<p>Just got a call from BIL. He was calling about SIL who has cancer and has significant nausea and now is getting forgetful about whether or now she has or has not taken her medications and which ones. He wants to have someone stay with her or at least spend some hours there to supervise her taking her meds, since she has several and she’s supposed to take them on a schedule regularly. She really doesn’t listen to us and is closest to him, so we tried to support him in whatever he feels is best. Not sure how she will deal with allowing “a stranger” into her home, as she’s pretty private and VERY stubborn. She has dog walking friends stop by at least daily and sometimes several times/day but he things she would benefit from more.</p>
<p>Not quite sure what is wanted of us, as we both have part-time jobs and she wasn’t interested in us spending much time with her last time we came to visit. It’s awkard to offer to visit when she rebuffed our last attempt AFTER we arrived in her city. Work is crazy busy for H right now and it is at least a 5 hour plane ride to get to their city from here.</p>
<p>Not sure what to do about the nausea and suggested BIL ask the nurse about home IV and perhaps a visiting nurse. Also, possible ask about a GI tube or other form of nourishment, if that is what she wants/needs. She drinks very little because she’s afraid she’ll get nausea and lose it all. VERY tough situation. Even tried medical marijuana ingested and that did not work either. :(</p>
<p>Dehydration can cause the forgetfulness along with a lot of other issues. They need to address the basics first - hydration and nutrition. They need to see a doc to get this taken care of including possible anti-nausea meds, IV hydration, etc. I don’t see how you’d be able to help too much for this medical issue.</p>
<p>HImom, it sounds like you may be a great support for your BIL just by being on the other end of the line so he can vent. Being available to listen, empathize and strategize with a caregiver can be a tremendous help.</p>
<p>Smoking items more effective for the nausea, if you are sick to your stomach eating doesn’t work.</p>
<p>Had a friend who also didn’t want visitors. It’s sometimes just to hard to entertain people when you are sick. But even half an hour did wonders.</p>
<p>Even just going and sitting in living room reading so bil can run errands, go to the gym, take a walk, etc is invaluable. Helping him in that way does wonders. </p>
<p>Best present I gave my friend was a photo album of her dog with all his doggy friends. If she can’t walk her dog a s much, seeing the pictures was reasurrong, and if she is terminal, having a plan set up for the dogs, with her friends is really important for piece of mind.</p>
<p>Thanks for the support. It will be a $500+ and 5 hour plane ride for H or me to get to the city where they live. S plans to visit next weekend, in connection with his work. SIL likes him, so that should be a help for her & BIL. SIL is very particular about whom she wants around & always has been. She & I get along but she’s always been partial to H & S, much moreso than me or D.</p>
<p>Will continue to urge BIL to get her hydration & nutrition, via IV or whatever means necessary (including visiting nurse or other healthcare worker). Both H & BIL sounded surprised when I suggested IV or G-Tube or whatever it takes to help her keep functional to get over this rough patch. I want to play a supportive secondary role, because think SIL & others will resent me doing more.</p>
<p>HIMom- Good thoughts to all. I think you are on to something-that your support of BIL via calls, etc. will matter a lot. Realistically, the distance (both geographically and otherwise) makes being a caregiver a non-option at present. However, knowing you are in the loop, perhaps with some medical system knowledge and kind support to lend will mean a lot. </p>
<p>Nutrition support is a big piece of cancer care and experts,including dietitians, are accustomed to dealing with it. </p>
<p>Some forms of chemo may have neuro side effects that can involve cognition, as can dehydration. I hope they can assemble a team of caregivers, so that SIL is getting good care and can, in her own way navigate the illness. </p>
<p>I have seen CA pts. want companionship through chemo and some who prefer to “fly solo” and get through it with immediate family only. I have also seen patients change their minds and want others around later on in the process, so keeping the door open is a nice thing to do. Distance is a real consideration, but over time, options may increase.</p>
<p>I’m disappointed and surprised that SIL’s medical team isn’t making suggestions. Not sure how much they have been told about SIL’s continued and increasing nausea, as well as weight loss. It is quite concerning, but I am treading carefully. Hopefully my BIL will ask about these issues now that I’ve suggested them, including the possible in-home nurse to provide an IV for nutrition & hydration.</p>
<p>I can easily symathize with SIL not wanting to consume fluids that might increase her nausea, which annoys BIL. To me (who has tried to support my D when she had extreme nausea, as well as myself), I can certainly ID with not wanting to eat or do ANYTHING that might make me feel worse, including drinking ANYTHING.</p>
<p>Hope if BIL communicates about the severity of nausea, dehydration & nutrition concerns, more assistance will be forthcoming.</p>
<p>There are many anti-nausea drugs out there. Does her medical team know how bad it is? Is it just for the week post-chemo cycle? Does she a have a port in for chemo? That can be used easily for IV fluids but she needs nutrition for sure. Ensure? hi calorie shakes? What’s her mouth like? Any sores that preventing her from eating?</p>
<p>She’s said to be on at least one anti-nausea med, but if it’s being taken orally, that won’t help. She’s also on some suppositories. I didn’t get details. I don’t know how much her medical team knows. It’s her fear of nausea that is causing her to eat and drink less and less, since nothing stays down. Don’t believe there are any sores at this point.</p>
<p>Will suggest that BIL give medical team a thorough briefing of how much weight she has lost and how much nausea she is experiencing, as well as her constant severe nausea.</p>
<p>Her chemo has been discontinued until her nausea is under better control. She hasn’t had chemo in over a month, I believe. This is the worst her nausea has ever been.</p>
<p>She just got a state of art hospital bed that is helping her remain elevated while she sleeps.</p>
<p>the key to helping nausea is to take them before you are nauseated. In addition many cancer patients take more than one antinausea, zofran, compazine, and ativan help. ginger root, the seasickness bracelets. decadron helps too. I had many complications from chemo and i did not find the medical team to be that helpful. I am a pedi nurse and adults are not taken care of in the same way.
