Making the most of it

User

Posted 04 Apr 2019 at 08:06

Kentish

oh my word, I am in floods of tears here at what you are going through, how in a civilised society can you be expected to cope with someone so seriously ill on your own. Like you say, it’s not even the cari aspect, it’s the medical care that is so frightening to deal with. Can your hospice not offer Hospice at home? My sister was offered hospital at home until she was admitted for the last time and died, it was a huge help as she hated hospital but needed medical care, although she had no one at home (she was widowed at a young age). Several former members here have had Hospice at home and I know it is offered locally. You need so much support to care for someone so Ill at home. I do wonder how PIP could possibly pay for night care, I imagine it would go on one or two nights’s care. I can’t believe it is meant for that, it’s meant to be the additional costs of care but surely not that. I am so sorry N didn’t continue with the Enzalutimide, but I think he sounds like he has given up and who could blame him. Being told you only have a short time left maybe makes you think (in lucid moments) that it isn’t worth extending a life that is so poor. I know it’s worked wonders for us, although it hasn’t stopped the pain so I don’t pretend it will last forever but I live Day by day and try to enjoy. I know the time will come, as it has for you the last goodness knows how many months, when you live Day by day and enjoy very little. Your poor son, the break up is rubbish timing and yet he probably has no space left in his life for anyone else at the moment anyway. My heart breaks for him and what he is enduring at such a young age. So much for you to care about Kentish, the immediate issues with N and the longer term impact on your lovely children. I do hope the educational teams will support him through, both Lyn and Ulsterman are great fountains of knowledge when it comes to these matters, thank goodness we have lovely people like that here.

Enough rambling, I hope this gets sorted out for you, I only wish we could rally round and help you out. Such a tough time for your family. Damned disease.

My love goes to you and the children,

Devonmaid xxxxxx

User

Posted 04 Apr 2019 at 20:55

DM, thank you, I'm with you on every point. Having found the average rate of night care is £15/hour, there's no way PIP would cover 2 nights a week.
Anyway, p**s poor communication again....the local provider of services MCH, do indeed provide night sitters and a referral has been made and hopefully at least 1 night will be in place for next week. Continuing Care wanted the diary etc but it is the CCG for our area who provide the carers not Continuing Care. A little infuriating to say the least! I can't be the first person to have asked for this service..I would have thought both Continuing Care and the hospice team would have known. I have spent a fair amount of time alternately worrying and arranging an army of friends to take turns. ..all unnecessarily, hhhrmmmph.
And so he is home, I have administered optiflow bladder flushes, various controlled narcotics and also a fragmin injection, changed him several times, used a slide sheet on my own and tried very hard to squash the palpitations in my chest. We have watched the pilot episode of a series called the umbrella academy, weird but we liked it, and eaten Maccie D's with the kids. We will be ok. I hope he bl**dy sleeps!!
But no sign of any carers, I truly cannot be ars*d to deal with it tonight, I shall ring them in the morning to find out what's happening.....ffs, why us???

User

Posted 04 Apr 2019 at 21:50

Sounds like someone needs to sort out what help should be there. This should NOT happen. So sorry. Hugs

User

Posted 05 Apr 2019 at 05:14

I’ve experienced first hand how hard caring is. It shouldn’t be done on your own as you’ll end up crocked. I’m determined I wouldn’t want this on my wife ever when it comes to it. Sending wishes as ever. Awful situation x

If life gives you lemons , then make lemonade

User

Posted 05 Apr 2019 at 06:19

Hi Chris, I don't think anyone would want this for their spouse, however, I love N so very much and I wouldn't have it any other way (the caring). I would of course give my left arm for paperwork, admin, communication and organisation to not be how it is. It makes life harder than it needs to be and detracts from the precious moments we could be having.
The carers rung last night at 9.45, we had been allocated the 7pm-11pm slot, again, this is down to cr*p communication. We were expecting to see someone from the 3-7 slot. As it was, we had a nice bit of family time and that's what was important about N coming home.
I'm not sure how best to put it but if I wasn't looking after N, I'd feel like I wasn't properly being his wife and loving every bit of him, no matter how grimy this is. I'm glad he let's me.
7mg of zopiclone meant he didn't move from 9.30pm until about 5.30am, we're just enjoying a coffee and listening to the kids get ready for the last day of school, then I think, maybe episode 2 of the umbrella academy ;)

User

Posted 05 Apr 2019 at 17:54

(((((((((((((((HUGS))))))))))))))))))))

Bri xx

User

Posted 05 Apr 2019 at 18:21

The Zopiclone is a great idea. I take the 7.5ug also. It’s not a sedative , it just trips you into the sleep cycle but is ruined if you are awoken by noise etc. May be a silly suggestion but when I desperately need sleep I use this but put ear plugs in also. Would this be an option for you ? We are all so proud of you. You may feel like you are cracking , but all we can see is a Lioness as proud and strong and capable as any living thing. You are an amazing wife and mother x

If life gives you lemons , then make lemonade

User

Posted 05 Apr 2019 at 18:34

I second that

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Apr 2019 at 19:06

Can I third that

User

Posted 05 Apr 2019 at 20:18

Aw shucks guys😢😢😢😢

1st night sitters will be next Wednesday 10pm-6 am, carers have also been doubled so 2 come 4 times a day.

Chris, he's so deaf he doesn't need an ear plug! We live in a no through road, so only the sound of people parking their cars or trying to turn around...the noisiest thing is his air mattress!

