Was going so well..........

[keegan2]

Been a while since i posted probably because our life has been plodding on along without to much disruption and complaint. However last Wednesday had another seizure was taken to hospital where 2 hours later at 10 am he had another one they did not last very long and he seemed only dazed doctors were happy to discharge him (A and e was so busy it was like piccadilly circus) by 1 had hubby changed and ready to go when he had another seizure, lorazapam was administered and he was out for the count doctors at that point said he would not be going anywhere........to make matters worse there were no beds available and by 1900 the decision was made to have him transferred to hospital. Whilst there he was making good progress and had quite a few lucid moments even said 'I love You' a priceless moment. Unfortunately short lived on Saturday night he had a chest infection and was made nil by mouth.......because of distance of hospital my visits have been shorter. Fortunately he has now been moved back to our local hospital where he is on antibiotics and still nil by mouth. How long he will be kept in depends on how quickly he can start eating and when they can get him back on his feet. As he not been given his other meds the aggression has started to kick in and he is swearing when nurses try to change him.

Cannot believe how things can change so quickly for no apparent reason. Have our routine and things seemed fine. Now I don't know what effect this is all going to take on him........cruel whould be understatement. Little man goes back to school tomorrow. Worse thing I only took one day off in the whole of the summer holidays to take him to legoland and were not able to go because of this set back...

 

[Jean1234]

So sorry

Been a while since i posted probably because our life has been plodding on along without to much disruption and complaint. However last Wednesday had another seizure was taken to hospital where 2 hours later at 10 am he had another one they did not last very long and he seemed only dazed doctors were happy to discharge him (A and e was so busy it was like piccadilly circus) by 1 had hubby changed and ready to go when he had another seizure, lorazapam was administered and he was out for the count doctors at that point said he would not be going anywhere........to make matters worse there were no beds available and by 1900 the decision was made to have him transferred to hospital. Whilst there he was making good progress and had quite a few lucid moments even said 'I love You' a priceless moment. Unfortunately short lived on Saturday night he had a chest infection and was made nil by mouth.......because of distance of hospital my visits have been shorter. Fortunately he has now been moved back to our local hospital where he is on antibiotics and still nil by mouth. How long he will be kept in depends on how quickly he can start eating and when they can get him back on his feet. As he not been given his other meds the aggression has started to kick in and he is swearing when nurses try to change him.

Cannot believe how things can change so quickly for no apparent reason. Have our routine and things seemed fine. Now I don't know what effect this is all going to take on him........cruel whould be understatement. Little man goes back to school tomorrow. Worse thing I only took one day off in the whole of the summer holidays to take him to legoland and were not able to go because of this set back...

So sorry to read what a hard time you have had. What a shame you missed lego land with the little man. As you said, such a cruel desease and what a brave person you have been through it all. Big cyber hugs sent.

 

[esmeralda]

What a frightening and worrying time you're going through keegan, and such a shame you and the little one had to miss legoland, you must feel very torn between opposing needs sometimes.

As you say, unbelievably cruel. Naturally you must be very anxious at the moment. Thinking of you and sending blessings.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Cat27]

Oh keegan I'm so sorry things have changed. I hope everything improves quickly .

 

[Grannie G]

We just don't realise how life can change completely in the flick of a switch. I`m so sorry you now have this to contend with Keegan on top of everything else.

While your husband is in hospital try to make best use of your time by allowing the hospital to take the responsibility for your husband`s care and you concentrate on yourself and your son.

 

[marionq]

Your family has had a tough time made all the worse because your son is so young. I hope things get better for you and as Granny G says try to use this time while husband is in hospital being cared for to spend time with the wee boy.

Thinking of you and good wishes.

 

[Jinx]

Keegan, sorry to read that you've been having such a difficult time plus the disappointment for your son. Do hope things improve and you are able to resume the former routine but we all know how these seizures etc. can have a negative impact. xxx


Sent from my iPad using Talking Point

 

[keegan2]

Thanks for all your kind words. Hubby is still in hospital. His chest infection has cleared however he is still quite weak and has been laid up in bed hopefully tomorrow the physiotherapist will be seeing him and try to get him mobile again. Its his birthday on Wednesday and we were hoping he would be home but the doctor reckons probably Friday if all goes well. Question if I am self funding what kind of help can I get for free when hubby comes home.........

