Update on being home: Well Ralph... - British Heart Fou...

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Update on being home

Gardenview10 profile image
61 Replies

Well Ralph arrived home at 6.30 Mon night. Our front room looks a bit like a hospital room with a suction machine and a nebuliser machine and all the paraphernalia that goes with them. A HUGE bag of meds as well. Monday evening was just chilling and spent sorting out what meds were needed and crushing or dissolving depends which they were all mixed with water to be administered through his RIG.

Nebuliser before bed and trachy tube cleaned and ready for bed.

I'd bought a wedge pillow and only needed one other pillow with it and he slept well. Me, not so much as couldn't stretch out much but it's got better over the week, I've got used to basically being in one position.

Tuesday was a nightmare, we were up at 5.30 and I didn't really sit down until 7pm.

Just a round of nebuliser, meds, making pureed meals, loads of washing up. Phone never stopped ringing with different departments checking up and making appointments to visit him.

Only walking he did was up and down stairs to bathroom which was fine for his first day back.

Wednesday we stayed in bed until 7 then Ralph cleaned his tube and had a nebuliser, he has one in the morning and one an hour or so before bed.

Touch wood and fingers crossed he hasn't needed suction yet.

I had a talk with him on Wednesday that if he expected me to go at the pace I was going on Tuesday, I'd probably be dead in a month. He didn't want to walk or do anything at all. I said if you want a cuppa you make it and I'll carry it in.

Finally got him to do some steps on the path under our front window, he's only doing a quarter of the distance he was doing in hospital. I said if you're just happy you're home and got your TV and Xbox and not interested in working to get more mobile, carry on, but I'm not going to stay in forever because you can't get to the pavement for a taxi, or eventually to the bus stop. He says he wants to be more mobile and will do it, but this morning he refused to walk again.

Trachy nurse visited on Thursday and says we're doing great, she gave him an HME with a speaking valve attached so he doesn't have to change them.

RIG nurse came on Friday and watched him change the balloon water himself and says that's fine.

GP has authorised his prescriptions and we have an appointment there on Friday afternoon next week, taxi booked to take us.

I feel helpless and at the moment just hate myself because all I can hear is me nagging him that he has to make some effort and I can't do it for him. Lovely as it is to have him home, now he is home, it's as if his goal was to get home and he's done it so give up and live like this now.

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61 Replies
Tos92 profile image
Tos92

Fantastic to see Ralph home, albeit there are more things to do at home now to ensure he is receiving the correct care and can be kept out of hospital. Have you considered arranging for home help at some point? I wonder if having carers come in a couple of times a week would help take the stress and load off you a little bit.

Keep going. You’re both doing great!

Tos xx

Gardenview10 profile image
Gardenview10 in reply to Tos92

Will be no need for home help or anything, I'm managing now I've got a routine, I'm just so frustrated that he's happy to be home and doesn't seem interested in doing more

Tos92 profile image
Tos92 in reply to Gardenview10

It sounds like he will need some time to settle back in after spending so much time at the hospital. He probably also has some anxiety trying to return back to normal life and perhaps not knowing what he can, and can’t do safely yet.

I’ll be rooting for you both and will look out for any future updates.

Take care of yourself too, Sue. X

Lilypocket profile image
Lilypocket in reply to Gardenview10

I have been reading your posts and so pleased your husband has made it home. What a great photo. I agree with the post above that maybe getting a bit of home help will help you rest sometimes and make him realise what an epic job you are doing. You are so efficient he probably doesn't feel he has to make an effort 🙂 I think he is just enjoying being at home but I'm sure he will be making you both tea soon !

May his progress continue .

I wish you both the best! x

Traveldreams profile image
Traveldreams

I can relate to this. Took Dad a while to have a new aim. He’d met his goal and until he adjusted to a new goal it was tricky. My mum used to leave for one hour per week to get a taxi to shop and he was literally timing her absence. It did get better and will for you. You both have a form of PTSD following the strain over the last few months. Dad did eventually acknowledge that he had fought a battle and it had to offer more than sitting in a chair.

Keep sharing and take yourself off for breaks when you can (even if just a bath or a sit on the bed).

It’s a great picture but tell him we’re all waiting to see him gardening!

Much love xx

Gardenview10 profile image
Gardenview10 in reply to Traveldreams

Me too, lol after shopping has been delivered I'm going in the garden for an hour just to potter and get some fresh air

Great to hear from you and can I please send a hug to you and a kick up the backside to Ralph. I wonder if he's actually a bit unsure and unsettled about walking, perhaps wondering about the 'what ifs ' without the back up of the hospital around him. Can you talk to a physio? Will he have ongoing physio visits at home? Do you have an occupational therapist involved? Perhaps the GP can arrange for a community based team to visit us hospital is unable to provide.

