Sunday, January 10, 2016

Step Together Two Together

Yesterday was going too well.
The postie made it to the farm, so I took that as A Sign that I could escape for long enough to buy the Saturday newspapers and some essential groceries.  There was just one area of flooding between us and civilisation and I drove very slowly through it without incident.
FL had eaten breakfast:  a melange of tinned rice pudding, blueberries and chopped pear with a dash of cinnamon.  He slept through lunchtime, but I am used to that now.
However, when he woke at around 6pm he was confused and incoherent.  He wanted to go to the toilet but couldn't get out of his chair.
I eventually managed to tuck his chin over my shoulder to lift him and we shuffled towards the bathroom.  However, he was falling asleep as we "danced".  I had to concentrate really hard to keep him upright while negotiating doors and light switches.
He detests the raised plastic toilet seat with handles which the Occupational Therapist provided, but I knew that I would never get him up again if he didn't have the rails to lean on.
I left him there for a while to ponder.
But he was asleep again almost as soon as he sat down.
I visited him a few times to try to keep his mind on the job at hand, but he couldn't even pee.
After about half an hour, I decided the risk of hypothermia in our frosty bathroom was too high, and persuaded him to return to his chair.  I am still not sure how we made it there in one piece.
I cooked dinner, but could not wake him to eat.
I tried again at "pill time" but he couldn't open his eyes and was muttering incoherently.
By 10pm I was getting desperate.  I managed to rouse him enough to take most of his pills.  I didn't attempt the bone-strengtheners as there are four of them and they felt like a bit of a luxury when he was struggling to swallow his morphine.
I made his hot water bottle and thought we could repeat the 6pm shuffle through to the bedroom.
I tucked my arms under his, with his chin on my shoulder and slowly stood up.  He was trying to help me, but his legs just kept giving way.  We were almost upright, when he lurched back down towards his chair, but he was too far from the edge and he and the cushions slid unceremoniously onto the floor in a heap, taking the telephone, his radio and a glass of water with him on the way down.
It was a relatively soft landing due to the cushions.
He had his eyes shut, but was still conscious, if confused.
I covered him with a blanket and tidied the debris.
Then I tried to summon help.
We have neighbours, but we are not on particularly good terms with any of them.  I was considering trying the middle ones, who are the most human, when I remembered that there were no cars outside. They had all taken the opportunity to get out while the roads were clear:  the nearest set is pregnant, the middle set work shifts, and the furthest away one is not to be spoken of.
So NHS 24 it was.
It took forever to get through, and then another forever for the operator to find FL on the system.  It would appear that the "new" GP is not yet fully functioning despite taking over FL's practice in October.  The operator eventually managed to identify FL as a "palliative patient" and said she would try to contact Marie Curie for assistance.
This was good news - I thought it might mean FL would actually get some proper support if we were referred to Marie Curie!
However, it was the local district nurse service that rang back.  They were quite reluctant to come out - did we not have friends or family?  Were we really completely alone?!
It took them almost an hour to find us.  I had explained the need to ignore the Road Closed sign, but the nurse was not impressed that this meant she had to drive through some shallow water to reach us.  I had assumed they would have a "proper" car, if their job involved driving through Aberdeenshire in winter in the dead of night, but it was no better than mine (a small hatchback).
One of the two nurses was also phobic about dogs, so Hero had to be shut in the study for the duration of the visit.
However, they came.  They were very efficient in waking FL and lifting him back onto his chair.
They didn't perform any medical checks other than to ask him if he was alright.  He had his eyes shut again by this point and did not answer.
They quizzed me about the whereabouts of his "blue book" (he doesn't have one - should he?) and did not seem to believe that we did not have "carers" or a zimmer frame or a wheelchair or indeed any of the other things I have been campaigning for since before Christmas.
And then they started to put their coats on to leave...
No, stop, please, can you help me get him to bed?!
They seemed quite surprised by my request... even though it was midnight and I had explained that this was how he came to land on the floor in the first place!
So they each took and arm and escorted him to the bathroom.  I said he had not managed a pee since the morning and they agreed that was not good.  But he still failed to perform.  Their mobile phones had not stopped ringing since they arrived and it was clear that he was not the only elderly patient to fall that night.  So after a short pause it was agreed he would just have to go to bed without passing water.
I cannot imagine what they thought of our bedroom, which was still in its post-flooding state, with furniture pushed against the walls and curtains looped up on the windowsills to keep dry.  But it was no time to be houseproud.
Trousers off, legs up, woolly hat on.  Night night Mr Mac.
And off they went.

