope. I so wish for a return to the life of what I call the ordinary. Work, husband, family, the everyday times that are simple, ordinary and now precious and longed for. Being able to see a friend, make a meal, be with my husband without it being followed by disabling exhaustion or adrenal crisis. Especially longing for less fear of acute ICU level episodes and the freedom to travel a little. Right now we have been asked to stay home and close to the local hospital who knows what to do in crisis as not all hospitals know what to do with my somewhat rare situation. Thank you for your caring and encouragement. As we prepare to fly out on Monday, I am glad for the support. I too send a virtual hug and all my appreciation. I hope to stay in touch. All my best wishes, Rhoda.

@colleenyoung

@rckj, wow Rhoda there's a lot in that paragraph. Imagine the medical education you've given the staff and clinicians at your local hospital. Have you added that to your résumé?

Your experience would be most welcome in the Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

Here are some specific discussions where your participation would be most valuable. You may find others too.
– Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
– Adrenal crisis without cause https://connect.mayoclinic.org/discussion/adrenal-crisis-without-cause/
– Addison's Disease: Tired of being tired https://connect.mayoclinic.org/discussion/tired-of-being-tired/

Fellow Connect member @kdubois shares her story about genetic testing here:
> Learning to Trust Again – My Journey with Drug Intolerance – Experts by Experience https://socialmedia.mayoclinic.org/2018/05/04/learning-to-trust-again-my-journey-with-drug-intolerance-experts-by-experience/

I'd also like to introduce you to @dawn_giacabazi. If your paths haven't crossed yet, it is time they did. Dawn, too, has adrenal experiences. I'm certain their are differences, but also common experiences to share and support.

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@rckj Hello please accept my apologies for the delayed response. @colleenyoung
@rosemarya thank you for the tags!
I have tried my very best to catch up on all the thoughts and concerns.
As you have already highlighted any and all Adrenal issues are complex and essential to survival. They are the mother board that controls our response to all situations. Most importantly our fight or flight response. Just like all hormones they rise and fall throughtout a 24 hour period. I have no doubt you will find great comfort in Mayo Clinic. Is this your first trip to Mayo and the endocrine department?
I am followed by Dr. Schwartz and he is amazing!
I do not have Addison but my Adrenal produces to much aldosterone.

Prayers for safe travel and presence of calmness.
Dawn

@dawn_giacabazi

@rckj Hello please accept my apologies for the delayed response. @colleenyoung
@rosemarya thank you for the tags!
I have tried my very best to catch up on all the thoughts and concerns.
As you have already highlighted any and all Adrenal issues are complex and essential to survival. They are the mother board that controls our response to all situations. Most importantly our fight or flight response. Just like all hormones they rise and fall throughtout a 24 hour period. I have no doubt you will find great comfort in Mayo Clinic. Is this your first trip to Mayo and the endocrine department?
I am followed by Dr. Schwartz and he is amazing!
I do not have Addison but my Adrenal produces to much aldosterone.

Prayers for safe travel and presence of calmness.
Dawn

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@dawn_giacabazi hi Dawn! Thank you for your response. This is my second visit to Mayo, the last being in August, 2017. I am followed by Dr. Chang but she is currently on maternity leave so I’m not exactly sure who I am seeing. I have heard good things about Dr. Schwartz. I really like your description of adrenal disease! Much more concise and clearer than mine! My last visit was to set up a clear treatment plan and was very helpful. This visit is aimed at stopping repeated infections which cause sepsis, adrenal shock and ICU treatment. I am hopeful but anxious. Thank you for your wishes for safe travel and calmness. Very much appreciated and so comforting. Hope to stay in touch. All my best wishes, Rhoda.

@rckj

@dawn_giacabazi hi Dawn! Thank you for your response. This is my second visit to Mayo, the last being in August, 2017. I am followed by Dr. Chang but she is currently on maternity leave so I’m not exactly sure who I am seeing. I have heard good things about Dr. Schwartz. I really like your description of adrenal disease! Much more concise and clearer than mine! My last visit was to set up a clear treatment plan and was very helpful. This visit is aimed at stopping repeated infections which cause sepsis, adrenal shock and ICU treatment. I am hopeful but anxious. Thank you for your wishes for safe travel and calmness. Very much appreciated and so comforting. Hope to stay in touch. All my best wishes, Rhoda.

