The Vault Regulars

Wednesday, April 18, 2018

Not what we expected or needed this year.

Because of the lack of blog posts here recently and the relatively few visit and comments to other blogs you may be thinking I’d called it a day. This isn’t the case.
A couple of months ago Sheila’s mum took ill and without going into detail we took her to a walk in centre. She’s 78 but has never been registered with a doctor. Big problem.
The centre had reverted to a surgery and as she wasn’t registered they wouldn’t see her and were actually quite rude and off hand.

We had time to get her to our own surgery but again they couldn’t see her as all appointments were taken. This time though everyone could see how poorly she was and were full of apologies.
They recommended that we should go to Rochdale infirmary where they had a another walk in centre not A and E.

We got there and they saw her pretty quickly. Heart problem, pneumonia caused by Edema for starters. They couldn’t cope with it and so an ambulance was called to take her to Bury Fairfield hospital.
Two days later, she talked the staff into letting her out. We don’t know how. We got her to our house and put her to bed. At 2.00 am she was in a bad way and although she had stressed all along that she didn’t want help, we called an ambulance.

The paramedics were in the house within 6 or 7 minutes. They spent around 30 minutes with her and the news was not good. They said if we hadn’t have called them out she would have been dead within the hour. The ambulance took her back to Bury hospital.

At this point we thought the worst, she was in a bad way. We were rushed into Resus where I can only say these medics were 1st class. We stood at the side whilst these magicians did miracles. We watched everything as it happened. She was in Resus for 6 hours. Many wires, injections, forced oxygen and much more.

It was so stressful and very upsetting. The specialist called us to one side and told us it wasn’t looking good and if she passes do we want them to resuscitate. Tears flowed. We couldn’t make the decision alone, we needed to call Sheila’s sister in New Zealand.

It was a difficult conversation and with advice we took the decision that resuscitatation would not be the right thing.
Resus stabilized her as best they could and then she was moved into intensive care. Again we stayed close to her whilst ICU performed their job. In the meantime Debbie in New Zealand was on her way to Manchester.

After 3 days in ICU she was moved to the coronary care ward. Debbie had arrived and so we were able to share our stress, anxiety and the responsibilities with someone else.
Sheila’s mum (Dorothy) turned out to be a nightmare patient, for what ever reason everyone was out to kill her and she was hallucinating and shouting.

When in the CCU ward all information dried up. We became mushrooms. When doctors did the rounds we were moved into the family room. We never got into a position where we could ask questions. The nurses told us bits but not enough.

As it happened, one day a specialist nurse from ICU came down to see how she was doing. We were thankfully told not to get our hopes up too high as it still could end up badly, she was still in a serious condition. Even though you don’t want to hear news like this at least it was news.

Another week or so passed, not eating, no progress, still a bad patient. We spend most hours at the hospital and even staying overnight when things were bad. It was now taking a toll on us all. We were now calling staff on first name terms, we had become part of the furniture.

We tried to get more information as to what was their future planning. We got passed around. We rang the consultants office. We spoke to the registrar, we rang  the consultant again. Eventually one day after speaking to the registrar ( a different one) we were told the consultant would speak to us after rounds. We waited and waited. He had gone.

Back with the registrar, he rang the consultant and back he came for a chat. We found out that the left ventricle was not working, she had poor kidney operation, but the pneumonia and general well-being was under control. Their plan was to try and improve kidney function and then do an angiogram with the probability of putting a stent in the heart.

We waited, day after day, night after night.

At some point, can’t remember exactly, we asked where she was on the op list as she was getting more and more anxious and we were no better. The next day we were told the kidney function was no better and so they could not do the op. Also she was so weak, now weighing 5st. 4lb that the op would/ might kill her, she may die on the table.

Not good news. So what happens next.
There’s nothing more they can do and so she being discharged.
Meantime we had spoken to social services and to be honest, although nice enough people, they offered no real help.

She is now home. With no real improvement possible to the problem she is on 14 tablets per day which will maintain some sort of normality. The 3 of us are doing 24/7 care between us. Not easy believe me. We have had one call from social services. Saying nothing basically.

Is there a light at the end of the tunnel? It doesn’t look like it.
Debbie has to return to NZ in early May. Without her we would probably have caved in by now.
What happens after she’s gone who knows, we have to take every hour as it comes.

Sheila is struggling with stress and anxiety and being honest, so am I but to a lesser degree. What will happen when Sheila has to go back to work will be a whole new ball game. One which I am not looking forward too.

We have a week in Norway booked and flights paid for in June, this is now looking ominous. We are not in a great place.

As an aside, Twitter has been a good stress reliever and I have had a few laughs. Thanks to everyone who has commented on some of my stupid sarcasm. At least I haven’t been blocked. Yet.


GeoffC said...

Very sorry to hear such a sad tale Alan, I'm amazed that she got that far without being registered under a doctor. I hope she receives some kind of professional care in the near future, but not being familiar with the system I'm not sure what the options are. I hope a better resolution presents itself soon.

Alan Sloman said...

As I was reading through this Al, I was overwhelmed with what you are all going through. As you have realised there is no easy fix and the system has you virtually abandoned and feeling all alone.

You are responding to this impossible situation with admirable courage, as you can see it wearing everyone down around you as well as yourself. From what I've read on here about Dot in the past, she's an indomitable character and incredibly fortunate to have you and Sheila (and her sister) to look after her.

If things turn for the worse have you thought about hospice care? My ailing father was looked after incredibly well by Sue Ryder Care - a service I will never forget or cease to admire. Could there be the possibility of respite care, where Dot is cared for to give you & Sheila a break?

