I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Yvonne on July 18, 2009, 11:28:24 PM
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We have an appointment on Monday at 16.00 hours to find out the results of John's URGENT CT scan.
We are not even discussing the issue with each other as both of us are so scared of what the results might come up with.
Has the cancer returned is the most worrying.
Will they carry out another operation for the 2 hernias before they strangulate again.
Has he got to start dialysis.
Will they keep him in! In some ways I hope they do keep him in and try to sort his body out, let them try and make a bag stick to the stoma site, let them deal with the wet beds, let them hear how bad John's cough is, let them sort out the medication for him.
Please give me a break and make John well again.
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Know just how you feel and you need a little break also. Remember, the nurses will take care of him and you do not have to be there all the time. I will pray for John and hope things work out for him, and for you also.
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I am thinking of you, too. And I understand not talking about it. Sometimes we just need to keep our worries locked away so they don't overcome us. Been there.
:grouphug;
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What a giant amount of stuff you are dealing with! Good luck with him! I hope the docs sort things out for you all.
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Fingers crossed for you both. It gets very wearing doesn't it.
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Dear God:
Please bless Yvonne with the courage and strength to carry on.
Please relieve her and John's fears for the future.
Please shelter Yvonne before her faith perishes completely.
My prayers for you Yvonne.
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breathing with you...
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Thinking of you today. Yes, I hope they keep him in and get him sorted too.
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We all love you, Yvonne :cuddle; I am saying lots of prayers today. :grouphug;
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Any news Yvonne? Hope all is good :cuddle;
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Thinking of you Yvonne. :grouphug;
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:waving; Hi - just checking in Yvonne. :cuddle;
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OH Gosh! This made me feel for ya, I think most all of us can say that we've been there!
Sending good thoughts, and prayers your way!!! :grouphug; :grouphug;
Blessings to you both!!
TJ
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Thanks for your thoughts and prayers everyone.
After arriving at the hopital for the appointment at 4am, we were told they were running an hour late, so it was 5.15 when John's surgeon took us into his office. He sat and pondered through John's notes after minutes of silence I started to ask questions. Has the cancer come back, he said we can see no signs of it around the lower part of your body, that was a relief. He said he would like a second oppinion going back to the other surgeon that carried out John's operation he had back in January. He said he feels as though they ought to operate again while John is well as they do not want it to become another emergency. He said they will probably resite the stoma, it's another big operation and John is not keen to have it done. His kidney is still holding out creatinine is now 401.
So here we are again waiting for another appointment, John is so feed up. Yvonne
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Hi Yvonne,
Well that leaves you not knowing a lot more really doesn't it. It does at least sound as if the cancer isn't back which is wonderful news, but John still has to have a major op which has to be a worry for both of you. You must both be so fed up, I know exactly how you must feel and I can only guess how depressing this is for John. Holding you both in my thoughts. :cuddle;
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It is now 3 weeks and we have still not had this URGENT appointment. I have wrote a letter to John's surgeon and posted it on 1st August. Trying to explain to them the way I feel that this is my illness as well as John's. I am the one that has to deal with everthing to do with his medical side. I have not told John about the letter as he wants to put off the operation for as long as he can. The hernia is so big and can't get a bag to stay on longer than 6 hours, have tried so many different sorts, my cupboards are full of Urostomy bags from different manufacturers. I have this terrible fear that one day when he coughs his tummy will explode and the contents all over everywhere. This thought and dream will not leave me, he sleeps and snores without a care in the world, I feel I'm heading for a nervous breakdown and sometimes wish I could, just to get away from the situation. It is just not fair how these Dr's keep you waiting we are living on a knifes edge. I don't suppose for one minute they will take any notice of my letter but I felt a bit better for writting it.