My guess is that it's all to do with confidence and as we know men aren't great at admitting that they've lost confidence and then it becomes easier to say no than try. He's probably finding the change quite tiring? Maybe set a deadline of the 1st July to get going again. Xx

Gardenview10 profile image
Gardenview10 in reply to AmandaLouise77

I've told him to relax over the weekend and then aim for some steps morning and afternoon, only up and down the path a couple of times. If it's raining he can do from front door to back door through hall and kitchen a total of 22 steps from door to door

Yumz199725 profile image
Yumz199725

Aww so happy to see Ralph is finally home, aw your doing so well but try to look after your self aswell x ❤️😉

Cassiedogoman profile image
Cassiedogoman

so lovely to see Ralph at home in his own chair and familiar surroundings , hopefully he will start to do a little more once he is confident. Its easier to try doing things like walking when your in hospital and have many people around to help you. Early days yet but your right you cant do it all. Thankyou for the update

Cavalierrubie profile image
Cavalierrubie

Thank you for the lovely photograph of Ralph. It was good to see him at home after all this time and what he has been through. He made it, bless him. It is a big transition for him, and yourself at the moment, and l expect he needs time to get his bearings and into a routine with you. It must be nerve wrecking for you with the huge responsibility, but l am sure it will get easier as time goes on. I think he will need a bit of time to get his strength back, so get all the help you can, and which you are entitled too. It’s time, that you both need, to get sorted out, and for Ralph to get strong again. It’s very early days. God bless to you both.

Greenthorn profile image
Greenthorn

HI Ralph - that's fantastic! What a shirt. What jazzy hands. What a handsome face! God bless you sir. There'll be more from me later but I could not help but throw this comment in before I nip out to my brothers for a BBQ with nephews and nieces and grandchildren. I will certainly celebrate your arrival home with a drink. Your picture is MAGIC!

Thanksnhs profile image
Thanksnhs

Hi Sue, it's so lovely to see Ralph home and smiling after all these months being in hospital. When I got discharged after my transplant I was scared that if I done too much something would happen ( I lived alone) and I wouldn't be able to get help whereas in hospital I felt safe with my team around me and I had my lovely physios to take me for walks every day. I was scared of the stairs taking a shower and going out. Eventually I did give myself a shake because after all the care I had in hospital I wasn't helping myself to basically my life back and it was then I got my stick and walked a wee bit every day till my confidence started to come back. I am sure Ralph, once he settles back home will will be very determined to start walking again and with every step he will want to do more, with yourself to help and encourage him I am sure he will want to try and do as much as he can by himself. Take care char x

Spanl5 profile image
Spanl5

Thanks for the update Sue, and the photo. It is early days for you both to get used to Ralph being at home and finding what works well and what doesn't. It will get easier as time goes by and confidence grows. All the Best to you Both, look forward to the next update. Jan xx

Qualipop profile image
Qualipop

I'm glad to hear he's home and from the pho to, delighted to be there but I suspect he's feeling lost without all he physio input and scared to try things in case he gets taken back in. If after a week he's still not doing enough , ring the hospital for advice. Maybe he needs some physio at home just to get him moving and improve his confidence. It's a massive change for both of you. Make certain you get enough sleep and try to stop worrying. You are not his nurse or doctor - call on the professionals for help. Once he's come round a bit I'm sure he will realise it's down to him now. Can your gP not prescribe liquidised meals for a while to take one of the jobs away for now?

Shabana1974 profile image
Shabana1974

Sending hugs, it will get easier. Just needs time to find the rhythm that works for you.

Bishop1 profile image
Bishop1

What fabulous news to have Ralph home again. Take care of yourself. He needs you. It will take a while to get used to be back too his own surroundingsHe bound to be very nervous without all the hospital support

Good luck with his recovery

Happy times ahead x x

BlueGreenPink profile image
BlueGreenPink

hi Sue, thank you for the update and the photo - Ralph looks really happy. It’s wonderful news that he is home.

I completely understand your current focus. My husband had open heart surgery last year followed by complications afterwards. When he got home, I found any messages I needed to get through (like walking around) were only acted upon if I could get a medical professional to relay them. We did have a cardiac nurse allocated for a while and she was excellent. So it’s great that you are getting good support.

I agree with everyone else - take time out for you. Get outside in the garden even if it’s to sit in the shade with a good book.

