Hubby has had a stroke

[Cate]

I hope I will be forgiven for going outside the realms of AD, but I am desperate. My husband has had a stoke, so I am looking for as much advice as I can get. I have read all the available information written by the Stroke Association, but I know from joining this site when mum had AD, there is no substitute for getting advice from people who have experience first hand, I am sure there are members out there who have had loved ones who have had a stroke.

First of all let me explain, my hubby does not have AD (that was my mum). He has lost the use of his left leg, and his left arm is affected, but to a lesser degree. Speech and language unaffected.

He is currently on a surgical ward, waiting for a bed on the stroke ward.

He has had a CAT scan, we have not had the ‘official’ results, but from badgering the Ward Sister she tells me it there is some damage to the brain.

My immediate concerns are when he first gets home are:

How do I get him upstairs to bed?
How do I get him in the bath?
Where do I go to arrange physiotherapy?
Is there a forum out there like this one for stroke victims?

This is all new to me, whilst mum had all the mental problems associate with AD, she was until the later stages physically fit.

My head is all over the place at the moment, so any other advice, particularly practical, I would much appreciate it.

Best wishes
Cate

 

[Grannie G]

Dear Cate

I can`t help I`m afraid, it`s out of my experience but I`m so sorry.

I do know of one other member who is caring for her husband who had a stroke and another is in hospital now, having had a stroke yesterday. I`m sure you will get some response soon.

I`m also sure there will be advisors at the hospital ready to point you in the right direction.

Love xx

 

[gigi]

Hello Cate

Sorry to hear about your husband's stroke.

On a practical note he should have physio while he's in hospital..that will probably start as soon as he arrives on the stroke ward.

Once he's well enough there should be an OT assessment too.

Prior to discharge physio and OT should together make a full assessment and visit your home to make sure it's safe for him to return to.

The ward should have details of any local groups available to you..and details of the National Stroke Association.

It's early days ..your husband could well make a full recovery.

Accept the guidance and support of the professionals..and look after yourself.

Take care.

Love xx

 

[DeborahBlythe]

How do I get him upstairs to bed?
How do I get him in the bath?
Where do I go to arrange physiotherapy?
Is there a forum out there like this one for stroke victims?
Best wishes
Cate

Dear Cate, I'm really sorry to read your post. Since your hubby is in hospital, there should be some discharge planning taking place before he returns home. (Actually, discharge planning is supposed to kick in as soon as a person is admitted to hospital. ) I'd speak to the hospital Social Work team as soon as possible, even if you think your husband is due for a long stay.
Kindest regards
Deborah

 

[BeckyJan]

Hello Cate:

Deborah and Gigi have already said it - the 'Stroke Unit' should organise his physio and from there plan his discharge and after care.

My husband had a stroke similar to the one you describe, left leg, arm and some speech! It occurred the weekend after he was told he had Alzheimers He refused point blank for me to call or a Doc has he would not go into bl.. y hospital. I waited a full 36 hrs before myself seeing our Doc (friend) privately. He advised that stroke patients have a record of recovering more successfully if admitted to hospital - still David refused. So apart from the Doc, District Nurse and me he had no immediate help. A scan, doppler test speech therapist and Physio were organised by them. His mobility returned quickly, always managing stairs for bedtime! His speech returned but left arm has always remained weak.

Considering he has Alzheimers the stroke was fairly easily managed.

On the positive side your husband will may be prescribed aspirin or warfarin, thus reducing the chance of a bigger stroke later.

Sorry to ramble about our case but it may help you to feel less anxious about it.

 

[Winnie Kjaer]

Hello Cate, I am so sorry your husband has had a stroke. I am just about to shower my husband with a carer but I will come back to you around lunch time and give you as much info as I can. My husband has had 3 strokes one very severe which has left him totally dependable 24/7. Take care this is very hard for you and him, but you will cope like we do with everything else.