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Oh Yvonne what a dreadful long wait you are having, I hope you hear something soon. Have you tried phoning the consultant's secretary, some are very nice and helpful (others...........hmm well!). Its no better when you get an urgent referral as we've found, as you know Dad was admitted as an urgent case last Thursday and to go on the emergency list for Friday, now it will be at least Weds and probably later before they do anything and all the time he is in dreadful pain. I know it doesn't help you but thank goodness John is able to sleep through it all really, at least you aren't seeing him suffer too. I understand how you would like to get away, I often say I wish I was a million miles away, but we'd still worry and care if we were. I hope you hear something in the post today or a at least this week. Keep sailing that ship :cuddle;
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:grouphug;
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Yvonne,
I am sorry you're having those dreams - sounds awful. Is there anyone - a social worker or hospital admistrator that can help you get the appointment settled?
:cuddle;
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Are you able to be honest with John Yvonne, or are you trying to avoid putting more on his plate? I feel you should try to tell him how you're feeling - maybe there are some things he might be able to take on himself? It seems awfully hard, but he may have no idea you're feeling so down about it? I would think about making a list of the things that are bugging you, and try to have that discussion. You shouldn't have to feel like you take the heavy load all the time. Hard as it is for him he needs to take this on board or your relationship won't survive - and has he thought about how hard this would all be without you?
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Oh yes John is always telling me he could not live without me, I have told him I think his tummy will explode one day if he refuses to have the operation. I told him I will just run away and leave him to it and he knows I'm only joking. It's not his fault he is so ill I just wish the doctors realize how it effects both our lives. I suppose what makes it hard for me is because I have to do every thing now in the garden and in the house. He helps out with the light jobs. He was such a fit man before all this even refereeing the kids football match every week at an age of 70! never been ill in his life and thought every one else was the same if I was ill he would just say your fine.
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Yvonne, you really need some regular breaks from all you do and deal with. At least once a week, off to do something for YOU, alone or with a friend or two. Even just a nice tea and a book somewhere for a couple of hours but not at home.
I could never get my husband to believe that he needed time away, well he believed he needed it I think but thought he couldn't go because I'd need him more. I ended up making arrangements for a friend to be back up in case I wasn't able to take the subway to the unit, another to assist with grocery shopping and I'd remove all objections from his plate. I'd send him to his beloved cottage for a few days. It was of course in my best interest to avoid his burning out but I was also seriously concerned about him. If a care giver's batteries aren't recharged rather regularly(even going to work can spell r-e-s-p-i-t-e), burnout is rather inevitable. When I was working as a social worker with very tough, long-term cases, avoiding burnout was part of my training and ongoing supervision.
I do hope you will consider this and somehow make it happen. Not saying it's easy, that it's not. Just saying it's essential. Any possibility of you unloading to the social worker in the hope of having him/her communicate to the team just how high a toll this is taking on you?
:cuddle;
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I've come to the conclusion that John is a jealous man. It's taken me a long time to realise that. When ever we have visitors from my side he shows a very hostile side of him and makes it very uncomfortable for me. I volunteered to look after the grand children for a couple of weeks in the summer holidays (from my first marriage) he picks on them all the time and I argue with him as I seem to be sticking up for the children all the time. This year before they came I said to John if he didn't behave better to wards them next time I would go to their house and leave him for a week. This he promised to do but we were only 2 days into their stay when he started on them again. I could understand if they were naughty kids. We had them for 2 weeks and in that time I threatend to take them back home and stay there with them. After they were gone John is so nice to me trying to make up for what he did, upsetting me and the kids. He is the same with a lady from down the road that I have got friendly with, Jenny she has taken me out in her car a couple of times and when I get back although Iv'e only gone for 2 hours he says why have you been so long and complains every time Jenny knocks at the door. If I go into town on the bus for shopping he always wants to know why Iv'e been so long, (2 hours) at the most.
The reason why my first marage broke down was because he was such a jealous man, I can't believe it's happening again, makes me feel like I can't breath. I do not know what to do about it, I dread anyone coming to visit, the only time he is nice is when his family come on over he is like a changed man. How do you cope with someone like him. When I look back over our 15 years together he has always been like this so I will not blame it onto his illness, but it has got worse.