Thank you for the update Sue x

Digger0 profile image
Digger0

Really glad to hear from you and to see Ralph home ! He's probably just getting used to being at home, but tell him if he sits down too much he'll get a sore bum ! Also tell him we did not all route for him while he was in hospital just for him to sit down all day at home :) I'd try and get a routine going of regular walks - same as he was doing in hospital ( and maybe leave his book/drink/paper a bit further away so he has to move to get them , but that's the old physio speaking!)

ETHEL103 profile image
ETHEL103

Your doing great Sue.I know personally how hard it is.x

Lezzers profile image
Lezzers

So glad to hear Ralph is home, you must both be over the moon..

Being a carer is incredibly hard work, it's scary, it's a 24/7 job without help or any real medical knowledge if a problem crops up.

Please reach out/accept any help/support family/friends/neighbours are able to give or want to give, this will help you help Ralph more without wearing yourself down. But most of all, be kind to yourself, you're an amazing person x

Purpled profile image
Purpled

Awe, don’t be hard on him just yet, he has been through such a huge ordeal and coming home is going to take a lot of getting used to. He will also start processing what has happened to him these past months and it will be hard to come to terms with and move on from it. Being in a coma and losing chunks out of your memory must be so hard to deal deal with. Anyways that’s enough of my lecturing, it’s great news that he is back home and he looks so much better than I expected. One day at a time your over the worst part Ralph its now up to you to get yourself as fit as possible and Sue get yourself half an hour or so in the garden for some fresh air cause you need to keep yourself healthy as well. Wishing yourselves all the very best xx

Gardenview10 profile image
Gardenview10 in reply to Purpled

I know, I do feel a complete and utter *****

Purpled profile image
Purpled in reply to Gardenview10

No don’t feel like that it’s just a time of adjustment for you both x

Qualipop profile image
Qualipop in reply to Gardenview10

NO YOU ARE NOT. You've been a complete rock while he's been in hospital and now you're scared and you're worn out. You've had a massive responsibility thrown at you and you are worried sick about the future and whether you're doing things right and frustrated that he's not apparently making an effort. He's scared too although he won't admit it. He will probably benefit from a kick up the bum from a physio because if he's anything like my husband he won't listen to you. I remember how scared I was after my heart attack- nothing compared to what you two have been through. I was petrified of even walking down the drive on my own. I needed someone with me all the time - just in case! It will take time for him to get his confidence back without all the medical support around him. Please talk to your GP about yourself as well as him.

Cat04 profile image
Cat04

Great to see Ralph back at home. It must be quite an upheaval for him being out of the routine of the hospital after all this time. He'll take a while to find his feet (and get out from underneath yours 🤣). It is also a new type of worry, schedule and responsibility for you both.

Look at what you both have overcome already to get this far and you will continue to achieve yet more.

Love & best wishes to you both xx

weepip profile image
weepip

So nice to see a smiling Ralph home with you 😊 I found it hard when I came out of hospital and felt ill with infections, its very easy to sit in a chair or bed and feel sorry for yourself when there's no physio nagging you to get moving. It probably took me 5-6 days to realise its only me that can get me stronger. My husband wants to fetch everything for me and I've had to explain I need to do more for myself. I've slowly been do extra rounds in the garden to build my strength up and am getting stronger every day but it is hard to get yourself in the right frame of mind. So don't feel guilty about giving him little (or big ) pushes to be more independent sometimes it take a little while to realise we can do it .

Hopefully as he gets more settled at home he becomes more positive you have both been though so much xxx

WoodlandLover profile image
WoodlandLover

Well, what a lovely photo of your dear and heroic Ralph, and endless congratulations to him that he's made it home.

Tied for top place, is you. Equal congratulations to you too, with your untiring love that's brought him back.

You are not literally helpless, you're the key to Ralph being home. A thousand per cent help-FULL. I do think though, that expecting a spouse, at the age we are (I'm the same age as you) as the sole alternative to nursing home care, is completely unrealistic. Of course you can hear yourself expressing what you see and what you can cope with, but that's as ok, as it is for Ralph to feel a bit rooted to the spot while this huge transition takes place. He may even be afraid he falls over and ends up back in hospital, and so is demonstrating a wobbly resistance to start with.

Neither of you is wrong. They should have thought of this, done an assessment and put some transitional care plan in place to cover both of you. Some carer help with Ralph and home help for you, including meals on wheels for you, and cleaning help. You can't and mustn't do it all.