 

[Nebiroth]

A relative of mine has just had a stroke. It was quite severe, he has been in hospital for some six weeks. Sadly he is mostly paralysed down his right side and his speech is severely affected also. Some function may be recovered but physiotherapy and recovery are difficult due to his advanced age.

It is early days yet for your husband, it is very difficult to tell how much function may be recovered and how long this will take. He will probably be in hospital for some time so that preventative treatment can be worked out etc. There will be assessments to see how much help he will need and what adaption need to be made at home to assist him and yourself - this could include things like stair lift, bed and bath hoists, etc. He will not be discharged before this is all in place. There are grants to help pay for many such adaptations.

In the case of my relative, there were discussions about his return home and what could be done, but eventually it was decided he would be better placed in a nursing home. This was mainly because his wife is in her later eighties and not physically able to move him even with hoists etc, also they are in a remote rural area, their home is in a deep dike surrounded by steps plus he has ongoing nursing needs.

 

[DozyDoris]

Found this.....

Hi Cate,
Just had a little look and found this which is on the stroke association web site
http://www.stroke.org.uk/applications/discussion/
I've not had a look but hopefully it's as active as this wonderful place.
love
Jane x

 

[Nan2seven]

Hello, Cate

My husband had a major stroke back in December '07, but was not affected physically in any way - other than inevitable slow-down after seven weeks in hospital. So I have nothing really helpful to offer, but did want very much to say how sorry I was to hear of your husband's stroke and to wish him well with his recovery. It is early days yet. And do remember to look after yourself and get some rest in between all the visiting.

Love, Nan XXX

 

[Lynne]

Another possible support forum

http://www.strokenetwork.org/

I just googled 'Stroke Support', and lots more come up, many with carers' forums. Don't be put off that a lot of them seem to be Australian or American; as with Alzheimer's, Strokes & associated problems know no national boundaries and - allegedly! - we all speak the same language.

Headway, http://www.headway.org.uk/ is a recovery scheme, physio & encouragement. I would hope you will be signposted towards them by the hospital discharge team when your husbands condition has stabilised.

And, rather belatedly, I'm so sorry Cate that your lives have been turned upside down like this;

 

[Winnie Kjaer]

Hello again Cate. You have already had some wonderful suggestions and advise, so I will just add a few bits here and there, but feel free to ask anything you wish. Depending on the size of your husbands stroke, he will receive various form of physio, my husband did not start with physio until he was stable which took more than 4 months due to pneumonia, MRSA and other things, but as I said it was a very severe stroke. My neighbour on the other hand also had a severe stroke about 12 months ago, but being much younger he was back home after a couple of months and is now walking although with a stick. Recovery is ongoing and can be for years. My husband recovered totally from his first stroke apart from some aphasia (speach problems). If you have a good stroke unit they will possibly rehabiliate your husband there if not not they very often send them to a rehabiliation unit where they teach them to live with their new disability and doing normal things at home. If you find your husband cannot go upstairs a stair lift may be an option depending on his balance. It is quite normal for paralysed stroke survivors to loose a lot of the balance. If not a bedroom downstairs will be the answer, which is what we have had to do. The bath can be pulled out and the bathroom changed to a wet room, which if needed should be able to easily take a commode and 2 carers. Physio is arranged by the stroke unit and he should receive physio once at home for a limited period. This is something we all have to push for. You mention the Ward Sister has said there is some brain damage. A stroke is a bleed or a clot on the brain, the consultant will tell you which. Which unfortunately does result in brain damage and is very often followed on with Vascular Dementia due to the brain cells having died. This is something they never tell you and it took me three years to realise that my husband had dementia as well as everything else. You will therefore qualify for the usual benefits that dementia sufferers do as long as you have it in writing. Ask the consultant to explain your husbands scan, it will really help you to know which areas of his brain is affected and what those areas control. I.e. emotions, speach, movements and so on. The more you know the more in control you will be. Having had a stroke is very frustrating for the survivor and moodsvings similar to AD is quite normal. I am telling you all this because nobody explained it to me, they just put my husband on antidepressants automatically, which made him very drowsy. No doubt your husband will also be subscribed preventative medications including Warfaring which will entail regular blood checks, which the nurse will do for you either at the clinic or at home depending on your husband final situation.
If necessary a care package and equipment will be put in place before your husband returns home, but I hope you may be lucky enough not to require any of these.
The sites I found very useful initially were
Stroke Network
NHS Carers Direct
Stroke.org
Carers UK
Carers org. (Princess Royall)
Direct.gov.uk
you can google them all and the support pages and forums come up straight away I have tried to attach them all, but I unfortunately get in a muddle with so many addresses, sorry
Try to take one day at the time and let things happen gradually, keep in close contact with the consultant who I found was the only one who really knew what was going on. I really hope you have an excellent stroke ward or rehabilitation unit, it can make such a vast difference.
I wish you all the very best, keep strong, I am sure you will get through this really bad time together.

