How can I help my husband?
Hi Everyone, My husband is having an open radical nephrectomy of his left kidney and probably his adrenal gland in a week. I would love to have your suggestions as to how I can make him more comfortable during his hospital stay and when he gets home. What did you find to be helpful and what helped? Thanks so much!
Comments
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Hi, Charm
Welcome to this site. As you probably have figured out by reading posts, the members on this forum are pretty special. I'm sure you will get a lot of responses to your question.
Let me be the first to say that without the strength of my wife, I would have had a very hard time with diagnosis, surgery, and then recovery. She was always positive and looked for the bright spots in this journey. Many times she didn't say anything, but the comfort of her touch and her presence gave me strength. Her encouragement prior to and after surgery helped during appointments and recovery. Her humor lightened the mood and helped me smile when I was in pain. She protected my privacy and allowed me to be alone when I needed and filtered visitors so that I could rest and gain back strength. She was my taxi driver, meal getter, pillow fluffer, blanket tucker, middle of the night pain med deliverer, door holder, and appointment organizer.
I'm not sure if I directly answered your question or not, but I do know that I'm going to give my wife a hug tonight and thank her again for all she did and does.
Stub
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I'll give my opinion based on
I'll give my opinion based on the assumption he's going to have an open operation, not a minimally invasive one.
First, he's going to be sore. In an open operation, the surgeon generally has to cut through some muscle mass and that hurts when it starts to knit back together. Get him a good pillow to hold onto because if he has to cough, sneeze, laugh or, sometimes, just plain move, the support of the pillow makes it bearable.
Next, while he's in the hospital, bring some books if he likes to read or an iPad or tablet if he likes to be online. It'll help to pass the time.
They'll give him an incentive spyrometer to use while in the hospital and at home. It's a little tube thing that is for breathing exercises. Make sure he uses it. One of the common complications from surgery is pneumonia (I know because I contracted it in 2010 when I had a major abdominal operation) and these breathing exercises help with preventing that.
Walk with him just as soon as the medical staff says it's ok to do so. Walking gets everything restarted in the body, and it greatly speeds the healing process.
When he's ready to go home, if he doesn't already have some, get some sweatpants for him to wear and some slip-on, slip-off shoes. He won't be leaning over to tie shoelaces for a while.
I can't really comment on pain medication since I have voluntarily taken only one dose of pain medication in my life and that got me violently nauseous. I'm fortunate, however, in that I seem to have a ridiculously high tolerance for pain, so I didn't need the meds.
Be patient and supportive, but also be a little demanding. I won't speak for others, but I've had three operations in my life (two abdominal and the partial neph), I was very depressed after each one of them, and my wife had to gently (and sometimes not so gently) kick me in the butt when I started feeling too sorry for myself.
Best wishes to your husband for a successful procedure and a swift recovery. And thank you for being such a good spouse and reaching out to find out what you can do to help him.
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Been there, done that
Sorry hubby is in this very select organization, and you, too.
Don't worry, the hospital will take care of his needs while he's there. Part of your job then is to spend time being nearby. He will find it difficult to even reach out for a glass of water at first. That will get better after a day or so. After the nurse has gotten him up to walk for the first time, he will start to need to take several short walks a day. You go with him so he has someone to hold his arm. His legs will feel wobbly at first. Once the effects of the anesthesia have passed, he'll start to feel better. Without complications, he should be out in about 3 days (+ or -).
At home: recliner chair or couch if possible, plenty of water or non-carbonated drinks available, easily digestible foods-noodle soup, bananas, yougurt, rice, baked potatoes, oranges, etc.. The colon takes a while to get back to life and functioning effeciently-lots of vegetable roughage or heavy and/or fatty proteins can cause dumping---constipation and/or diarrhea.
Bathing: we already had a hand held shower wand and a shower stool, but those are nice. It can be fatiguing just standing upright to shower and it feels sooo good just to sit in the warm rain. Hot water on the incision can cause itching, so have him finish off with cooler water.
Sleeping: He may want to sleep in a recliner the first few nights home, as he can get out of the chair more easily to go to the bathroom. My bed was too high, and I had to make a step stool out of an upside down beverage crate with a couple of towels over the bottom. Gut muscles will be weak so lifting his legs into and out of bed may be difficult. It will improve. Pain pills work-don't allow the pain to get too severe, as it takes longer to bring the level back to neutral. But try to wean off them as soon as possible as they are constipating.
Ice packs with a towel can help with inflammation, but not directly against the skin or you can get freezer burn. Others have suggested wearing wrap-around back brace girdles, but my incision was so long that I didn't want anything touching me and that tight. Of course, comfortable clothes-t shirts or sweats are the order of the day.
Visitors should bring in a meal to serve everyone in the family and then LEAVE. Entertaining guests, even relatives, is tiring to both of you. Regretfully, some don't recognize signs that they should be leaving ASAP, so you may need to suggest hubby needs to take a nap.
And nap he will. It can be boring to just sit and do nothing, so it's easier to close and rest your eyes. Sometimes sleep just happens.