It must be beyond amazing having Ralph back beside you 24/7 but would a new double bed with single mattress space each enable you to stretch out and relax at night too, because it's all vitally important. You've been through the mill as well and until Ralph's had time to reacclimatise, you need assistance as well. It's key to being able to build on where you are and maintain it.

Never ever feel bad for observing yourself. You have only said what should have been intuited by the pros before you left, but "feelings" don't come into it in hospitals. Just body parts. You stand your ground my heroic, inspirational friend. You're Worth It!! XX

Gillph profile image
Gillph in reply to WoodlandLover

How I agree with these comments!

BeKind28- profile image
BeKind28-

Hello :-)

He certainly looks well in the picture maybe he even looks better than you do at the moment with all the running about you are doing

I must say what you are telling him he needs to do is the right thing and you are strong in making sure to the best of your ability you are pushing him to do it so well done and keep going you are not nagging you are doing what you need to do to make sure he has the best recovery he can have

I hope soon he will be making you a cup of tea while you have a rest and if you keep doing what you are I think he will be :-) x

Callie456 profile image
Callie456

Hi Sue, there's a lot of change for both of you to get used to after so many months essenially both living a different version of a 'hospital life'. It's going to take awhile to settle into a 'home routine' again together.After any significant period in hospital or a rehab hospital, people become 'Institutionalised'. They become more dependent, less independent and it's natural for them to expect everything to come to them & be done for them, just like it has every day in hospital. I think it's partly subconscious really. The nurses do checks & bring meds, the kitchen staff cook, puree & bring meals, the cleaners clean and make the beds, the physios come to run through exercises. But it's important to recognise that each staff member is doing their own one job, yet at home, you're probably now doing ALL those jobs yourself. Not to mention sorting out mail, phone calls, bills and hopefully looking after and feeding yourself too! And all you really want is to be able to sit and relax and enjoy the company of your husband, potter in the garden or catch up with a friend.

It's normal to feel overwhelmed, frustrated or cranky with the situation, but it's important to be kind to yourself. Yes Ralph is home which is wonderful! But at the same time, you're overwhelmed, stressed and exhausted. I understand, my mum was in and out of hospital with long stays frequently and each time she came home it took several weeks to reset back to a normal home routine where she felt able to do things for herself again. She even wanted all her meals at the hospital meal times!

If you can get help for cleaning/laundry etc that could help a bit. Also any home delivered, premade or frozen meals for yourself to save you cooking. I know Ralph needs puree, so did my mum sometimes. I used to make a big batch of things to puree, which would last a few days. Mashed potato was the easiest veggie, often I did carrot with it too. Frozen peas cooked for 30secs in a bit of water in the microwave are also then quick to mash with a fork. I'd also buy the supermarket baby food fruit puree, it's tasty actually! (But I never found a tasty veggie or meat one) Mince was ok for mum, that was the easiest meat for her. Yoghurt was good too because you can just buy it, but it depends if he's allowed yoghurt or if it's too thin.

You will get through this new settling in phase and find routines that work for you. Remember to ask for help from family and friends and take it easy on yourself, you've been through so much.

Most importantly, make sure you do make time to sit and rest, have some quality time with Ralph, watch tv, go out in the garden or catch up with a friend.

Lots of love & hugs 🫂 ❤️

Stent2024 profile image
Stent2024

great to see Ralph home . I hope you get continued support with him x

Plastow48 profile image
Plastow48

Thanks for the update. Please make sure you get some rest too you have to keep your strength up too. Enjoy having Ralph home too. Hope you find a routine that works for both of you and enables you to enjoy each others company.Hugs and prayers.

Jenny

Seal59 profile image
Seal59

Thanks for the update. Lovely to see a photo of Ralph. I hope that as you get into a routine things will settle down and get easier for you. I can’t imagine how exhausted you must be both mentally and physically. Start making time for you. I expect Ralph is nervous of walking at home without the back up of the hospital. Hopefully he will start to do more walking as his confidence grows. Take care x

Silvertail profile image
Silvertail

Welcome Home, Ralph. I understand it will be hard going for a while until you both get into a routine. Hopefully he will be motivated to start living life again now he's had a week to acclimatise. Best wishes to you both - try to take some time just for you. 🌺

Plum53 profile image
Plum53

Oh dear .. great to see Ralph is home at last good to put a face to the name. Sounds like you have got things organised at home now Sue but I understand your frustration with Ralph not making the effort to walk more steps. Maybe he needs a talking to by the hospital physio perhaps that would help. Best wishes going forward xx

RockcodN8 profile image
RockcodN8

call the doctor ahead of the appointment and have him say I can tell you aren’t walking enough and have him give the walking motivation speech.

