So my husband is stage 5 kidney disease. He found about 5 years ago now that he had PKD and when we went to the specialist he was already stage 3. He didn't take this news well. As years have past and his health has gotten worse so has his mental status. I know it is hard on him but he hates going to hi appointments and doesn't like talking about the disease or anything. After most doctor's appointments he will go lay in the bed and be depressed. Well today we went to his 2 week post op of having a fistula placed in his wrist and it didn't go well. They are thinking he might have to have another a surgery to have it put further up his arm. Well he comes home and goes straight to the bed. As a wife I couldn't imagine what he is going through but he just gets angry at the whole world. I don't know if there are any wives out there going through the same thing or anybody that can give me some advice to help me charter through these waters...I am open anything to help me better understand and figure out what I can do to help him.
Advice: So my husband is stage 5 kidney... - Kidney Disease
Advice
I really am sorry for you both.The story about your husband is, unfortunately much like my own; I had battled for a good ten years to stave off dialysis. Like your husband, my first fistula failed, and I had to have another one further up the same arm.
Much like your husband, I struggled. I felt incredibly angry and resentful at what was happening to me. I think that's to be expected.
Having struggled with depression for most of my life, it felt like the last straw for me too.
It is very difficult for a spouse to do anything constructive to help. I even found myself resenting my wife's and our children's apparent attitude that there was no doubt that I should be prepared to accept my situation, and that the idea of spending the rest of my life on dialysis would be something I could take on board.
I felt angry at my family for the implied acceptance that I should accept my situation, and all the trauma and stress for their sakes, when my own instinct was that I couldn't cope, and frankly would have turned down dialysis, and let nature take its course.
20 months later, I am on dialysis ( which is not easy for me - my blood pressure is very low during and after dialysis), and I seem to have accepted my situation - why? I am not sure I can tell you, but I seem to be coping much better.
The obvious advice is that you both consider counselling; it might help. Apart from that, hopefully, as in my case, it is just a case of time and acceptance.
If you want to share this post with your husband, please feel free to do so.
I really hope things improve for both of you, and that this will be a period you will both look back on, and feel that it is just a process that you both needed to go through, however painful.
God bless you both.
I feel sorry for your situation, but since you are not the patient asking for advice, i don't know what to say. My EGFR is 51, so i am stage 3, type 2 diabetic and have psoriasis + psoriatic arthritis with constant itching. I saw my Nephrologist for the first time in September this year. I was honest and told him i drink, He said if you don't want to go on dialysis, then you need to stop. I stopped on that very day Bang!I faced the demon, by taking the appointment with my Nephrologist 9 months back and met him September as i said, because i knew if i don't take control now, Then it might be too late.
Your husband has gone into a deep depression and appears to have resigned himself while at stage 3.
Sorry, I am going to be honest with you, at stage 5, you might want to start making enquiries about Kidney transplant, not to mention about the long waiting list, which brings dialysis into the picture!
I am aware that you are asking for advise, so you can understand better and help bim!
But even at stage 5, not all hopes are lost, if he listens to his specialist.
Lastly, i am sorry if i have said something to hurt you, if any, it is purely unintentional!
First and foremost both of you need to seek counseling together. Him to cope with his disease and you to help you understand what he is feeling about his disease. As for the failed fistula, I would not try to replace it. I have had my catheter for three years this month. I lead a normal life. The only thing I cannot do is take a cruise because treatments on cruise ships vary from $500-$1,000 per treatment. As for the push for fistulas, just know that the dialysis center and the doctors get paid less for catheter patients. This is why the push. If he keeps his site clean, changes his own covering there is no reason to have infections. If the area does get red, go to your PCP and get an antibiotic. If you want to swim or shower I purchase the 6" tegaderm rolls (originally used for new tattoos) on Amazon and use that over my patches. When you remove is after a shower or swim, it will remove your dressing also. NOTE: I only swim in my pool, I am not sure about public pools, lakes, rivers or oceans. But at least I can swim. Is he eligible for transplant lists? If so, discuss the possibility with him. Transplants do not come overnight!!!! I wish you luck, I will keep you both in my prayers.
The best advice I can give you is to give him space and time to adjust. Do not put pressure on him to "be brave" and accepting. Dialysis is a total life change. I too am at the point your husband is at and it is very hard. The acceptance that this is the fate I have no choice in is really difficult. And on top of that, there is the body's physical changes as my kidneys shut down which are not pleasant.
