Explaining diet with heart failure to people
September 11, 2024 11:48 AM Subscribe
The only help I get with my dad as a primary caregiver is from his friends. They’re well intentioned and love him, and they make it possible for me not to have regular meltdowns from caregiver stress. However, he just came out of the hospital for a heart failure exacerbation and they apparently gave him fucking OLIVES because olives are “not that salty”.
They take him three days a week. I have him four. It took 4 IV lasix to control his HF over the weekend. He’s on 80 mg oral furosemide now twice a day plus a bunch of new HF meds. These meds indirectly suppress blood pressure, his BP last night was 80/53. HF clinic finds it acceptable if he’s not symptomatic. Ok. Not sure what his kidneys will be like in two weeks but ok.
Every time he’s there he gains a pound the next day.
When he was IN HOSPITAL a few months ago for the same thing they gave him PIZZA FROM THE CAFETERIA.
Eastern European ok so big into both salt and woo. And God, so like if he dies it’s God’s will right.
I know it makes them feel good to see him enjoying food but they are going to actually fucking kill him, or me if I have to take him to a goddamned hospital again (6-16 hour waits, Ontario, Canada).
They’re the only help I have and I need them.
They take him three days a week. I have him four. It took 4 IV lasix to control his HF over the weekend. He’s on 80 mg oral furosemide now twice a day plus a bunch of new HF meds. These meds indirectly suppress blood pressure, his BP last night was 80/53. HF clinic finds it acceptable if he’s not symptomatic. Ok. Not sure what his kidneys will be like in two weeks but ok.
Every time he’s there he gains a pound the next day.
When he was IN HOSPITAL a few months ago for the same thing they gave him PIZZA FROM THE CAFETERIA.
Eastern European ok so big into both salt and woo. And God, so like if he dies it’s God’s will right.
I know it makes them feel good to see him enjoying food but they are going to actually fucking kill him, or me if I have to take him to a goddamned hospital again (6-16 hour waits, Ontario, Canada).
They’re the only help I have and I need them.
Response by poster: He is not capable to make those choices and does not understand his condition. Aged 91, mild to moderate dementia (worse with UTIs). He does self restrict fluids when he’s overloaded based on subjective feelings but I think by that time he’s already pretty unwell.
posted by cotton dress sock at 11:54 AM on September 11
posted by cotton dress sock at 11:54 AM on September 11
Have them all no sodium added ketchup. That's about the best example I think of what "low to no sodium" actually tastes like. At least at that point the friends will have to be explicitly ignoring the doctor's orders instead of just being ignorant of what is and isn't low in sodium.
posted by Back At It Again At Krispy Kreme at 12:00 PM on September 11 [1 favorite]
posted by Back At It Again At Krispy Kreme at 12:00 PM on September 11 [1 favorite]
You need to recruit someone they respect as an authority to give them clear instructions. Food is so fraught with social and cultural baggage, and your relationship to these people is going to make it much harder to do any explaining or laying out of requirements about it. I don’t think it’s right; as primary caregiver and family you are clearly the authority and should be carefully listened to, but given the cultural context and approximate age difference and the fuckin’ patriarchy it’s not a battle you can win on your own.
Is there anybody in this friend group who knows a nurse or a doctor? Do you? Is there a way for you to ask for help from the members of their religious institution? Or your own if you are involved in one? What about your father’s current care team? Reach out and ask for help. Ideally you could have someone be there in person to explain, maybe even wearing scrubs? But realistically you might get lots of printable documents, of the kind you get saddled with after a hospital visit, with lots of instructions and lists, plus extra commentary from your person of authority. Preferably with a medical practice logo on each page. Highlight key points and put them in a folder and label it with really big letters [Father’s] Dietary Requirements. Every time you do a hand-off with these folks, also exchange the folder.