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Honestly I want to smack him! He doesn't know how lucky he is to have someone who is looking out for him! I don't really have any advice - I can't imagine living with that attitude. I can only say I would sit him down and tell it like it is. He has to change - you cannot be expected to put up with this. I think you should say you WILL have X hours a week off. Decide on a time - and do it. Say Wednesday afternoons are yours and go out for longer than 2 hours. Organise something with your friend where you leave the house. Then build up from there. Or maybe you should seriously think about leaving? Does that thought make you sad, or just guilty?
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I agree, you need to follow through rather than threaten. Go stay with the grandkids, he will have to get by without you. It can't be healthy for you to live under this stress. Make time for yourself, do things you enjoy and spend time with friends.
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But I feel so guilty and I think he know's it, if I sit down and talk to him after a row he always turns it round to him being right he is very clever, and now he always blames his illness making me feel even more guilty.
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You need to try to talk to him at another time - not when you've had a row. If you honestly only feel guilt about leaving - not sad - then maybe you should seriously consider it. You do not have to live like a slave for him if you don't love him any more. Not that I think you should live like a slave for him if you loved him either by the way!
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But I feel so guilty and I think he know's it, if I sit down and talk to him after a row he always turns it round to him being right he is very clever, and now he always blames his illness making me feel even more guilty.
I am sorry that you are going through this "alone"
I can only try to give you advise......
Make a list of everything you do everyday. Like a checklist and put it up on the fridge.
Even list the smallest thing.(like eating, hanging laundry) And then make a list of everything that he does on his list and put it up on the fridge.
Make sure he sees this. If he asks why, you can tell him that you have to start finding some free time for yourself. (and him.... hehehe)
Most people just take things you do for granted until you SHOW them what it is that you actually do.
If he starts appreciating you.... his attitude may change.
It worked for my mom and dad many years ago...... I know it is not the same but it may just work.
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He is blackmailing you emotionally by making you feel guilty Yvonne and, as hard as it is, he must not be allowed to do so. If it's too hard to talk to him face to face, could you write him a letter outlining things. I think he is probably afraid of being on his own but if you don't get time away for yourself, and regularly too, you're likely to end up resenting him more and more, being utterly miserable as you sacrifice yourself for him and possibly even leaving to preserve your sanity. John needs to understand that you cannot and will not continue to suffocate like this. The illness is not his fault but nor is it yours and he needs to know that if you can't get a break occasionally you might need to get a more permanent one. I don't say this in any punitive way towards John, rather he is unwittingly punishing you by his actions. I'd also let his family know that the man they see on visits is not who you actually live with day to day. Could any of them relieve you occasionally?
I also agree that threatening to do something needs to be followed through upon but this might need to be planned rather than impulsively done.
Can you contact your social worker to talk about help in getting some respite for yourself?
:cuddle;
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Do you know what the first thing I think you should do is? Change your screen name. Make it be one that reflects you. It's interesting that you chose John's name as your screen name. Why don't you make that a small step for you. We'll still know who you are. And I don't think of you as John I think of you as Yvonne.
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Yvonne, I have no better advice than the wise words that Hanify and Monrien have given you.
Please do something for yourself so that you don't completely crumble.
:grouphug;
Aleta
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I have tried to change my screen name, but the only change that took place was the picture. How do I change it?
I first came to this site for John, I thought he would be the one asking all the questions, thought it would help him through his illness, but he didn't want to no, and has never read one letter that I have wrote. Thankgoodness.
It's my birthday today and John is being so nice, thats when I know I still have some love for him, bought me in a cup of tea in bed, the first one since last birthday.
Thanks for all your advice Yvonne
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Oh good on you Yvonne! And happy birthday - I didn't realise. Maybe just start another membership if you're not sure how to change it. Maybe it's not possible once it's set up? Where are you Chris?
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Happy birthday Yvonne. :bestwishes;
I am so sorry to read all this, I don't know what to say except thank goodness we have IHD to come to. :grouphug;
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I have tried to change my screen name, but the only change that took place was the picture. How do I change it?
