# emotionally supporting spouse through illness / hospitalization



## D0nnivain (Mar 13, 2021)

I know DH isn't the most sensitive guy & I know I'm intense but I can't help it. 

I agreed to donate a kidney to a dear friend of mine. The surgery is in 2 weeks. 3-4 days in hospital & 2-3 weeks at home on bed rest where I won't be self sufficient. I'll have trouble walking, getting in out of bed by myself due to the abdominal wounds, & will need help / supervision in the bathroom. 

DH was all on board to help. He's taking family leave from work for 2 weeks & will work reduced hours from home the 3rd week just in case. I will have 5 pound lifting restrictions for a few months, gradually increasing over time. Probably 6 months to fully bounce back, if all goes well. 

He has a growth of some sort on his chest that he's now decided to have addressed. I asked him to please schedule the in person appointment to get it checkout out any day other than the 1st two days I'm home from the hospital. I'm really afraid of being alone & vulnerable in the beginning. He got mad at me & said the appointment will be whenever the appointment will be. To hear him dismiss my fears really hurt. I'm not trying to delay his treatment but he's ignored this growth all summer So why is it so terrible that I'm asking for 2 days? There isn't anybody else who can stay with me for 4+ hours while he's out getting this done. I suppose I could hire a CNA but I resent having to do that. 

We also talked about my expectations regarding my hospital stay. I get they are over the top to some people but it's what I do. Whenever my parents or other close friends / family were in the hospital, I was right there the whole time, staying for 12-16 hours; sometimes more, including sleeping there when possible. I would chart the comings & goings in a notebook: what staff came into the room, for what purpose, what meds were given & double checking by looking at the pills & confirming the dosage. I can't tell you how many medical mistakes this prevented for my parents. The numbers are staggering -- at least one major event per hospital stay for them. I know how easily medical mistakes can be made especially when the poor staff after overly taxed/ Obviously this is a concern with the pandemic. I'm scared. Especially immediately post-op I will not have the mental wherewithal to do this for myself. DH told me I'm being silly. That I have to trust more & stop being so suspicious He also claimed that he's incapable of doing what I ask. All I want him to do is write down who shows up & what they are giving me. If he looks at the meds he can quickly look up the pills on line to confirm they match in size & shape. I'm sure at the pre-op meeting we can ask about the most common meds I will be taking & can familiarize ourselves with them in advance. I've been doing this since I was in HS; granted then I brought a book with the pill pictures with me before the internet, but it's not that hard. 

How do I get over the idea that my own husband doesn't love me enough to see to my safety during a critical time when I'm extremely vulnerable? If he can't do this for me with all sorts of advanced notice, what is he going to be like later in life in an emergency? This has been a life long terror of mine my whole life -- being medically vulnerable without an advocate. 

Help! I don't want to end up hating or resenting my husband.


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## minimalME (Jan 3, 2012)

I don’t know you two at all, so this is pure speculation, but I find it utterly bizarre, and somewhat passive aggressive, that he would even be thinking of getting a medical procedure done at the same time you’re going to donate a kidney. 😳

In terms of taking notes for you at the hospital, he’s clearly told you that he’s not going to help. If it were me, I wouldn’t ask again. Do you have a friend who might help?

Your husband sounds very selfish.


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## D0nnivain (Mar 13, 2021)

minimalME said:


> Do you have a friend who might help?


Given that this is a transplant, where the recipients have their entire immune systems suppressed with anti-rejection drugs the hospital tightly controls who can come in or out. With the pandemic, it is a no visitors policy other than 1 person per patient so even if somebody was willing they could not do this in the hospital. 

On the days I'm home, everybody else works. I have been wracking my brain trying to come up with somebody to ask. Maybe it will be OK & his appointment will not be on those 1st 2 days I'm home. 

He's generally not a selfish guy. This has thus thrown me for a loop.


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## minimalME (Jan 3, 2012)

But you are allowed to have one person? Consider someone who’s willing to be helpful. There are sites where you could even hire a personal assistant, if you have no other family or friends.

I’m a bottom line sort of person 😬 and so, it’s possible to get exactly what you want, just not with your husband.

Edited to add - I think you’ll find if you accept responsibility, and just take care of it, without trying to force him to do things he obviously doesn’t want to do, any resentment will fade quickly.


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## In Absentia (Aug 21, 2012)

I don't know you either, but from what I can read in your post, maybe you've been obsessing a bit too much lately (understandable) and you husband snapped...


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## bobert (Nov 22, 2018)

Was he on board with you doing the surgery?


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## D0nnivain (Mar 13, 2021)

He was on board with the surgery until I asked him to do something. 