Also an effect of chemo is “chemo brain” it makes you forgetful. It affects concentration. It is scary and frustrating. It might be helpful to get one of those pill boxes withthe times and day. chemo makes you so tired it is really hard to entertain anyone. I wanted to see people for maybe 5 minutes then how do you tell them to leave?</p>
<p>If BIL set up a series of alarm reminders on her cellphone, and made a chart on paper of which meds to take at which hour, could she follow that herself? OR: a weekly pill container with a grid of 4 different boxes per day is much easier to handle than taking pills from separate bottles, if a person is confused. He should also teach her to count her pills at each dosage session, and recognize them by shape/color, if possible. </p>
<p>It sounds as though, by personality history and stated wishes, she doesn’t want visitors except for her own husband. If he’s suggesting you come in his place, he’s missing the message. He’s the one.</p>
<p>SIL is single & always has been. BIL is her brother & they’ve practiced together for decades. She has friends help with dogwalking duties. Not sure how well she’d handle alarm reminders and a chart. Could try to suggest that. She has a whole bunch of OTC & nutritional supplements she takes along with the meds, which makes everyone confused about all of it.</p>
<p>I’m trying to just make gentle suggestions. H is another brother & may be able to visit in early May (at the soonest). I will likely be in SF later in May.</p>
<p>Zofran, compazine, Ativan, phenergan, reglan just a few of the drugs that are in shortage :(. Hope this isn’t contributing to the problem for this patient.</p>
<p>Is there a computer program that can stream across someone’s screensaver to tell them when to take what medicine throughout the day? Really this kind of thing is adaptable to computer: take this item (data point) after that amount of elapsed time. Can it be programmed? Can someone invent it?</p>
<p>My BIL says she’s on all the anti-nausea meds except ginger & wristband. She turned off the alarm on her cell phone that was set for her but DOES answer & listen when her brother calls her to remind her. H is thinking he will try to go & see her if he can, sooner than later.</p>
<p>There is some thought that the tumor may be pressing against her intestine and/or stomach so it can’t expand which increases the nausea. It has been suggested that she could have the tumor surgically “debulked,” but she many not be interested in surgery. BIL will be calling the hospice nurse tomorrow to discuss options.</p>
<p>H is now thinking he should see her sooner than later. S is also planning to see her next weekend. Maybe I’ll go & see her soon as well.</p>
<p>BIL is going to ask about IV and possibly G-tube for nutrition, since things by mouth just won’t stay down. They come up immediately or sometimes take a bit longer but she’s getting very dehydrated and under-nourished, as well as weak. He’ll talk with the social worker and hospice nurse.</p>
<p>She also doesn’t have a will, so gave BIL the name of a good attorney in the city, who has been there for decades & knows the bar there.</p>
<p>OK, we’re all going to visit this weekend. The kids are flying in–S from Orlando, D from LA & us from HNL. Everyone has suggested sooner rather than later so there will be more quality time in the visit. United kept raising the fares while I was on the phone trying to talk to the agent about compassionate fares. Will talk to my travel agent tomorrow & see whether he can improve on things & we can cancel this over-priced ticket the agent got us; she said we have up to 24-hours to cancel. Really disliked her. :(</p>
<p>Everyone is doing what they can to keep her as comfortable as possible. The hospice nurse checks in frequently as well.</p>