Gardenview10 profile image
Gardenview10 in reply to RockcodN8

That's a great idea ☺️

Larneybuds profile image
Larneybuds

Good morning... fabulous to see Ralph home and looking so well after what he's been through and though it will be a relief that he's home but it will be so stressful for both of you in different ways. I think with Ralph he will be feeling very strange. The hospital has been his 'home' for some time and he has got so used to the routine there and what happens on a daily basis with doctors, nurses, physio, meal times etc . I think there is a big psychological thing when a person first comes home from hospital, especially after being so poorly and this happened with my self after my four weeks in hospital and with my partner after his massive cancer surgery followed by infection. When you first come home you feel very vulnerable not being in the safety of that environment incase something happens. It's a strange feeling and it took me a good couple of weeks to feel confident at home as it did with my partner. My medicines were a few tablets to be taken morning and evening...my partners medical things took over the whole of the utility room and lounge where he was based. After day one of him being home I was exhausted...from recovering myself plus looking after him and basically waiting on him hand and foot.... medicines taken at different times , food pureed, fed little and often throughout the day, washing him , helping him get dressed, making sure his stomach pipes were flushed ...the district nurses called daily to change his dressings and to check on him which gave me half an hour's relief at least to have a cuppa and sit down in peace. It was very difficult trying to motivate him to exercise or to do anything...he wouldn't listen to me so I had a quiet word with one of the nurses who sat and explained the importance of the exercising and trying to do things for himself...magic wand...I think because she was medically trained he saw that as a voice of authority and knowledge he started doing little things. I got into the new daily routine and so did he and though still a big worry, it got easier as the days went by. Then we had his after surgery chemo to deal with but we were ok with that as he'd had pre op chemo as well so we knew what to expect. Hang in there...it will get easier and less frustrating but the big thing with you is to make sure you take a couple of times out for yourself each day...it's a must do for your own sanity. Our ray of sunshine is that after 15 months my partner is doing so well now and is in a much better place than any of us thought he would be. It is all a massive struggle initially...stay as strong as you have been, look after Ralph in the areas that you need to look after him but insist that he needs to make his own efforts as well.....remember...this is a joint journey but your well being is as important as Ralph's. You are doing a marvellous job with him but make sure you do one on yourself too. All the best and please take care xxx

Thesnowman51 profile image
Thesnowman51

So pleased Ralph is home, I’ve followed your story from the start, it’s been scary, heartening and all sorts in between. What I’ve taken from it, is your love and determination to get Ralph out of hospital and back to some form of normality. You should be so proud of yourself and Ralph too of course.

Let’s get back to Ralph. Keep nagging him, it is all down to him at the end of the day, but a good nagging is what us men need to get motivated. I suggest that you also have a quiet word with the health professionals when they see him, to reinforce the self motivation thing. It’s like teachers and kids, they often listen more and follow a teacher’s instructions rather than the parents. I’ve been a follower of the great explorer/adventurer, Ranulph Feinnes, he says it is not his strength and physical training that achieves the goals, it’s the self motivation and determination

I wish you all the best and keep us up to date with progress; oh and more importantly get some time for yourself, you so deserve it

Dave

mesally profile image
mesally

Just give him a few days yet. I know from experience that just getting home takes it out of you, and you struggle more than you did in hospital. Things you did in hospital seem impossible. It takes a bit to adjust. Can you get any help, eg having a District nurse come in a couple of times a day, or respite via social services? Otherwise you will go down and then you are both in real trouble. With best wishes

gorillaqueen profile image
gorillaqueen

Great news so pleased for you. I can understand how frustrated you feel but it’s early days and he’s been through so much, you both have. Hopefully he’s just adjusting to being home and relaxing possibly processing it all. I should think it’s had an enormous effect on him mentally, of course you also and it takes time to adjust.

Encourage ( nag him that’s what women have to do) take each day as it comes some days will be better than others be kind to yourselves, try to get him to sit in the garden with you and enjoy the sunshine🌞 being outside will improve his mental health as well as yours.