Today has been ok so far.  He managed a scarily dark pee into a bucket before he got up, and had a couple of spoons of rice for breakfast.
We discussed the events of the night before and he agreed with me that we can't go on like this.
He was still awake when I came back from walking the dog, but fell asleep at about 11am and is still spark out now (6pm).

I have been knitting.

I just have to hope that I can get some sense out of someone tomorrow.


61 comments:

didyoumakethat.com said...

Roo, I am very concerned now. Can your son and daughter help at all?

Mindo said...

This is awful! My next door neighbour is in her 80's and has carers and home helps visit her at least 3 times a day, and she isn't receiving palliative care.

I do hope some help will be in place for you very soon, and so disappointed that your GP/MacMillan aren't helping you.

bbarna said...

When my sister came home to assist my mother with helping out during my father's end stage cancer, she kept a log book. It detailed when he was awake, when he ate, drank (and how much) , took his meds, and other details. It came in very handy when the paramedics accused her of overdosing him when he couldn't be roused and they called the ambulance. My thoughts are with you during this difficult time. Take care,
Barb

Mags said...

Oh Roo. I am horrified and so sorry that you have to go through this alone. I hope tomorrow brings you some practical support. My love to you and FL. Wish I could do more. xx

vintagerockchick said...

You poor girl, you must have been at your wit's end, I really hope you get proper support - and soon.
I am a regular reader, and ostensibly we have little in common, (apart from a love of Merchant and Mills patterns) but because of your honest and simple matter-of-fact way of writing, I feel as if I know you. I'm not religious and so won't offer to say a prayer, but please know that you and your FL are often in my thoughts. Hope you have an easier week X

Emma said...

Insert swear words here.
Roo. You are both very vulnerable. The District Nurse service is very over stretched. This doesn't excuse their appalling lack of care, but explians it a bit.
I know that FL won't like this, at all, but the dark, scant pee is NOT GOOD. If you cannot rouse him you need to call an ambulance. You cannot manage to move him about on your own. You need to shout for help, to everyone you can think of, right now. It shouldn't be like this.
Please call an ambulance. Things are not right.

Oh Roo. How I wish I could help. All I can offer is virtual hugs.

Knitlass said...

Well done for getting someone to come out when you needed them. You clearly need some more help! Perhaps this event will help you get some more support ASAP.



X

Saffi said...

Hope today was better, and that the emergency call out has helped people realise that you need some support. Is there anything we can do to help, even if from a distance?

Saffi said...

Hope today was better, and that the emergency call out has helped people realise that you need some support. Is there anything we can do to help, even if from a distance?

Tamsin said...

You should not be doing this on your own. Time for some foot stamping tomorrow. I hope the emergency call will prompt better help for both of you. You will need better memories in the future than this struggle... My husband had to have the plastic loo thingy when he broke his ribs and couldn't sit or get upon his own. A rather disjointed comment, but really just to say I am thinking of you both.

Su-z said...

From my experience, too much morphine can result in urination issues. I like the idea of keeping a log, so you can check with your HCPs to make sure it's the right dosage. My son had too much morphine once, and ended up with a catheter inserted not through the normal channel, but through his abdomen.

Su-z said...