Xxx

User

Posted 05 Apr 2019 at 21:05

Thank goodness he’s home in the loving care of his family. Your love shines through, but what an ordeal, as you say it feels like a battle just to get the support you need. It’s so wrong, you’d think everyone would be rallying round, but no.

On the plus side, nice to hear you had some family time, having people in and out is intrusive, you can’t win really can you?

Here’s hoping for a quiet weekend for you all.

with love

Devonmaid xxxx

User

Posted 05 Apr 2019 at 21:23

Dear Kentish , I think Chris j and Devonmaid spoke for us all ,you are such an inspiration and stronger than you think.
Best wishes ,thinking of you and your family.
Debby

User

Posted 05 Apr 2019 at 21:49

I can totally echo the above comments. You are doing so well,I’m sure N will be very proud of you. Keep going xxx

User

Posted 06 Apr 2019 at 00:24

Oh, Kentish, everyone is right, you are doing a magnificent job. Glad you had a quiet morning - coffee and listening to the kids getting ready sounds perfect. And a night's sleep (at least for N, but did you keep waking and listening??). And yes, I know why you feel the caring is part of who you are, and of who you and N are. But I also know how hard it is. The physical stuff is one thing - your comment about the slide sheet took me back - I never managed to do that on my own. The mental stuff is another dimension entirely - the never ending worry about every decision. Apart from the carers what other medical support do you have coming in - district/community nursing? palliative nursing? sympathetic GP? They can all make a difference in making you feel (at least temporarily) a little more in control.

I am sending my usual love, hugs, and am here with a sympathetic ear if you need one. And I am wishing you more snippets of quality time with N at home, with the family. Hold his hand as often as you can, and let that imprint on your brain.

I am doing OK - grown up granddaughter is with me until next week, and we are enjoying getting out and about. Still numb, I think, and may fall into a hole after that.

User

Posted 06 Apr 2019 at 07:29

Wonderful wonderful wife. Thinking of you.Geoff

User

Posted 06 Apr 2019 at 09:00

Kentish

You are one of our real troopers, even with all the issues you are dealing with you still give consideration to other members. Keep going gal.

Thanks Chris

User

Posted 06 Apr 2019 at 16:25

Thanks lovely people, to be understood from a personal perspective makes a difference. Professionals can come across as "removed", they seem very pleased that their slice of N's care is in place but don't relate it to the reality of looking after someone at home pretty much most of the time by yourself. Which as you say Teacups, is mentally and emotionally relentless.
The hospice are at the end of the phone and under them come the palliative care team. The Community /District nurses are due to come on Tuesday, I could have requested they administered the fragmin twice daily but N said could I do it as then we wouldn't be waiting for people all the time. I'm a little nervous that I'm doing it right but the nurse will check on Tuesday. I would have quite liked a nurse to look at him twice a day for the security but I can see how N is fed up with being monitored.
Our gp has not once been proactive in N's treatment since his diagnosis. They are very accommodating and always listen to me but I think it will be me making contact rather than the other way round. Having been with the village surgery for over 20 years it might have been nice to have had a courtesy phone call to check in that we were ok but they prob ably don't even know we are home. The discharge letter from the hospice will probably arrive next month!!!! I hate getting letters a month after the clinics, it's so tasteless when each have arrived to say what is going to happen with treatment and N has already been readmitted to hospital. Quite distressing to read them during the next "crisis".
We've had a room reshuffle today so N can see out of the window, there a lot of foot traffic past our house, mostly neighbours and he's enjoyed giving a little wave (we're pavement level) as they go by. He seems about the same and that is ok. First day of easter break and the kids are chilling in front of the TV with him. He occasionally nods off while it's on but they don't seem bothered, they just press pause and go back to their phones!!
I don't ask for much I think but a few more days like this would be very nice indeed.
Teacups, sending hugs across the water, that hole will have a sandy shore and you'll be able to walk out of the depths, we'll all be here for you when you need us to be. Xxxx

User

Posted 06 Apr 2019 at 20:52

You are a brilliant Mum and wife and however bad everything must seem at times, you will treasure all those little moments of calm and having a bed where neighbours can be seen must bring some comfort to N - as if he is still part of the world outside.
I remember that we wrote to our son's school as he was doing gcse's at the same time as his grandfather died of pc. He coped and got pretty good results and the school were very supportive . Children do seem to cope although you always worry about them so much.

I can't tell you how much I admire the way you are coping with all of this - sending prayers for some good sleep to give you strength for each day. x

User

Posted 06 Apr 2019 at 21:11

I truly don’t know what to say other than you are doing an amazing job. Take care and hopefully you will get to enjoy more days like this.

User

Posted 09 Apr 2019 at 20:19

Well, we managed to have almost a week at home. Pain relief has been increased to 50mcg fentanyl patch, he has edema in his hands and feet, hardly eaten and hardly drinking because he's mostly asleep. A temperature this morning and loads of phlegm have indicated either chest infection or mucus build up. Either way, both the community nurse and the palliative care nurse felt that moving back to the hospice would be in everyone's best interest. So he goes back tomorrow, he's so tired he's just accepted it. I asked him if he wanted to change his mind and stay at home but he was definite in his choice. I feel robbed of the peace and quiet at home; although it's mentally stressful, it's calm and quiet in our house.
I am glad we managed to have these few days at home which were nice and we managed to spend some time together as a family. Xx

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