Anyone any experience of extended hospital stays? Advive needed for both the patient and the patient's dw

[TigerFeet]

DH has been diagnosed with a condition which means he's more or less bed bound and will be in hospital for a while, here.

I'd really appreciate any tips to get us all through the next few weeks.

How can dh fill his time? He's not much of a reader and hates word puzzles, sudoku etc

Should I think about taking leave of absence from work?

I'm sure I have more questions but my brain is a bit overloaded atm

thanks :)

Can he have a laptop and surf the 'net? A Nintendo DS or similar?

If I were you I'd try to carry on as normally as you can wrt work- will he need help/care when he comes out of hospital? If so, try to save your leave for then. My Dad had a long hospital stay a few years ago, and it was hard for him and my mum. They got through it though.

If you can, try to set up a 'rota' of family and friends for visiting times...no point everyone coming at once and only seeing him for 5 minutes each, and then no one coming for a week.

Not read your backstory, but wishing you both lots of luck.

First of all, giant hugs. That must be very tough.

I have never been as stuck as your poor DH is, however, I was on crutches for six weeks and was, to a degree, immobile. At the time I also found pain a major distraction from things like reading.

I grew to love audio books and boxed sets of TV shows - I watched most of the West Wing for example. has he got, or can he get, a tv in the room?

An Ipod would be a must, I think.

Might you be able to book some treats for him, e.g. someone to come in and give him aromatherapy or something to break up his week and make him feel better.

For yourself, given this a long haul, I would be wary about leave of absence right now, saving that in case DH gets worse and is needing your there more hour in the day IYKWIM.

As the hospital for their advice too, they may have teams who can help.

Good luck, and hoping things don't as you fear, get much worse before they get better.

If you can get a laptop that you can take home overnight and fill with stuff from iplayer/rip DVDs to it (it will take less battery to play from hard disk too) that would be good (maybe a friend would sort out the dvds for you initially - if they got an external hard drive, they could get loads on it without needing the laptop).

When he's not in HDU, he may be able to surf using a dongle - depends on hospital policy

I know you said he's not much of a reader, but a Kindle is light and very easy to operate with the least strength, and can even read books to you - might be worth thinking about

set up a Facebook group, and ask everyone who knows him to set up a rota so that he has a visitor each visiting hours - you could say that the family will have half the time, so if friends could do the other half, it would keep things going for a long time.

Little treats like someone bringing in a Starbucks (DH did that for me when I was in, which was really lovely) or an ice cream helps relieve the every day the same thing.

Posted on your other thread too.

Before rehab my Mum was in hosp for 6 months (so a year in total) but was very ill lots of that time so it was just a case of going from day to day.

For you i would say spreading the load of visits/taking things back and forth/etc is very important, it was down to me as i wasn't working & my brothers when they could, and it was hard work.

Things like taking in pjs from home, bringing home washing, etc. Made her feel better to have her own clothes on - appreciate not always possible.

We also made sure the hosp knew to ring me anytime if she was upset (the drugs did funny things to her mind at times) - again may not be practical for you.

We/I also learnt as much as poss about the drugs/tests results so i could 'help' (in a minimal way) with her care, meant we didn't always have to wait for a nurse to come for some things.

Tv time a definite. Mum found the longer she was in the less her mind seemed to want to do things that required concentration so although she loves puzzles she didn't want to do any as time went on. More mindless activities suited her better.
And echo the idea of breaking up the monotony - that is the real thing to worry about, so birthdays/special days do something different, bring in something different.

Allow for crazy food & drink demands too :)

posted this on the other thread in Chat, but more suitable here:

tigerfeet I don't know if this would be any use to you. It's a site called Lotsa Helping Hands which my friend used when her mother was very ill and in hospital for a long spell last year. Please don't be put off by some of scary words on there, it can be very useful on a practical level.

What she found helpful was that her family could put updates on it so that people would check that rather than calling or emailing to see how her mum was, and there's a message board as well for all signed up to it to check in and say hello, and I know my friend's mum loved having it all read out to her, it was a real morale booster for her when she was still in hospital! I think you can also coordinate things like hospital visits from friends and other family members (you can mark visit times that are free for people to book themselves in), school pick ups and who's going to drop meals off for the family, a great tool if you need it.

Anyway, just thought I'd let you know. Sending good healing vibes to your DH and {{{{hugs}}}} all round

An MP3 player with music and audio books.
Some pictures (photos, hand drawn stuff by DCs etc) where he can see them (i.e. not pinned up behind the bed).
Bring in some nice food to snack on, things which are quite light but very flavoursome.
Try and bring in a 'bed picnic' on a regular basis, make it a nice meal that you share together as a couple (not just him as patient and you as carer).
Also have some cartons of juice etc. which can live in the bedside cabinet.
Try and make sure that he has a visitor every day at the same time - he'll be bored and will really anticipate visitors. It is awful to be waiting and hoping someone will arrive, but not knowing when or even if it will happen. If the arrangements are going to vary from day to day, try putting together a little plan a week at a time so that he knows what and who to expect.
Feeling clean and tidy can make all the difference to how you feel - your DH may need help with shaving, hairbrushing etc. and find some nice wipes for cleaning face/neck hands to freshen up with if it's hard to use the shower facilities.
Have enough pairs of PJs so that you can be bringing them home to wash while still leaving him with some clean pairs. He might prefer to get dressed in the morning (especially as he begins to recover), so some joggers and T-shirts might be handy (yes, I know they look like PJs, but he wear feel more normal wearing 'proper' clothes in the daytime).