I'm sure others will see I may have missed something. Most of all, he should pace himself. After maybe 5-7 days there will be the break through and he'll feel so much better from having had the surgery. But the body is not healed from all the incisions, exploration, and effects of medications for at least 6 weeks. A rule of thumb is that for every day you are laid off from exercise/doing normal daily routines, etc., it takes 3 days to gain back what you've lost. (think an athlete or even a runner). If you are down a week, it takes another 3 weeks to get back how you were a month ago.
Don't hesitate to come on here and ask questions. We're here to help the "newbies."
All luck and hugs,
donna_lee
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Take care of yourself too!
Others have already given you great advice. I might add that you need to look after your own needs as well. For example, my surgery ran 5.5 hours--much longer than expected. Thank goodness friends from our church were at the hospital to sit, comfort and pray with my wife during that long ordeal.
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A lot has been covered
But I would strongly suggest getting one of those velcro lumbar supports. Kind of helps when he's trying to get upright and walking, etc. That helped me a lot, as well as using a pillow to splint those sore abs when coughing or sneezing. Another poster will mention using dry ice with the lumbar support. I wasn't aware of that when I had my surgery or I would have tried it. I had a robotic partial and didn't have much in the way of pain, but everyone is different. If he's having a lot of pain just try to stay ahead of it with meds. And make sure he uses the incentive spirometer. Ideally, he should use it about 10 breaths per hour when awake. Especially the first few days or until he's up & walking around consistently. Between the anesthesia, pain meds and pain in general we tend to breathe more shallow than whats good for our lungs. The last thing he'll need is pneumonia setting in.
Best wishes. I'll be praying for you both,
Donna~
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Thank you for the suggestions
Thank you for the suggestions. Right now, it helps to stay busy and try to anticipate some of what he will need after the surgery. My husband is a retired engineer and right now he is very much in his head. He doesn't use the word cancer, so I know that he is struggling, although he says he is not anxious. He has a wonderful group of doctors on his team at St Josephs Hosipital in Orange, Ca. He has a case manager and a Registered Nurse Cancer Navigator who are very helpful. I think that I am more anxious and sad than he is right now. I find myself being a bit accident prone and forgetful. My friend called it "grief brain". I am trying to stay more centered so as to not do something stupid like book a flight out of the wrong airport (yes, I did that...). Aaron has three tumors, one on the right and two on the left. The doctor is only dealing with the left kidney during this surgery, with a watchful wait on the right kidney. He already has significantly reduced kidney functioning and it was a bout of painful gout that led to the ultrasound that found the masses. I worry about his kidney functioning after the surgery but we have been told that although his kidney functioning will take a hit, he will be ok. I am thankful that we have good insurance and great doctors. Taking it one day at a time and praying for the best. Again, thank you for the support. Charmays
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St Joseph Orange...
Is a great place. Just as they have a super team for your husband, they are there for you, plus can connect you with additional resources as well. Spiritual Care Services is not just about religion, nor is Social Services / Case Management just about ordering bedside commodes for at home. They're good people.
Keep us posted --
Jerzy
You didn't by any chance book a flight out of Ontario Canada instead of Ontario California, did you? It's also a nice airport, but a heck of a commute from SoCal
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Journal
Sorry you both are going through this. My husband was in a fog for quite awhile.....I kept a journal for meds, when they were given and how much, ( It's sometimes hard to remember) also, side effects, Pain (where, and if the meds helped), scan appointments, doctor appointments. Keep some sweets in the house....as a former hospice nurse and now helping my husband navigate this, it is a fact that patients develop a sweet tooth even if they have never had one before. I bake several times a week.
Quiet time together.....we have a lovely supportive family...they are wonderful (kids, grandchildren and parents), but have found that we are turning inward toward each other more. We simply sit together, we talk if we want-or not. this has become very special for us both.
Everyone else has already gone through the rest : ) this is an amazing resource with wonderful people who have some great advice.
Good luck to you both
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Sorry you and your husband
Sorry you and your husband are facing such difficulty, and wishing him successful uneventful surgery
In my case, i needed more of emotional support than physical one. My husband was in denial for long time after my surgery, didn't want to talk about it, kept saying i was cured and there was no reason to think about possible recurrence. I wasn't able to open up about my emotions and kept crying once o was alone and didn't talk about my diagnosis with anyone including my mum, ci workers, family members. Just few close friends knew the story and i talked to just one of tbem about my emotions. I ended up feeling lonely, frustrated, depressed and hopeles few months post surgery.
Then i saw a therapist. He helped me recognize how important it is to open up with my husband and let him know how i felt, so i did it, I both cried and admit we were both terrified of loosing each other over this disease. Since then i talk about all emotions related to this issue with him and let him know how i feel at the moment, once i have non stop pain which reminds me of possible recurrence, scanxiery, happiness over good c.t report, nightmares, everything. And it helps us feel more connected and calm. So i think it's good to find out what sort of emotional support he need for at least one year post surgery date. Let him travel this though road by you and find comfort in you.
