My husband is in respite right now. He has been at this nursing home before, and there hadn't been any major problems. I thought this might be a good choice when permanent placement is needed.
Fortunately DH is still aware about some things. For example, he knows he has to watch his diet. He is on two medications for high blood pressure, so sodium is an issue.
The nursing home recently changed their menus and their food suppliers. DH was concerned about the amount of sodium in the new meals, so I looked over the diet sheets. Their sodium guideline is 4000 mg per day! Some days their meals have closer to 5000 mg of sodium. Last night the entree alone contained more sodium than DH is supposed to have in an entire day. (For people over 51 or anyone with heart disease, kidney disease, or diabetes--pretty much every single person in the nursing home--the official guideline is 1500 mg per day.)
A couple of things come to mind with this. I think that DH, who has dementia, should not be required to make sure that his meals are safe for him to eat. (Actually, I don't think I should have to do that, either.) The nursing staff administers his meds, so they know he is on medications for high blood pressure. Why in the world would they give over 4000 mg of sodium per day to anybody, let alone someone with high blood pressure?
DH has been trying to work with them on this, and one of their solutions is just to take things off his meal tray. Sometimes he winds up with a vegetable or two, a small dish of canned fruit, and milk. I don't consider that to be a meal.
I realized that DH is one of the few people there who are aware of things like sodium in the food. But what about all the elderly and ill people in all the other rooms in that nursing home? I feel like the nursing home is literally poisoning these people. That much sodium would be toxic for a healthy person, let alone someone needing nursing home care.
I feel like I've worked very hard to keep DH alive through dementia and several other serious medical issues. I was not expecting the nursing home to put him in danger while he was there for respite, and I feel like that's what they're doing.
I plan to call the director of nursing today about this. I expect to get brushed off. The easy answer would be for me just to bring DH home from respite. But I think about the other people in that nursing home. And the same group owns 27 more nursing homes. That's a lot of people who are being put in harm's way with this.
I would ask for a nutritional consult. Their dietician should be able to sit down and discuss this with you, and I'd possibly want the nursing supervisor or possibly the director of nursing in the meeting, too. If you don't get satisfaction, you had better call the state. That is a crazy-high sodium level, and certainly not compliant with current standards of practice and federal guidelines.
My daughter is an excellent cook but she has a thing about salt. She never adds sault to anything and without the sault, some food is almost tasteless. So I just keep a sault shaker on the table and add my own sault.
I think food is just as delicious with added sault as when cooked with sault. Why can't they Just cook with no sault and let people add sault if they choose ?
Well, there have been whole books written on low-sodium diets. George, it isn't as simple as just cooking without salt...adding it at the table...or not...it all can become pretty complex. In some cases, let's say for a renal patient, the sodium has to be kept so low that it's really hard to come up with a nutritious diet. For other people, let's say the salt-sensitive high blood pressure people...they are OK if they just don't cook anything with salt...but if they eat high-sodium foods, or add salt via the saltshaker, their blood pressure skyrockets. It's different for everybody, and of course, some people can just have whatever they want with no ill effects.
Broadly speaking, it is easy to maintain a certain sodium restriction in the diet by just reading the nutrition labels on the food packages. Canned goods and highly processed foods tend to be high or higher in sodium, and fresh fruits and vegetables, and frozen fruits and vegetables are pretty much OK.
I am using the terms "salt" and "sodium (sodium chloride--NaCl--salt) interchangeably. Am also trying to keep a young puppy entertained while trying to write this, so hope it makes some sense. : D
Thanks for your help. I need all the help I can get. It seems that everything in this world is too complicated for an old, old man, but I think I've learned something from all this. At least I've learned how to spell salt.
I like everything you post, Liz. You have a way of putting everything into the proper perspective. I think I'll check it out on Wikipedia and maybe I won't be so dumb about salt and sodium.
I talked to the dietician today about the sodium problem. She told me that they are trying to get the people at the nursing home to eat, and that they won't eat enough if the food doesn't "taste right". I guess they've never heard of any seasoning except salt, which is cheap and easy. She told me that the nursing home doctor okayed this excessive sodium consumption. Well, I spoke to my husband's family doctor today, and he said that they need to get the sodium down to a maximum of 2000 mg per day for DH. The dietician didn't know if they could do that.
I was chilled to the bone when I realized that nursing homes are downgraded if their residents lose weight. However, if someone dies from kidney disease or heart disease--complicated or caused by the extreme sodium intake--then it's officially natural causes, and no fault of the nursing home. (At least in their minds.) I didn't even want to admit to myself that this was true, but it is. I was trusting them to care for my husband, and instead they are harming him.
I certainly had no idea that this would ever be an issue in a nursing home. I thought that sodium guidelines were pretty well known by now, and that most people understood that too much sodium can cause health problems. I can't imagine how they got a doctor to approve their menus, except that he is an employee of the nursing home and part of his job is to sign what they want him to sign. (I did research on sodium guidelines at the CDC, FDA, USDA, Mayo Clinic, American Heart Association, Dietary Guidelines Advisory Committees, National Institutes of Health, Institute of Medicine, and even the UN. I wanted to make sure that I had my numbers right when I called.)