Surprisingly I wasn't obsessing. I was calm & almost nonchalant -- very odd for me. I met with a friend who was a donor several years ago so she could share her experience. That is when the gravity of what I'm doing sunk in. Last night was the 1st time I verbalized my expectations about his role in the hospital beyond the already requested time off. 

My ability to manage multiple things vs. his inability to manage more than one thing at a time or think / plan more than a few hours in advance has been a source of friction in our marriage before. I made peace years ago with my roll as the manger / planner. But now that I need help, I'm stressed by him not even trying. Again, I am trying to manage my expectations for him. Be there & take notes; don't make a doctors appointment of his own on the 1st 2 days I'm home from the hospital. Am I really being unreasonable / expecting too much?


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## minimalME (Jan 3, 2012)

D0nnivain said:


> Am I really being unreasonable / expecting too much?


You're not being unreasonable, but that's not going to change or help this situation.


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## ConanHub (Aug 9, 2013)

First, you are undertaking an incredibly generous sacrifice with the most noble goal of saving a life. You have my admiration.

Secondly, I don't know your dynamic, how long you've been married, children, how satisfied you both may be in your marriage, etc. so I would be guessing as to what is motivating your husband.

He seems frustrated?

I'm not him nor do I have much insight from just one side. I would have to probably have been reading your posts, about your husband and yourself, for a while to understand.

I'm extremely protective of my wife and I can't fathom not doing everything in my power to care for and protect her if she were undergoing the donation of a kidney. We would have probably gone rounds for a long time arguing about wether she should do it or not because I wouldn't want to risk her.

She underwent an elective procedure several years ago and it took her over a decade to get me on board with it and I couldn't be kept from her before, during and after the procedure.

I was even emotional for days afterwards as she recovered.

I don't understand your husband but I don't know enough to understand him.

I'm hesitant to pass a judgement on him though it would be pretty easy given my own stance on men caring for their women.


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## Diana7 (Apr 19, 2016)

You are doing a lovely thing.

In the UK visiting times would not let anyone be there for that number of hours (unless the patient is a child when parents can stay all the time), so it couldn't happen anyway.
I think visiting is generally about a couple of hours in the afternoon and the same in the evening. I have had ops and I wouldn't have expected my husband to have stayed all day(even if he was able to) or kept a written account of everything that happened. I honestly have never heard of anyone doing that. All drugs are checked and given out by 2 different nurses so I didn't worry about that. I wouldn't have wanted someone there all day either as when I feel bad I just want to be left alone. Coming in once a day for a couple of hours would be what I wanted/expected of my husband. You have all of the trained staff there 24/7.

Many men especially are bad at hanging around in hospitals, so please cut him a little slack.

As for when you come home, it's probably not likely his appt will be on those 2 days is it?

I appreciate that you are very anxious, but he has the time off to be there for you so I am sure he will do fine.

When I had a hysterectomy I was a single mum. I came home to the children (teens) with no outside help, somehow we managed fine.

Just wanted to say, when you say 2-3 weeks bed rest, please please get up as much as you can and walk around. It's much better for your recovery and you are less likely to get a clot if you do. Lying in bed all day isn't usually recommended once you have recovered from the anaesthesia. I still remember the nurses nagging us to get out of bed and walk up and down the corridor after a couple of days of our hysterectomies.


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## Diana7 (Apr 19, 2016)

D0nnivain said:


> Given that this is a transplant, where the recipients have their entire immune systems suppressed with anti-rejection drugs the hospital tightly controls who can come in or out. With the pandemic, it is a no visitors policy other than 1 person per patient so even if somebody was willing they could not do this in the hospital.
> 
> On the days I'm home, everybody else works. I have been wracking my brain trying to come up with somebody to ask. Maybe it will be OK & his appointment will not be on those 1st 2 days I'm home.
> 
> He's generally not a selfish guy. This has thus thrown me for a loop.


If it happens surely someone you know could have a day off work?


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## D0nnivain (Mar 13, 2021)

I do plan to get up & move about as much as possible. I understand that is best for preventing blood clots. I'm just worried about what if I fall. My grandmother, mom & dad ended up dying from complications after nasty falls. 

While some people's preference may be to not want somebody with you in the hospital, knowing that I have been there for others & caught numerous problems, I will be terrified to be alone. DH is aware of many of the mistakes I have caught because he was present to see me catch them. So he has knowledge of what can go wrong.

I wouldn't feel right asking somebody, not related, to take time off work. Before I did that I would hire a stranger.


