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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 02/19/13

My husband just started dialysis and does not thinks itís important to follow his diet. It makes me so frustrated and I don't know how to explain to him how important it is.

Does anyone have any ideas?

Carolyn

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Name:
Location:
Date: 03/04/2013
Time: 07:03 PM

Comments

A lot of people new to dialysis are non compliant with their diet. If you or he haven't met with the nutritionist, primary nephrologist and social worker you should. And it might be a good idea to have your hubby partner with another long term patient on dialysis who manages their diet well. It can make a difference. Also, your husband may want to know that his decision not to adhere to his diet may make his health worst and can make him a less likely transplant candidate. Its all up to him. It is not impossible but he needs to take better care of himself.


Name: Fred F.
Location: Waterbury, CT
Date: 03/04/2013
Time: 11:21 AM

Comments

This may sound a little morbid and callus, but it may get the point across. Tell your husband, since he insists on killing himself, that you are making an appointment with the undertaker to have him fitted for a casket.


Name: Rev. Dr. Dale Young
Location: Congregational Health, Miami
Date: 03/04/2013
Time: 08:11 AM

Comments

This sounds like a very common challenge, especially for men. We suggest getting men together who share the same health challenges in a non-judgmental supportive atmosphere. (Think of AA meetings with a twist in the dirrection of healthy eating). Our model is Faith-health support groups which we organized in faith communities. The value of this model is that it gives the participants a place to vent, feel supported and also challenged to do the right thing. Participants are encouraged (not nagged)and also educated (we bring in nutritionists). You can find more info on the website: www.baptisthealth.net/ch look for Faith-Health Support Groups


Name: Kelli
Location:
Date: 03/04/2013
Time: 04:51 AM

Comments

While I understand your concern over your husband's refusal to follow an approved diet, however this is his body and his choice. You have to love him for who he is and right now, he is a man who does not want to follow a diet regime. That could change at anytime so you must be ready to support that as well. I had this experience 8 years ago when my husband had cancer. Taking a sanguine approach changed his mind more quickly than if I had acted as though he were a misbehaving child or tried to control his actions.


Name: Chris
Location: Orlando
Date: 03/03/2013
Time: 05:13 PM

Comments

I would suggest you seek out the social worker at the dialysis center and/or the nutritionist there, including an appt with the doctor as the other posters said. It may seem quite overwhelming to him if it is new, but the steps are necessary to avoid crisis and fluid overload ER trips which would be the result of toxins and fluid buildup, not to mention feeling very poorly. All of the posters have had good information. A Support Group is an excellent source of support because others are experiencing and struggling with the same issues. Eventually, you will have to disengage from the role of lecturing him and help him own the problem. Your emphasis on preparing the right foods and meals will greatly help - there are great recipe/solutions out there. The other posters are right, though, because like diabetes and other problems, it becomes a matter of priorities and choices. Good luck. If he won't go, they maybe you can find a caregiver support group for yourself, too. Chronic illnesses are tough, but good care can make things stable and manageable.


Name: Cathleen
Location: Florida
Date: 03/03/2013
Time: 04:54 PM

Comments

I am the caregiver of my almost 94 year old Mother who has been on dialysis for 8 years. The diet isn't so hard if you both comply. Your center should have a nitritionist plus we received many books on what she can and cannot eat. As the dr told us, there is no book for someone that old doing so well. I receive her blood work numbers monthly and adjust accordingly. The biggest problem was she didn't want to eat especially after dialysis. Solved that problem by fixing her plate. Good luck


