Me the wife

[Yvonne]

  Hi Ive decided to introduce myself as I'm always on this site as carer to my husband John who is 74 and has been ill for the past 3 years.
  I'm 68 in August and have been married to John now for 13 years. John has 4 grown up children and I have 3 children and 5 grand children. We live in the UK and moved to West Sussex just before John got ill.
I joined This site as I thought John might join in and look at some of the threads and even ask questions, I thought it might help him.  He knows I use the site but he will not go on it, just buries his head in the sand, I wish I could do that! I am the one who tries to control his diet, reminds him to do the EPO takes him to hospital and lays in bed wondering IF !
He has been through so much over this 3 years and I do often put myself in his position, but he is so grumpy with me and who ever visits us, even the family try to keep away and I miss them all so much. John won't go anywhere and I can't leave him for more that a day as I would love to go away for just a few days, even when I go out for a couple of hours , I phone him up to make sure he is alright and he keeps asking when will I be home. My sister came last week with her husband to stay for 4 days, he made her life hell while she was here, we asked him to come with us when we went out but he would not come.
I have got to the stage when I feel like walking out, I can't remember if I still love him, I do feel sorry for him. He says he loves me but I have a job to say it back.
I joined this site to find out more about dialysis to help John but find myself on this site every morning at about 7am while he is still in bed WHY!  Is it to waist time while I'm waiting for him to wake up to start another day of carering?
                Is it to try to find answers to help him?
                Is it to rant and rave because I can't cope?
I wish I could find a Friend that lives near me in the same position, to exchange stories of how we feel.
I don't know wether to post this or delete it, I am so muddled up, Yvonne

[okarol]

Hi Yvonne,
I think you have described the feelings of many caregivers. I can identify with you, and it's a frustrating, lonely life. Sometimes it is difficult for the patient to really see how their loved ones feel because they are struggling to cope themselves. I really sympathize with you because it sounds like you need a break, and soon! I hope you will find a way to take time for yourself and do something enjoyable. Keep posting and let us love you! Here's a big HUG! 

[willieandwinnie]

  Yvonne. I'm right there with you. I told my children that I lead a very lonely life. I do sneak out to do things for myself but it's only for a couple of hours. I have been dealing with this for over 8 years now and I don't understand how Len can be mean and grumpy to me but I always remind myself that they lash out at the ones they love. Yvonne, you keep posting your thoughts and all of us here will embrace you. Wish I could do this  in person. Kathy

[Romona]

  There are many angels on earth. You are one of them. Taking care of patients like us is an unpaid full time job. Thank you for caring so much.

[peleroja]

Welcome to the group, Yvonne.  I hope you find answers to all your questions.

[Hanify]

Know we are all thinking of you.  I think it's a timely reminder to those of us who are the kidney patient that it's not just us that are affected.  The only thing I would suggest is to stay away from negative threads if you can.  I think the more you focus on the negative, the more negative you will feel.  I do feel for you.

[silverhead]

Yvonne, you touched my heart, I am a caregiver also, but I am so fortunate that my Wife does her very best to understand and help me along this rocky road called ESRD. It does get depressing at times, I have given up most of the things that once held my interest, like hunting, fishing and attending auto races. Problem is that she enjoyed these also and although she would maybe encourage me to do so, I know that she would get really down if I did so and she could no longer participate, so I think it's best to put them aside and keep her on an even keel.
Not being familiar with your medical system over there, is there the possibility of seeing a professional counselor who can intervene in some way to help John's mental attitude?
It's fantastic that you do as much as you do under the circumstances, But you have an obligation to yourself also. Plan some things to do, go to the library and read a good book, or enjoy a meal out by yourself, take a walk and enjoy others efforts in their gardens, go birdwatching, anything that gives you pleasure even for short moments can help. I certainly wish you the best, and you do have friends here that care a lot.........
Tom

[Joe Paul]

Welcome Yvonne, good to have you aboard.

[kristina]

Dear Yvonne,
I am so sorry and wish I would know what to say. I was wondering whether you have contacted the "Different Strokes"?
Perhaps they can assist with some ideas? I mention this because they write about the huge trauma a stroke causes,
not only to the sufferer but also to their families. It is like an earth-quake putting the person upside down,
and it can take many years to recover from the shock and from the physical devastation a stroke often causes.
Many stroke-victims become withdrawn and it may take many years for them to recover and become themselves again.
I am so sorry and wish you all the best, Kristina.

[dwcrawford]

Yvonne, I don’t want to talk about you.  I want to talk about John.  What you need has already been expressed except maybe a nice massage could be added.

I’m older than you by a year and a month.  I am alone and have no caregiver (at least no one obligated to care for me).  John is a little older yet and had to give up most if not all of what he wanted in life.  It is sad.  It is depressing. It is lonely.  Yes, it is even painful from time to time.  (not that you don’t experience the same thing, but as I said, I want to talk about John).