And I forgot to say, that my best thoughts are with you. I can't imagine going through this the way you are, with so little support.

Carol said...

Thoughts are with you and FL. Fully agree with Emma both in inserting swear words (***** only knows how you don't!) and about calling an ambulance. Look after yourself as if we don't look after ourselves, we are less able to look after those we care for.

As a sewer think there must be something in this knitting thing!

Athene said...

So sorry to hear that you're not getting the support that you and FL need (and are entitled to). I hope today has been better, and that tomorrow Social Services/the MacMillan nurse can get some help in place pronto.

you're very courageous and if thoughts were deeds, you'd have all the help I could give.

Alison said...

What an awful time you are having. You get a blue folder when you are under district nurse care and they are supposed to fill it in when they visit. You should also probably have a 'just in case' box of medicines that can be administered by said nurses if the situation is extreme. I am not sure if Aberdeenshire is similar to Edinburgh but in my Mum's documentation there was a 24 hour district nurse number to call instead of NHS 24. Maybe that is another question to ask, whether that exists, as it reduced a lot of the hassle in calling NHS 24. Another thing is intermediate care were amazing at getting all the zimmers etc to us pronto when things took a nose dive, again don't know if that service exists up with you but might be worth asking. I know FL is not keen on hospice care but Marie Curie were amazing for my Mum (and my Dad who until then had been in total denial about how bad things were leaving me to be main carer). Thoughts are with you both.

Sadie said...

*Hugs* I hope tonight is better than last night, and that tomorrow's meetings result in some more concrete help for both of you.

Sarahel said...

I've had to lift my frail elderly husband a couple of times so far, and it's not easy, and he was not in the same state as FL. You must have help. Please let it come tomorrow. Hoping for an easier evening for you both tonight.

Clare said...

I second this. If the plan is to care for FL at home you need at least one other person with you. With the best will in the world, dealing with this situation on your own will be too much. I hope tomorrow brings more support but if it's delayed, get your family around you asap. Sending love and strength. XX

Jen said...

Oh Roo. Sending virtual hugs and positive energy. Hope tomorrow brings some help. xxx

Susan_in_Peckham said...

Wishing I could be of some practical help to you....
I hope today has seen an end to the floods and local help arrive.

Twelfthknit said...

Oh my. Ruth I really hope that the powers that be get their fingers out tomorrow and get you the urgent help you need.

Roobeedoo said...

Hi Karen. Kids are both in the South. This is not their problem and I would prefer them to get on with their lives. I just need to put a rocket up someone within office hours!

Roobeedoo said...

Hi Emma. I know he is at risk of kidney failure. I thought the district nurse would have alerted the GP last night but clearly not. He is much better tonight so I will wait till tomorrow to do battle!

Miss Norm said...

Thinking of you daily, Roo I really hope you get the support you both need. Roo I know FL has said he does not want to go into the hospice, my Mum said exactly the same, and we had a relatively good care package. But even with the support when she deteriorated she need 24 hour care by professionals. I promised her I would not let her go to the local hospital or the hospice, but when the time came, I needed the Hospice as did my Mum. Roo I needed to go back to being a daughter, not a carer. Sending love to you all xx

Roobeedoo said...

Saffi, thanks for the thought but I don't think there is anything to be done from afar.

Roobeedoo said...

Thanks Tamsin. I know. It's time to stop being polite I think!

Roobeedoo said...

Interesting to hear how it is supposed to work! Half the problem is not knowing who to ring. I will try them all tomorrow!

Roobeedoo said...

You are absolutely right. FL got a fright last night and understands now why I have been seeking help.

sulkycat said...

Do insist, with everyone - you need as much help as possible, immediately. If you don't ask (as in INSIST), it will be assumed you are coping. A zimmer frame or similar are essential (Mr FL, this is no time for pride!), as are the mundane things like a full freezer, plenty of meds in the house etc so you can concentrate on both you and your man.
Sending all the best wishes imaginable.

seamedstraightforward said...