As a caregiver, it is so difficult to know what to do. The best thing is to just ask him. What would he need or want from you. And then do it. If it is leave him alone, then give him the space he needs. He is grieving. And try to remember, he is mad at his disease, not you.
Try to take care of yourself. He needs you to be well. Do things with friends that make you happy. Try to get away from the situation to regroup and recharge yourself. Ask him to talk, but do not force him to. Ask his doctor if he/she can help you find a support group or counselor to help you.
Words can be difficult. It is so hard to say the right thing. Remember, you are healthy and a reminder of what your husband is losing. Just keep telling him you are there when he needs you to be, and that you love him no matter what.
Thank you so much! Your response really helps.
Ok, gonna throw in my two cents here. Not sure you are reading any of these replies, which are already excellent. Do respond if you see anything you can use in any of them. My thought is that your husband suffered from depression before this all started, and probably had some anger about life already. This just exacerbated it and brought it more to the surface. So what to do and what to say.... The first thing to remember is that even for a spouse, the feelings of that person belong to that person, whether it's sadness, anger, frustration, or even happiness. Let your husband own his feelings. You can't control them or do anything about them. The only thing you have control of is your response to his behavior. I know you want to take care of of him. But there's a big difference between being responsible TO your spouse, vs being responsible FOR your spouse. When you are responsible for your spouse, you take their problems on as your own. That never works. Ask anyone who's married to an alcoholic. Being responsible TO your spouse means helping locate any and all resource that might help him, and by simply being there an listening with compassion while he "processes" all of this. I wish I could tell you that your husband is going to simply agree to going to counseling. Unfortunately most counselors and counseling offices are not geared toward the average american man, much less the average depressed and angry american man. I wish counselors offices looked more like a Texas Road House or something. And I wish they would change their questions to match male inclinations. So the best chance of getting him to a counselors office is by getting his docs and nurses and social worker to strongly suggest it. And you may not be invited to go (and that's absolutely ok). Now if you want to see your own counselor, that's absolutely advisable as well.
The best ideas I have for you that you can do right now, is to simply set up your home to be a "safe" environment for your husband to process all of this. Work hard not to react to his emotions other than having compassion. That's not easy to do. And create an environment of love, trust and warmth as best you can. Use lighting, music (his favorites, not yours), comfort food (within the CKD diet of course), temperature, decorations (holidays are coming up), and see if you can find things to make him laugh. And do some activities you know he likes (though they may not be your favorite). In other words, take your relationship back to the time when you were dating, making life fun and enjoyable as much as possible. Don't push all this, just be subtle about it. Then do the same things that make you happy. Spend some time for yourself doing enjoyable thing, so it replenishes your tank so you have the strength, energy and mental capacity to create the environment for your husband. All those things are what being responsible "TO" your husband means. Then it will be up to him, and that's out of your control.
This is way harder than it sounds, but give it a try and see what happens. You might be surprised.
Wow, what sage advice! I love your comment about wishing counseling offices look like texas road houses. I laughed but knew you were right.
Jayhawker
Thank you so much! This was a big help and great advice!
You are very welcome. Oh, I don't give advice. I just offer ideas. You take what you think will help and toss the rest.
Ron...Texas Roadhouses....OMG lololol...Perfect! Your answer was spot on in so many ways. Even for those of us who are the patient, these are all things to do that will help us get through many of the many change CKD causes.
As soon as the first leaf fell, I had my house decorated with fall-colored lights, (I am Christmas light fanatic to a real addiction) and all my pretty fall decorations and I have many. I have known for over a year that this fall I would start dialysis. And even though I did not want to celebrate one of my favorite seasons, I forced myself. Having my environment pretty and soothing really helps.
Oh and on a personal note. I have PKD and am on PD dialysis for 10 months. He's more than welcome to contact me if he wants details. Has he considered PD? It's a treatment, but it's not bad, cause you get to control it, unlike in-center hemo
I don't know what PD is? His last doctor's appointment is GFR had increased to 16 so they are not rushing him to dialysis yet.