Usually when I post on IHD, the Pollyanna’s, or the know-it-alls, or the perfect people will come down on me.  Basically, I usually avoid posting except on the very frivolous and often funny threads.  But I think you are in a really bad situation with only one way out.  John needs therapy.  John needs THERAPY.  Oops, I screamed.

When I was first diagnosed last November, I was ready to end it all.  I had told my doctors and a couple of my best friends.  I was on the computer looking for an answer to the question “does refusal of dialysis equate to suicide”.  I didn’t find a definitive answer but I did find this website.   I met a couple of very strong people here living a productive life on dialysis.  With their help, the help of a few bottles of Prozac and a very good therapist, the help of three of the best medical professional one could ever hope to have (including my Nephrologist and his father and my Internist) and the help of three of the best friends that one could ever hope to deserve, I did turn my thinking around.

What is positive about John’s life?  That is what he needs to find.  We can all moan and groan but it does absolutely no good for him, you and anyone else in his life.  For the most part now when friends ask me how dialysis was that day, I will tell some funny story of something that went on.  Oh, occasionally I break down and moan, but try to not let it last long.

The most positive thing that I realized today is that due to exercising my left arm for the fistala, my lime squeezing hand is much stronger and I can make a cocktail easier and faster.  It doesn’t take a lot to get me excited.  Someday I’ll make a list of all the things I’ve learned in this process.

But Yvonne, get John some emotional help.  Try anybody.  Religious counselor, family counseling, or better still, if you can afford it, a professional…Don’t let it bring you both down before you do. 

Dan

[rose1999]

Dan you are quite right but here in the UK we don't have the same acceptance of counselors as in the USA.  We all insist that we don't need them, that we can manage , we aren't 'mad' - you've heard of the British Stiff Upper Lip maybe?  I am in much the same position as Yvonne but I care for my Mum & Dad, Dad being the one with kidney failure.  Just as you've said, we try to remember that life is very hard for Dad, at 80 he has had to give up a lifetime of being the head of the household. living an active life and looking after us to being cared for and frankly useless.  It must be depressing - no, it IS depressing, but mention counselor, psychiatrist or similar and he'd throw a fit.  I do wish we over here had your attitude as I truly believe that we don't talk enough and need to talk more.  Both Yvonne and John would likely benefit from someone to talk to and your suggestion of someone from the Church is an excellent suggestion, that way John would not see it as a professional 'interfering'.  Counselling would be free under the NHS, its not the cost that puts UK people off but for some reason it has a stigma here - wrongly in my humble opinion.

Yvonne is there any sort of day centre nearby that both of you could go to?  Maybe meet others in the same situation. A lunch club perhaps?  Try the WRVS and see if they have anything nearby, they run a 'Primrose Club' here , meeting once a month, men and women over 60, sick, well, able bodied, disabled, they have a speaker or a film show or a game of bingo, then a tea and a bring and buy stall.  It takes a bit of courage to go at first but many people have been going for years and enjoy it and it's something you could both go to.

But if you can get him to open his mind to counseling I think Dan's suggestion hits the nail on the head.
Just my

Remember we are always here to listen to you.

[dwcrawford]

I was trying to say that the answer lies with John and not Yvonne.  It looks as if she's done more than she can already.  Oh, people frown over here to, but sometimes it is the only answer. As you said, it doesn't have to be a psychologist.  He needs to vent and he needs to hear.  Believe me, I am speaking from experience.

[cariad]

Yvonne, I am so sorry to hear this. I hope it helps you to hear from other caregivers who can relate to your feelings and assure you that they are normal and understandable.

I completely agree with Dan. In fact, I would do him one better and suggest both of you get therapy as soon as you possibly can. You have this wonderful resource at your disposal in the NHS, why not use it to your maximum benefit? In the US, therapy is truly a luxury for most people. Assuming one has insurance, most policies still require a co-pay and limit sessions per year to a uselessly low number.

I know for a fact that not everyone in Britian is turned off by therapy. Both my husband and his brother swear by it, and neither one of them could be considered mad or incapable in any way. In both of their cases, I would say it was simply a desire for self-improvement and objective feedback that brought them to therapy. One of my husband's british friends used to consider it polite chit chat to tell us all about his latest session.Therapists themselves usually go to counselling of their own, because it is just the smart thing to do. Why suffer if there is something out there that might help?

You sound very much to me like you are at the point where if something does not change, you will eventually leave. The way John is treating you is totally unfair to you, and it should not be allowed to continue in my opinion. I think John needs to hear that if he wants to live, and he wants to live with you, he needs to find a way to cope with this, and take more of an active role in managing his illness. In the end, he has to want this, or there is no way forward.

I have been the angry patient who drives everyone around her away. It is a miserable way to exist. Your position in this relationship sounds equally unhappy. I hope you can find an answer that works for both of you. Good luck!