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This is certainly a very important and complex appointment for you. Some friendly advice gather all medical records including but not limited to all hospitalizations, medication changes, doctors visits and tests. If your appointment is in the afternoon try to drop them off to the doctors pod in the morning so they can review before seeing you. Helps them decide what other tests they will want to order. I always include my list of questions so when we actually meet the nerves don’t get the best of me and I forget what I wanted to say. Also curious if you are keeping any logs of symptoms, dates and times and what you were doing during the episodes? How’s your blood pressure been running?

@dawn_giacabazi

This is certainly a very important and complex appointment for you. Some friendly advice gather all medical records including but not limited to all hospitalizations, medication changes, doctors visits and tests. If your appointment is in the afternoon try to drop them off to the doctors pod in the morning so they can review before seeing you. Helps them decide what other tests they will want to order. I always include my list of questions so when we actually meet the nerves don’t get the best of me and I forget what I wanted to say. Also curious if you are keeping any logs of symptoms, dates and times and what you were doing during the episodes? How’s your blood pressure been running?

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@dawn_giacabazi thanks for the good advice! I have copied and printed out critical labs, hospital admissions, etc. Didn’t know should drop them off before appointment but will now. We are flying out from the east coast Monday, first appointment Tuesday. My husband and I are finishing our question lists today then comparing notes to make sure we have everything. Have some logs, blood pressure drops very low during adrenal crisis. Thank you so much! This is incredibly helpful! Rhoda

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

@sacker

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

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Good Morning, @sacker. Welcome to Connect. I have not experienced exactly the same thing as you, but I have experienced some of the same feelings. I was diagnosed with a liver disease and no one believed I had anything wrong with me, so I quit telling them. To make it even more complicate, it was a rare disease which added to my fear. When my symptoms became obvious and my health deteriorated, they wanted to know why I hadn't told them. It was frustrating when some of them started to look at me differently, and treat me differently.
I have since received a transplant, and I think of it as being a chronic condition in the sense that I will have to be vigilant and be on medications for the rest of my life. My dear husband is the one who stood at my bedside and suffered every moment of my struggle, and has dealt with the fear of losing me. It is difficult for him to talk about, even now, 10 years later. He is the one who insists that I slow down or call the doctor every time I show any sign of anything that he considers unusual. I do get upset sometimes because I feel he is hovering over me, but then I have to remember that he is right and does it out of love.

Do you have any girlfriends, someone who has been thru a serious health issue who is understanding of your feelings that you can download all of this on? My girlfriend with terminal cancer was my strength.

I want to share some places where you can find information and meet others who might have experienced a related cardiac condition.
– Groups -n Follow the groups that interest you. Choose from the groups below or search by keywords.
https://connect.mayoclinic.org/groups/
Pages – Browse Connect pages for newsfeed posts from Mayo Clinic experts. You'll also find useful resources and information.
https://connect.mayoclinic.org/pages/

I believe you.

@dawn_giacabazi

This is certainly a very important and complex appointment for you. Some friendly advice gather all medical records including but not limited to all hospitalizations, medication changes, doctors visits and tests. If your appointment is in the afternoon try to drop them off to the doctors pod in the morning so they can review before seeing you. Helps them decide what other tests they will want to order. I always include my list of questions so when we actually meet the nerves don’t get the best of me and I forget what I wanted to say. Also curious if you are keeping any logs of symptoms, dates and times and what you were doing during the episodes? How’s your blood pressure been running?

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@dawn_giacabazi, such helpful advice to Rhoda before she left for Mayo. @rckj thinking of you as you travel today. Rest well and all the best tomorrow.

@sacker

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

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@sacker, this may sound glib, but this experience will make you a better provider. I bet @andreab and @milindohope83 will have more to add to your message.

Until they join us, let's talk about where you're at today. You have identified that you have PICS. That's step 1 accomplished! You found this online forum to support you. Step 2 done! So now on to Step 3. Keep posting and let us accompany you as you walk this path of acceptance and healing.

You said "I am 45 years old and not ready to be one of my chronically ill pts." I get that. You're the person that helps, problem-solves, cures and so much more. By understanding what you're going through, how will this make you a more empathetic provider? You said you've become fearful, irritable and mean. How do you reframe your situation to be kinder to yourself?

Does this resonate or just sound glib? Be honest.