I wish I was your neighbour. I would help you in a heartbeat. I am so sad that not only are statutory services failing you miserably, you don't even have the support of a neighbour. What a sad indication of how society functions these days. I hope you can get some sense out of someone tomorrow.
Unbelievable that you can continue to produce such beautiful knitting in the current circumstances, you are an amazing woman, although I'm sure it doesn't feel that way just now.
Thinking of you both.

Redhedhels said...

Sending much love and hugs, as I'm not sure what else I can offer. I'm sorry that yesterday was such an awful day. To be in this position without support is bad enough and I can only imagine that the floods are making it worse. As others have said, look after yourself, know that we're all thinking of you, and I hope some foot stamping tomorrow gets you the help you both need.

Fiona said...

Huge amounts of sympathy & anger on your behalf. This is far too long without assistance. My brother in law is healthy but disabled and carers have to lift him 2 at a time, using a hoist: in what circumstances would anyone expect a single, non-medically-trained family member to be able to cope and give adequate care? Unbelievable! Your geographical isolation is no excuse for an appalling lack of basic service. Grr... When you need it most. Fingers crossed for practical help before you have to ask again. X

poppyinstitches said...

Just so wish I could do something, can not understand why there is no help - thinking of you xx

Andrea said...

My heart breaks reading your posts. End of life care should not be like this. I am in Australia so I don't know how the systen works there, but in the last month of my Dad's life we cared for him at home - my Mum, a medical friend, my 2 sisters and I, so 5 of us on shifts. Plus we had pallitive care which provided us with a lifting bed, a morphine pump so no more tablets and other things like a portable toilet next to the bed and visits everyday. We also told all family and friends that our Dad was dying and then got the extra suport by way of food drops and emotional support. You need this help. Please reach out and DEMAND help from your medical services and family. The care shown so far by your medical services is absolutely appalling. It is way too much to do alone and things are only going to get harder. I so hope you can get support so these last days will be easier for both of you.

Gillian Hall said...

Oh dear, Roo, what an alarming experience - I think you coped with it brilliantly. It's not much help after the event but I have found that poor communication between parts of the Health Service is just a given because they are so overworked. Unfortunately carers simply have to do the joined-up thinking and communicating themselves and it can take a lot of time. Once you have some support in place it will be easier, but you may find you still have to do all the running.

It's such a shame that the floods and bad weather meant your meetings were postponed but hopefully things will move quickly this week. Glad FL is better this evening. Thinking about you both. X

colleen said...

It's good to hear that you have your knitting to provide comfort on these most challenging days. Hoping very much that you will get some speedy and appropriate solutions tomorrow. Will be keeping fingers crossed.

Lynn said...

I hope it's helpful to share your experience here with us - we hear you, if no one else seems to! I am an ocean away, but sending virtual hugs and hope you soon find the help and comfort you both need.

K.Line said...

R: You are a brilliant coper but it's time to get some family assistance, if at all possible. Until the county sorts itself out, you need to be spelled off, at least occasionally. I'm sure that's just another thing to worry about (and to organize) but I don't know how you can continue alone. Please do reach out to family or friends if at all possible. xo

Amphibiaknitter said...

Jesus. I don't even know what to say. I can't believe the utter lack of support there. That is so staggeringly awful. Best of luck for Monday morning to light a fire under someone and get appropriate arrangements for FL. Hugs. I wish I were closer and could do something for you.

Perhaps Dr. Iyaryi could work some health care magic for you and FL..... ;)

greenmtngirl said...

Roo, what a terrifying experience. You are doing so well but I echo others in feeling very worried about you (and in the swearing!). You are clearly doing absolutely everything you can but you shouldn't be on your own with this. It's hard enough to face the end of life with someone you love without being completely without assistance with basic care. The best thing about hospice is having other people to take care of many of the medical/life needs so you can be with FL. I want that for you both so much. I hope you are able to get some help somehow in the next day or so. Thanks for keeping us all posted. Sending courage, warmth, comfort--everything I can think of!