 

[canary]

When you are discharged from hospital there is usually some sort of reablement package. This might be carers coming in 2 or 3 times a day, or it might even be in a nursing home. It can be up to 6 weeks. It all depends on what the hospital decides is warrented. As its following a hospital discharge, you wont get charged (even if you would normally be self funding) for the package - although you would have a financial assessment once the package comes to end if it is to be continued.

 

[Beetroot]

I found when Mum was in hospital, before she'd "formally" moved in here, they didn't like having to fork out for the six weeks, even though it was crystal clear she needed at least some reablement care - she couldn't get upstairs for a start. (I bottled out of a row and got her in a local care home for two weeks as that was better than her going to one in her own county.) They will probably do a formal assessment. I would ask to be there - you know what the patient is like day to day far, far better than anyone breezing in with a form to complete and money to save. If you are not there and you don't agree with what's on the form, prepare to do battle and certainly don't sign that you agree anything if you don't. You may have to push for help so I'd be prepared to declare firmly that you can't manage him at home on your own, especially as you have a child to care for too. Good luck.

 

[keegan2]

Just came back from visiting hubby. Soon as I got there the nurse said he was ready to be discharged. I was a bit taken aback as although medically he is OK in that his infection has cleared and medicine has been increased to control the seizures. I told her he was still unsteady on his feet unable to walk unaided his antiphysotic medication had not been administered until that morning the reason why he is swearing and not being cooperative in doing anything. She then said she did not realise I had asked for social worker since he went in for help when he comes home as this episode had left me quite worried about his health and I don't want that he falls only just started walking with help last night after 2 weeks in bed. Also he sleeps upstairs how am going to get him up there and back down whilst he is so unsteady. They have agreed to see how he is tomorrow and take it from there the physiotherapist is a bit reluctant to home help as he is so uncooperative what should I do.....sorry to waffle.

 

[Beetroot]

This explains:

http://www.nhs.uk/conditions/social-care-and-support-guide/pages/hospital-discharge-care.aspx

Hold out for an assessment at which you are present and be very firm about not having him home unless and until he is well enough for you to manage him. If you can't get him upstairs in safety, he should not be home. Have they done a proper assessment with OT and physio? Have they contacted social services? You could try speaking to Patient's liaison to find out the hospital procedures and also to your local alzheimer's society for advice - they will know any kinks and quirks of your local hospital.

 

[keegan2]

This explains:

http://www.nhs.uk/conditions/social-care-and-support-guide/pages/hospital-discharge-care.aspx

Hold out for an assessment at which you are present and be very firm about not having him home unless and until he is well enough for you to manage him. If you can't get him upstairs in safety, he should not be home. Have they done a proper assessment with OT and physio? Have they contacted social services? You could try speaking to Patient's liaison to find out the hospital procedures and also to your local alzheimer's society for advice - they will know any kinks and quirks of your local hospital.

thanks for replying..I am not very good at asking for help and to be honest have managed quite well with the help of my family. However now that I am asking I am feeling rather intimated by the people whom I thought were there to help. Last week I was told a meeting was to be arranged with the OT, physio, the doctor and myself. The physio today could not get hubby to cooperate with her and she has asked me to come in early so the two of us can walk him around (rather amusing as they were happy to send him home with only me to walk him around). The OT is concerned that he will not be happy for outside as he has been quite abusive and again uncooperative to any one trying to change or clean him, again I know this especially as he has not been given his correct dosage of medicine (but they think I can deal with him by myself as he will be home in surroundings he is comfortable in). I really don't know what to do, obviously i want him home especially as it is his birthday tomorrow, but on the other hand I think once I take him home with nothing in place, expecially taking him up and down the stairs I will be left to my own devices, which I probably will muddle through (have done up to now) It was the doctors who advised me to ask for help so now I feel I am being let down now that I am asking. I really don't know what help they can give me in order to get him back to where we were before he went in. I just don't want to struggle on my own if there is something they can do to help. The nurse who said he was going to be discharged even said I might have to pay for the help........fine if it will help. I don't want hubby to fall or hurt himself and have to go back into hospital.....

 

[cragmaid]

I really do understand how much you want OH home, especially with it being his birthday. I don't want to sound bossy, but you really must tell the discharge staff that you cannot possibly manage without assistance and training.

Sorry this is not more helpful..

