World Turned Upside Down By My Wife's Unexpected Stroke

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Hi Graham, I agree it all seems a bit rushed and totally understand you being worried about Jan coming home so quickly even though I know you want her home. 
You should get some help from your doctors district nurses, they will help with washing and dressing, personnal care, they will want to know what things Jan can manage, but if that has not been mentioned I would approach them via your GP practice asap. They will probably come and see you to see what you and Jan need. Apologies for the question but do you have a downstairs toilet for instance if you are moving your bed downstairs. These are the practical things the nurses will help you with.
I think that COVID is leaving a lot of people wide open to being left to their own devices which is so wrong. 
You'll manage fine I'm sure and Jan will keep you right but there will be help available and initially I would accept it - just for a while  , it will give you time to see how to help Jan stand or walk for example.

We're all here to help if we can.

Ann

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Hello Graham,

This is our story.
Jan has already done very well and her quick discharge reminds me of what happened to John. He was 'thrown out' very quickly but, hey, we've both survived! ?

He was admitted at midnight Tues/Wed totally paralysed, semiconscious but slowly, slowly came back to us over the next few hours. He saw the medics during Wed, Thursday and Friday. (then Their weekend off) By Monday, he could shuffle down the corridor, climbed a set of stairs for physio and was discharged that day!' Shock!  The nursing staff were adamant he would be better off at home. At that time there was no space in rehab as his condition was 'too good' ! We waited for medication from the hospital pharmacy and shuffled out. We weren't even given a wheelchair. However, discharge (on the 6th day)  was probably the best thing for us. Caught on the hoof! We already knew that Care in the Community had a long waiting list and all we had was a list of exercises from the physio and a couple of ideas from the OT! John did what he could except Stroke Fatigue was a major drawback. 
 

We managed for a couple of weeks before chasing up help (via our local Stroke Association) who gave phone numbers for Community Care. We asked them for advice on exercises as we'd not cancelled our March holiday (shock, surprise that we were still going ahead) so they squeezed us in for a brief assessment. It took another couple of weeks after we got home, to actually start John's home rehab. I think he had intermittent appointments until July then we were totally on our own. 
 

Although John has now been diagnosed with Parkinson's, those early months recovering from Stroke demonstrated how wonderful our bodies can recover from major trauma. Following the physio and cognitive exercises is paramount in helping the body rewire and find new pathways. 
 

We are now 3 years 7 months down the line but have managed to do so many things together in that time - flying to Spain, Portugal, Madeira, Tenerife, Jersey, cruised in the Canaries). We've taken the train to Devon and Scotland. We've driven around the country to friends, family and for hotel mini breaks. All is not doom and gloom. We've laughed and cried along the way.

We hope we've given you some insight into how we've managed and are happy to expand on anything you want to query. We are now embarking on our latest challenge for John,,,Parkinson's ,,,,, but there is so much positivity out there to help us on our way.

take care, don't let jan have too many visitors, especially at the beginning AND look after yourself! 

Veronica and John
 

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Hi Graham, great news that Jan is recovering so well. My husband refused to have me home as our house wasn't ready so I got transferred to our local hospital instead which in my case was definitely the right thing to do. Medically I was fine but I wasn't ready, I text my husband one night to say I'd had a great sleep - it was 3am! I know you will be excited to have Jan home but make sure you're both ready.

Good luck x

185

Hi Graham.

How wonderful to hear Jans story, and amazing progress. Brought a tear to my eye. A happy one.

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Graham, This does seem to be a quick decision, but areas differ in procedures and aftercare. I live in Worcestershire and support here is excellent. Before discharge, I was brought on a home visit to determine any aids and alterations. These were put in by Age UK for free. I was given hand rails at the top and bottom of the stairs, a seat in the shower and walking frames for downstairs and upstairs. I was given six weeks physio/ occupational support by the Community Stroke Team, daily for a month then Monday to Friday for the last fortnight. They taught me to climb the stairs, get in and out of the shower and cope in the kitchen.In the meantime, I had to sleep downstairs for three weeks.