Hopefully you can have one or two serious conversations alongside your person of authority with your father’s friends to start with, and then tell them the folder is to help everyone involved in his care to remember and keep track of things, including you. A step down from that might be some direct emails or group phone calls. It sucks, but if you can do the thing where you act like you’re finding it super hard to navigate this diet, they might feel more comfortable checking with you before giving your father something that is not clearly on the list. They have to feel like you’re not going to bite their heads off if they make a mistake. Save the metaphorical head biting for conversations with people who are not immediately involved, who want to support you but can’t directly help your father.
posted by Mizu at 12:29 PM on September 11 [2 favorites]
Is there anybody in this friend group who knows a nurse or a doctor? Do you? Is there a way for you to ask for help from the members of their religious institution? Or your own if you are involved in one? What about your father’s current care team? Reach out and ask for help. Ideally you could have someone be there in person to explain, maybe even wearing scrubs? But realistically you might get lots of printable documents, of the kind you get saddled with after a hospital visit, with lots of instructions and lists, plus extra commentary from your person of authority. Preferably with a medical practice logo on each page. Highlight key points and put them in a folder and label it with really big letters [Father’s] Dietary Requirements. Every time you do a hand-off with these folks, also exchange the folder.
Hopefully you can have one or two serious conversations alongside your person of authority with your father’s friends to start with, and then tell them the folder is to help everyone involved in his care to remember and keep track of things, including you. A step down from that might be some direct emails or group phone calls. It sucks, but if you can do the thing where you act like you’re finding it super hard to navigate this diet, they might feel more comfortable checking with you before giving your father something that is not clearly on the list. They have to feel like you’re not going to bite their heads off if they make a mistake. Save the metaphorical head biting for conversations with people who are not immediately involved, who want to support you but can’t directly help your father.
posted by Mizu at 12:29 PM on September 11 [2 favorites]
Have your relatives to HALVE the portions of the "regular" food they feed him. At least that will ease the damage. Consider letting them feed him anything they want, as long as they limit it to snack-sized portions (not even a potato chip bag, but like half that size or smaller) and only once or twice a day.
NOTE: I am NOT a doctor, I'm NOT in medicine, but I am somewhat familiar with hypertension as I have it myself. This is NOT medical advice.
With that said, the gaining of weight is probably from fluid retention. I doubt one can gain weight THAT fast (1 pound in half a week?!), it's probably mostly fluids. Check with the nurse-hotline or whatever advice you can get via the phone for him, about how to tell if he's over-sodium'ed, and if there's a way to adjust diuretics (that helps kidney to get rid of water, pee some more) if they agree it's mostly fluid retention.
posted by kschang at 12:29 PM on September 11
NOTE: I am NOT a doctor, I'm NOT in medicine, but I am somewhat familiar with hypertension as I have it myself. This is NOT medical advice.
With that said, the gaining of weight is probably from fluid retention. I doubt one can gain weight THAT fast (1 pound in half a week?!), it's probably mostly fluids. Check with the nurse-hotline or whatever advice you can get via the phone for him, about how to tell if he's over-sodium'ed, and if there's a way to adjust diuretics (that helps kidney to get rid of water, pee some more) if they agree it's mostly fluid retention.
posted by kschang at 12:29 PM on September 11
Can you just tell them that he's on a very strict diet and can only eat, for example, these 4-5 meals or food you send with him (if you have capacity for that)? It sounds like you need to make it very simple, and if your dad hates the allowed food, they'll probably feed him salty things anyhow.
Are they ever the ones taking him to the hospital / dealing with him retaining fluid? Can they be? If they have care of him almost half the time, they should be able to handle this sort of thing, and it will help them learn to stick to his diet.
Do they suck enough at this that you need to find other care arrangements, like a nursing home? Day program? If it's not that bad yet, you still probably want to make plans so you're able to make that call when it's time, or know the other options are so bad that having his loving but inept friends care for him is the right choice.
posted by momus_window at 3:01 PM on September 11 [2 favorites]
Are they ever the ones taking him to the hospital / dealing with him retaining fluid? Can they be? If they have care of him almost half the time, they should be able to handle this sort of thing, and it will help them learn to stick to his diet.
Do they suck enough at this that you need to find other care arrangements, like a nursing home? Day program? If it's not that bad yet, you still probably want to make plans so you're able to make that call when it's time, or know the other options are so bad that having his loving but inept friends care for him is the right choice.
posted by momus_window at 3:01 PM on September 11 [2 favorites]
Response by poster: He does have hypertension but this is heart failure. The weight gain is 💯 fluid.