Give yourself breaks you need them so you can care for Ralph and to look after yourself, being a carer is hard work so don’t forget to take care of yourself also. Maybe keep a little diary of his progress and your thoughts, how you are feeling. Sometimes writing it down having a little vent helps us to process everything. Do remember it’s early days and you have both been through so much together, but he’s home and I’m sure will soon be strong enough to ponder in the garden and able to go out on little excursions with you. I wish you both well and look forward to your next update on this incredible journey 🤞🤞🙏 it will be you telling us of what you have both been up to, in the garden, having a coffee somewhere nice, shopping etc. Take care ❤️🤗😊🌞X

Aqua24 profile image
Aqua24

Morning Sue and Ralph so pleased for both of you and love the photo, Sue take time for you now and tell Ralph that you are happy to have him home but you are going to have to be a bit tough on him lol and if he wants to be out in his garden for the summer he has to do his walking, look forward to seeing a picture of both of you from the garden soon sending you big hugs 🤗

DWizza profile image
DWizza

Please don’t hate yourself ❤️. You really are the engine room. You keep nagging , (I’d call it supporting) . Your resolve, strength and love to support Ralph is absolutely pivotal to his recovery. Thank you for sharing.

JeremiahObadiah profile image
JeremiahObadiah

It is so wearing having to be the disciplinarian. Nagging is not fun and sours everyone’s mood.

However, you are spot on. You running round like a blue a*sed fly and him sitting in his chair(and he doesn’t like football so can’t use that excuse but might develop a keen interest in tennis?!) is going to end up with you having a breakdown or getting ill from stress and him having pressure sores on his bottom and losing most of the progress he made in the hospital.

A lot of people in the hospital put a great deal of effort into getting him literally back on his feet. He showed he was determined and courageous when he has professionals to encourage him. You’ve given him the weekend to get his head in gear ready for the next stage of his recovery-which is now much more down to him and his inner determination.

Sadly you may have to keep being strong and strict for a while until he has got himself used to actively participating in life as much as possible and being your partner in this rather than being your patient.

Pressure sores are no fun -my aged mother in law refuses to get out of her familiar chair often enough and ended up having her pressure sores treated. Undignified and uncomfortable!

Blearyeyed profile image
Blearyeyed

He looks so well, amazing when you think about everything.You're right you can't be doing everything and then not getting a good night's sleep , but it's also understandable that he might need time to just get used to being at home.

Although it's his house and he will love being back the change in routine and all the daily upheaval of following orders in hospital , plus the disruption of discharge will have made him really fatigued now he's not living on adrenaline.

Keep him doing some activity each day but you might need to give him a few weeks settling in time to be working at the speed he was in the hospital.

Have they arranged Physiotherapy to continue?

It might be a number of months before he's really up to moderate activity and he's going to have to pace his daily activity pretty slowly at first .

It would be useful for you to consider getting Social Care to arrange someone to come in and help with cleaning or other jobs for a month. Not because you can't do it yourself but because it's just practical to get as much help as you can to keep your energy for looking after the patient and yourself.

And get the family or friends together and work out a schedule so that they can come and visit to keep an eye on Ralph so that you get a little time to rest on your own or even have a daily nap or a walk ( remember that's relaxation time not to catch up on cleaning) . Ask others to help with other things like picking things up , shopping , lifts . If you all split the jobs up each week it will be easier on you but won't be inconvenient for them because they'll only be doing their bit for a few hours each , and I'm sure they'd be happy to help you.

Baby steps but he will get there , you've both done so incredibly well , you are both an inspiration to us all. Big hugs , Bee

Murderfan58 profile image
Murderfan58

Lovely Ralph is home. But keep nagging and be blunt tell if he wants you to die first carry on as he is and be selfish. If he takes no notice refuse to make him do anything even making him a drink or give him any help. Make yourself one and drink it in front of him. He knows he can do more but won't.

He needs a wake up call he's lucky to be alive . I know of 2 carers who put their spouses first one refused to have an operation so he died first and his wife ended up in a home bedridden and lots of bed sores. Other had to to have his wife put into a home as he couldn't cope anymore but he was nearly 90 and struggled on his own for 6 years.

My own health suffered looking after others but I was 59 when my mom died after she lived with me for last 18 months. She had cancer and dementia.

Tough love is hard but you have to do it . I did it with my husband that was making him stop driving because he was going blind from the brain tumour. Plus stopping him working. You would have thought an atomic bomb went off.

While my mom still could do things I got her to do them even when the dementia made her forget what to do. So I showed her how to do things and she beamed when she did it. I exercised her limbs when she became bedridden which made her giggle. There where awful times the last 4 months where hell on earth as she became violent. But it wasn't my mom . And I couldn't put her in a home .

But you are older than me and you need to look after yourself. Because believe me when I say it cost me healthwise. But I would do it all again . You can't change who you are .