I was given my discharge papers and medication before leaving hospital and a copy of my discharge notes was sent to my Doctor. In the first six weeks I had a visit from the Community Stroke Nurse and my doctor. At the end of six weeks I was referred back to my stroke hospital for physio for one hour a week. As I made good progress this support lasted for nine months.

I write at length because this is the sort of support we all ought to have. I was also encourage to take my first steps outside, something I was quite fearful of. They also weaned me off walking frames and onto a stick. I was asked to use the stick outdoors but to walk without one indoors. Indoors you can uses walls and furniture for support. I was told to expect falls, but taught how to get up from them,

A lot, however, depends on the individual. I practised my exercises every day and added to my walking every day. Progress was slow, but it improved. Before I left hospital they also put me on a waiting list to see a neuropsychologist to check on my memory and a hospital appointment to check for any loss of version. As you can see, this was first class support, but it is a template for you to use as a checklist to see if Alan needs anything similar. I was so relieved to get home, but home is where the hard work begins. As I have said before, my main bugbear wa post stroke fatigue. Little is known about this, but the brain gets tired easier and needs to rest more as it starts working again. Emotions go all over the place as well, as the survivor has to take time to what is achievable and what might have to wait. For example, I found my first trip to a supermarket frightening.

Nearly five years in, I am still exercising daily and taking a walk. The more you do things the easier it will get. Please fight Jan's corner, as I am sure you will, but not all health authorities are as good as mine.

 

187

Thanks Ann

I will call the GP surgery as you have suggested to discuss the role of a distric nurse in Jans case.From what I have learned so far part of the team supporting Jan when shew leaves hospital will be in place (hopefully) for 6 weeks , 7 days a week, 4 times a day to assist dressing , washing , toilet etc??

We have a downstairs which will make it easier - but the showers are upstairs?As you say it will be a time of learning from the professionals

Regards

Graham

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It sounds as if you will both have a good support for the first six weeks - much better than I thought it would be which is great. Remember to look after yourself as well. So glad Jan will be home soon.

Ann

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Thanks for sharing your story with me Veronica

There are elements in your story which mirror Jan and my story - the comment 'better of at home' has been banded around recently, before Jan had her clot the speed they wanted to move Jan to rehab (the delay before the clot was down to bed availsability)

Dont think I am complaining about the NHS - it was the lack of involvment in the process, the sudden rush to get Jan home and the total disregard of any practicalities - let alone no real discussion of the aftercare, as per your experience that set me off and my insistance that despite wanting Jan home they can wait a few more days so I can organise better and learn more about the process.

As I understand a team will be available for 6 weeks the day Jan comes home 4 times a day 7 days a week plus physio support - but I need to clarify this further

Anyway I have taken the spare bed apart upstairs and will re build downstairs and find out any other equipment I may need not supplied i.e. trolley table for the bed?

Thanks again and if you dont mind I will continue asking questions

Best Regards

Graham

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Thanks Ann I will keep in touch

Graham

191

Hi Katy

Proud of Jan that she has fought herself to a position she can be allowed home - just so quick!

If I understand correctly from day 1 a team for 6 weeks 7 days a week 4 times a day will assist Jan with washing,dressing,toilet etc plus physio - but I will continue to chase and question until all is in place - agree with the advice that the support is there as I am the novice 

Best Regards

Graham

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Thanks Julie - I will continue to tell our story

Graham

193

Hi John

You may some very good comments in your response - dealing with people and making sure they deliver what they promise is what I do for a living and I can assure you I am on everyones case for answers and explanations - today was a nice suprise but the consequenses of leaving hospital are immense and so little time to get organised and ensure nothing gets missed.

From the numerous conversations I have had over the last couple of days it would appear that the 'care package' in W Yorksire consists of a team from day 1 - 4 times a day,7 days a week for 6 weeks to support Jan washing,dressing,toilet etc plus physio support (to confirm)

I will need to check if they supply a bannister to support Jan climbing the stairs - something Jan has exceled at in recent days

They will be supplying a return device (as a backup) as Jan seems to be learning to use a quad stick to get around(supplied) and a chair/commode if I understand correctley - anything else I guess I will need to buy??(i.e table for bed?)