I first came to this site for John, I thought he would be the one asking all the questions, thought it would help him through his illness, but he didn't want to no, and has never read one letter that I have wrote. Thankgoodness.
It's my birthday today and John is being so nice, thats when I know I still have some love for him, bought me in a cup of tea in bed, the first one since last birthday.
Thanks for all your advice Yvonne
Yvonne, please tell John how much you love that he makes you a cup of tea, how it makes you feel like a wife he cares for rather than a nurse he needs. Cups of tea from him shouldn't just be for birthdays, they don't have to be in bed but those little considerations go a long way.
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:birthday; Yvonne. I have stayed out of this conversion for my own sanity at the moment because I am dealing with things just like you and I just have to step back sometime. I always come checked your post and I think maybe okarol could help with changing your name, not sure. I'll keep thinking of you and hope things get better. :cuddle;
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Yvonne,
Good for you in getting your avatar changed. I know the name can also be changed because HomeDialysis did it!
Be you. Take care of yourself first. Only then can you think about being a caregiver for John.
:grouphug; :grouphug;
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:birthday;
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Thank you for the birthday wishes, as you can see I have to also to thank Okarol for changing my name Thank you Okarol.
Thank you for all your advise, tried talking to John about all the things I do for him, which he could do for himself if he tried, but he thought it was a big joke and said he thought I enjoyed what I do and make a much better job than he would. In a way he is right as he is so messy and uncaring, we would have urine all over the place if he changed his bag. Maybe after they have re sited the Stoma, he will be able to do it then as the Hernia has got so big he has to lay down on the bed while I changed the bag.
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Good on you Yvonne for having the discussion - and nice to see your name! I love your avatar too. I don't have the answers I'm afraid - but I think you're making the right steps. Keep talking about it - maybe he'll realise soon that you're serious. I hope he realises before it's too late - he's gonna miss you like hell if you go.
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Happy Birthday,
I just thought I would respond to you, because I go through S**T, with my husband as well. Last month, I traveled for my job, for three days, in the past, he has come with me when I had to travel, but this time he would have missed two sessions, so he could not go. The first night I was there, he called and stated his blood pressure was extremely high, so I told him to go to the ER, or be at the doctor's office the first thing the next morning. When I asked him the next day, how he was, he stated it had went back to normal. The next day, he had a problem at dialysis, and called me freaking out, I calmed him down over the phone, and also received a call from the covering nephrologist, who I really gave a piece of my mind to, and explained to him I was away on business.
I think at that point, my husband realized, that I was not going to come running home, and he made it through the rest of the time. Sometimes, you just need to go, and do it for yourself, we all get so caught up in taking care of spouses, we forget who we are. Also, while I was there, I took advantage of the SPA, and soaked in the Hot Tub, with a Pina Colada. I can't wait until the next business trip.
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Good for you Tee, when ever I leave him for more that 2 hours I get phone calls from him, the last few times when I've gone out I forget to take the mobil, get it in the neck when I get home but it's worth it.
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Yvonne.
I love the new Yvonne pic....
Hope you are doing well...
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Very nice photo of you Yvonne. :flower;
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Just tell him you have been getting some incredibly indecent proposals from a guy in the States and need time alone to consider them :guitar:
Best wishes and hope he wakes up soon........
Tom
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Oh I wish it were true, I'm doing fine with all you folks taking care of me, I'm pleased to hear I'm not the only one who feels like I do, but it would be much worse if I was the one with the illness as John just thinks no one should be ill only him. If I have a headache he has one to, if my toe hurts so does his. So I have learned my lesson, I don't tell him what is wrong with me I wait for him to say he has a headache or something, then I say so have I, why didn't I do this from the beginning. I do sound hard, but it is now what life is making me become, trying to deal with every thing.