So point out to Ralph if he doesn't walk he will end up back in hospital and or a home and you won't have him home again. You both know he can do things . He needs a 🚀. This sounds harsh but I am talking from experience. After mom's funeral I became ill . Just thought life had caught up with me and it made my disability worse. What I didn't realise and couldn't see I was yellow and had jaundice. Seriously ill for 5 months only when my gastrologist is me did he tell me people with my bilirubin levels normally died. It was my wake up call my life had to change.

I would hate anyone to have a wake up call like that. The worst thing once in my life I needed someone with me 24/7 and there was no one. I had never been frightened being on my own since my husband died until then and I was terrified.

Thankfully I changed my life and never been happier. Even the estrangement with my son hasn't damped that . As nothing hurts me more than my husband dieing 20 years ago.

So tough love is needed . And please take care of yourself.

Deejay62 profile image
Deejay62

Hi it’s nice to see Ralph at home. I don’t know if this is how it is to him but I’m great walking about indoors pottering about but once I’m outside it’s exhausting walking it’s like every step feels heavier and my breathing is ten times worse but I still try and get out. I don’t know if it’s the surface or what it is. Maybe it’s a struggle for him outside especially has he’s still recovering but you’re right he has to try and do it. Ask him if it feels different outside than walking in the hospital. I don’t know if they took him for walks outside.

You’re doing a brilliant job sorting his meds and making sure everything is in place and from what you’ve written he does have to do more to improve his life x

Furryears profile image
Furryears

Ooooh Ralph it’s lovely to see you home,

But you my lovely sound absolutely drained, you are right you can’t keep going at this pace

Hopefully over the coming days Ralph will feel stronger and more confident to do more for himself and maybe make you a nice cuppa here and there.

Look forward to your next update and I really hope things will ease a little xx

Sending you both lots of love 💙🩷

Wooodsie profile image
Wooodsie

He looks well Sue 😮😊, but I get what you mean about his not doing much, that isn't good. Don't beat yourself up about nagging him. I'm sure you don't want to end up being his full time carer, and isn't fair of him to expect you to be. Stay strong x

Gillph profile image
Gillph

What a lovely photo!

Ralph must be scared witless at the moment though - terrified of moving in case anything breaks or blocks - many folk have said, and I totally agree, to ask any medic that arrives to point out that staying immobile is really not a good idea. I got my husband a set of pedals from Amazon that he could use whilst seated and I could lift them (3KG?) onto the table for him to exercise his arms. Get help for such ordinary things like cleaning, laundry, cooking - your friends will be pleased to be asked for help (do not be proud - you'd do it for them) and you can spread the load of chores around to ease the 'request' issue. Beyond a doubt you must have 10 minutes, but preferably 1/2 hour to yourself by yourself each and every day. Been there, done that and it makes such a difference. If medics can't persuade him by the middle of next week I think a rocket, screaming fit, is called for but he must be so frightened right now. As to your guilt trip? You've been and will continue to be an angel. Well done but also well done for blowing a fuse - better than bottling it up. End of lecture! Love and hugs.

baly_2023 profile image
baly_2023

❤️🙌

Warm-heart profile image
Warm-heart

Hi, you must be so exhausted and well done to the both of you for reaching this goal. I know you also wanted him home. It is a big shift for both of you and will need time to adjust. For you, working towards this for him, you have had a traumatic few months (how long is it?). For Ralph he has now to adjust to 'Oh boy, this is not how I used to be at home, I have lost so much...' - it is like reality hits home at home because you can see how different your life is now. Lots of emotions. In hospital you are not so face-to-face with this reality. Men don't share emotions readily either which makes it more tricky and more inclined to stuff them down and feel low or demotivated/ loss of energy. He can't even talk in his normal voice so vocalising how he feels is trickier I guess.... Just some thoughts. I do understand your frustration though 100%. In an ideal world as you are both traumatized by the whole experience, some kind of counselling would be helpful. Talking of which, there are places that offer free counselling for carers. Just my thoughts. And thank you for the lovely photo!

Dempo profile image
Dempo

What an amazing picture! So lovely to see him home at last! Just pace yourselves, it will take time to adjust. As others have said, I expect he’s nervous about doing too much too soon, without the backup he had in hospital. Think of it as similar to bringing a new baby home from hospital- seems endless and daunting at first, but after a couple of weeks you get in a routine!

devonian186 profile image
devonian186

At the moment I would imagine Ralph is just grateful he has reached sanctuary after months of trauma. It is less than a week since he got back so let him enjoy the relief of being back in familiar surroundings then perhaps try to get into some sort of new routine next week.

Is he able to walk to specific locations close by? A coffee Shop? A general shop? Anything to give him something to aim for.