I believe discharge paperwork & 2 weeks medication will be supplied on the monday - but I am chasing the discharge officer tommorrow to fill in any blanks 

I will bear in mind your comments about post stroke fatigue and ask a few questions

Thanks again

Gtaham

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Age UK put in an extra stair rail for me too. I would be lost without it. Good that you can act in Alan's best interests.

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Hi- I'm Jeanne.  I had a stroke 2 years ago.  Was paralysed on my left side.  I was in hospital for 3 weeks, during which I had therapy 3 times a day.  Before I left I practiced up and down stairs, using the toilet seat by myself, showering with aid of a stroke support seat, getting in and out of car safely, walking on ramps with walker. We were given a list of things needed for home.  Rails for toilets, support seat for tub, long-handled sponge for bathing, walker. My husband got all at a local med. supply store.  They gave me a quad cane to use until the one I ordered came in, regular cane as well.  My husband installed extra rails around the landing in the stairway. In short, we were well prepared for my homecoming.  My husband stood by at first when I showered and came downstairs.(Our bed is upstairs).  For several months he made meals and did the wash, etc. but he didn't have to be a "nurse".  Seems they could have prepared you two a little better before your wife's release, but maybe what with Covid they are rushing people out of the hospital. Even so, you will get through this time.  It becomes easier every day as Jan gets better each day.  Now I do the wash, make half the meals, mop the floor, clean the bathrooms, even some less strenuous yard work.  Two years ago these things seemed like they would never be possible.  My thoughts and prayers are with you both.   

196

Graham, I would ask about a bed table, think they will supply you with one if you ask.

197

I  am very pleased that Jan is coming home she must be very excited .I remember being so  happy that I was coming home and within three days we went out early in the morning to our favourite coffee shop Nero and as I got out the car I fell b ackwards and ended up in a different hospital but I kept sayin g I wanted to go home and they only kept me in for two days.I hadnt got all the problems Jan has got but it was still very strange at home for a few days. So give Jan chance to settle and I am sure you will both be fine.  With very best wishes Norma.

198

Hi Graham

That's good news that Jan is coming home. Even pre-covid, in my family's experience, hospitals have always been eager to discharge as quick as possible.  The Consultant told me that the longer you are in hospital once you are over 50, the more risk you are of infection from other patients. Each time my late Mum was admitted 94yrs old because she didn't feel well, she got MRSA in the ward. 

True, they do need the bed too - apparently £595 it costs the NHS for every night a bed is taken up we were told when my mother in law was dying from cancer. Again, her ward was closed for 2 weeks and we couldn't visit because of salmonella outbreak. The problem is there is no communication, co-ordination or consultation with other services at the time soit can be quite overwhelming when you first hear the words - going home.  

It does all click in place once you get home. You will probably get a phone call from either physio or occupational therapist who will come to see Jan until they feel she is improved enough to make her own recovery. Make sure you get the help you both need though because it's tough on you as well as Jan when you get home till you sort out your own routine. 

 

199

Steady as you go ? great news for you all. Each day will bring challenges and celebrations. Collate names and phone numbers of deparments and idividuals that have been with you on this.

Voluntary/charitable organisations such as us at Stroke Association will be able to help with lots of other things as they arrise.

I wish you all the best for the transfer home. It will present all sorts of things that will not have been considered. I.e Jan may be fearful or anxiois in the kitchen because thats where life changed for her and you.

Things will settle, it will take time, it will take patience, it will get easier.

Celebrate each step and ask for help when you need it.

Thanks for sharing your news, really appreciate it ?

Jason

200

Hi Graham, great news, you must both be so excited.  I was in a rehab unit for 12 weeks, so had plenty  time to build up to my discharge. Although having said that, I  was quite  overwhelmed  when I finally  arrived  home (lots of tears) and I wasn't  really up to  lots of visitors for a while.

The first  time  I got up the stairs  at  home,  was very emotional.  We slept  downstairs  until  I could make it upstairs  safely and I cried  buckets  the first  time I walked into our bedroom  (I was so emotional,  even my physio  shed a tear or two).

Just trying  to say, be prepared  and stock up on the tissues. 

Regards  Sue 

 

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That sounds like a brilliant care package, bet Jan is desperate to be back at home.

Good luck to you both

Katy