Whatever the outcome, Al, you have my huge respect for taking on this extraordinary responsibility. It's a colossal burden to bear. I wish all of you all the best and hope that you can get some help.

Anonymous said...

That was an honest and difficult post. Any reader would feel your sadness, pain and futility.
Without being political aren't we supposed to be one of the richest nations? God help us.
I can only wish you and your family some satisfactory resolution.

Sir Hugh said...

Hi Alan and Sheila,

You have my greatest sympathy with some understanding, I think, as I saw my wife through three years of decline with Motor Neurone Disease. I would have suggested being more forceful with your representations to the various authorities, but from your agonising account it seems you have already been down that road and I am appalled that you haven't had a more supportive reaction. What about consulting your own GP on the basis of yours and Sheila's own wellbeing? He/she may be able to exert some authority from that different perspective.

You and Sheila are proper people and deserve better, and I hope you will have some relief sooner than later.


Sir Hugh said...

An afterthought. May you consider sending a copy of your post to your MP? I had a much less important issue with the local authority and roped in Tim Farron, our local MP and he was very helpful.


AlanR said...

Thanks folks for all your kind words and suggestions. We are novices at this game and we are learning as we go. We have talked to Social services and they are not forthcoming with any care help. They will, and have provided personal hygiene equipment and at our own expense i have modified the stairs so that she cant fall down them. We are currently trying to get her out to walk 20,30,40 yds and back and having some success. Fortunately for her we are only 9 doors away on the same lane and fortunate for us that we dont have to travel. If she was still living in Cumbria the problem would be far greater.
Al, if we suggested hospice care she would hit the roof and i doubt she would go. She wouldn't even let a care worker in the house as we found out when we suggested it. She is not a good patient and fiercely independent. Too much for her own good.
Conrad, we are going to speak with Sheila's GP who we have now registered her with. Thanks for the info. Its finding out whats what and having the time to do it.
Care companies cost a lot, between £15 and £25 an hour. At the moment we can't envisage going down this route.

Dave said...

Hi Alan,

And firstly sorry to hear of your troubles and the physical and mental stress it must be placing on all of you.

There is one possibility I can suggest; it might not lead to anything but would certainly be worth a phone call or an internet search. I'm not sure which Age UK operates in your area (although it's a national organisation each of the local Age UKs is an independently registered charity and they don't all offer the same services) but it might be worth searching online and seeing whose area of coverage you fall under. You could then check what services they offer.

Some Age UKs offer a Good Neighbour or Befriending service where volunteers will visit and help out for a while. I must stress that this is not comparable with a full respite care arrangement but, if it's available, it might be a way for you to get a breather.

Most Age UKs also run an Information & Advice service and they might be able to point you in the direction of some assistance from either your local authority or public health which isn't signposted elsewhere, although it has to be said that in many areas services have been heavily depleted in recent years. Depending on where they're based it might be worthwhile sitting with the I&A Officer rather than trying to clarify everything over the phone.

All the best to you


Dave said...

Alan, just as an addition to the above...

If you google 'Age UKs in the north west' you should get, among other things, a map which you can click and expand with their locations marked. It's also worth doing the same thing for 'Age Concerns in the north west' and getting up that map as well.

Without going into too much boring detail Age Concern and Help the Aged merged a few years back into a new brand partnership - Age UK. Not all Age Concerns opted to sign up, so there are still local Age Concern offices in some areas. Hope that makes sense.

AlanR said...

Thanks Dave for your comment. Its not something we had considered, so we will look into it. Every little helps as they say. Much appreciated.

Dawn said...

Saddened to hear such bad news Alan. It must be so darned awful, stressful worrying for you all. Maybe in some ways, I have some idea of the stress you are experiencing. Having this Parkinson's thingy, it does get frustrating at times. Mind, I am getting appointments, but each one passes me on to another department. Wish everyone well.


AlanR said...

Thanks Dawn. I don’t think we can envisage what stress you have been through. We can just give you our support. I lost my parents through leukemia and brain tumor but that was not as difficult as what we are going through right now. I cannot really put it into words.

AlanR said...

Dave, no age uk care in our area only their charity shops. But advice is free. Thanks for that.

Gayle said...

I've no useful hints or advice, but am sorry to hear about Shiela's mum, and the situation you all find yourselves in. I hope things improve soon.

AlanR said...

Thanks Gayle. So do we. We had some decent plans for this spring but now it will have to wait for next year.

Phreerunner said...

Hi Alan
We missed this posting until now, so no need to reply to my other message.
Sounds like an absolute nightmare from which you may take a while to emerge.
We do hope you can get some assistance in caring for Dorothy, and like Gayle and all your other correspondents, we can only hope that things improve soon.
With all our best wishes
Martin and Sue

AlanR said...

Thanks M and S. Much appreciated. If you plan any short walks on our side or maybe a curry walk, let me know and I will try and arrange it. I know you have a busy time coming up so I don’t expect anything soon.

John J said...

Really sorry to hear your news - chin(s) up. I know just how stressful this can be have just dealt with something similar.

Shiela's mum is a wonderful woman, so full of fun - it must be heartbreaking to see her so poorly.

Thinking of you all...and let me know if you do a curry walk. I'm sure I must owe you a (one!) beer!

AlanR said...

Thanks JJ. I know you have had a lot to cope with over the last few years. It’s still very raw with us but we are learning everyday.

Any curry walk I hear about, I’m sure you will hear first.

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