Mfaepink1973 profile image
Mfaepink1973

Good to see Ralph is home but a lot of work for you. I sympathise with you as I went through similar with my late husband. I got carers in just to give me a break and suggest you do the same even just once a day to sort his lunch out and give you chance to put your feet up. Find out if your area have a carers support group, the one in my area was great with support, advice and even got a half price massage once a month. Accept any help offered, you need it. I’m surprised you weren’t offered The Reablement service which I understood was offered to anyone coming out of hospital, they help with whatever is needed and to establish a routine, they will probably be more insistent on Ralph building up his walking as well.

Remember you need to look after YOU or you won’t be in a fit state to look after Ralph. Very best wishes

Pauline

momander profile image
momander

Hi Sue,What a journey you have both had.

Ralph in hospital all this time, not aware of what's happening a lot of the time, and you just being so strong visiting him regularly and willing him back !! Now that long journey in the hospital is over, and he is home. All of a sudden a lot of the responsibility for Ralph's care and safety falls on you!! This is a huge transition for both of you.

Ralph is used to a hospital routine where a team of experts are constantly monitoring him and encouraging him to do certain things to aid his recovery. It's a lot easier in a hospital setting because it is safe!! If anything happens there are staff on hand to help.

Now that he is home, that support network is gone and it must feel quite daunting for him,if not a bit scary.

You, on the other hand, want the best for him, and are encouraging him to be a wee bit more independent, and do some light exercise.

Maybe he is scared incase something happens?

It just might take a wee while for him to build up his confidence.

You need to have sone time for you too!! If you have and good friends, family, or neighbours that would sit with Ralph for a while, it might help if you got out on your own for a bit?

Is there a team you can speak to at the hospital who would be able to listen and support you with your thoughts and concerns? Cardio rehab?

I'm sure you will get through this , it's just going to take time.

Talking together about your feelings will help ( if Ralph will do that) maybe I'd he tells you how he feels you can better understand his reluctance to exercise? Worth a try.

I wish you all the best

From one cabg patient to another, it's a long road but eventually you get there. Xx

Avagra profile image
Avagra

Wow I think Ralph needs to read my reply which is as follows:- I know my condition is not as serious as yours Ralph but I had a HA in Oct’22 and stented etc.On release from hospital I adopted a lifestyle of being a lazy devil and allowed my wife of 54yrs to run after me like a blue arsed fly whilst I sat all day putting weight on to register as obese.My wife became exhausted and suffered extreme back trouble and ended up with a near breakdown.Hey ho after realising what an inconsiderate selfish man I had become I decided to make immediate changes and exercised daily,helped with housework when possible,took trips out with my wife and generally relieved my dear caring wife from being an unpaid skivvy ! Not only have I got back to a healthy weight my once high blood pressure is now normal and I am back to being an equal partner within the marital relationship.Your wife has been a tower of strength through this entire period of your illness and doesn’t deserve being run into the ground and then what would or could you do ?Its hard when a patient leaves a long hospital stay as insecurity can prevail and not having people around you doing everything for you comes as a shock.Its now time to kick start a new beginning and get well doing all you can do to help yourself. We on this forum have read with interest and admiration your lovely wife’s journey during these difficult times and I wish you both a long happy future xx

andrea_waffle7 profile image
andrea_waffle7

Good morning Sue. Amazing to see Ralph home. Huge step for both of you, but you must take care of yourself too. Take all the help you can get and definitely get outside too. Sending lots of love. Keep asking for help. Xxxx

Fairenuff profile image
Fairenuff

Loving the shirt Ralph !! and it’s great to see you home xx BUT you now need a kick up the bum 🤦🏼‍♀️ xx

I am a retired ITU nurse and realise how hard it is for Sue. I have nursed my dad , MIL, mum & husband at home & it’s a totally different situation, however much you love & care for someone. As a nurse the shift, however bad, came to an end, there was always the back up of colleagues and I went home to my loving family - as a carer it’s 24 hrs, fitting in all the roles that other people do in hospital, while feeling very unsure at times whether I was doing right or doing my best. Not to mention the emotional strain & tiredness. I know I did all I could & would do it all again but it is not easy. Sue you are a trooper and have taken on a massive role and you realise you can’t fall into the trap of doing everything for Ralph. As others have said, get one of the professionals to talk to him about mobilising etc.

Ralph, if nagging my husband could bring him back I’d be expert at it - now walk outside and smell the roses 💕

Barre01 profile image
Barre01

He needs a ukulele to go with that shirt.

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