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## Diana7 (Apr 19, 2016)

D0nnivain said:


> I do plan to get up & move about as much as possible. I understand that is best for preventing blood clots. I'm just worried about what if I fall. My grandmother, mom & dad ended up dying from complications after nasty falls.
> 
> While some people's preference may be to not want somebody with you in the hospital, knowing that I have been there for others & caught numerous problems, I will be terrified to be alone. DH is aware of many of the mistakes I have caught because he was present to see me catch them. So he has knowledge of what can go wrong.
> 
> I wouldn't feel right asking somebody, not related, to take time off work. Before I did that I would hire a stranger.


Have you a kind neighbour or friend who could come in for 3 or 4 hours if needed?
As I said though the chances of him having to have it done on those two specific days are presumably very small.


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## Diana7 (Apr 19, 2016)

D0nnivain said:


> I do plan to get up & move about as much as possible. I understand that is best for preventing blood clots. I'm just worried about what if I fall. My grandmother, mom & dad ended up dying from complications after nasty falls.
> 
> While some people's preference may be to not want somebody with you in the hospital, knowing that I have been there for others & caught numerous problems, I will be terrified to be alone. DH is aware of many of the mistakes I have caught because he was present to see me catch them. So he has knowledge of what can go wrong.
> 
> I wouldn't feel right asking somebody, not related, to take time off work. Before I did that I would hire a stranger.


Was this in a private hospital? 
They seem pretty inefficient!


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## TXTrini (Oct 2, 2013)

Hi Donnivan, 
That's a wonderful gesture to make for your friend, do you think your husband might be jealous? It sounds like he's resentful that you're doing this for a friend, maybe he feels less important to you? 

At the risk of projection, I'll share my experience... I had major surgery twice during my 12 1/2 year marriage. The first time, my exH was wonderful, everything I could have asked for, the second time, completely heartless. I didn't understand until I found out about his affair. 

Have you noticed other changes in his attitude towards you or his behavior besides this? His behavior is so insensitive especiallysince you already discussedit and got his approval, I'm sorry you are dealing with this now.


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## pastasauce79 (Mar 21, 2018)

What a priceless gift you are giving to your friend! As someone who has a smaller kidney, it's amazing what you are doing. 

Some people have terrible bedside manners. My husband would be terrible at taking care of me during a major surgery. He could be by my side, but he'll be completely lost about medical care. 

Maybe you should look into hiring a nurse aid while you are going through the healing process. I trust the nurses at the hospital, the majority of them do their job right and sometimes there's not much they can do other than make sure patients are stable. 

If you are staying at the ICU for a few days, you'll have a nurse who won't have more than 2-3 patients to take care of. 

Are you going to be aware of what's going on right after the surgery? I guess it all depends on how much pain you'll be in after the procedure. 

If he can't move the appointment, ask someone to come and help you at home. I understand your resentment, but I understand some people are incapable of showing the support we need, and I think it's not worth it to be upset about people's shortcomings. They are who they are. I'm sure your husband has other good qualities, but being a nurse might not be his forte.

Do what you need to do in order to have peace of mind. Talk to family or friends and see if they can help you for a few hours if you need to.


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## TJW (Mar 20, 2012)

I'm sorry that you don't have more support from your husband. I also don't think this is going to change.

I wanted to say that what you are doing is a perfect example of love. The gift of life to someone in need of it. I am indeed humbled and I am thankful that our human race has people like you.


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## sokillme (Jun 10, 2016)

Are you sure he is not worried and unhappy you are doing something that has a level of risk for your friend? What were your discussions like? Did you ask how he felt about it or did you say I am doing this?


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## DownByTheRiver (Jul 2, 2020)

Whoever he's making the appointment with, call them and tell them not to make it in those two days and that you'd rather they didn't mention the phone call to him. Give them a brief synopsis. They won't be able to tell you anything but they can certainly listen and decide for themselves whether it's in his best interest to make that appointment at that time. And if something slips up and it gets made then anyway, call them and tell them to change it. 

He clearly has some resentment about something and also isn't very high on the caregiver meter. Now I will say that a lot of people would balk at being in the hospital constantly for that length of time. My sister was in the hospital for 6 months and I understand what you're saying about having someone paying attention to what's going on, although I have to tell you that even if you're there, you are often not privy to what is actually going on and the other staff is often unable to even get ahold of the doctor. Interns would gripe to me about it and said they left Dr. notes all the time and he didn't get back with them. He just did surgery all the time. 

One of the hardest things was I would get my sister what she needed as far as personal effects and trying to keep her phone charged, but they would move her to a different room or ward and leave it all behind. 

You will have your phone on you so you can look up the meds whenever you're awake. Of course a lot of the meds they give you in the hospital are IV meds. 

You could hire someone to be there instead of him but they're not going to be there for more than one shift. 