PD is Peritoneal Dialysis. They do surgery to insert a tube into your abdomen, around the belly button that goes into your abdominal cavity that is lined by the Peritoneal lining. You get a machine called a "cycler" which pumps a special medical fluid into your peritoneum from bags that sit near the cycler. Mine pumps 2300ml each "exchange" in. Then it is allowed to sit in there for about 2 hours, then the machine pumps it back out, then pumps more in. Mine does this 5 times per night over 10 hours while I sleep. While the fluid is sitting inside me, it draws waste and water from the blood through the Peritoneal lining into the medical fluid, to be disposed of when the cycler pumps it back out again. The cycler pumps the fluid through a tube that I have stitched from the machine into my bathroom into the tub that I never use. Some people have it drain into the shower or into the toilet.
Basically I spend 45 minutes setting everything up, taking my vital signs, then hooking up to the machine at night before I go to bed, the machine does all the work while I'm asleep, then I spend 15 minutes unhooking from it in the morning and cleaning up.
I won't lie and tell you that this didn't take some getting used to, but after about 6 months, it's like my normal routine, no big deal. I have the tv on or read if I am not sleepy when I first go to bed during that first "cycle".
Now PD is not for everyone. Wait and get others opinions on her about it. And your husband should look into it if he's at all interested. It seems to be the option that's more like normal life, it's just a new kind of normal. But he will ultimately need to make the decision. You might get the social worker at his clinic to go over the pros and cons of each type of dialysis, if he doesn't get a preemptive transplant. Oh there's a book "Help, I need dialysis" that explains it all in very good detail if he's a reader. Again, the book is for him primary, you secondary--don't use it as a means to push him about it all--he needs to have the interest in exploring all of this. But it's definitely doable. I'm living proof (knock on wood).
I have kidney disease and want to say, it's not the end of life. I switched diet to Plant Based (vegetarian) and it has kept me from having to do dialysis for over 20 years. I can tell you that you can lick this disease by taking the load off your kidneys through diet. I found out about a Facebook character called Dadvice who was told he had to start dialysis. His urine had blood in it. His feet were so swollem he couldn't get his shoes on. He said he would not go on dialysis and tried different diets. Meidterranian etc and through study foud out that a strict vegetarian diet would reduce the load on Kidneys and now promotes a plant based diet 3ith Jen Hernandez that is also on facebook promoting a plant based diet plus a online course available to anyone that signs up. Teaching which foods will reduce the load on kideys and your GFR will increase as more and more reduction of load on kidneys will alloe them to heal. My GFR has varied over a wiide range from 30 to 60. PLant based diet works. LOOK up Stopping Kidney Disease Food GUIDE on Amazon.com writtn by another Kidney failure srvivor Ken Hull. It is my bible.
Given his current behavior, it is highly unlikely he would even consider counseling even if it looks like a Texas Road House [ha ha, I agree] Counseling is not going to change his diagnosis or what he has to do. He knows that. I think you've received excellent advice from these posts. Bottom line, they're his feelings and he has to process them. As a caretaker, I know you want to help, but no one can process someone else's feelings. You can only deal with how his feelings effect you. As others recommend, give him space and whatever decisions he makes, they're his and yours to accept or not. I'm sure you encountered this behavior with him before only now it may be time that the "rubber is hitting the road." Blessings and reach out to all the wonderful people who wrote to you. There's a community out there who cares and who can share experiences.
I am a women in your husbands shoes. I was given the news I was 3b earlier this year. And I can understand his depression, anger and general feeling of helplessness. I go through all these emotions several times a month. Very few of my family/friends know I have CKD and fortunately I don’t have any other issues.
So I was given some good advice. See a therapist and or a psychiatrist. I did and do. It was great advice. I have someone other than my husband to vent my anger frustration and disappointment to. Of course I also watch my diet, walk/exercise.
I know how devastating this diagnosis can be. I wish your husband and you well
Is he physically tired or just feeling down? At stage 5 he would start feeling the impact of the failing kidneys. He needs to understand that he will feel better once on dialysis and that dialysis is just a stage in life that will pass, his life is not over.
Have you picked a dialysis center yet? Most of them have a social worker that you can get in touch with and get some support. Ask about home dialysis, did the nephrologist not suggest it? Seems a little strange for his young age. You get a lot more control, feel better and get lots of support. There is usually a dedicated nurse/section at the clinic for home dialysis.
I want to add a couple more things. I forgot to say, and it is important, that you are doing an amazing job. Being a caregiver is really hard. You want to fix things, but can't. Your husband is lucky to have you. Remember you are important in this relationship.