Name: Laurie Palmer
Location: Folsom, CA
Date: 03/03/2013
Time: 03:37 PM

Comments

I know being on a restricted diet is very hard. My Dad was diagnosed with polycystic kidney disease in 1974. No one ever told him to restrict/change his diet. When the Internet was created, he went online and found out about limiting certain things, and he followed it (and never cheated). He didn't have to start dialysis until a year before his passing. He had to really be careful with that diet, but he stuck to. His doctor told us he was the longest-living patient she had ever heard about, and she credited his diet. I think maybe if you approach it in the manner that it is hurting YOU and by not following the diet, YOU will be a widow years earlier than you deserve. My Dad passed in 2011, and shortly thereafter, my Mom was diagnosed with Alzheimer's. There is a special diet she could follow that will slow down the disease. However, she refuses to even believe she has Dementia, and is very stubborn. I've never told her she has Alzheimer's, but her caregiver and I are trying to get her on a low sugar/low carb diet, which she doesn't want to do. I think the person who said you have to wait to let him make the decision was telling you the truth, but I think his actions are causing YOU a lot of pain. Maybe discussing it that way will wake him up! I hope the best for you. I saw how hard dialysis was on my Dad, so your husband must be one tough guy!


Name: Grace Terry
Location: Tampa
Date: 03/03/2013
Time: 02:59 PM

Comments

Perhaps your husband has lost the ability to choose what he eats and doesn't eat, just like an alcoholic loses the ability to choose whether to drink alcohol or not drink alcohol. If that is true, he could be a food addict. Some foods very common in the standard American diet (S.A.D. for short) are highly addictive, especially refined carbohydrates (sugar and flour) and foods high in salt and fat. Ask your husband if he would be willing to accept help to stop eating the foods that are harmful to him. If he says yes, give him the website and the phone number for Overeaters Anonymous, www.oa.org, a group which uses the same principles of recovery as Alcoholics Anonymous. You might also check into professional eating disorders treatment available where you live. God bless both of you.


Name: Lisa
Location: Ohio
Date: 03/03/2013
Time: 02:56 PM

Comments

I went to Al-Anon and learned that I have no control over anyone but myself.They teach how to get serenity, and is patterned after the AA program.I learned that if you say something more than once,then you are trying to control...so perhaps you could say what your concerns are and then leave him alone about it,knowing that you will only make yourself crazy."You did not cause it,you can't control it, and you can't cure it" is also the point made about alcoholism.You could insert the name of his illness in that staement,because it is true,and might help you see that it is not under your control.


Name: pat
Location: wisconsin
Date: 03/03/2013
Time: 12:56 PM

Comments

hi I have the same problem he is being monitor for his kidney now.took him with to the store all about sugar salt fat he has a combination of medical problems going on he has had major vascular problem had 4 different stents put in stuborn as a mule went out of my way to make sure no sugar stuff. for more fish chicken even the no sugar breads the no salt veg.so i know what you mean so i came up with once a month he can eat somthing what he wants.so i try an keep in the house what he should be eating.but he does sneek off.would it help in your case to have a bowl veg. fruit out for him.i even took him back to the dr.thatdidnt even help him


Name: Mona
Location: Madison, WI
Date: 03/03/2013
Time: 11:59 AM

Comments

I just had my 92 yr. old father's explain that he has to walk around the house more and take more frequent showers and he listened to her, but when I trying tell him the same thing he refused.


Name: Lisa North
Location:
Date: 03/03/2013
Time: 10:29 AM

Comments

I appreciate the recommendations to have his treatment team explain it to him and limit access if you can do that. But ultimately, it's up to him to choose to comply or not. Perhaps he's in denial and a frank discussion with his physician will open his eyes. Talking with a therapist may help too. The emotional connection to eating is very strong. From infancy we learn that eating is one thing we can control. Hopefully, with professional intervention, he will choose to manage his diet more healthfully. Recognize the number of obese people who are likewise killing ourselves every day by our dietary choices--evidence of how difficult it is to change one's diet. My uncle had diabetes. When he was hospitalized for his first amputation, after the dietician left, he said he was not going to change his diet. Not for his toes, his vision, his kidneys, or his life. He stuck to his word. I was at his bedside when he died. He made his choice and I have to respect that. It's difficult. He was one of millions who chose death over a healthy diet. I hope your husband chooses life. Best wishes to you both.