They don’t trust medicine entirely and are into healing teas and whatnot. One of the people is early Gen X and more logical, I think I might have gotten through in a conversation today. The boomer person is the one sneaking olives. I hope the Gen xer gets through to the boomer.
Low sodium ketchup trial idea is fantastic. Concrete point of reference, awesome.
I’m the only person really who can/should stay with him in hospital (though they can take him there), not sure how they would handle discussion with doctors. Last time he was inpatient, the OT didn’t bother to ask who was with him (they were visiting him), and the OT did their assessment based on the visitors’ answers! System is failing and staff barely have time to read the record, they just ask whoever is there questions. Who knows what would be said.
Have given them printouts for symptoms to watch for.
**the difficulty appears to be the weird & idiosyncratic interpretations and rationalizations people are making**. (Mentioned this in a comment just recently.) They think some salt is “healthy” (eg pink Himalayan salt) and other kinds are not. Same way some people think sugar from a packet is bad but honey is fine. “Natural”/“god-given” is good, medications are bad. I have no way to anticipate, on any given day, what might be interpreted as “healthy” or “salty”. I have SO much empathy for anyone who has to communicate with the public about this kind of stuff for a job, holy hell. I couldn’t have guessed pizza or olives would have made anyone’s list of what counts as not salty. Is it because they didn’t use a salt shaker in the moment? Is it because the salty things are ingredients in a mix of other things? Does anyone know? Can AI help?
posted by cotton dress sock at 3:56 PM on September 11 [1 favorite]
They don’t trust medicine entirely and are into healing teas and whatnot. One of the people is early Gen X and more logical, I think I might have gotten through in a conversation today. The boomer person is the one sneaking olives. I hope the Gen xer gets through to the boomer.
Low sodium ketchup trial idea is fantastic. Concrete point of reference, awesome.
I’m the only person really who can/should stay with him in hospital (though they can take him there), not sure how they would handle discussion with doctors. Last time he was inpatient, the OT didn’t bother to ask who was with him (they were visiting him), and the OT did their assessment based on the visitors’ answers! System is failing and staff barely have time to read the record, they just ask whoever is there questions. Who knows what would be said.
Have given them printouts for symptoms to watch for.
**the difficulty appears to be the weird & idiosyncratic interpretations and rationalizations people are making**. (Mentioned this in a comment just recently.) They think some salt is “healthy” (eg pink Himalayan salt) and other kinds are not. Same way some people think sugar from a packet is bad but honey is fine. “Natural”/“god-given” is good, medications are bad. I have no way to anticipate, on any given day, what might be interpreted as “healthy” or “salty”. I have SO much empathy for anyone who has to communicate with the public about this kind of stuff for a job, holy hell. I couldn’t have guessed pizza or olives would have made anyone’s list of what counts as not salty. Is it because they didn’t use a salt shaker in the moment? Is it because the salty things are ingredients in a mix of other things? Does anyone know? Can AI help?
posted by cotton dress sock at 3:56 PM on September 11 [1 favorite]
They're the only help I have and I need them.
More than you know.
I understand your frustration, I get it. You are doing the hardest thing in dealing with this role reversal with your parent. There is no good outcome, only a series of phases until your father passes away.
I did this twice. It doesn't get easier. Make sure you have your support people onboard and don't hesitate to call them when you are overwhelmed.
But here's the thing -- your father's friends are his support system.
He is so lucky. He did not outlive all of the people who are willing and able (two different things) to come to his aid.
He is 91 with dementia, but he still has those who can remember the good times with him, and for him.
This is quality of life, and it's going to give him a better reason to get out of bed in the morning than seeing a bunch of paid strangers every day.
So yes, get your dad's friends to comply with his diet plan. Those are doctor's orders, no excuses.
But go easy on the guilt.
These people have walked in your shoes. Ask them how they handled it.
Ask them how they would want their loved ones to manage their golden years, when the time comes.
There is some wisdom untapped.
