Yet ANOTHER fall, and in hospital and poorly

[WIFE]

Poor Scarlett and John - why oh why is it all so very difficult. I went to my Surgery yesterday afternoon to see the Practice Nurse only to be told that she visits my husband once a month to check him for malnutrition. Do I know about this visit - no!
Is it worth making a fuss when I visit the NH this morning - probably not. I do feel for you both - especially as it is so hard for our men to indicate they are in pain and we, as their nearest notice these things during our visits.

Hope the room move is successful and doesn't cause too much distress.

 

[Izzy]

As if things aren't difficult enough without all of this. I'm sorry you're facing these added problems. Wishing you both a peaceful day.

 

[Rathbone]

If I bang my head against a brick wall - the only head I will hurt is my own. They are having such trouble getting John up in the morning, that they must use a hoist. His room is round the corner of a corridor and the hoist doesn't reach its destination smoothly, so they are changing John's room again.

They noticed that if they touched his right knee (where he has a knee replacement), he winced so the GP was called, who prescribed painkillers. Now, do you remember I was asked to blow into a tube, in place of John, at his IPF appointment?

And after pointing out the futility of this, I made many phone calls before I was told some sort of peripatetic person would visit John, and I specifically asked if I could be told when, so that I could be present. This was agreed.

Wrong! Fancy me expecting that an assurance would ensure I'd be told. No, a Health Visitor person came, when I wasn't there, asked John several questions about his chest, to which he didn't give any answers, and then said she'd be writing a report.

So tomorrow I will visit the surgery and attempt to speak to the Practice Manager. Half of me knows I might just as well talk Flowerpot Men language, and say "Blobalobalobalob", and the answer I'll get is "Weee-eed".

This is all such unnecessary stress. They have my landline and mobile numbers.

Like you have said a number of times before Scarlett, you couldn't make it up! X Love Shelagh

 

[Scarlett123]

I phoned a lot of people today ........

Firstly I phoned the Practice Manager and reminded her of the promise that I'd be informed if they arrange for anyone to visit John. "I did tell them" she said. And then told me to call .....

Integrated Care Department. I spoke, at length, to a lady, who then said that I needed to speak to the ........

Integrated Care Matron. This lady said nothing about John's chest, apart from listening to it, but informed me she'd carried out a Memory Test. Ha ha ha!!!!! Guess what? He scored nothing. Zilch. Zero. Nada (I sound like that bit in Love Actually when "Colin" says he's going to the USA). I guessed that, I replied.

Then she said, she'd observed his lack of mobility. Erm we know that. She's arranging for Occupational Health to visit, so that the staff can be trained how to transfer John from chair to wheelchair.

But what about his chest, I asked. Oh, would you like the Community Respiratory Team to visit, she suggested. YES!

I wept when I saw John's new room. But I've been assured that his new hospital bed, plus all the current modern furniture will be transferred tomorrow, when he'll sleep there.

 

[jan.s]

Oh Scarlett, things don't get any easier for you. Why is everything being done the wrong way round? I'm sure you'd like to know too.

My heart goes out to you and John. Jan xx

 

[WIFE]

Scarlett - I pray for some peace and tranquillity for you and John - why is it so very hard to achieve this.

Thinking of you both with love WIFE

 

[Izzy]

Scarlett adding my own best wishes to the others. It's so wrong that you should have to be fighting like this instead of concentrating on John. Wishing you continued strength. x

 

[LadyA]

Scarlett adding my own best wishes to the others. It's so wrong that you should have to be fighting like this instead of concentrating on John. Wishing you continued strength. x

Echoing that - and thinking that, if you can find a little more energy (or fury), a letter along that line to your MP, or media might not go amiss. I hated having to go through politicians to try and finally shake William's funding loose, but in the end, I had to. It meant it was released at least four weeks earlier than I had been told it would.

 

[Scarlett123]

Thank you, as ever, for your kind wishes. Everything is a battle that you could do without, isn't it. Fortunately, I know how to string a sentence together, and am as obstinate as hell at getting the things I feel John needs. But what about those without anybody to fight their corner, or someone who gets tongue-tied speaking to "the authorities"?

It's John's birthday on Christmas Day, and though the staff have said it's up to me, they've added that perhaps it's better if I don't have lunch with him, as I'd planned to do before the UTIs - but I've decided I will go.

Prior to the UTIs, he could talk gibberish, but it was understandable gibberish, and he could walk and feed himself. Those skills have gone. But it's the same sort of feeling as when I hear about a funeral of someone distant.

Do you go? Don't you go? And I always go, because I don't want to experience regret afterwards that I didn't. I may have many more Christmases with John, or I may not, but I don't want to regret anything. So I'll go and I'll feed him his lunch, and wear a paper hat, and nail a smile on my face throughout.

Taking Billy for a walk now and then off to the Home.

 

[truth24]

Dear Scarlett. My heart bleeds for you. You are having to deal with so much for your beloved John. As you say, what happens to those poor souls who perhaps don't have the confidence to fight for their loved ones? Who is there for them. Forgive my ignorance but why do the OT team have to go into the CH to show them how to use the hoists. From my experience all the carers in Fred's home seem very competent and trained to use them and I'm sure it's the same with John's. Sending you what virtual strength I have to help you in your battles. Verityxx
Sent from my GT-N5110

 

[Chuggalug]

Hello to you Chuggalug. Dawn was beautiful here too this morning. And what do "they" say if you dare to even raise your voice? "We do not accept aggressive behaviour" !! I'm sleepless too over the incompetence and lack of intelligence of people we are simply forced to deal with. X Have a good day.

I haven't had that actually said, yet, Rathbone, but BOY, did I let 'em have it earlier this year, (or was it even last year?) I just got sick and tired of all the excuses, fob-offs, lies, threats and other crass and dangerous mistakes I've had to put up with over the last five years. Makes me glad that I'm in charge, now.

