Making the most of it

Thank you for the advice, it really helps to know how others cope with this stage/level of care.

Sadly, Nigel is unlikely to be going back upstairs at all so we are having a hospital bed delivered for downstairs. He already requires a lot of care so I have have requested the carers come in to support me.

We are going to have a bath board, for him to sit on if I shower him but again, we might just be washing him in the bed. I will be relying on the beauty of Amazon prime to deliver single sheets and little fleece blankets on next day delivery when and if we get the go ahead to come home.

I have blue gloves, hand gel, wipes but I haven't bought any aprons....I'll add those to my list.

Also, sippy cups, he's back to using proper cups and glasses now but in the night a sippy cup prevents wobbly hands spilling the drink.

No-one seems inclined to scan Nigel for spc presumably because the effort of the scan outweighs any benefit that may be gained from knowing. This is depressing but he's not bothered so I haven't persisted.

Off to the day centre this morning, it's within the hospice so he can go back to bed if he wants but it'll be nice to see something different.

The OT and the hospice team have organised a Fast Track Care Package. This includes ordering a bed, recliner chair, walker, small wheelchair and other necessities to be delivered to the home in preparation for Nigel's return.

There are some days where I just cannot comprehend how many thing have gone wrong in terms of administration /communication for us.

I rang the hire company this morning to arrange the delivery date and they haven't got Thursday's request /order......aaaaaaaarrrrrrggggghhhhh

I will have to wait patiently until Monday morning and then find the OT and ask them to request it again.

In yesterday's post was the form the doctor had completed for Nigel's medical exemption certificate, it has been returned for us to sign. I rang them to ask if they had had a covering letter from our gp explaining the error and why Nigel hadn't signed it. They couldn't give me any details but said the gp should have signed it and then explained why they had signed it for the patient.

They requested I scan and email my Power of Attorney, included a covering email explaining why the fine should be cancelled and include the fine reference number etc. This will take 2 -3 working days and then I can phone and discuss his account. OMFG, I am very close to breaking point, these seem like insurmountable barriers. I hate that I'm losing my s**t over what probably seem like small things but they are just 2 more things that I can't seem to get right and noone else seems to be able to do it for me. I'm trying to stay calm but I really want to shout at somebody and tell them how useless they are.

One thing they can't do in the hospice is use the big syringe to push saline into the bladder and then pull clots out, I am going to ask tomorrow if this is a bookable procedure at the urology dept as it may require doing shortly and I don't want to take him in through a&e again, ever.

Bed etc is arranged for delivery on Wednesday, bloods taken today, results probably tomorrow and possibly discharged Thursday. I asked N to insist that he didn't leave on a Friday, I am so anxious about taking him home already and I don't think I can cope with it being the weekend too. He looked confused when I asked him but when I explained that I was worried we'd get home and if he didn't feel well everyone would have gone for the weekend (there's a skeleton crew at the hospice on weekends) and I would have to rely on district nurses who may not be able to resolve the issue and would ring an ambulance he agreed that possibly Friday was not a good idea. It may sound irrational to some but when every crisis has been at the weekend I feel too stressed to start our return on the Friday.

N had a goodish day, enjoyed sausage and mash for lunch and a chocolate biscuit for tea, got into the wheelchair and used the walker a little bit too.

Didn't want me to stay again, so third night in a row at home.

But oh my days, the 15 year old has got nits!!!!!!

She is horrified, ranting about disgusting people on the bus, so instead of an early night, I spent an hour with the nit comb😅. Sometimes I wonder if I did something bad in a former life, we also had another prescription fine in the post today, welfare lady doesn't work Mondays so I will talk to her tomorrow.

I'm keeping my chin up but the swearing is really bad.....

Devon maid, I feel your very British patience being tried😁😁. 

I decided tonight that if they want him to come home Friday I am going to speak with my feet and leave. I don't think any amount of support can combat my anxiety over friday nights and I'll just be worried sick all weekend which won't be nice for anyone (I get very shouty/snappy/irrational).

I feel I have mostly coped up until this point but I admit I am struggling.

I'm really dreading the next time I have to go to the gp's or the chemist to collect prescriptions. Your dance back and forth today sums up the experiences of many.

I hope the Enzo is effective quickly, fingers crossed for a swift improvement for hubby xx

You have had so much to deal with with all these bladder/clots/catheter issues - it must be a nightmare. Although H has had a catheter (SPC) for a long time we thankfully haven't had these problems. We did however have a short spell where the balloons burst and the catheter dropped out, so we had to make quick trips to Emergency. One of the kind nurses did suggest that I learnt to put one in, but I wasn't having that!

I did laugh at your description of your visit to the day centre. Exercises to music - the face on my H would have been a sight too (and we probably would have wheeled around and reversed straight out). His nightmare scenario though woud have been if there was any mention of bingo.

I have been heartened by your descriptions of the improvement in appetite for N, using the chair and the walker, and the increased awareness, and the ability to use his phone. All of these sound like really good signs, and I must admit brought a tear to my eye. We seem to have reached a nice plateau in the past couple of weeks, which is much better than we were a few months ago, and it is lovely while we have it.

But yes, it is a struggle, isn't it. And no matter how much support you have from family and friends, it is a very lonely business. Wishing you a few peaceful days to set you up for the return home, with no extra dramas or frustrations (and no more nits, of my goodness).

Kentish

I have had a catheter in my bladder numerous times that equate to about two and a half years, despite pulling on the catheter a few times I have never had one fall out, when changing my catheter there is sometimes only 2 of the original 8 ml of water left in the balloon. As long as the catheter is correctly fastened to the thigh strap there should be no concerns, the secondary strap should be in the "Y" of the catheter.

