Hello friend, I am sorry to hear about these things going on in your life. I really don't know what to say, but I just wanted to acknowledge that I hear you. I suspect everyone here is left without words, because this is really something that we can't advise on..... but we can hear you, and perhaps that can give you courage and enable you to make decisions that perhaps you need to make.

We cannot control another person's actions, attitude, or make them care. I guess that once I realized that, it freed me to no longer be jerked around by other's attitudes and lack of caring. It's a hard, but true reality in life.

Blessings to you... you are not alone.

Heather

I am so sorry you are going through this.

I have a few thoughts on the matter.

1) I understand feeling guilty about being sick. but if your husband is going to be angry and withdrawn, he will be that way whether you try to act well or not. So if you need to lie down, lie down. If you need to nap, nap. I needed at least 4 hours of rest every single afternoon when I was in end stage.

2) You husband may likely be scared and afraid to deal with his true emotions. He may realize that everything will fall on his shoulders for a while and he likely is feeling worried and overwhelmed. That doesn't mean he gets a pass for behaving like a jerk. but if there is anyone, a trusted friend, a relative (preferrably a guy) who you can enlist to talk to your husband it might help. You could pick up the phone and call his best mate and tell him that you are worried that the stress of caretaking is taking a toll on your husband. Ask his friend to reach out to him.

3) This is the time to call on friends, neighbors, relatives, anyone who has said in passing "if you ever need anything give me a ring" and ask for help. Explain that you are in the end stage of renal disease, perhaps include a short parahraph from a medical site explaining the effects of esrd and say that you and your fmaily are not used to asking for help and that you are huibled to do so, but that right now you want to help take the burden off of your husband. You can include a list of specific tasks (driving to appointments, picking up groceries, doing a load of laundry etc) and ask people if they might be able to help. I WISH I HAD DONE THIS. now that I feel 100% better, I am the one who feels I must pay it forward and help out. Your turn will come to pay back, but for now, you must ask for help and accept it.

4) seek help from a social worker. I am not sure how it works in the UK, but here the dialysis centers have social workers who help patients deal with the day ot day issues you are tlaking about. They might have resources that you don't veen know about.

I am so very sorry you are going through this. I wish I were close by. I really do, because i wan tto be able to help another esrd patient in need...for now, the internet will have to do. You are in my thoughts.

Thank you to you both for your words of support. I have tried speaking to his brother about the way he is acting and the comments he is always coming out with. His brother has raised this with him and then told me that he changes the subject. When he asks him how I am he said he always replies saying okay. I have even tried bringing it up when is borther is at my house and my husband just laughs it all off saying I'm exaggerating and to everyone else he comes across as Mr Niceguy. Today I had to go back to the hospital for ECG and I got up but felt really unwell. He came upstairs to me and said 'I'll take you to the hospital' and was acting all concerned,so he has obviously thought a bit more about his actions yesterday. And I don't want to bring it up again because he could slip back into grumpy mood. I have had quite a few friends and relatives offer me help- but I have never asked for anything because sometimes people say it without really meaning it don't they?and I've not wanted to put anyone on the spot. I might rethink this though because I know there is no way he is gonna come with me to buy Christmas gifts so I suppose asking someone to take me shopping is not so bad. I know if I ask for someone to take me to hospital appointment they wil ask about Nigel and I don't want to make things worse by telling them how he is. He hates people knowing his business. I have really been thinking pretty seriously about splitting up but keep thinking he might get better. It just helps getting it out even though I know you guys can't physically help me . Thanks so much Julie x

Julie,
Please allow your friends and relatives to help you! They offered and you do need it.
I remember after my hysterectomy surgery, the next day I was home alone with my golden retriever, Max. I told my husband to go to work and that I would be ok. I was in so much pain and realized we forgot to get the pain med. script filled. I didn't want to call anybody...(pride?) The next thing I knew was the doorbell rang and I said come in. It was a 75 yr.old dear friend, Zelma, who wanted to help. She helped me get in and out of the shower and picked up my pain meds., made lunch and dinner and even cleaned up my kitchen. She cheered me up so much too. Allow others to show their love and compassion to you. Years later I was able to be with her before she died of cancer. My memories of her kindness will never be forgotten.

