We Talk Brain Tumours

Pam, this post is so much help!

Mac arrived home several hours later than anticipated and was dumped unceremoniously on the bed by the ambulance crew. He was all tangled up in a hospital sheet and I couldn;t get him comfortably untangled until the carers came three hours later. I was told the district nurse would come at 3, but only the carers turned up, and hastened off again as Mac hadn't arrived yet, and were mostly concerned that I would sign their timesheets to show they'd been even if they didn't do anything. They came back later and managed to get Mac's T-shirt changed and moved him up the bed, coming perilously close to cracking his poor cracked head on the headboard.  One of them didn't appear to know the first thing about what she was doing and the other was ferociously bossy and told me off for not having the right equipment immediately to hand - I had to step out of the room for a minute to get a clean T-shirt! - and warned me I must have all his washing things ready in the morning when they came back. 'We are very busy people!' (and I am entirely new to this..)

He has a bed with pressure mattress - that's it. Oh I tell a lie - he has a 'slippy' sheet.

I definitely need to get cot sides and I really feel some kind of hoist is needed. My attempts to use a bedpan last night - and to change his pad - were lamentable. Poor Mac - with cot sides at least he can grasp with his good hand and raise himself up a bit, without he is just a dead weight and can't even roll on his side. As it turns out the bedpan was a false alarm,  if it hadn't been there would have been the most horrendous mess and I even have no real way of moving him to change sheets.

He arrived home with a huge bag of meds, but no discharge form with meds list. I had to go through the whole bag reading every box opening most of them to find out what each one was for, with the less familiar ones.  (I do do that usually  anyway, but not usually in a bit of a flap as to when to administer!)  I rang to enquire about the discharge form and was treated to listening in to a huge row about whose fault it was it didn't come with the meds. When I enquired what they were going to do about it  they said I should come and pick it up. An hours bus-ride away, and I am on my own with Mac.  Apparently they don't do email.....

Most of the meds are injectable so I can't administer myself anyway. Last night he was suffering with shortness of breath - they had kindly supplied nebuliser cartridges, but I have no nebuliser... - and the drying-up type medication was an injection.   Am currenly waiting for both the district nurse and the gp, both of whom have promised to call, and am feeling very weepy as Mac said this morning he thought he should be back in hospital. I feel I have failed him so badly.

Sorry for huge long self-centred drivel.  Had little sleep last night and am feeling pathetic and wanting a rant!  Will do better next time...

Mary

I very rarely write on this message board but do visit everyday.

I lost my father just over 2 months ago and I just wanted to say that this is a tough enough journey to go through without the lack of support you seem to be getting at the moment from your local health department.

I just hope things are sorted for you ASAP, and i think you are doing a wonderful job.

Chris

Oh Pam.  I should grab you by the shoulders and give your noggin a good shake!!

Do not ever ever think that you're not doing your best for Tony.

In the bigger picture, you are giving Tony the best care that it's possible to give.  Because you're doing it with love.

Hold your head up, you're doing a wonderful job!

Thank you Chris, I am so sorry about your father.  I am so thankful to you and to the other brave souls on this board who come back after finishing the 'journey' and help us who are still going through it.

I am conscious that all my posts on this thread are 'me me me' whinges. But I do read all the posts and weep for everyone, most of whom are far braver and far more unselfish than I.

Thank you to all.

Mary x

Good morning Mary.... I am so sorry you are having difficulties with arranging help for you and Mac.

I've been through something similar, which is why I became sneaky and found a way through the 'back door' .... and rang equipement services !!

I'll never understand why the hospital said those things about equpiment not available, but my husband thinks he upset one Physio, and she was responsible for signing off equipment....

I had to 'fight' all for equipment .... even having the raised toilet seat. (with hand rails) But t hey were OK at supplying a commode. I was told that the raised toilet seat 'was not essential to husbands wellbeing' !! ..... But what about his dignity? They just didn't care...

Somehow I found the strength, and fight to go on. .... and I spoke to some of THE most senior Consultants available. I'm not one for being argumentative ... but I became very protective of my husbands care and treatment ... and told them 'I'm sorry, it's not good enough.....

If you could see me.. I'm petite, (short and slim).... look like 'I wouldn't say Boo to a goose' ... I even surprised myself at how I could 'handle people'.

I struggled for Home care and support ... but got some in the end. It is a Postcode lottery though.

My thoughts are with you on this journey.

Take care x

If it hasn't already been mentioned.... keep a diary... times, dates, swho has phoned, who you phoned...

Dear Mary.

I'm afriad that I read your post with my head in my hands.

Your Mac is right, he should really still be in hospital until your home/care package/equipment is in place.

If you're not happy with your home carers, then you're entitled to request another agency.  They've been supplied by Social Services.  Hopefully your Mac nurse will be able to assist you in this.

It's at times like this when I wish I could swoop down and help.

Mary,

All of us here started off as being "me me me", and that's what we're all here for.  This thread exists to help people just like you and to offer support and advice as much as we can.