From another point of vies, never ever forget yourself, go to gym, do yoge, listen or play music, read books, do whatever makes you feel beeter. You are a caregiver and for being able to do your job you need to be healthy and energized
Forough
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Hi, Charmays,
Others have already encouraged you to take care of yourself also. Forough said it well: "You are a caregiver and for being able to do your job you need to be healthy and energized." Try your best to get enough sleep, stay hydrated and nourished, and do something to help you de-stress or decompress when you're awake. Hospital cafeterias have a lot of comfort food but you can also find healthy options. Stuff to keep with you: water bottle, paper & pen, watch or phone with clock, and some light activity (phone games, knitting, reading, whatever) to keep you busy when you're just sitting around waiting for the next thing to happen.
I'm sending good thoughts to you both. They are orange like monarch butterflies or marigolds, but feel free to visualize something else if that works better for you.
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one more thought
A few more thoughts. [If not helpful, ignore them. :-) ]
If something seems odd to you, it's okay to pose questions to the doctors or ask them to repeat something, especially if it affects your husband's comfort. (My experience was seeing a post-surgery patient get caught in the catch-22 of "can't eat until bowels resume functioning, but bowels have nothing to do if there's no food being consumed." This was solved by feeding the patient--finally--after the family advocated for the patient to resume a normal diet.)
I'm not trying to criticize your medical team or to practice medicine without a licence; I just want to help you feel comfortable asking questions and advocating. Every patient and family have their own experiences. Feel free to ignore any comments (from anyone) if they are not helpful suggestions.
Some hospitals may have a "family concierge" or "family service coordinator" as well as a basic information desk. This may be helpful to you for finding hotel room / home service aides. Also some hospital parking garages may offer "bulk purchase discounts" or something to that effect to take the edge off the cost of daily parking.
Most hosptials also offer some sort of spiritual or religious support* if patients express interest or indicate their religious affiliation. But there's no need to state a religious preference or connect with a clergyperson if you're not interested. Some hospitals have a space designated as a chapel, and/or a schedule for services. In my experience, the clergy serving a specific religion will introduce themselves to all patients who self-identified as members of that religion--and will then follow the patient's lead re whether or not to have further contact.
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I suggest
Taking his own pillows and blanket to the hospital. It was nice to have some of my own stuff there to make me more comfortable, because nothing about this surgery was comfortable. I would also suggest you inquire beforehand with his doctor on their procedure for dispensing pain medication after surgery. After my surgery I was in extreme pain, because I had no idea I had to request pain medication. I just assumed after having my kidney removed, they would pump me full of stuff. They did not and it wasn't until I asked I learned I needed to request it. I never did get my pain under control while in the hospital as a result. No one should have to go through this.
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Boy, do I ever agree with youAnother Spouse said:one more thought
A few more thoughts. [If not helpful, ignore them. :-) ]
If something seems odd to you, it's okay to pose questions to the doctors or ask them to repeat something, especially if it affects your husband's comfort. (My experience was seeing a post-surgery patient get caught in the catch-22 of "can't eat until bowels resume functioning, but bowels have nothing to do if there's no food being consumed." This was solved by feeding the patient--finally--after the family advocated for the patient to resume a normal diet.)
I'm not trying to criticize your medical team or to practice medicine without a licence; I just want to help you feel comfortable asking questions and advocating. Every patient and family have their own experiences. Feel free to ignore any comments (from anyone) if they are not helpful suggestions.
Some hospitals may have a "family concierge" or "family service coordinator" as well as a basic information desk. This may be helpful to you for finding hotel room / home service aides. Also some hospital parking garages may offer "bulk purchase discounts" or something to that effect to take the edge off the cost of daily parking.
Most hosptials also offer some sort of spiritual or religious support* if patients express interest or indicate their religious affiliation. But there's no need to state a religious preference or connect with a clergyperson if you're not interested. Some hospitals have a space designated as a chapel, and/or a schedule for services. In my experience, the clergy serving a specific religion will introduce themselves to all patients who self-identified as members of that religion--and will then follow the patient's lead re whether or not to have further contact.
Boy, do I ever agree with you about asking questions. It's your husband's body and it's both of your psyches that are going to be going through this. If you're not sure of something, ask. If you're not satisfied with the answer, ask for more information. If you're concerned about something that's going to be done, don't do it until you have all the pertinent information you need to make sure you're both comfortable that it needs to get done. I have found that most good doctors want their patients and their families to get involved in their own care. They want the patients and the families to feel comfortable with what is being done to the patient's body.
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Advice really helped
Today is Aaron's surgery. He was up all night as a result of the procedure to clean himself out. The surgery is not until 3 PM so it is going to be a long day. I am following all of your suggestions. Being prepared emotionally is difficult as I am better some moments than others. We were asked to bring a copy of his advanced directive. It had been a long time since we discussed it so it was a good review. Still it was difficult. It is not really the surgery but the cancer that is frightening to me. So, one day at a time. Again, thank for the time which you took to help me. Char
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