Thanks Jessica. I think I will confide in my friend- I have just been speaking to her on the phone and I became quite emotional and only managed to tell her about my husband yesterday. She is going to do my Christmas shopping with me over next couple of weeks and has offered to give up a couple of her holidays to come to hospital with me if I need her to. She is as much my husband's friend as she is mine so she is going to broach this with him but says she will do it sensitively. I think part of my issue is being 'trapped' in the house- people do come to see me but I never get out properly- I just want a change of scenery before I am housebound after op. She is arranging a few friends visits to their houses and will come for me. She has come up with quite few ideas which sound really helpful. I am definitely going to take her up on this. Thank you for taking an interest in me- I will definitely be your friend- Thanks Julie x

I'm dealing with both my PKD and other family member's medical issues all at once so I'm on both sides of the fence. I went to counseling to try to find out how to keep my sanity during all of this. The counselor had some good suggestions.

1. When you are caring for someone, you need to care for yourself too. Take a night off. In terms of your husband, that means he needs to take at least 1 night a week for himself by himself or with his friends and focus on escaping from his every day chores, obligations, etc and just kick back and relax. This break is something he absolutely should not skip out on. It is the way to press the reset button to avoid fatigue and resentment.

2. Don't be afraid to ask for help. People who put all of the responsibility on their own backs can turn and start resenting the person who needs help. Like others have said... is there a way to have a friend help you, take a cab, etc.

3. Have him talk to someone. Sometimes people act up because they feel helpless watching someone else going through something and they don't know how to direct their stress and energy. If he's got free counseling sessions through work (EAP), he should use them to deal with his stress.

*Hugs* I hope things get better.

Hi Rogerjd,

I understand what your going though because I am dealing with my own father's emotions on this. I am not as far along as you are. I cannot even mention "PKD" around him and he gets upset with me. he said that its all in my "head" and that I "read too much on the internet" about it. My bf (he has been extremely supportive) brought up PKD while having dinner at a restaurant that ended up with my father "exploding" about the diagnosis. Forget getting him tested, he won't do it! So for now its a mutant Not only do I have PKD now but I have tuberous sclerosis too (that means cysts on other organs - like lungs (which mimics emphysema), kidney's, brain). This is also genetic.

Thanks fr the advice Tanjaf. Unfortunately my husband does not have access to any counselling sessions as he has his own business, but I don't think he would go anyway. He is like Jekyll and Hyde as in one day he is very frustrated because he says he can't believe that there is no cure for this disease and can see how my quality of life is suffering as well as his, and then the day after he will be in a mood and ignore me and when he does speak it's to comment on how much time I spend in bed and maybe if I did some housework it would take my mind off the pain. Just to clarify up until my severe bleeding episode in Egypt in July this year I worked full time and never had a day off sick. If I felt really unwell in the morning I would go in after lunch and if I felt unwell in afternoon I would leave early but this was only on odd occasions. I have even tried to go back to work recently because I would rather be there than at home but I was just too exhausted- so I think my husband is being very unreasonable- it's not like he's been doing this for years- and I have not really expected him to do anything for me really apart from when I was completely laid up in bed when I came out of hospital. He doesn't cook for me becuase I don't eat- I have milshakes. He does do the shopping but he works from home so this is more convenient for him anyway. My eldest daughter is very good to me. She works full time but makes sure I have drinks/treats etc. He does go out on his bike a few times in the week and I encourage him to go out socially so he doesn't feel bogged down. Maybe it's just the shock of me deteriorating quite suddenly since the 'episode'. If it co he could join me at one of my counselling sessions in the future to maybe talk through some of our issues. I have received a lot of advice about this and think I feel like I can cope with some small changes and see how things go after major operation. Thak you so much fr your response Julie x

Hello Tikasiamese
So nice to hear from you. I am so sorry that you are having similar issues with your father. In some ways this can be worse than with your partner. It also kind of clarifys it for me because it does seem that perhaps your father thinks 'ignorance is bliss' and if he doesn't hear about it -it will go away. It is quite worrying that he won't get tested because as we know proactive medication can delay the onset of many symptoms and the kidney deterioration rate. It makes me wonder now if my husband is also thinking that if I get up and exercise and run errands that the condition will disappear and I will become healthy again- forget that I can't walk or breathe. I am really sorry about your secondary condition which sounds terrible. I was once admitted to hospital with suspected enphysema, but it turned out to be a deep lung infection- it was one of the worst times of my life because I couldn't breathe and other than give me oxygen which didn't really help my breathing much there was nothing they could do but wait until infection cleared. To spend a couple of weeks in hospital on the respiratory ward was awful, and seeing dome of the other poor women with chronic breathing problems was a real eye opener for me. I don't know how you're managing to cope if your breathing difficulty is similar to this. I have problems at the moment caused by my diaphragm being crushed . They said I have 67% lung capacity and this is a real struggle, but the light at the end of the tunnel for me is having kidneys removed, so hoping this issue will be alleviated. I hope you are managing to have some quality of life. I would imagine that if you get custs in your lungs they are able to remove these- is this possible. Thinking of you Julie x

A few thoughts about men/husbands in general...