Jodie said...

Roo, I don't really have any words. I hope you get the hope and support you need tomorrow.

MaryinTN said...

Roo,
Hugs and prayers winging your way! How absolutely terrible. And terrible none of the needed meetings have happened. I hope and pray the support you and FL need is on the doorstep first thing tomorrow

twotoast said...

The same as all the other commenters. My thoughts are with you both and I hope that you get the help that you so clearly need and deserve in the morning x

Brenda said...

Just writing to echo my support. To say this is challenging is a huge understatement. I'm all in favor of rockets during office hours. In the US, I'd start asking to speak to supervisors. The level of service you are getting is appalling! Sending you my best wishes.

Adele Terrill said...

Roo, I'm so sorry this is happening to you, I'm sure you must be exhausted. You need to get FL into hospice, I know he doesn't really want to go but this is taking such a toll on you too now, and who knows when you might get more rain. I join with the others who have said I wish I could help but from the other side of the world there isn't much I can do but pray for endurance for you. Reading the comments I notice you are starting to get scammers preying on you too, for goodness sake people have some respect!
Is there a local church you could ask for support? Many of them offer practical assistance without the religious aspect if you don't want that. In my thoughts and prayers x

Kitkat Krispie said...

A new dawn, a new day. Hope you both had a decent night. You need your energy for today you must go in to battle. You can not repeat your experience of the past weekend. I will think of you today as you challenge the NHS and other agencies. GOOD LUCK. Hopefully, by the end of the day, you will have a proper system in place including a Log Book to make detailed notes on medication and physical responses. My thoughts are with you.

Sewing as Therapy said...

Sending hugs. Lots and lots of hugs. Wish I could do more.

Sarah said...

Oh Roo, you are in a truly heartbreaking situation. I know our words are scant comfort to you when you are struggling with FL in the middle of the night but we are all thinking of you and wishing for some respite for you both. My father in law is in palliative care too, but he also is in denial. He sleeps constantly,, can't move from his chair and has stopped eating. Both he and FL need hospice care now to give them some comfort and dignity and to make their precious time left with us peaceful and restful. You need this time too. Wishing you some resolution to your struggles. Keep on knitting. It has been my solace and saviour through dark times. Virtual hugs from Cumbria xx

Laura said...

Oh, Roo, that sounds so horrible. Not only the incident itself, but the way the nurses reacted as well. I hope you can get someone to listen to you today, and get you both the help you need. Love as always xxx

spabbygirl said...

Too you coped brilliantly in a very difficult situation. I'm a nurse and a social worker and you need a social worker to do an assessment to provide you with services, things like helping to the loo which might need home care to work with you. also an occupational therapy assessment to discuss what equipment can help.

The NHS & social services is in a dreadful state, I believe it is being run down to justify privatising it. I'm sure all the staff you met have your interests at heart but they're just exhausted. I know what its like to deal with one very serious situation only to have the phone ring again the instant you put it down with another similar situation.

Ambulances help pick up people who have fallen and can't get up, they have a blow up the ng that does the lifting these days.
Blessings, Lynne

Anna said...

I think the blue book might be his District Nurse notes, I didn't get mine until I'd had about 4 or 5 visits, no one had even mentioned it and it was the emergency DN I had out on a Sunday when I found an infection that asked for them, I suppose to let the 'regular' nurses know what she'd done when the arrived for their next scheduled visit.

Hope you sort out some cover soon, thinking of you.

Karen Venables said...

I do hope you had a decent night and that today you can get some proper help, because this is just not right. Just had a thought and of course, feel free to ignore, but are you on Twitter? Sometimes a timely tweet to the appropriate agency gets results where other avenues have failed. I'm not sure if this will work with social services/NHS but thought I'd throw it out there, just in case. Thinking of you both and hoping that today is better.