God bless you. My thoughts are with you.
posted by TrishaU at 4:33 PM on September 11 [11 favorites]
More than you know.
I understand your frustration, I get it. You are doing the hardest thing in dealing with this role reversal with your parent. There is no good outcome, only a series of phases until your father passes away.
I did this twice. It doesn't get easier. Make sure you have your support people onboard and don't hesitate to call them when you are overwhelmed.
But here's the thing -- your father's friends are his support system.
He is so lucky. He did not outlive all of the people who are willing and able (two different things) to come to his aid.
He is 91 with dementia, but he still has those who can remember the good times with him, and for him.
This is quality of life, and it's going to give him a better reason to get out of bed in the morning than seeing a bunch of paid strangers every day.
So yes, get your dad's friends to comply with his diet plan. Those are doctor's orders, no excuses.
But go easy on the guilt.
These people have walked in your shoes. Ask them how they handled it.
Ask them how they would want their loved ones to manage their golden years, when the time comes.
There is some wisdom untapped.
God bless you. My thoughts are with you.
posted by TrishaU at 4:33 PM on September 11 [11 favorites]
Response by poster: Thanks for your kind thoughts, TrishaU. You’re absolutely right and I don’t mean to sound ungrateful. I’m not, I do appreciate everything they’ve done for him. It’s panic talking. He’s so vulnerable.
posted by cotton dress sock at 12:13 AM on September 12 [2 favorites]
posted by cotton dress sock at 12:13 AM on September 12 [2 favorites]
It seems likely you've already said some of this, but I might try some combination of:
His heart is a pump that's working too hard. Right now it's like he's allergic to sodium, because sodium makes his heart's job even harder. Sodium is in all salt* except this special kind, and packaged and restaurant foods. I know it tastes good. I know it's healthy for most people.** But his heart just needs to catch a break right now. Sodium makes his body swell up and it's harder to pump the blood like that, so he ends up back in the hospital or on even more medicine. I want him to enjoy food too, but also life. Let's find food he'll enjoy while he's eating it and what happens afterwards. He can't keep having the foods he's used to, but we can find substitutes.
* I realize that this is inaccurate but clearly now is not the time for nuance. Expound about chemistry/physiology after they stop giving him olives.
** Just go ahead and give them the Himalayan salt thing: it's not worth debating because your thesis is that he isn't currently qualified to ingest it regardless. Someone can buy him a nice salt lamp if it makes them feel better, and I'm not even kidding: that's how I got my mother in line on the stuff under similar circumstances. Likewise, the healing teas sound like something you might be able to lean into more, at least in very small amounts.
You might also try to find times to tell stories about how he asked for Unsafe Food and you successfully pivoted him to Safe Food, so that they have a model to potentially follow. Also try to delve into whatever sequence of events is leading to the non-compliance, because there are probably opportunities like "next time you want to play cards together, these are the nuts to put on his end of the table" or whatever. I'm sure it's exhausting though that even during your days without your dad you're still managing this component of his care on a very granular level (do you appreciate the pun? I hope so), and I absolutely understand your desire to make them into true allies in this.
posted by teremala at 9:59 AM on September 12 [2 favorites]
His heart is a pump that's working too hard. Right now it's like he's allergic to sodium, because sodium makes his heart's job even harder. Sodium is in all salt* except this special kind, and packaged and restaurant foods. I know it tastes good. I know it's healthy for most people.** But his heart just needs to catch a break right now. Sodium makes his body swell up and it's harder to pump the blood like that, so he ends up back in the hospital or on even more medicine. I want him to enjoy food too, but also life. Let's find food he'll enjoy while he's eating it and what happens afterwards. He can't keep having the foods he's used to, but we can find substitutes.
* I realize that this is inaccurate but clearly now is not the time for nuance. Expound about chemistry/physiology after they stop giving him olives.
** Just go ahead and give them the Himalayan salt thing: it's not worth debating because your thesis is that he isn't currently qualified to ingest it regardless. Someone can buy him a nice salt lamp if it makes them feel better, and I'm not even kidding: that's how I got my mother in line on the stuff under similar circumstances. Likewise, the healing teas sound like something you might be able to lean into more, at least in very small amounts.