Second, if his fistula works out, look into home hemodialysis. He can control the time and days he does dialysis, and you can learn how to do it with him. It will be easier on both of you than in center and it is easier on the body.
I'm also a caregiver to a spouse, just like you. So, my words are simply from that perspective. I have personally found the role to be exceptionally difficult at times. My husband was in profound denial with his diabetes . I warned him about his diet choices throughout our marriage, but that fell on deaf ears. He finally faced reality and told me about the situation. Dialysis started around 2 or 3 years following that announcement. So that's the backstory in brief. Honestly, there were times I wished our roles were reversed - 'cause I saw the problems, wanted to address them, and had a "vision" for the outcome; he simply wanted things to go away. So, I found myself going to him and telling him that I was there to help him, to find ways to improve the outcome, to help make decisions. He was clearly relieved. So we went to work on diet matters. And that worked well for a time. Then, by happenstance, I overheard, during a virtual call, his nephrologist telling him it was time to consider dialysis and, ideally, a kidney transplant. And, was shocked to hear hubby saying...oh no! I'm fine! I'm feeling great! We don't need to concern ourselves about these things. (Denial) I flew across the room, joined my hubby, and began asking the doctor questions...the differences between forms of dialysis, the value of a transplant, etc. The doctor, relieved to see me, told me dialysis is bridge to a transplant and he preferred to see my hubby on peritoneal dialysis in the meantime. Indeed, sometimes dialysis could be avoided altogether by going straight to a transplant, but the time had passed for that. He offered to write a letter of referral to our nearby transplant center which both us now welcomed. (He then turned to my hubby and said, "Happy wife! Happy life!" Lol.) Shortly afterwards, dialysis started, followed by a transplant. My hubby is doing well today. Indeed, there can be a good life after kidney failure! In my opinion, having a vision moves one into goal setting. As my hubby's caregiver, I've learned the value of going to all his doctor's appointments, to ask lots of questions, to research things thoroughly - to do everything possible to keep my hubby moving forward. He has never done these things, simply unable to address it. Stuck. So I give him HOPE. But I want to quickly add that I am only speaking from my own caregiver experiences. I'm this way, others may not be. I ran across a lady some time ago with a hubby having the same kidney issues as yours. His eGFR was exactly 20 - a perfect time to look for a preemptive transplant! She said she wanted him to come to that conclusion "on his own"; not her business. (She was a registered nurse.) Another lady told me that she was unable to help her husband, she was so upset that she was seeking "grief counselling". Another one sought counselling for her hubby. I know others that simply walked away - terribly heartbreaking. Everyone has their own perspectives; we all have our strengths and weaknesses. I try to use my abilities to lift up my hubby; others do so in other ways. We are all such unique individuals - yet the vast majority of us have a deep love for our spouses. I sense you, too, will find your role and direction in taking care of your hubby. And please remember, we care about you too here. We are always here for you.
So sorry your husband is going through such depression . I know alot of people go through depression with ckd. At my dialysis center they are always doing a survey how delete you feel . If he start dialysis then he will have access to a social worker there she can help him with depression . Go to all his appointments with him and all classes so you can learn too. The social worker is there for you too. I’m on pd dialysis I do 9 hour at night at home on the cycler I like to have my days free I hook up at 9pm I’m done by 6 :15 am . Talk to doctor to see if that a better option . Prayers lifted for you both.
I have Kidney Disease and found I can susrive without dialysis and live a nomal life by switching my diet to PlantBased and watching carefully the food I eat to be low in sodium, potassium l protein etc. facebook has three sources to look up for your path to a normal life. Dadvice - Jen Hernandez - and Ken Hull who wrote a book available on Amazon "Stopping Kidney Disease Food Guide. Try it - It saved my life.
Glad that works for you. I assume you never had to be on dialysis . I think diet is good it work for me for 15 years they told me I was going to be on dialysis almost 10 years ago I held it off until this year I gave polycystic kidney so I really can’t control that I can control my blood pressure and diet but they even put on my chart to many cyst to number
Hi there, is the book by Ken hull or Lee Hull? My father has had CKD for years but his egfr just dropped from 52 to 38 inside 8 months so he needs to take drastic action now. Did you go low protein and low potassium? At what stage were you referred to a nephrologist? Did any drugs help you? thanks in advance !
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