Susie Hewer said...

Roo, I am so sorry you aren't getting the help you need at this difficult time. Hoping today is better. Sending you virtual hugs and much love xxx

Jane Neave said...

I can't believe after all you're going through help is in such limited supply. I feel angry for you and helpless as I could offer you help as I've been through this with my mum and without the help we received dad and I couldn't have coped as we did. I don't want to tell you what to do as I do understand the emotional stress you are going through but if I was you I would get on the phone to your dr and insist you have help now. What would happen if you both fell. Honestly you need help. Make as much noise as you can and insist you have help now. Sending you love and strength to you both xxx

Jenni said...

Hoping that you can get more help today after such a draining weekend 😕

Violet said...

Really admire your strength and keeping my fingers crossed that you get the help you need today. You aren't asking for anything out of the ordinary, or anything more than what you deserve. Good luck.

Lynne said...

Oh wow... just read your post and all the comments. Lots of good advice there. The scarily dark pee truly NoT Good, and it would be a good idea to mention that and also describe it in terms of how brown it is... tea colored, coca cola colored... his not peeing may not be the morphine. He could also be so lethargic for other reasons than the morphine. He definitely needs treatment. Also are his ankles swollen... how does his breathing sound? Wet? Dry? cough? wet or dry? Amounts eating and drinking? Folks think because people stop eating at bodily functions stop, they don't ...so if they do, it can be a problem. A big one. He needs to be seen and properly seen by a proper doctor...a good one who cares. I agree you also need a social worker, but that usually comes after some kind of freaking referral and here is where I want to scream, literally rage, at your GP's office for not getting you the care you need. Ask them to read your blog...I am beyond angry for you. I am incensed... at this point as a nurse, I would say... Call an ambulance. He needs care NOW... as in hospital, not hospice. He needs to be seen, Yes, keep a record of the meds and the times you give them. Just write it down in a continuous list in a notebook or couple pieces of papaer, with times and dates, because his lethargy needs to be explained and they will blame the meds when it could be connected to his kidneys... so please, get him seen. ASAP... and make sure you also get the services you need. No going home without having actual appointments with people coming to your house. They should be able to come to the hospital to admit him too... our hospice did that. Then a home visit after. And delivery of supplies... but please please please.... call an ambulance and get him seen. There is something not quite right going on there. If you had homecare already in place, I would say call your nurse, but since it is not in place, call an ambulance. Giant hugs, still praying... and do keep on sharing with us. You are a brave woman.

Lynne said...

And feel free to disregard my advice.... I felt like I came on too strong, but I ... really do feel that without home care of some kind in place that it would be a good idea to call an ambulance and have him seen. Or call Marie Curie yourself, because you may not need the GPs referral..l or call your GP and explain the lack of responsiveness, fall, urine color and anything else you notice... and say you need help NOW, today not tomorrow... Call the hospital and ask to leave a message for the kind macmillan nurse and explain what is going on.... I would do it all in a way... because somehow you are falling through a gap. It is NOT asking for too much, especially now that you have a documented fall.

CarolS said...

Such excellent advice especially the last from Lynne, please please follow and get them(GP etc) to see your blog too. Anxiously sending you best wishes, courage and strength.

Jennifer Hill said...

Have you thought of contacting your MP? Sometimes they can miraculously get things happening and people talking to each other when all else seems to fail. I am angry for you and the chaotic situation you find yourself in. The only thing I can think of that your readers could do remotely is lobby or petition the services involved on your behalf, as noone but you is seeing the whole picture and thus the desperation in your situation. I would be very happy to, though I imagine you really wouldn't want anything like that. It's ridiculous that your situation is such that I'm even imagining such a thing. I think a call to your MP might be an idea, though? Jen

Nita said...

I shed tears for you this morning. I wish I could help. ((( hugs)))