Make sure you look after yourself, if you could make some alterations to your work patterns (maybe reduced hours so that you can be available for the whole of evening visiting time) it might make you feel less stretched.
If there are other people (in-laws, good friends) who are happy to visit, then try setting up a rota so that you get some time off - try and schedule some 'normal' social events. It will make you feel better and give you something to talk about while visiting.
Accept any offers you get from people wanting to shop/cook/clean for you.

Ask the nurses about special deals on the TV cards for long term inpatients. There may also be some sort of parking fee discount for you going to visit him. Hope he's better soon.

{{{TF}}} & {{{MrTF}}}

So sorry to hear you're going through tough times, apart from the worry of it is must be exhausting looking after the girls, working and visiting dh.

Most people have mentioned it, but take offers of help whenever you can.

Sod the housework.

Keep an eye on dh's care plan and speak to the Consultant whenever you can. Nurses are often very knowledgable to a degree, but it's the Cons you want to speak to/pin down to get answers.

Make sure the ward know it is acceptable for them to contact you at any time.

YY to the personal grooming. When he is in HDU the care will be higher, but if you want to get involved speak to the nurses and tell them you do otherwise they will assume you don't. WHen he goes onto a 'normal' ward the level of care wil be lower and you will probably have to get a lot more involved.

Don't assume anything. Always question and ask questions. You don't have to be a pita about it (although sometimes that is needed!), but make sure the nurses/dr's are left in no doubt that you are on the ball and watching dh's back.

If I think of anymore I'll be back.

Sending you all strength and healing vibes xxx

Thanks everyone, I really appreciate your ideas.

He's currently in HDU so no tv or gadgets allowed - he only moved there last night, until then he had telly and internet and access to his phone.

He's being moved to the nearest Neuro unit in the next couple of days so we'll have to see what facilities available there. It's a good 50 miles away so that's going to make things awkward. Slightly annoyingly (although small fry in light of his illness) we'd just paid for long term telly/parking permits and it looks like we won't need them.

He's asked for recent pictures of me and the dd's - I'll get the IL's to take some tomorrow as it's usually me on the other side of the camera

He's diabetic and his blood sugar is all over the place so what he's allowed to eat is being strictly controlled. He doesn't have much of an appetite atm anyway.

When he goes to the Neuro unit he's going to be a long way from his friends and family, PIL's and I will organise a rota. I have no idea whether the dd's will be allowed to see him there.

Fab idea about the kindle reading to him - he got me one for Christmas I shall get some dull books about football or something downloaded on to it for him.

His ipod is in the car ready to take in tomorrow

I have NO IDEA what to do about work. How on earth am I going to do a 100 mile round trip a few times a week, keep the dd's as normal as poss and work three days a week as well? I have next week booked as annual leave so I'll see how it goes and decide later. I have a history of depression and although I'm well at the moment I really need to make sure I don't overextend myself or I'm going to end up ill.

I have every intention of taking up offers of help, of which thankfully I have many. Womma that site looks great, I have registered and may well use it, FB might work too but I do have friends that are FB refuseniks so this could work better, thanks so much.

Lemur, thank you, I have been asking many questions and I have loads of info. DH has been sticking up for himself too. I haven't forgotten that I owe you a parcel and it will be with you before the baby comes I promise

That sounds like a complete nightmare for you to try and manage everything. I'll be thinking of you and hoping all goes smoothly.

Have you spoken to the Cashiers Office or PALS at your hospital to see if it is possible to get a refund on the parking and telly as your DH is being moved rather than discharged?

The updating of people website is a great idea, wish it had been around when Mum was in hosp, the absolute last thing we ever wanted to do getting home for hours at the hosp was ring round relatives and update them all. Especially on bad days.

How old are your DD's? Can you arrange extra childcare for the next few weeks/months? after-sch clubs, friends to pick them up on your non-working days so you have longer to get home?

Sounds like a challenge having him moved so far away :(

TigerFeet

I would be speaking to your employers asap or at the very least the personnel dept. Your employers ought to be thinking about granting you compassionate leave. Seems a bit harsh to perhaps having to take time as annual leave.

Would claim a refund on the parking and tv permits from the PALS or cashiers office as your DH has been moved onto another unit.

Be kind to yourself and do accept all offers of help. Do not be afraid to ask for help and or support as and when needed either!.