 

[Tender Face]

Cate, no advice .... but you know ...

Try not to panic about what might be (rich coming from me, I know)...EM on way,

Love, always, Kaz, xxxx

 

[Cate]

Thank you everyone for your kind support and the very practical advice. Winnie, thank you, I have made a list of questions from your reply, I had no idea that a stroke can result in dementia.

I honestly thought my fighting days with the establishment were over now that mum has gone. Seems not.

Hubby is still on a surgical ward. No beds available on the Stoke Unit. So I have visited the Stroke Unit today to express my concerns that he is on the wrong ward, I have always believed presenting yourself is far better than just a phone call.

I am hounding the bed manager on a regular basis.

I am completely fed up with the staff on his current ward. It is so like the situation I found myself in with mum when she had a heart attack and was admitted to a cardiac ward, they had no clue how to look after a patient with AD, and here we go again with hubby.

Yesterday, hubby was taken for the CAT scan, returned to the ward and because the porter tried to transfer hubby back to bed on his own, hubby ends up on the floor, doctor came along and apparently refused to help lift him because of 'health and safety', Sister came along and got doc to help, but doc offered hubby to hold onto his shoulder with the arm that wont work!. Hummmm hoist, seems not.

Nurse call button not given to hubby, distressed when I arrived because he needed to spend a penny and no nurses about to ask.

Given his lunch, but it was left at the end of the bed so he couldn’t reach it, and nobody offered to cut his meat for him, and being a proud man, wouldn’t ask, so basically he had a plate of potato.

Taken to shower this morning and left there, nurse said she would be back, he never saw her again. He tried to get himself back into his PJ's himself, and got them soaking wet. He sat on a soaking wet chair and had to shout for someone to help him back to bed, this really upset him.

He is still under the Medical team, and not the Stroke team.

I have come away yet again having had those kind of ‘this is basic nursing care’ conversations, I am sure I am not the most popular of relatives, but jeez, given time they I am sure will come to realise I am a ‘professional fighter’ for my loved ones, after all I have had years of practice.

I feel totally mentally and physically exhausted, I am so tired through lack of sleep I can hardly speak.

A big thank you to my AD friends, I just knew I could rely on you for help.
Love
Cate xx

 

[Winnie Kjaer]