[cariad]

When I was first diagnosed last November, I was ready to end it all.  I had told my doctors and a couple of my best friends.  I was on the computer looking for an answer to the question “does refusal of dialysis equate to suicide”.  I didn’t find a definitive answer

Hey, Dan, I just wanted to address this statement. I volunteered at a sucide prevention crisis line in LA when I lived there, and these are the types of questions we were asked all the time. According to most suicidologists, refusal of dialysis would be considered "Indirect Self-Destructive Behavior" and would indeed be on the "suicide continuum".

I am glad you chose dialysis over the alternative! I have certainly had the "better-off-dead" thoughts, too, but I am happy I decided to give treatment a go.

[Jean]

Gosh, Yvonne, my heart just breaks for you. Please take Dan's advice and get some help. Dont let John drive you into leaving. I was also a caregiver and I do understand how horrible it can get to be when the person you are caring for treats you like that. Try to remember, it's not really him.

[Yvonne]

IF   I suggested to John we need to talk to a therapist he would go mad. If even knew I had wrote any of these letters I have wrote on this board he would go mad. He is an atheist so the church is out. John is a ME ME person, never listens to anyone, he is one of these people that has been there done that and got the tea shirt. I can remember when we first got together about 14 years ago he proud of the fact that he had this hernia that he could push back, would not go to the Dr. until it became an emergency, they discovered he only had one kidney, every one was told about that until someone told him it was quite normal, and then 6 or 7 years ago when he was diagnosed with prostrate cancer they then told him he had a horse shoe kidney, well that was even more for him to talk about to his friends and family. Now after 3 life saving operations he tells every one each time he had been told another 4 days and you would not be here. He seems to be quite proud of the fact that each time he has nearly died. (one kidney removed, blader removed and prostrate all with stage 4 cancer)
 Don't get me wrong I so pleased he came through all these operations, but he has driven away friends and family by all these morbid stories.  I must love him as I change his Urostomy bag every day he will not even try to do it, I order the suplies and medication, I've turned into his  nurse and no longer a wife.
I have joined the carers group they run down here but they only meet once a month, and just talk about where they have been and where they are going so I'm not sure what it''s all about.
Thanks every one for your replies, I don't know what I want to hear but it does help me by writing it all down, while waiting for John to wake up so I can take him in his morning cup of tea and then run his bath and start off another day. Yvonne

[rose1999]

Oh Yvonne I do so empathise with you.  Of course I have the utmost sympathy for John as I know from my husband Barry's prostate cancer and my Dad's kidney failure and all his other issues just how awful their lives can be, they feel hopeless and useless and sometimes 'boasting' about their illness is the only thing they have that makes them feel important.  But that doesn't lessen the strain on you.  Truthfully I don't think there is a solution, I too feel as if I'm just biding my time until it is 'all over' and I know what that means.  In the meantime life is passing me by, but I know if the situation was reversed they would do the same for me and I try to cling to that.

When Barry died, as well as overwhelming grief there was an underlying feeling of relief that it was all over.  Now we are going through the mill with Dad and whilst I know it is 1000 times worse for him to be in pain and suffering it also rules (and ruins) our lives too.  We (Mum & I) can never plan anything, never go anywhere - not even a day out, yes we do have each other but that only really means that Mum leans on me, I take on more than I can manage sometimes because I don't want her to be under more stress.

I expected that John will not talk to anyone, that's the way many men (particularly of his generation) are - they see it as a sign of weakness.  I wish there were people for you to talk to, all I can say is come here often, pour out those feelings, you can see from the replies that they are normal - although no doubt like me you feel guilty for even thinking them, never mind writing them down. 

Really we all just want the 'good old days' back, when they were well and we could all enjoy our lives and I think our feelings are probably grief for that loss.

I wish I could be of more practical help.
Rose

[monrein]

Yvonne, I agree with Rose that I wish there were someone for YOU to talk to.  I am the patient in our family (although I refuse to actually play the part most of the time) and I truly believe that things are tougher for our caregivers.  In addition to all the stress of caregiving there's also the "guilt" that comes from wishing that one were out of the situation all together.  Patients wish that too but everyone understands that, while caregivers get stuck with the thought they're uncaring or heartless if they wish for an out.  I can honestly say (not with pride but rather with gratitude and humility) that I'm not sure I'd have stuck around if the roles in my family were reversed.  You deserve a life beyond your "job" as a nurse.  Would you consider finding a counselor to talk to about how you're feeling and to help brainstorm possible ideas for you to get some relief?? 

We all care about you and I feel very saddened by all that John's illness has taken from you.  I send big hugs and the wish that you can manage to get a bit of a break somehow.

[Hanify]

Unfortunately, as someone has already stated, this is John's problem - not yours.  I can only suggest that you sit him down and tell him how you're feeling.  He won't like it I'm sure, but the alternative is you leaving him, and where would he be then?  I think you should start some demands!  Tough bickky if he doesn't want to see a counselor - maybe he'll just have to.  You cannot go on like this, and he must realise how much harder life would be without your fantastic support.  Maybe he needs a kick...