Just reading through again and saw your message. Much love to you; Scarlett; LYN T and everybody else here.

 

[Chuggalug]

John was much the same today, eyes closed for most of the time, and not focussing when opened. I'm told he does eat a bit, but he looks so thin and wasted, and I'm finding it difficult to witness this.

"When life gets tough, you find out who your real friends are ......." - a saying that I'm sure many of us carers have recalled during our caring careers. One of my local friends, Linda, who I meet for lunch every month, can never wait to tell me of all the things she has planned, or has recently enjoyed, such as holidays, dances, outings, meals etc, and I just nail my rictus smile on my face and listen and nod.

She knows all about John, but never phones to enquire. Then today, I was having lunch in a pub with Sally, another friend, when Linda walked in. She saw us both, turned round and walked out. Sally and I waited for her to return, but she didn't and Sally, who attends Zumba classes with Linda, said that Linda always asks her about John, adding "I'll give Scarlett a ring tomorrow".

Sally reckons she feels guilty that she hasn't phoned, and has taken the ostrich approach by leaving, but am I wrong to feel hurt, when she met my eyes, and then left? Is John's illness something I should feel ashamed about?

All I know is that it made me feel so sad inside.

I don't know if I even dare answer this one, Scarlett, since you call these people your friends. Those who knew my hubby stopped calling and visiting altogether, plus three others who you wouldn't imagine, because of their beliefs, that they would just abandon people in trouble. But that's exactly what happened. If that's how they want to play it, I won't beg for their return. I don't need that to cope with and worry over as well as everything else.

I hope you do have someone to call friend, and that they mean it, and support you properly. Not just with platitudes, which is all I ever get, but true, loving, caring friendship.

My love to you.

 

[Chuggalug]

If I bang my head against a brick wall - the only head I will hurt is my own. They are having such trouble getting John up in the morning, that they must use a hoist. His room is round the corner of a corridor and the hoist doesn't reach its destination smoothly, so they are changing John's room again.

They noticed that if they touched his right knee (where he has a knee replacement), he winced so the GP was called, who prescribed painkillers. Now, do you remember I was asked to blow into a tube, in place of John, at his IPF appointment?

And after pointing out the futility of this, I made many phone calls before I was told some sort of peripatetic person would visit John, and I specifically asked if I could be told when, so that I could be present. This was agreed.

Wrong! Fancy me expecting that an assurance would ensure I'd be told. No, a Health Visitor person came, when I wasn't there, asked John several questions about his chest, to which he didn't give any answers, and then said she'd be writing a report.

So tomorrow I will visit the surgery and attempt to speak to the Practice Manager. Half of me knows I might just as well talk Flowerpot Men language, and say "Blobalobalobalob", and the answer I'll get is "Weee-eed".

This is all such unnecessary stress. They have my landline and mobile numbers.

Long as your surgery don't keep calling you to find out if your husband smokes, because they have to update their files, like I get, every single year. I wanted to throw my fist down the phone the other day, as, only an hour before, when I as actually there in person, I was asking about end of life questions.

Some people, aye? Love and strength to you, Scarlett. You know what? "Blobalobalobalob" might not be such a bad idea! xx

 

[Scarlett123]

I should assume they want to send someone in to show the staff how to use a hoist, which they do perfectly well anyway, so that they can tick several boxes, something like:

1. Does the client move about independently? Yes/No

2. If the answer is no, do the staff assist the client to move? Yes/No

3. Have the staff been previously shown by a member of this OT team how to move the client? Yes/No

4. If the answer is no, have you now shown the staff how to move the client? Yes/No

5. If the answer is yes, did the staff move the client to your satisfaction? Yes/No

Wow! Now that's 5 boxes that can be ticked, analysed, discussed, meetings arrange to arrange meetings etc. Because that is what is required I expect. And I suppose the OT team will be able to report that they have shown the Care Home Staff how to correctly move this client. The fact that they have been doing it, doesn't matter!

When I visited John today, he was confined to bed, because he keeps falling asleep in the chair, and falling forward, and they have to push him back, disturbing him, so the Manager felt he needed to rest in bed, undisturbed.

Lunch is now pureed, as the chewing takes so long, and he is not getting sufficient nourishment, before he gives up, exhausted. I've just returned, and I'm going back in a couple of hours.

 

[LYN T]

Oh Scarlett-I'm so sorry that John hasn't improved. Please pace yourself. You will get exhausted.

As always I'm thinking of you and John

Love

Lyn T XXX

 

[Scarlett123]

Oh Scarlett-I'm so sorry that John hasn't improved. Please pace yourself. You will get exhausted.

As always I'm thinking of you and John

Love

Lyn T XXX

Pot? Kettle? Yes, I know what you mean Lyn, and thank you for your concern. He's been in bed all day, as he's not eating much of the pureed food either. Poor man, he bears so little resemblance to the Old John.

My Dad went into the garden to check on his roses when he was 70. He had a massive heart attack and literally dropped dead. It was a huge shock for everyone, but having experienced that, and The Long Goodbye, the first is so much better than the latter.

 

[Spamar]

Absolutely Scarlett, my mother walked up the road to post a letter and had a massive stroke. Fortunately, one of her sisters was with her.
I must say I felt very unsettled when I was around the same age, as if it might happen to me. Weird feeling!

 

[truth24]

A sudden passing is terrible for those left behind but I wouldn't wish this horrible lingering illness on my worst enemy.

Sent from my GT-N5110

 

[hokeycokey]

Scarlett hugs to you x

 

[truth24]

Dear Scarlett. Hope you have a peaceul day. Verityxx

Sent from my GT-N5110