Probably to simple to be the answer to the blocking but is N's  bag below the level of his bladder. I drink around three hundred ml of water last thing at night and produce between 500 and 1200 ml of urine overnight. Constipation can also be a cause of catheter blocking. Keep up the good work.

Thanks Chris

N is very tired today, probably from all the organising that goes on around him, he's interested but it's hard to follow what everyone is doing and when.

I've been shown the catheter maintenance once and I will have a go at it this evening, I'm sure I'll get the hang of it quickly doing it twice a day. I suggested to N he might like to do it himself but he didn't look particularly willing!

Today's administration cock up is Carers Allowance. I have been on unpaid leave since the end of October but as I was paid £6, yep, £6 over the threshold in November I didn't qualify for November or December. I have been paid for the week before he went into hospital and then a bright spark who called me in Jan to ask for December's payslip has decided in their infinite wisdom that because he is in a hospice, he won't be coming out and closed my claim completely......I get the threshold has to be somewhere and although infuriating, I can just about swallow the injustice but to assume they can close his case completely. ....aaaarrrggggh.

The response was that they will listen back to the phone call to work out why the operative did that, I feel they are looking for something I said that can be interpreted as me saying he won't be coming home. Then I will have to begin a claim all over again.....this life is so hard to navigate at the best of times, today I feel like giving up on admin completely it's too exhausting.

On a more positive note, the hospice doctor encouraged N to attend the next onco appointment on Monday, it may be just to tie up ends but one can hold a glimmer of hope that symptom relief is still on the table if it's needed, maybe some radiotherapy to the prostate to reduce it if he's fit enough. I have booked hospital transport as I'm not sure he'll be able to get in a car.

Hoping the move home tomorrow will be smooth and not too tiring.

Damn and blast that admin.

I feel for you, Kentish.  Disturbed sleep, on top of the anxieties of the past months is absolutely knackering.  And it is very hard to bounce back from it.  And the after effects of the laxido - aaaargh, you have my sympathies. 

Hope you sort out the car - it will be much more convenient than having to either wait for transport or hope like hell that it turns up.  But, transferring is hard work.  H still has reasonable arm strength (at the moment), but his legs have no strength, and one doesn't work much at all.  So to get him in the car it is lounge chair to wheelchair, then wheelchair to the car and transfer.  If we get the wheelchair side on to the car seat he can push himself up on his arms and slide across (sometimes with more success than others!).   If you can get some advice from the allied health team at the hospice they may be able to work out the best way for you to do it.  There are a few aids - grippy handles that clip into the door lock, and a turntable thing for the seat, and slide boards.  We didn't think they helped in our case, but it is worth exploring.  And is your wheelchair heavy?  Ours is fortunately fairly light and can be taken apart a bit to get it in the car, but there are tricks to lifting it in too.

Oh Teacups, 

Shortlived hope indeed. N bleed profusely from his prostate Tuesday and Wednesday and Wednesdays blood test showed his hb was down to 70 and his gfr (kidney function) was 12. Dreadful numbers. Ambulance back into hospital for a blood transfusion Thursday evening and waiting for an ultrasound of his kidneys. But as per bloody usual, it's the weekend, nothing happens on the weekend here it seems. Ultrasound will probably be Monday.  To top it off , I've come down with a sickness bug, the first time I've been too poorly to look after him and he's in the hospital. It's so stressful,  and it bloomin snowed. Sister in law and mum are taking turns to sit with him while I recover. 

Radiotherapy planning booked for Tuesday, Enzo clinic Friday. Hoping he'll be able to get to them.

Kentish

Sorry to hear N is back in hospital and you are under the weather as well. I am sure that N is getting the right care, the squeezy irrigation bottles you mentioned before are presumably optiflo, not sure if it would be relevant but there a citric acid version that is supposed to help reduce the amount of  crustation in the catheter and reduce blocking. Might be worth asking his care staff. 

Thanks Chris

Devonmaid,  yes please, I'll take anything!

N is the most communicative and lucid he has been for weeks, perhaps this is because his kidneys are working better with the nephrostomy tubes ? 

Urology didn't want him to go for radiotherapy planning tomorrow but onco insisted. N is anxious about travelling ( its at another hospital about 10 miles away) but wants to get on with it.  I came home and radiotherapy rang and asked why we had missed his appointment !!!!!!

The letter they sent says it's tomorrow and next Monday is the treatment. But they had him booked for today and treatment for thursday,  I wept, the poor lady on the end of the phone "take some deep breaths, we can sort this out."

She said to take him anyway tomorrow and they will fit him in somewhere,  also his bone scan is booked for Thursday too, she said to bring the letters and she will sort it out as his radiotherapy is very urgently needed. Sometimes I can't breathe, the despair and anxiety creeps up on me and is like a crushing weight. I just really, really want a little break for us all from this. Just to have a few weeks where there isn't a catastrophe. 

I need an early night but now I'm fretting over whether he'll be called down for his stents when he should be at radiotherapy /bone scan or whatever...ffs. life is s**t sometimes😭

1 down and several to go.

We made it to the radiotherapy planning appointment at the other hospital. A lovely nurse accompanied N on the transport and looked after his medical needs. Checking his nephrostomy tubes and catheter everytime he was moved.

Creatinine down from over 500 yesterday to 250 today.

N feeling good about the plan and less nervous after we watched a video of the machine on YouTube.

Agreed by all that radiotherapy is to come first and then the stents, so they may be done on Friday if he is well enough.xx