As you all know, I have lived for quite a while and have been married for a loooonnnnnggg time..:) I've learned a few things along this journey and know now, that men are not made the same way that women are. "Most" of them are incapable of feelings the things that we do. I've discovered that men are scared to death that something bad is going to happen to their wives and they just don't know how to express it and it comes out looking like anger, when in fact it is not. It's raw emotion that they don't know how to deal with. Granted yes, there are the few men that are capable of feeling what we do, I just haven't met many in my life, but I have met one or two...:( I also know that as men age, their emotions become more open, they will eventually feel things as you do, but that comes with a price. some think it's a good price, others think it's not. My personal opinion is that I sure love Jim a whole lot more than I ever thought possible ever since he was so critically ill. He will never be the same again, he is vulnurable, shows his emotions and his fears. He appreciates me more than I ever thought possible. This man was never like this in his life. He went to work, golfed non stop, was very active in his community, a wonderful father and husband. The man that never wore his fears on his shirt sleeve, now has them out there for all to see. I'am not sure if it is because he was so close to death, or what is going on, but he definitely is not the same man that I married so long ago. People can change, but it does come with a price. Do I want to see the guy that I married again? Well, yes and no. I love that he is so open and talks with me all the time, but in the same breath, it scares me half to death. He is not the same man. He even talks with strangers about things that make me cringe sometimes, perfect strangers in the stores. I'am afraid of what he is going to say sometimes, but it's always good and gentle emotion. I think perhaps it was there all along, it just didn't know how to get out, well it's out now and I am living life with the most wonderful man that lived.

Everything you guys are saying about how your husbands reacts and acts towards you, is almost identical to the way Jim "was" Did he change because he came so close to death? Or does he now appreciate those who love him in a different way? He has confessed to me that his fears when I have been sick were just as I always suspected, JIM'S FEARS! He didn't know how to deal with it and was just plain scared. It came out looking like anger, when in fact it was not. Most men, just don't know how to handle emotional situations or don't feel it to begin with. How can we ask them to do something that they are not capable of doing? I am convinced of that. Jim and I have had more long talks now then we ever had in our lives together and it truly is wonderful. Give him some time, ask him if he's afraid. You might be surprised at what you find out about him. I want to repeat this is not true in all men, but I have been lucky enough to find out that my husband is not the cold, unfeeling person that I suspected he was, quite the opposite.

lots of love,
Norma.....

Tikasiamese,
My father in law was the same way as your Dad believing it's all in our heads. So, I showed him a picture of 2 polycystic kidneys, enormous ones that had been taken out of the patient. Then I showed him a picture of the "normal" transplanted kidney that was to go into the patient. (Small in comparison) Then I showed him my CT scan and the report that goes with it. I thought he was going to cry. He apologized for being so judgmental and thanked me for explaining this disease to him. Coach Richie gave another good thing to do and that is to print out an explanation of severe symptoms and PKD/PLD in general, make copies and just hand it to them to read. I have had no more problems with anyone after I did this. It's hard to get PKD across to people by just verbalizing it. If they see visually the devastating effect it can have on us then they can be convinced that this is serious and we should be respected. Hope this helps.

Hi Norma
Thank you so much for sharing this insight into your life with Jim. It does sound as though Nigel my husband is perhaps acting this way out of fear. He never shows his emotions, unless they are angry, moody ones and I know he cares about me, but sometimes just puts so much pressure on me to be 'healthy' that I am worried about showing too much sickness. I think this is on my mind and I just sometimes want to cry and talk about what I'm scared of, which is probably why my body won't let me sleep though the night. Just reading these posts have prepared me for a lot, because now I know that dialysis does not always go smoothly, and then transplants are not always what some expected- but I feel ready for this. It is building up inside me because he always says stuff like ' Just think after Christmas you can go back to work and apply to be a manager again'. I would love to think that my operation and going on to dialysis was going to be such an easy ride for me to be in a position to go back to work so soon but I know that's not realistic. I've tried mentioning some of the posts where dialysis has not been great etc, but he just dismisses them. I do love him and I'm pretty sure he loves me, and to be honest my priority once I recover fully from my op is getting our together time back on track. I really appreciate you taking the time to share all this with me- it has been really helpful. Thanks Julie x

Julie,
My two cents worth:
Has your husband always been grouchy and irritable one day and then contrite and loving the next? In other words, has he always been, to use your words from a previous post, "a pig?" Norma may be right, he may be terribly afraid and unable to express it, or, really tired and stressed, or, just a big jerk. Only you know the answer to that.