 

[Beetroot]

As Cragmaid says, you must have a proper assessment. Various people seem to have had a look, but have they got a form to fill in and have they filled it in? Have you spoken to patient's liaison and has the hospital got social services involved? I know it's hard to ask for help as the hospital staff are so obviously under pressure, but they'll be under even more pressure if your husband falls on the stairs taking you with him or you collapse through stress and worry. That they can't even give him the right dose of meds tells its own tale. Is there a family member or a close friend who would accompany you to these meetings to give you some support? It sounds to me as if you do need some, and there's nothing to be embarrassed about that. You know your OH far better than the hospital staff ever will so don't be afraid to say so.
best wishes.

 

[keegan2]

As Cragmaid says, you must have a proper assessment. Various people seem to have had a look, but have they got a form to fill in and have they filled it in? Have you spoken to patient's liaison and has the hospital got social services involved? I know it's hard to ask for help as the hospital staff are so obviously under pressure, but they'll be under even more pressure if your husband falls on the stairs taking you with him or you collapse through stress and worry. That they can't even give him the right dose of meds tells its own tale. Is there a family member or a close friend who would accompany you to these meetings to give you some support? It sounds to me as if you do need some, and there's nothing to be embarrassed about that. You know your OH far better than the hospital staff ever will so don't be afraid to say so.
best wishes.

Thanks again for all your advice. Well by Thursday they gave up trying to assess him as he was being aggressive (he probably was like that due to the fact he had not slept all night and when he wanted to at 11 am they were trying to get him out of bed to see how his mobility was, even though we had agreed we would try in the afternoon when i was there. Anyway they said they would arrange for carer to come in twice a day to help with cleaning and changing as for going up and downstairs they would asses that. Unfortunately that would have taken them into next week and I decided to take him home on Friday as staying in hospital was doing more damage than good both to him and my family. He is home now the look on his face when he came back was priceless he gave the boys a great big hug and has been walking around as if he had not been away, he lost another stone in weight whilst in hospital and is a mere 7 stone. As much as asking for help sounded great the outcome was looking bleak to what is available it is such a slow process and feel for each and everyone of you who may not have any help at all and have to rely on the system which is so under funded, understaffed and sometime uneducated in what we are dealing with. The nurses final words as I left were are you sure you can cope as he is very verbal and aggressive (fortunately since he came home yesterday he has not sworn once or been aggressive, the familiar surroundings of home have calmed him down for now) lets see what each day brings. I pray for him and all the carers out there who which ever way they look after there loved ones do a great job whether it be at home or in CH..........

 

[Beetroot]

I'm glad things are calmer. I hope you will still have an OT assessment so they can offer advice on keeping your OH safe in the home. Do keep on at them about the promised help. Best wishes to you.

 

[Samira]

It is really sad to hear that someone we love is living with zero dignity, never really happy or contented, anxious or fretful for much of the time. Why is he having this seizures? Sorry for your suffer.

 

[Mcrampsie]

Mary

Sounds so hard. Well done for getting him home & great that he is calmer and happier but awful that there doesn't seem to have been a proper coordinated response by the professionals. Will your doctor be involved in coordinating what happens next? At least you know what meds he shd b taking. I feel for you - especially your horrible experience over the summer. Really tough. Are your friends & family still helping?

 

[keegan2]

Sounds so hard. Well done for getting him home & great that he is calmer and happier but awful that there doesn't seem to have been a proper coordinated response by the professionals. Will your doctor be involved in coordinating what happens next? At least you know what meds he shd b taking. I feel for you - especially your horrible experience over the summer. Really tough. Are your friends & family still helping?

Thanks again. Sir has settled back home well. With the help of my boys and sister we have managed to overcome this latest set back. The hospital stay has obviously made him more clingy again and it will take another week before his medication makes him calmer than what he is at the moment. Have managed to get him upstairs to sleep and shower although he has been quite aggressive in the mornings as he wants to stay in bed which would not be a problem if I did not have to go to work and also i need to get him in the toilet before he wets it. Sticking to a routine for as long as possible is making this journey more manageable. Need to pick a day to celebrate his birthday as he was in hospital probably Saturday when I hope we are back to NORMALITY AS WE KNOW IT............Good job I was not reliant on the help which I was told would be here on Monday still waiting..I probably won't use it as we are coping rather someone in more need take it. the extra few days in hospital trying to put things in place actually really helped as I really don't think he was ready to come on the Tuesday and definately would not have coped on my own the extra 3 day stay because I asked for help helped