You call for help and we will rise and help.

Don't you ever be sorry for posting here.  Over time, you will grow in confidence and experience and in turn offer help to others who will inevitably come after you.

We all start here in a whirlwind of desperation and confusion, so don't feel guilty about that.

Things will get better (well, you will cope more).

You are not alone.

Mary...Totally agree with Lynda. Keep a diary . You will quickly become swamped by who is who and when they are coming. Take all the names and  direct phone numbers. Lynda is also right when she says that you will learn to become protective and find the strength to speak out. This is not our normal "reserved  and wait patiently world" now. Dont be afraid to let them see you upset and knackered.

If you are on your own you need to get a community alarm because despite all your efforts there will be falls and speaking from experience you will never be able to get Mac onto the bed on your own..and you have to leave the house at some point. If they wont give you one for a while..you have to phone 999 to get ambulance. It beggars belief that Mac was sent home without the meds administration sorted. Do you have any relatives that can help you out until a package is in place? Even to let you rest?

We never mastered the bed pan either and it was a hoisting situation every hour ....you will get used to the "false alarms". I think this is a primal dignity thing and there is a fear of having an accident. I also realised that Mark could become quite aggitated and it usually resulted in a bowel movement eventually.

Our Carers also varied greatly. Some would be happy to do anything, some just wanted tick the box to say they had been there, some refused to use the hoist because it was "dangerous " with just 2 of them( I was doing it on my own...with varying accidents) . Some did not want to do any lifting. Some wanted me to be with them helping.

Pam seems to be in a good area for care. I never had beyond two visits per day, no respite and no through the night care. My 18 year old son was with Mark through the night doing meds ,cleaning and lifting his Dad on his own onto the commode throughout the night  so I could get some sleep.

I hope you get something sorted soon. It will be a nightmare but you will get into a routine of sorts. Just tackle one day at a time

P.S  Has anyone heard from Anne? Is Dan ok?

Love and hugs

cathix

Well said Pete.

Cxx

Mary Mary Mary Mary!!!

I am crying with despair and frustration for you. How dare they treat you both in this awful way!

I'm afraid the guys are right. As Tony would have said to me, I am saying to you, you're going to need to 'Grow a pair!!'.

Care agency staff - the truth is that the people who provide the carers run a very very lucrative  employment agency, it's also a competitive business, there's a lot of them out there. So the ones that have contracts with Social Services will not want negative feedback given to Social Services about them. Their contracts are renewed annually and reviewed continually so they won't want to risk losing their golden goose. Once they understand that you are the type of client that is happy to complain to Social Services you'll be surprised at how 'attentive' the carers become. I made it very clear to the agency from the start that I was in constant contact with the PCT (we didn't go through Social Services as Tony is funded through Continuing Care) and I let them know that I'd complained about a couple of things that the agency had overlooked. It didn't happen twice. If these carers are rushing through their time with you it means that the agency are probably not employing enough staff to meet demand - social services will want to know about that. It will, without doubt, be a penny pinching strategy by the agency owners who are behind the scenes swanning around in their fancy cars no doubt. The good carers will thank you for it though as it may mean more staff on the books and less rushing for them. Also Social Services will want to know they can trust the agency to go in and administer an acceptable level of care to elderly patients who are perhaps less likely or able to complain. So pick up that phone and start playing the game. It's horrible that you have to but I'm afraid it sounds very much like you do. At least to start with until they realise you aren't the type to be messed with.

The guys are right - you need to let your guard down. This is no longer the time for the polite sensitive approach. You need to get your hobnail boots out and start kicking some NHS @ss! You have nothing to lose and everything to gain. I think we all try to put on the bravest 'I'm coping marvellously' face. Sometimes NHS staff have been there so long they lose sight of who should be at the centre of their work, namely Mac. So you are going to need to remind them. You need to be wandering around in your dressing gown with tears streaming from your eyes and waving an empty vodka bottle around with a fag in your mouth, shouting at the moon! That'll get them going. I did the 'look at how efficient I am' thing for a while until one day I broke down and suddenly it all changed and I got loads more help. Should have done it so much earlier.

Where do you live Mary? Honestly, I am so tempted to come over there and box a few ears myself I'm so angry for you! Maybe we could get a team of WTBT Super Heroes who could swoop in and bang a few heads together on behalf of those too exhausted to fight alone. 

Pete is right, we were all at this stage at one time. Don't be worrying about the 'me, me, me' thing. That's just daft. I wish I could show you some of my early posts on here. Moaning? If it was an Olympic sport I would have won a gold. I was in such a state when I first arrived on this forum I think I had birds nesting in my hair. I went for about five days in the same clothes without washing! And, if you think my posts on here are long and rambly now, blimey, I was putting chapter headings and page numbers on at one point. Think I even included bibliographies too.

Anyway, now I'm just being daft! I hope today is a better day for you. 

Love to all on here who need it. Which is all of us of course!

Pam

x