You might also try to find times to tell stories about how he asked for Unsafe Food and you successfully pivoted him to Safe Food, so that they have a model to potentially follow. Also try to delve into whatever sequence of events is leading to the non-compliance, because there are probably opportunities like "next time you want to play cards together, these are the nuts to put on his end of the table" or whatever. I'm sure it's exhausting though that even during your days without your dad you're still managing this component of his care on a very granular level (do you appreciate the pun? I hope so), and I absolutely understand your desire to make them into true allies in this.
posted by teremala at 9:59 AM on September 12 [2 favorites]
i have heart failure, but it is very well controlled to the point i haven't needed to use the as-needed diuretics in a few years.
a couple random thoughts.
yes, people think that because they did not use a salt shaker to apply salt to an item that that item is not salty. and to them that pizza and olive didn't taste SALTY it tasted CORRECT. many americans have no idea how things taste without them being over salted. i was in a position of having to get mcdonald's on a trip with family, so i got no salt on all the fries and no salt on all the burgers (we were all getting the same thing due to coupons, and it just made it easier to have everything without salt). to hear them tell it the fries were inedible without all the salt mcd's adds. whereas i thought they were fine (for mcd's).
what else is your dad eating? can other things be low/no sodium so he can enjoy some treats with his friends? like, instead of oatmeal from the packets, get plain oatmeal in the big container (with no additives) and make that. stuff like that.
i looked for a plain language summary of why salt is bad for hf, but couldn't find a great one. but i don't even think saying "salt makes dad retain fluid. retained fluid makes him feel bad and could kill him." will really get through to folks because they don't understand how much sodium is really in most things and that if it doesn't TASTE salty it's okay.
a final hard thought is that your dad is 91. you are his daughter and much younger. if his friends are his age, they may understand that at that age, with those comorbidities, a few enjoyable snax are of more value than a few extra days of living. i do not personally understand that yet, but i know that for many old people, who are tired of living because of age and infirmity and pain and dementia, they'd rather have the snack than have to keep worrying about if it will be the thing that puts them back in hospital.
posted by misanthropicsarah at 11:16 AM on September 12 [9 favorites]
a couple random thoughts.
yes, people think that because they did not use a salt shaker to apply salt to an item that that item is not salty. and to them that pizza and olive didn't taste SALTY it tasted CORRECT. many americans have no idea how things taste without them being over salted. i was in a position of having to get mcdonald's on a trip with family, so i got no salt on all the fries and no salt on all the burgers (we were all getting the same thing due to coupons, and it just made it easier to have everything without salt). to hear them tell it the fries were inedible without all the salt mcd's adds. whereas i thought they were fine (for mcd's).
what else is your dad eating? can other things be low/no sodium so he can enjoy some treats with his friends? like, instead of oatmeal from the packets, get plain oatmeal in the big container (with no additives) and make that. stuff like that.
i looked for a plain language summary of why salt is bad for hf, but couldn't find a great one. but i don't even think saying "salt makes dad retain fluid. retained fluid makes him feel bad and could kill him." will really get through to folks because they don't understand how much sodium is really in most things and that if it doesn't TASTE salty it's okay.
a final hard thought is that your dad is 91. you are his daughter and much younger. if his friends are his age, they may understand that at that age, with those comorbidities, a few enjoyable snax are of more value than a few extra days of living. i do not personally understand that yet, but i know that for many old people, who are tired of living because of age and infirmity and pain and dementia, they'd rather have the snack than have to keep worrying about if it will be the thing that puts them back in hospital.
posted by misanthropicsarah at 11:16 AM on September 12 [9 favorites]
Hi! I know your plate has been heavy for such a long time. You've been doing great, and have been brave and so strong. I can't imagine how you are doing it. Kudos to you. Truly.
You might want to explain to your father's friends that the extra fluid your father retains from anything salty (whether naturally or by added salt) will ultimately end up making his heart work harder and making his lungs feel like they have water in them. It will make it harder for him to breathe, and make him much more tired. Explain that it's kind of like a big figure 8 that will only get bigger and bigger because then his kidneys work harder, etc. His body is old and can only do so much.
