Feel like giving up

[Yvonne]

I just know there are times when John feels like giving up, then he looks at TV last night at the Pugsie Bear children in need program on British TV and realizes as he said how lucky he is as he has only been ill for the last 2 years.
What we are so frustrated about is 4 weeks ago John was rushed into hospital again as he was sicking up blood all night, he was taken into our local hospital although I told them he was under the Renal hospital, taken in at 10 o clock in morning and was transfered that night at 9. 30. to the Renal Hospital. He was only kept in for 4 days and they gave no reason for the blood issue. Just said all his renal levels were high and must drink lots of water. The doctor from the Renal unit rang him at home and said they needed more blood samples please go to your local doctor for this and make sure they send coppies to them. Well after 4 days we rang the local doctors and said they had lost the notes. The doctor from the hospital rang again and asked John if he had had the blood tests done, he said yes but they were lost, doctor said he would ring back, he never did.  After 4 weeks we are still waiting and have given up. John has another appointment at the Renal Clinic on the 28th Nov so we are just going to wait for that. John gets very tired and spends a lot of the time sleeping doesn't feel like going out as he is short of breath, it seems as soon as he gets back on his feet something more happens that knocks him off again. Sorry for the rant. Yvonne (the wife) 

[Bajanne]

Wow!  He has really been given some challenges.  By the way, this is just the place to rant.  Here is where we understand EXACTLY what you are going through.  Feel free to rant as you wish.  I can only send my caring thoughts and prayers your way and hope that he gets relief.  Please know that you have an entire international family extending best wishes to you both. 

[2_DallasCowboys]

I am so sorry to read that your John is going thru so much - and I know
you are, also, being a caregiver myself.  I also know how frustrating it can
be at times dealing with the medical system.  You really can feel like screaming
your lungs out.  I have found that the firmer you are when dealing with different
drs, etc (sometimes to the fact of being a real b---h!) the better.
I am keeping you both in thought and prayer

Anne

[willieandwinnie]

Yvonne,  You and John are in my thoughts and prayers. I am usually pretty nice the first time I deal with doctors or nurses but after that I am truly a bitch. When it comes to my husbands health and well being, nothing stands in my way. We have a doctor at Washington Hospital Center that I followed into the men's room because he wouldn't stop long enough to answer my question. He has never avoided me since. I hope you can get your answers. The 28th seems like a long wait, can you get the appointment moved up any? Please keep us posted and  away. Give John our love. 

[petey]

When it comes to my husbands health and well being, nothing stands in my way. We have a doctor at Washington Hospital Center that I followed into the men's room because he wouldn't stop long enough to answer my question. He has never avoided me since.

willieandwinnie -- you are a woman after my own heart!  Yvonne -- my thoughts and prayers are with you and John.   

[The Wife]

He was "sicking up blood all night" and this is how the doctors are handling it?  Oh boy.  I think I'd be doing what WW did.  Are you sure you should wait until the 28th?  That's quite a ways a way still.  My heart goes out to you and I hope the problem is discovered soon. 


Way to go WW!  Following the doc into the bathroom.  Love it!

[Ang]

yvonne  sorry  to  hear  johns  having  a  rough  time  of  late.


the  thing  that  you  must  do  is  to  become  a  pain  in  the   ass 

when  it  comes  to  dealing with  the  medical  profession


keep  on  their  backs  and  make  sure  things  are  being  done.

wait  a  week  max  ,if  you've  not  heard  anything  become  their  worst  nightmare

the  only  person  who'll  look  after  john  100%  of the  time  is  you

good  luck  with  it  all.

[Sluff]

Keep on keeping on the good fight John..

[Mizar]

Yvonne, I am the " Wife " also. I wish I had Arms long enough to reach across the " Pond " and give you a Big Hug, Today!

[jessup]

Don't give up mate
You are a brilliant carer
I know sometimes you think WTF but us carers have just gotta keep helping our loved ones, support them and keep fighting the fight with them
because they are our loved ones.



Hope all goes well
Love and wishes to you both


 

[pelagia]

Maybe you could keep a journal with notes about what is happening.  I think it helps to write down the names of the people who are involved.  Then you have a record about what was done and who should have been responsible.  Asking to speak with the folks at the next level up - the bosses - sometimes help.  It all sounds very, very frustrating.  Sorry! 

[rose1999]

Hi Yvonne, sorry you're having such a hard time, I've had a really hard time with Dad in the QE for 5 weeks (he's home now).  In the end I contacted the PALS manager and they got things moving.......I won't bore you but it was a nightmare and we were getting no answers etc ............ anyway once she got involved suddenly we could see the Doctor etc etc.......so I suggest you see the PALS (Patient Advisory and Liaison Service) manager at your hospital and get them to get things moving for you.

Look after yourself, it's wearing being a carer.

Love to both of you
Rose 

[Yvonne]

I really do thank you all for your replies, hugs and love. But that is what I did in 2007 when John first became ill I kept on and on to the doctors at the QA and in the end they decided to do John's big major operation, he came through it but I just know I can read his mind he sometimes wishes he had never agreed to it. The trouble is now as he is just on maintenance with the renal department we have to go through our local doctor for any other illness with him (Storma, hernia, cough, out of breath, medication) and they will not let me talk to them about John he has to be on the other end of the phone, they will not even let me know his results.  I've had a real shouting match with them but they will still not talk to me. John will not bother, he thinks as long as I am here everything will be alright. Even when the ambulance arrived for him there I am pleading with him to go, makes me feel so guilty. But then he is the only one who knows he will lay around the hospital for hours until he sees a doctor. I think because he has given up and is just going to except a life of just staying in the house not going out to visit, expects everyone to visit him, I feel sometimes well just let him get on with it.  We have been invited to go to the kids for Christmas but he won't agree to come, says for me to go on my own but I can't leave him on his own, not for Christmas (it's about 2 hours away) I do get frustrated but it must be even worst for him. Thanks every one once again. Yvonne

[jessup]

Dear Yvonne and John
 
How are you both?
Have been thinking of you often

 

[monrein]

   Yvonne and John

[pelagia]

  keeping you in my thoughts and prayers

[jbeany]

Yvonne, has John given you power of attorney rights?  (Is that the term I'm looking for?)  Then you, personally, would have the right to demand the accountability for his care that he needs, and they would have to talk to you, privacy rules notwithstanding.