Ever since you mentioned typos, that's all I see and it's been pretty funny - hoes and bats and soles. I'm sure I've typed some doozies too.

Is your sleep pattern new or of long standing? If my husband goes to bed at 10:00, he's awake by 4:00. If he goes to bed at 1:00, he's up by six.

I'm truly sorry your partner is unsupportive and agree with everyone else that it's time to call in the substitutes. Just tell them that this burden is too much for one person (your husband) to handle and then give them short, specific things to do. Most people will gladly help if they know exactly what they're signing up for.

And here's something from Alanon - when he acts out in public, try and remember it's not you behaving badly and therefore, YOU have NOTHING to be embarrassed about.
Lisa

Hi Lisa

When you give me 3 choices like that I would say he's definitely not usually 'a pig'! but he's probably a mix of the other 2 - frightened, stressed and unable to express it. He's probably mentally tired of the whole illness thing but he's definately not physically tired. The reason I say that is because he has minibuses and has drivers who usually does his jobs so if it's nice weather he's lying in the garden or out on his motorbike, and if its bad weather he's playing on Xbox or watching telly. He does most or all the chores in the house but they're not done like I would do them so he doesn't spend loads of time doing chores. I appreciate and agree with what you have said and a few weeks ago I even asked him if he felt like I was a burden and he said 'yes' but didn't expand. I have decided to not take it all personally like you have said it is not me acting up but I suppose that whilst he may not have this illness he is living with it full time - although he can escape it- but that's not his fault either. I don't eat regular meals but he cooks proper meals for himself and my daughters so tonight I tasted his cooking and gushed at how good it was just to show my appreciation- even though I didn't have any myself- so I am trying and hopefully with a little more thanks from me he may loosen up. The sleeping habit that I have has only been recently adopted when they mentioned 'cancer' to me in hospital back in July 2011. But I did have episodes of it a couple of years earlier which disappeared when I started taking anti-depressants. Recently I started getting up in the night to cry to myself so no-one would see me, and I became really obsessed with dying and was on the internet pricing up coffins etc. and I knew if my husband caught me he would have gone mad, so it really started a bit out of stress and then continued out of choice. Now I would like to sleep through but just can't and now I've found this forum I don't mind so much having the time on my own with a cup of warm milk. Does your husband take sleeping medication to help him sleep. I used to be able to manage n half a tablet and now I really need 3 full tablets- but that is way too much. Thank you for helping me to sort this out- I feel like I know exactly what to do now and don;t feel as lost and upset about this anymore- This forum is fabulous and I would never have thought it could have such an effect on me. Thanks again Julie x

Hi!

I'm a guy! I'm married! I'm the one with PKD. My wife donated a kidney to me 13 years ago.

Yes. Your husband is scared to death. Your disease is beyond his capability to deal with.

He is in denial of your condition. He is denial of the sacrifices he needs to make.

A one spouse who left a PKD patient said, "This isn't what I signed up for."

In other words, it would be helpful to kind of "walk in his shoes" concerning how he feels about you and your disease. Notice the separation of the two!

When you understand his perspective, it may help you to deal with him.

Now, many guys want to be the hero. If you are able to present to him that you need him to be your "champion," (and , obviously, I not saying to use these exact words), he may get the idea that he is "needed."

Another suggestion: Perhaps your neph can send him a letter telling him in no uncertain terms what your disease is all about (of course, you would write it, the doc would sign it -- yes, a long shot, but what have you got to lose?). The "authority" of the doctor may convince him that this is all too real, and his co-operation is essential.

Then, of course, show him the positive outcomes of people with PKD! And indicate that the more support the patient has, the higher the likelihood of a positive outcome!

If, by any chance, you personally are acquainted with another PKD patient, perhaps that person may provide a "witness" to your husband about the nature of the disease.

Lastly, and hopefully it won't come to this, you might have to lay down a challenge: Are you man enough to support me, your wife, on the PKD Odyssey?

And...be prepared for the answer.

The fact is that there are more than one spouse who have left PKD patients.

Hopefully, you two can transform your relationship from adversaries to allies!

Just my two cents! :-)

Peace and Blessings!
CoachRichie