My second piece of news today is that the results from DH's second sleep study came back. You know it's not good news when the doctor's office calls you days ahead of when the test results are due. DH now has complex sleep apnea, which means both obstructive sleep apnea and central sleep apnea. Central sleep apnea is when your brain forgets that it's supposed to make you breathe. So it's back to the hospital for another sleep study, to determine what type of machine will help him best now. Thankfully, there are now machines that will adjust pressure for each breath, and even take a breath for you if your brain "forgets". This is another step on the slippery slope of this long, long journey, and it feels like a pretty big step.
So--just a couple of the issues we're dealing with during these precious few days of "respite".
Jan, I would still report them to the state. (Is this in the United States? I can't remember where you live.) I just can't believe that this facility is doing this. If they are giving the residents this much sodium and are still complying with the normal standards of practice and state regulations--well, I don't think they can be--but anyway, I would love to hear the rationale.
You are really getting your share of headaches right now.
To George: Thanks for the kind words. There is a diet called the DASH diet that is among the highest rated diets for good health and prevention of chronic problems such as hypertension. If you google it I think you'll find it easily. It is pretty much a basic healthy diet with no bells and whistles, as I recall. What we all know we should be eating, but most of us don't. lol
I believe you said you lived in Toronto. Nobody seems to listen anymore unless there is some publicity (in my opinion). I wonder if it would be a good idea to write a letter (your written proof) to the Minister of Health (don't expect too much!), showing that you sent a copy to the newspaper (there's probably a reporter at the newspaper who specializes in seniors/long term care homes/health issues). There is a seniors advocacy group who might be very interested. That might bring some attention to the matter. As you pointed out, it is not only your husband, but many others who may not have someone who is as vigilant as you are for your spouse. Just my 2 cents worth. It seems to me that unless you shine a spotlight on such problems, nobody will pay any attention. We are old ... who cares? ... They just want to bury any problems. That has been my experience. Good luck.
Kevan was given a CPAP twice and both times he was so upset and just about drove the staff and I over the cliff. He just couldn't understand how it worked and what it was used for and I have used one for over eight years. He is not out of it but just couldn't get it so I just took it away and told them " no more". He later told me that it frightened him and he was happy it was gone. It was things like" how will I fill the tank, how will I clean it, how will I get up to go to the bathroom at night, it's going to be noisey, what will it do to me? All little thing that we would understand, but he couldn't. This last two weeks have been good. I finally told them " no more" I told them I am quite aware that this disease is terminal and I will not allow anything that will make him upset or uncomfortable. He gets afraid of the smallest things or stresses about them. Acknowledging to them that he is terminal really helped me help him. I am becoming more at peace with our future.
DH has used a CPAP for over two decades. So far, using it has been as routine for him as pulling up the covers at night. However, the new machine will be more like a ventilator--likely the same mask, but different action. I don't know how he'll do with that.
I can't imagine trying to get someone with dementia to start using a CPAP. Jazzy, you did the right thing with Kevan. When trying to learn how to use one of these machines would make our loved one stressed and miserable, why put them through that?
DH needs reminders about things like putting water in the CPAP humidifier. So far, none of the four nursing homes he has been in for respite ever managed to remind him, even after it was put in his chart and I begged them repeatedly. I know that if he is in a nursing home, the maintenance of the CPAP will be up to me.
At some point DH will probably not understand what the mask is for, and won't want to use it. That's when I will bring the machine home. But when I do that, I will know I will be losing him really soon. His last sleep study showed 25 instances of central sleep apnea in one night, and that was while using a CPAP. That means that already there were 25 times in that one night when his brain forgot that he was supposed to breathe. As more damage occurs in his brain, there will be more instances. And as there are more instances, and his oxygen level drops frequently, there will be more brain damage. This can also cause a heart attack or stroke. So, like I said, this feels like a pretty big step.
My heart felt like it broke right open when I typed that last paragraph.
I often wonder when, if they want to give him things that they" HOPE" will extend his life, if I would be doing the right thing. Do we have the right to prolong their lives? Are we doing it for them or for us? I'm told that all they can do is keep him safe and comfortable so why put him on this machine that frightens him? What is wrong with just letting him live out this life he has been given and let nature take it's course? I have really worried about what I would do if the call comes where they will ask me how far they can go! Then I remember that he has taken that decision out of my hands with the DNR and his decision to be left to die as Nature wills and I feel so much peace. He knew I would have a hard time. I don't know why I have had these lights go on in this brain of mine but I am becoming more at peace with my life. We are told that there is no cure. Terminal is terminal.
My husband wears his anytime in bed whether awake or asleep. It is like he is afraid he will stop breathing while awake. He has never used the water in his. My son does and what a mess it can cause in the hose. I am glad he has the mask otherwise his snoring keeps me awake!