It's so hard to stand up to the docs when you are ill - you need that team effort to make it work.

 

[Yvonne]

I think if I ask John for the power of attorney rights, then he would think he had not got long to live. The doctors will not even let me have his blood test results over the phone, even when he has been too ill to come to the phone,  I say to John will you talk to the doctor and he says NO I can't be bothered if they can't give them to you just don't lets bother. I have had so many consultations over the phone and even wrote letters to the complants department. We can't even change out doctor as we live so far out in the country and we only have this one practice. John is well again at this moment in time, but not well enough to go out he says!!!!!

[willieandwinnie]

Yvonne, you and John should both have Advance Directives, Power of Attorney's an Living Wills.They are not that expensive to have drawn up and I have used them many times. I hope John continues to feel well and he needs to go outside and get some fresh air even for only a few minutes. Keep us updated. 

[rose1999]

Yvonne, will your Dr accept a letter from John saying he is happy for them to share any results etc with you?  We have done that with a few companies (such as the Water Board) because they refused to talk to Mum about bills while dad was in hospital!  Some firms in the UK use the Data Protection Act as a smokescreen and pretend it stops them giving out all sorts of info - I realise it would apply to medical records but if you apply for Attendance Allowance for example John would sign there to say he is happy for them to get information from his Dr so why can't he sign something similar for you?  Just a thought to try to help.  Take care of yourself. Rose

[Yvonne]

Hi it's well over a month since I posted, Thank you all once again for your letters of comfort. I've been feeling real sorry for myself as John gets in terrible moods and we seem to be arguing a lot. I'm up at 6.30 each morning can't do a lot so I go on the laptop and come to this site.  It's not until I start reading some of the post, I realize how lucky John is now, not to be as ill as some of the people on this site. He has had his share in 2007-8 but he can't seem to accept how lucky he is. The thing that gets us both down is trying to come to terms with the urostomy. He used to have a size 34 waist but now what with the stoma bag and the hernia his waist size is 42!!!!  So none of his clothes fit I bought a pair of 42 trousers but John is short and the legs are very baggy, so he lives in track suits. I think this is at the bottom of why he won't go anywhere he thinks he looks scruffy as he was always a collar and tie man before all this happened.
We had another bad night John woke me at 3 in the morning to say the bed was wet. His stoma bag had clogged and not drain into the over night bag so the stoma burst.  The whole bed had to be changed, washed John down, put on a new bag, made the bed and then tried to get back to sleep    This has happened many times before so another reason why we don't like to sleep over at anyones place in case it was to happen there. I always keep plastic sheet on Johns side of the bed but when this happens it always seems to soak the mattress as well.
I would like to wish every one a lovely Christmas and a happy new year.
 

[monrein]

Yvonne, I'm so sorry to hear about how difficult things continue to be for John and therefore for you.  It can feel so bloody unrelenting.  I wish you both a happy (and most importantly, an uneventful) Christmas and all the best for 2009.
By the way, who is that adorable little one snuggling up to you in your new avatar photo?  A grandchild I'm assuming?   

[kitkatz]

Oh Lordy do I know about wet beds from bags leaking. It would get the entire bed!  It is not fun to have to get up and change the bed at 2a.m. But these things happen.  It is life with a urinary diversion.  Tell John someone knows how he feels.  He will find clothes that fit eventually. Keep looking. Check for his size and length on the pants. 

I wish you all happy holidays.

[rose1999]

Hi Yvonne
Since they've put Dad's tunnelled line in his leg we've had problems with trousers too but I found the folowing company

www.clothingsolutions.org.uk

they will alter existing clothing or make something to fit.  They are really helpful ladies, Carla and Sandra, if you get in touch I'm sure they will either alter or make something for John.

Wishing you a peaceful Christmas
Rose

[Yvonne]

The little one sitting next to John and I is my youngest Grandaughter Tia she is 9 and John and I bought her up from 4 months old as my daughter wanted to stay with her job
(she was 40 when Tia was born) we had her till she was 6 year old then my other daughter Alison took over as she had 2 children going to the same school. We would not of missed those years for nothing John and I are second time rounders and we had not been married long so Tia was like having our own baby but was given back at 6 o clock every night.

Thanks Rose I will try that site for John, ( I have read your posts about your Dad I do hope he is now on the mend I wish him well) What is a tunnelled line Rose?

I can't believe some of these posts of how many hospital and doctors make misstakes, I wish some of the staff or doctors would log into this site and read just to see what is going on.
I know from John's case the surgeon was so pleased with how John had come through and a year latter when John was in hospital again the same surgeon could not believe he has had no appointments to see the cancer or the urostomy nurses and doctors.  He said he would look into it but that was 6 month ago. The only thing that John is under the hospital is just to keep doing his blood In case he needs dialysis. So even the slightest thing wrong with John he thinks the cancer has come back, we were told this ages ago he would always feel like that even if he had a pain in his big toe.
Happy Christmas every one Yvonne and John (although I can never get him to come to this site)