@sacker

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

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Sacker, Hi, Wow I totally get your frustration and anger, there should be a clearinghouse, somewhere folks suffering from PICUS can get answers on nutrition and oral supplements, because just upping calories will put on fat not functional muscle. After an ICU stay especially on a respirator muscles go into catabolic state and from what Ive read can continue in that state. And physical rehab, athletes have resources to measure their lean muscles and track their gains. Why are we not prescribed supplements geared to the needs of PICUS people, modern strength and endurance training like athletes have? My husband is 70 but before viral pneumonia he was very active and vital, now he doesn’t want people to see him in his weakened state. He has made improvements but they seem slow and he’s scared he will never get back close to what he has lost. The people on this forum are awesome and give moral support, and have given me great pointers and insights into what my husband is going through. I know we are not the only ones struggling. We have an appointment Friday with PICS Recovery Clinic at Vanderbilt I am praying they have answers and the physiologist is someone my husband feels comfortable confiding in. I’m sorry if I rambled but you were the first person that alluded to frustration and anger, I felt despite our almost 30 years difference in ages I get it.

@colleenyoung

@dawn_giacabazi, such helpful advice to Rhoda before she left for Mayo. @rckj thinking of you as you travel today. Rest well and all the best tomorrow.

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@colleenyoung @dawn_giacabazi thank you both and everyone else for your good advice and kind wishes. I am at Mayo now and things have swung into action. Several possible answers and solutions! We will be here longer than we expected, at least through the beginning of next week. Excited, scared, hopeful. Everyone is actively searching for answers and a prevention plan. Such an amazing place! Thank you again and all my best wishes. Hope to continue to correspond. Rhoda.

I haven't seen anything here that sounds like what i have experienced. At 72 and after a long miserable perimenopause and menopause with horrible severe hot flashes…i am now getting them again only worse. Out of nowhere i will feel hot on my back chest and then all over. I get light headed and the heat in my chest & back becomes so hot and intense its unbearable and then on top of that i have a panic attack. I have ended up calling 911. I went on bio identical hormones but dr. afraid i will have a stroke (which still may happen with those hot flashes). I am now taking Gabapentin but that may ruin my kidneys. Anyone have anything like this that they could share with me? Thank you!

Liked by 13ctmeoy12

@sacker

Good Morning,
I have a long history with medicine as I am in a solo practice and provide care for Family practice and OB, so being on the receiving end of care has been challenging. I had an unexpected month long visit to the ICU after cardiac arrest a few months ago. I focused on root cause and how to prevent this from happening again. Prior to this, I was healthy and had no health concerns. Now…I am ''chronically ill'' with no answers as no one seems to have treated my new condition. I am realizing now that I am back to work part time, that I am a much different person that before! physically and mentally. I have search Colorado Springs and no one has heard of PICS but I completely have it. I feel the minute I walked out of the hospital I was left to my own devices, as my providers really have no idea so at this point, don't ask me to follow up with them as they don't have answers. I have become fearful, irritable and just a mean person I have noticed, which is not me at all! I yell at my husband for checking on me, as I just want to be normal, but everyone looks at me like im sick. I am 45 years old and not ready to be one of my chronically ill pts. I really have no idea where to start looking for treatment as no one believes me that this is happening. Any guidance would be great!

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Hello @sacker . I apologize for the delay in my response and also want to thank you for joining this conversation and sharing your insights. I was away at a conference by the Society of Critical Care Medicine. I do a lot of work with many great people at that organization through the Thrive collaborative where we focus on helping people recover from critical illness to the very best of their capacity. I want to share some important links with you that I think you might find helpful. The first is from our Mayo Clinic Connect page and it is a quick overview of PICS – the active links within this blog will send you to the related page for more detailed information: https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/

The other site I want to share is the Thrive site by SCCM. Explore this page as well, I am sure you will find helpful information: https://www.sccm.org/MyICUCare/THRIVE/Post-intensive-Care-Syndrome

There is a lot of information out there, but one of the most important things for you to know at this time is that you are not alone in feeling this way. While I was at the conference, I heard a very powerful statement given by one of the leading experts in this area Dr. Iwashyna. To paraphrase, he said: "Just because you are not who you were, doesn't mean you cannot become a new version working off of the many strengths that you have".

Over and over again we heard from experts and patients alike who shared and acknowledged that previous "normals" no longer exist after critical illness. At least in the short term. And this can be devastating to many people, especially if you have not been forewarned. I am hopeful that you will find this forum and the information that I shared with you helpful and healing. Please continue to reach out to everyone in this group – there is so much power behind these connections.

@colleenyoung

@dawn_giacabazi, such helpful advice to Rhoda before she left for Mayo. @rckj thinking of you as you travel today. Rest well and all the best tomorrow.