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Yvonne, I am so glad you changed your screen name and I love your picture. :2thumbsup; I think you are doing a great job of gaining some of your life back. After years of behaving one way (always giving in, taking care of everything) I decided a couple of years ago I couldn't do it anymore. (I am the one with kidney disease and he is the one in denial!). I had to find "me" again. So, I get your need to not have to answer for every moment of your day. Leave your cell phone at home and go shopping! Sometimes we need to take small steps to stand up for ourselves. We are all behind you and support you 100% :grouphug;
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Well in looks as though my letter to the surgeon may have worked. John got a letter from them to say he has an appointment on the 25th September in the outpatients Dept, General Surgery. I still have not told him I wrote a letter as I know he does not want surgery. If they re site the stoma he may be able to manage it himself, and he will not moan and groan every time I change it. But I expect it's a long way off as if they do decide to operate then he will be placed on a waiting list, Christmas will just come and go again. He is still having his renal check ups and they are not done at the same hospital, so if they do operate then the two hospitals have to have close contact with each other. His illness is very complicated, and as I said before it feels like it's my illness I'm coping with.
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Good for you for being proactive, Yvonne. He never needs to know that you wrote the letter.
I, too, love the photo. :2thumbsup;
Take care of yourself. :flower;
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It has been my experience a person isn't going to change unless they themself want too...it doesn't matter what you do because they will find a way to make it seem like you are doing something wrong...not them. Myself I have experienced this twice through marriage...you would of that I would of learned the first time! I'm not going to tell you what to do..that is your decision....just be careful,look out for yourself and don't let him make you feel guilty. Your in a delicate situation with your husband having all these health related issues. Just please take care of yourself.
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An update: I had a letter back from the one I wrote to John's surgeon but unfortunately John open my mail !!!!!! I was a bit upset but as he read it there is nothing they can do for him as it would be life threating to carry out a reconstruction. But did not say they could not repair the hernia. As I said before John has an appointment on the 25th Sept. and now he wants to cancel it and just take his chances. What do we do? It's his body so I suppose it's his decision. But I would think he should go to the appointment just to keep his notes on the list.
Changing the subject, last weekend I said to John do you fancy a trip up to see the kids for a couple of days, he said no, I said well I've made up my mind to go on my own then, right up till the morning of leaving I felt very hesitant but off I went. I had a lovely time with my children and grand children they all went out of the way to spoil me, and we party for 2 nights. It was like a bird being let out of a cage and I have come back with a different look on every thing. How long it will last I do not know but I feel great, must do it more often.
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Yes, Yvonne, do it more often. You sound even better, and how wonderful to be with your kids. Keep it up girl, you are doing great!!! :bandance;
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I'm so glad you took time out for you. It's important. I have dinner with my daughter and grandson once a week, attend yoga classes, and get out pretty much every day, even if it's just to go for a walk around the neighbourhood. I have discovered that us caregivers are often lost in the mix. Because of this, we need to be vigilant in knowing and in taking care of our needs. Do what brings you joy, give up feeling guilty, and enjoy life. It is possible, even with the challenges that sick husbands bring.
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Good for you Yvvonne! :2thumbsup; I am the one with kidney disease, but we have been married a long, long, time and since being diagnosed I feel a great need to remember who I am----just me. My mini visits with my sister make me feel like a teenager again and the visits with the grandkids feel so very loved. Sometimes wives are taken for granted, no matter who is ill. They are so use to having us there and taking care of everything. I am so happy you didn't back out and that you "partied" with your kids and grands and that they spoiled you. You deserve many good things. :cuddle; Start planning the next visit. :thumbup;
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Yvonne, I really hope they sort him out, I feel for both of you. Keep positive and take a rest yourself.
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I'm so glad you were able to get away, Yvonne. Especially to see children and grandchildren!
Keep taking care of yourself. It will be better for both of you that way.
Good wishes for you and for John, too.