You may want to see if a dietician can visit while they are all there one afternoon so that s/he can explain it and suggest more appropriate foods. Understand that they are doing this out of love, not cluelessness. It probably doesn't occur to most people who haven't had the experience of dealing with people who have cardiac issues.
As you have written above, your dad has been admitted several times for fluid overload. He's also had a long life. Have you given thought to what your end goal is here? He has dementia (which is so hard to deal with on its own), and that will only progress further. Have you given thought as to at what point you might want to consider a hospice situation where your dad is made comfortable for the rest of his time here with you and his friends? At 91, there is a big difference between trying to resolve CHF, seriously controlling his diet, etc., and just letting him enjoy his time.
I say this with the deepest respect and kindness that you may not have a lot of time when your dad is willing to eat or can recognize you and his friends. I am so *damn* sorry. There is nothing happy or elegant about illness in old age, especially when cognitive decline is involved. I wish I had better advice or answers for you. Sometimes just stepping back and looking at the entire picture (meaning decades, not months), might give you a little better perspective. Sending you the biggest hugs, strength, and mental fortitude.
posted by dancinglamb at 1:37 PM on September 12 [3 favorites]
You might want to explain to your father's friends that the extra fluid your father retains from anything salty (whether naturally or by added salt) will ultimately end up making his heart work harder and making his lungs feel like they have water in them. It will make it harder for him to breathe, and make him much more tired. Explain that it's kind of like a big figure 8 that will only get bigger and bigger because then his kidneys work harder, etc. His body is old and can only do so much.
You may want to see if a dietician can visit while they are all there one afternoon so that s/he can explain it and suggest more appropriate foods. Understand that they are doing this out of love, not cluelessness. It probably doesn't occur to most people who haven't had the experience of dealing with people who have cardiac issues.
As you have written above, your dad has been admitted several times for fluid overload. He's also had a long life. Have you given thought to what your end goal is here? He has dementia (which is so hard to deal with on its own), and that will only progress further. Have you given thought as to at what point you might want to consider a hospice situation where your dad is made comfortable for the rest of his time here with you and his friends? At 91, there is a big difference between trying to resolve CHF, seriously controlling his diet, etc., and just letting him enjoy his time.
I say this with the deepest respect and kindness that you may not have a lot of time when your dad is willing to eat or can recognize you and his friends. I am so *damn* sorry. There is nothing happy or elegant about illness in old age, especially when cognitive decline is involved. I wish I had better advice or answers for you. Sometimes just stepping back and looking at the entire picture (meaning decades, not months), might give you a little better perspective. Sending you the biggest hugs, strength, and mental fortitude.
posted by dancinglamb at 1:37 PM on September 12 [3 favorites]
Order low sodium meals from Meals on Wheels and have them serve those. It’s like $7-8 and many older folks find it is enough for lunch and dinner.
posted by shockpoppet at 3:05 PM on September 12
posted by shockpoppet at 3:05 PM on September 12
Response by poster: Honestly? From an admittedly selfish POV, he suffered so much for most of his life (with bipolar/frontotemporal dementia). I’ve always wished for him to be well and safe in a way he couldn’t achieve on his own — at least now he has that, for however long. The worst of the bipolar and FTD has fallen away and the person who is left — still himself, still a beautiful and original person — enjoys life. Still has a sense of humour, loves nature, music, and beauty, and like he always did, offers unconditional love, acceptance, positivity, and support. Even with memory problems. HF or no (and 91 or no), he is not frail, he is still walking 1-2 hours a day! Sometimes resting when it’s a bad day but he still has the strength and will to move and to live. (As long as I can get people to stop giving him olives etc.)
posted by cotton dress sock at 10:26 PM on September 12 [6 favorites]
posted by cotton dress sock at 10:26 PM on September 12 [6 favorites]
❤️
posted by dancinglamb at 3:29 AM on September 13 [2 favorites]
posted by dancinglamb at 3:29 AM on September 13 [2 favorites]
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posted by telegraph at 11:52 AM on September 11