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@colleenyoung and all it’s Rhoda back from a very rough ride. Mayo was as usual helpful, whirlwind and cold, as in physically cold. 50 below zero actual and two foot blizzard while we were there. Fortunately able to use tunnels. No definitive answer for stopping adrenal crises except updosing hydrocortisone when ill. They are looking for rare exotic illnesses which is scary. Testing continuing back home and sent into Mayo. Had a severe adverse reaction to MRI contrast dye (gadolinium) while there, another hospitalization. Sigh! Worse how ever when returned home. About 5 days back from Mayo couldn’t breathe, cyanotic, blue nails and lips. Oxygen saturation 83. Whoa! My home based physical therapist called husband and MD, fast track to ER and ICU. I was in denial, thinking asthma attack. Turns out to be large bilateral pulmonary embolisms with right cardiac “strain”. Enlarged heart, right side due to not enough lung serface to pull in oxygen. On Lovanox injections ( wonderful husband doing them twice a day) and Coumadin (blood thinners) basically forever. Will be just Coumadin when I get a therapeutic level, blood levels every day. Will take months to return to baseline with lots of help. Fortunate to have the help. Back home after 10 day hospitalization, 4 days in ICU. Still I am strangely numb and grumpy, mostly in my head because I figure other people shouldn’t have to put up with me. Home now a few days, don’t know what to feel just following medical advice. Coumadin is a hard drug to take, lots of food restrictions and have to be careful in general. Covered with gigantic bruises. I mean like grapefruit sized. I hate that everyone is now asking me if I’m safe at home with my wonderful husband. Oh well, that’s minor. Numbness bothers me, feel odd, I’ll am affectless but need to cry. Didn’t need another major life threatening illness. I feel like I’m living with internal time bombs. So physically and emotionally tired, any and all responses welcome, I feel bewildered. Hope everyone here is okay maybe even stable and well. Thanks to all in advance. Rhoda

@rckj

@colleenyoung and all it’s Rhoda back from a very rough ride. Mayo was as usual helpful, whirlwind and cold, as in physically cold. 50 below zero actual and two foot blizzard while we were there. Fortunately able to use tunnels. No definitive answer for stopping adrenal crises except updosing hydrocortisone when ill. They are looking for rare exotic illnesses which is scary. Testing continuing back home and sent into Mayo. Had a severe adverse reaction to MRI contrast dye (gadolinium) while there, another hospitalization. Sigh! Worse how ever when returned home. About 5 days back from Mayo couldn’t breathe, cyanotic, blue nails and lips. Oxygen saturation 83. Whoa! My home based physical therapist called husband and MD, fast track to ER and ICU. I was in denial, thinking asthma attack. Turns out to be large bilateral pulmonary embolisms with right cardiac “strain”. Enlarged heart, right side due to not enough lung serface to pull in oxygen. On Lovanox injections ( wonderful husband doing them twice a day) and Coumadin (blood thinners) basically forever. Will be just Coumadin when I get a therapeutic level, blood levels every day. Will take months to return to baseline with lots of help. Fortunate to have the help. Back home after 10 day hospitalization, 4 days in ICU. Still I am strangely numb and grumpy, mostly in my head because I figure other people shouldn’t have to put up with me. Home now a few days, don’t know what to feel just following medical advice. Coumadin is a hard drug to take, lots of food restrictions and have to be careful in general. Covered with gigantic bruises. I mean like grapefruit sized. I hate that everyone is now asking me if I’m safe at home with my wonderful husband. Oh well, that’s minor. Numbness bothers me, feel odd, I’ll am affectless but need to cry. Didn’t need another major life threatening illness. I feel like I’m living with internal time bombs. So physically and emotionally tired, any and all responses welcome, I feel bewildered. Hope everyone here is okay maybe even stable and well. Thanks to all in advance. Rhoda

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Oh my goodness, @rckj what an ordeal. I can hardly imagine. I'm not surprised that you're grumpy and numb and not sure how to feel. You still have to recuperate. Be kind to yourself and give it time. Crying is okay too. Thank goodness for your husband. He sounds like a gem.
It is so tiresome to constantly need care. I know that you are physically and emotionally tired and you're pulling from reserves that are empty. But I wonder if it might give you pleasure and satisfaction to do something for someone – like your husband? Keep it super simple. Ask him to sit with you, take his hand and simply let him know how appreciated he is. I'm sure he knows that and no doubt you tell him. But look at it with a slightly different perspective. Instead of seeing as a position of vulnerability and needing him. Think of giving him a gift of appreciation from a position of strength. It's the "care" you can give him. Is that crazy?

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