:grouphug; :grouphug;
Aleta
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Thanks for replies, but what do you think about John wanting to cancel his appointment on Friday? Do you think it's up to him or should I say he must go? I really feel like washing my hands off him if he refuses to go please help. :Kit n Stik;
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Yvonne, I dont know what to say to you. He must be so scared, and fed up with the whole thing. You also must be scared and frustrated. Just tell him he needs to keep this appointment, things change so quickly. To-day they can not do it, to-morrow they may be able to. Please tell him not to give up, tell him to think about how you feel. Lots of hugs to both of you.
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Oh boy, this is tough. Has John told you why he doesn't want to go the appointment, other than he wants to take a chance? It does sound like he's afraid and frustrated. Have you told him how you feel, how much extra stress he's adding to your plate by avoiding dealing with this? Is he aware that you're ready to wash your hands of him? What about your children? Can they tell them how they feel?
My heart goes out to you. :cuddle;
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Don't hate me.....but maybe he is just finished with all of it and want to be 'done'. He sounds like my husband who isn't even ready for dialysis but has already told me he doesn't want it and he doesn't want a transplant. I offered one of my kidneys and if I were a match he could go straight to the transplant and skip the dialysis and again, he said no. He feels the quality of his life sucks and why prolong the quantity if there is no quality.
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John has agreed to go on Friday, but he said only for my sake! I think we both know it will be a waste of time, but at least it will keep him in the system. I will write again after Friday. I have taken a photo of his 2 hernia's without the stoma bag on to show the doctor, because nine times out of ten the surgeon does not have time to examine him.
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So glad he has agreed to go Yvonne.I will watch for your post on Friday.Love.
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Good on you for having some time with your family. Yes, it is his decision - but it sounds to me like he is making it from an uninformed position. It is a perfectly OK decision to make and would be very hard for you to accept, but I really hope he looks at all the options first. I'm likely to be on dialysis the rest of my life and I'm only 46. So I have to come to terms with that don't I? I know I always have the option to stop if I want, but I would make sure I knew what that meant for me before I did it. Thinking of you as always.
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Off we went to the hospital on Friday, only sat there for 1/2 hour before we were called in to see John's surgeons registrar. I was a bit upset by this as thought we might see his surgeon, But after the lady registrar read John's note and the examined him (left John in another room and came and spoke to me) she decided to call in his surgeon for another oppinion. He examined John and said how well he looked and asked him how he was feeling. John as usuale boasted how well he was, I then had to point out how he has to go to bed every time he has this pain in the tummy and the fact that he will not go out anywhere because he is always so tied, and the trouble we have with the bag as John's skin is so sore around the stoma.
He sat us both down turned on his computer and then showed us the results of John's CT scan, John did not want to look but I was very interested. He showed me all the intestine sticking out through the Hernia he said he must have a word with the other surgeon that helped with John's hernia 9 months ago and see if they can re site the stoma just above the old one, put a mesh on the hernias (he now has 3). The hernia is the reason the bags will not stay on John and doing this operation will give him back a better quality of life.
John and I have not spoken about this since coming home and don't suppose we will until he receives a letter telling him when he has to go in, so it's just another waiting game.
I must add the registrar and the surgeon were excellent with us yesterday, came away feeling very satisfied with how they sat us down and had time to explain everything.
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:thumbup; That sounds good Yvonne. I hope the surgery gets scheduled soon.
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I hope so too Yvonne. John has been thru enough, and so have you. A better quality of life would be great for both of you. :pray;
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:grouphug;
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Can anyone advise. John has had blood in his bag and thick mucus stuff for the past week. He says he is feeling fine, but got the cramp and itching back. On the last check up at the renal clinic his creatinine was 435.
John as normale just wants to leave it until next check up in December !!!!!
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Doesn't sound good to me. What does the specialist say?
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It's John's 74th birthday today. He is always thinking something bad is going to happen and he won't reach the next birthday but here we are, but not fit and well, think he has a urine infection but won't go to the doctors. He knows best.
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Yvonne, Its a man thing again, you could cheerfully strangle them. Some times I think sod him let him get on with it, they make you so angry. :Kit n Stik;