I don't have a solution for you. I think you should sabotage his appointment whether he likes it or not or finds out about it or not, and then he's just going to do what he's going to do and all you can do is hope he has enough human kindness in him to do more than he acts like he's going to do now. 

You also have the option of requesting to go to a nursing rehab type facility after the surgery. It would have to wait until you were cleared by the doctor. They mostly concentrate on rehab and getting you up and moving what you will be needing to do. They're less hectic than a hospital generally. You might have to ask your doctor to recommend that. 

A friend of mine just lost one of his kidneys a few months ago. He just went and stayed with a friend afterwards. I didn't get the idea that he was helpless for very long because we kept talking about getting together to have lunch but never got it done. 

So if it's any consolation, this may not be as debilitating as you think. 

Keep your phone on you at all times if he's not around so in case you fall you can call EMS. I'm hoping your husband will come through for you even though he's fighting against it right now.


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## DownByTheRiver (Jul 2, 2020)

Is it possible you and the person who's getting the kidney could share a room and kind of pool resources?


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## D0nnivain (Mar 13, 2021)

He's not having an affair. He doesn't resent me or my decision. It's not about the attention. Actually when we were waiting on some test results he said if I wasn't compatible he'd get tested. Since I am, he is now planning on telling a guy he served in the military with that he's willing to get tested for him. That guy is not on the UNOS list so he's not as critical as our friend. DH also loves & admires her husband who is a fellow Marine. 

All of this is more about DH being clueless which as I said is just who he is but I'm cranky because I really need him to step up now. 


DownByTheRiver said:


> Is it possible you and the person who's getting the kidney could share a room and kind of pool resources?


No because he can't be in her room. She will have NO immune system once the surgery happens. Few people can go near her. The fewer the better.


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## SunCMars (Feb 29, 2016)

...


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## D0nnivain (Mar 13, 2021)

I'm almost 2 weeks post op. DH didn't do for me what I would have done for him but I'm over it. He kept friends updated about my condition when I couldn't. Two of them shared with me how scared, overwhelmed & vulnerable he was. 

I'm getting a bit more perspective -- that was is so easy, normal & appropriate from my perspective is herculean for other people so I have to accept that he's giving me what he can -- maybe the most he has -- and be grateful for that rather than annoyed that he's not giving me when I would be giving if the roles were reversed.


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## Justsurviving85 (Nov 8, 2020)

minimalME said:


> But you are allowed to have one person? Consider someone who’s willing to be helpful. There are sites where you could even hire a personal assistant, if you have no other family or friends.
> 
> I’m a bottom line sort of person 😬 and so, it’s possible to get exactly what you want, just not with your husband.
> 
> Edited to add - I think you’ll find if you accept responsibility, and just take care of it, without trying to force him to do things he obviously doesn’t want to do, any resentment will fade quickly.


I hope this person did just as you suggested and hired some REALLY EXPENSIVE help for hubby to pay 😂😂


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## Justsurviving85 (Nov 8, 2020)

D0nnivain said:


> I'm almost 2 weeks post op. DH didn't do for me what I would have done for him but I'm over it. He kept friends updated about my condition when I couldn't. Two of them shared with me how scared, overwhelmed & vulnerable he was.
> 
> I'm getting a bit more perspective -- that was is so easy, normal & appropriate from my perspective is herculean for other people so I have to accept that he's giving me what he can -- maybe the most he has -- and be grateful for that rather than annoyed that he's not giving me when I would be giving if the roles were reversed.


Say what? Are you seriously going to accept that lame excuse? He can be scared, overwhelmed and vulnerable all he wants but how does this prevent him from helping. My wife has just been diagnosed with a very aggressive form of breast cancer and I promise you he can’t be any more scared and overwhelmed than I am but I’m still going to bust my ass to help her anyway I can. When married two becomes one so by not helping you he’s in a way not helping himself. Tell him to put on his big boy pants


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## D0nnivain (Mar 13, 2021)

justsurviving85 

I'm sorry your wife has breast cancer. You will both be in my prayers. Medical science is amazing so hopefully you will have a good outcome. 

My husband did what he could & I'm happy with that. Leading up to my surgery I was scared. Fear makes people do crazy things. In the end as far as I'm concerned he was there for me. If you are unhappy with how I expressed my gratitude & you think he should have done more, you are welcome to your opinion but I don't have to share it. 

Thanks for commenting.


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## Bobby5000 (Oct 19, 2011)

You sound like a nice person and are doing the right things trying to get over his lack of attention and contribution. Sometimes things are one time episodes but he should make it up to you. It is a wonderful that you are helping to save a friend's life.


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