I am so sorry you have had the same experienced as I had after my husband's stroke. He was in 3 different wards before finally getting a bed in the stroke unit, which they shortly after closed and transferred to another unit due to refurbishment.
Your story is not unusual at all unfortunately. Hoists are to be found nowhere in our hospital apart from in the stroke unit, even having ordered one in advance each time my husband had to be admitted did not work. The same goes for electrical beds and airmattresses, even though I understand from one of our carers who also work at the local hospital that electrical beds are now the norm, thank god. You are doing the right thing, keep pestering them and let them know you are on their case. You will hopefully find a vast difference once he is on the stroke ward, apart from the fact that they are overworked and understaffed due to the very nature of the ward. I FOUND MYSELF HAVING TO BE THERE FROM FIRST THING IN THE MORNING TO LAST THING AT NIGHT EVERY DAY TO MAKE SURE MY HUSBAND RECEIVED THE CARE REQUIRED. The rehabiliation was so different only 8 beds and lots of staff including 5 physios who worked with my husband for one hour every day for 3 months. They were absolute angels with a fantastic sense of humour. There is light at the end of the day for you hopefully, it is exhausting and I found it impossible to rest the few hours I was home until my husband was stable. I really wish you the strength you require and as already said if I can help you in any way please ask.
My warmest thoughts to you and your husband.

 

[Cate]

Cate 1 Establishment 0

Just a quick update, I had a call about an hour ago to say that a bed had been found on the Stroke Unit, and hubby is in it.

I feel this is the first battle over. Thank God.

I hope to get at least some sleep tonight.
Love to all
Cate xxx

 

[Izzy]

Sleep well. Izzy x

 

[Margaret W]

WEll, Cate, I have my gun loaded, and if you just tell me which hospital it is, I will go and shoot the lot of them!

This is an example of NHS disgrace that a man is left in a shower after suffering a stroke, and has to try to get himself out safely. It is called Neglect. I have no knowledge of what you should expect and how to complain if you don't get it, but it definitely isn't right.

I don't know how severe your husband's stroke has been, I had a very minor one 15 months ago, and just to say that many symptoms do subside pretty quickly. In my case it was unsteadiness on my feet and lack of use of my left hand. The unsteadiness righted itself in a few days, and the left hand took about 3 months, but is now fine. Your husband might not be so lucky, so physiotherapy might be needed to regain use of limbs and muscles, but hopefully that will be put in place (and SHOUT if not), and in a few weeks/months he will be back to new for the most part. At least I hope that's how it pans out for you.

Eyesight can also be affected, and again it can right itself given time. I hope you have a good outcome.

Love

Margaret

 

[May]

I don't get to post very often these days, but I'm so sorry to hear of your husband's stroke Cate, I followed your journey with your Mum.

Cate 1 Establishment 0

That sounds like the Cate of old, keep going girl!
Wishing you health and strength

 

[Winnie Kjaer]

Good morning Cate, I am so pleased to hear your husband is now on a stroke ward. Excellent news. Let us know how you both get on there and how your husband is progressing.

 

[Sam Iam]

Cate,
well done with the bed in stroke unit.I am appalled about the treatment your husband has recieved.

He should have been hoisted AT ALL TIMES
He should not have been left by himself by the nurse/care-assistant.
There is a complaint proceedure for nhs.

Where the stroke is concerned Cate, the first 2/3 months are the best time for recovery after this it is due to adaption ie the other muscles in the body gaining strength.

The brain is amazing, all the blood vessels are a bit like a road stucture (an example explained to me by a physiotherapist specialising in stroke) and when ever there is a blockage much like an accident in a major road the blood diverts round the damage and makes it to the parts of the brain that are not affected.
The right side of the brain contols the left side of the body and vise versa.
The first thing the physio usually does is sit the patient on a plinth (2 people working with patient) and check to see what balance the person has, I have seen patients not able to do even this as they are so tired due to the stroke that all they can do is sleep but the physiotherapist will judge when the person. sits, stands and steps, if they need splints, what sort of walking aids are required etc.
Usually the patient is given exercises to do in sitting or when in bed, these are important for it is down to the patient doing their home work and putting in the effort as well as the physio useing their skills to assist the patient to make as good a recovery as possible.

Cate to use a positive out of a negative the fact that your hubby was able to sit on the shower chair sounds good and that he attempted to put his own PJ's on is all good, even though he should not have been left on his own in a toilet/ shower room so early on.
Best wishes Cate.xx