Name: Dawn Song
Location: Oregon
Date: 03/03/2013
Time: 09:54 AM

Comments

I agree with Kate, ultimately it is your husband who must decide: it is his body and his choice to live or die. I struggled with this for several years in the process of letting go of trying to control my husband's diet decisions. He fully intellectually understood the consequences but even when he experienced them, he still made maladaptive choices. Sometimes it helped to point out to him that, as his full time caregiver (he has MS and cancer and is bed-bound), I suffer when he makes bad choices and at times I have refused to buy certain foods for him. But ultimately it his decision. Do what you can and then let go.


Name:
Location:
Date: 03/03/2013
Time: 09:46 AM

Comments

you must look after your own stress levels If your husband chooses to eat improperly his choice to be ill. My husband has gone through this with colon cancer and when he eats the wrong food he is the one to suffer. I refuse to make myself sick worrying about someone that wont help themselves. This sounds callous but I also am caregiver to a 93 yr old father and a mother that is in carehome with dementia. Therefor I cant allow myself to get sick


Name: George R.
Location: Hollywood, Florida
Date: 03/03/2013
Time: 09:43 AM

Comments

I tell my patient, that long before 'medications' foods were used to guide someone back to health. Some foods are beneficial, many are not and even harmful. SAlT for example could be extremely dangerous in many diagnosis, SUGAR also could kill a person. All fodds contain chemicals which could help or hinder a persons recovery. Keep it SIMPLE....foods are chemicals!


Name: Lauren
Location: North Carolina
Date: 03/03/2013
Time: 07:02 AM

Comments

If he doesn't follow the diet, his kidneys will fail. Period. He will die. He may be depressed and angry and could use medicinal help and a therapist to get him talking about the real issues underlying his feelings about his kidney failure. Not following the diet is a symptom of a deeper problem. I know. My father was on peritoneal dialysis for 4 years and complained bitterly about the diet. An anti depressant and a therapist helped until he decided enough was enough. You can lead a horse to water but you can't make him drink.


Name: jc
Location: florida
Date: 03/03/2013
Time: 06:36 AM

Comments

I think the most frustrating part of caregiving is when the person won't follow instructions to help themselves whether it be diet, exercise or medication. My husband won't do the things he should to help himself either (he has MCI, heart disease, neuropathy, chronic pain from spine problems, etc.). My only suggestion is to not bring items into the home he shouldn't eat, cook healthy for you both, do exercises with him and most importantly find a support group to help YOU!


Name: kate
Location: New Orleans
Date: 02/20/2013
Time: 04:01 AM

Comments

Unfortunately, your husband must decide it is important. It is a difficult thing. Some ways you can help can make things tough for you. The most extreme is not to have any food in the house that doesn't fit his diet. Another way is to join a support group together. Find other dialysis patients for him to talk to. Join AAKP (Amer Assn of Kidney Patients at aarp.org. They have information and annual meetings-very helpful.


Name: Frank Melton
Location: Bowling Green, KY
Date: 02/19/2013
Time: 02:55 PM

Comments

If he doesn't stay on the diet, he will eating foods that are toxic to his kidneys. The kidneys get rid of some of our toxic products, but the problem is that he already has toxic products in his kidney, and they are overworked already. Dialysis can only remove a small amount at a time, and it may not be able to remove enough to keep him alive, if he doesn;t stay on the diet. This information is probably on the internet, and can be searched.


Name: tj
Location: wv
Date: 02/19/2013
Time: 10:51 AM

Comments

I often find the patient is unwilling to listen to family, making a doctor appointment to discuss the diet issue may be a good place to start. I care for a parent and he wouldn't listen when I told him but when I took him to the doctor and the doctor told him the exact same thing he listened. It seems to sound different when it comes from a non family member.


 







 

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