Can I fight for him again?

[SoAlone]

My OH moved to a Dementia Nursing Home on Thursday from a hospital Dementia Assessment Unit where he had been for just over 3 months. First couple of days weren't perfect but on the whole he didn't seem to realise he had moved. Yesterdays visit was my worst nightmare. He was very distressed, he was incoherent and salivating heavily, hallucinating and behaving in a way I hadn't seen before. He was sat at one end of the communal room at a table by himself away from everyone else. He couldn't stand on his own. I was greeted by staff member to say he had been aggressive with staff and residents and had a couple of falls although not hurt himself. I had gone to watch the football with him and asked if he could be moved to where the tv area was. Reply was 'don't know if he will let us he has been difficult all morning' and 'you need to keep him away from everyone else because he has been really nasty to them all'. I stayed through the first half but he wasn't able to watch, constantly talking to people he was visualizing. When I left I said to a care worker, I am going now can you keep an eye on George. The response was half-hearted at best. I called in to express my concerns to the Ward Manager, who is very good and has clearly read his file very thoroughly. When I mentioned that I felt his condition was due to medication, she was at pain to say he only been given 0.5 Loz. . . . and it would have worn off by now. I was very open with her and said I had reservations about him going there. It is a lovely place on the whole but I was concerned that they wouldn't be able to handle him. I She reassured me and said new patients often have a blip and she was confident they could manage although she was monitoring, as she said on day 1 with a view to applying for additional CHC funding for 1 to 1 care. Which backs up my point that I don;t think they have enough staff, or enough of the right staff to care for him.
Sorry to ramble on but I am not sure I can battle again, the last 12 months have sucked any energy I had left.

 

[Grannie G]

Hello @SoAlone

I think there are two things to consider about your husband`s care.

1. He has only been in the home for three days which hasn`t really given him a chance to settle.
2. The attitude of the staff at the home seems negative and unhelpful towards a new resident.

On top of this is your obvious and understandable anxiety about your husband `s care.

For a while, your husband won`t come to any harm and needs more time to see if he will settle where he is.
Meanwhile you need time to rest and regain some strength.

I know how upsetting it is to think of him being so unhappy because I have been in a similar position myself when my husband was in an assessment unit.

I managed Three weeks. Do you think you will be able to do the same.

Let the staff know of your distress and hope they will show more understanding.

 

[SoAlone]

Hello @SoAlone

I think there are two things to consider about your husband`s care.

1. He has only been in the home for three days which hasn`t really given him a chance to settle.
2. The attitude of the staff at the home seems negative and unhelpful towards a new resident.

On top of this is your obvious and understandable anxiety about your husband `s care.

For a while, your husband won`t come to any harm and needs more time to see if he will settle where he is.
Meanwhile you need time to rest and regain some strength.

I know how upsetting it is to think of him being so unhappy because I have been in a similar position myself when my husband was in an assessment unit.

I managed Three weeks. Do you think you will be able to do the same.

Let the staff know of your distress and hope they will show more understanding.

Thank you. Rationally I do think I have to give it more time, but my concern is fueled by the fact that that the Best Interest Meeting outcome was that he required specialist Dementia Care and he was assessed and accepted by such a unit, which was 45 minute drive away but I was assured that that was what he needed and I was happy for him to go there. However they did not have a place and so after about 10 days this place, which I had been happy with prior to Best Interest Meeting was asked to assess him, I was given assurance that they were given full facts, which I believe they were. They accepted him, when I expressed reservations I visited again accompanied by Ward Manager from the Assessment Unit I thought I was just concerned because deep down I didn't want him to go anywhere and 2 days later he moved. I do trust and have a good relationship with the Assessment Unit staff, but I can't help a niggle in the back of my mind that says this was pushed forward because it was a cheaper (one third of the cost) and quicker solution

 

[Grannie G]

You may be right.

I would continue to make enquiries about the preferred home and ask if your husband`s name can be put down as first choice for a future vacancy.

Don`t give up on the preferred home yet and try to monitor all concerns you have with the home he is in now.
Record times and dates. It will strengthen your case if finance is an issue.

 

[SoAlone]

You may be right.

I would continue to make enquiries about the preferred home and ask if your husband`s name can be put down as first choice for a future vacancy.

Don`t give up on the preferred home yet and try to monitor all concerns you have with the home he is in now.
Record times and dates. It will strengthen your case if finance is an issue.

thank you. I will note staff numbers and his condition on each visit . Hospital Unit are to visit him themselves in a week before they sign off responsibility and I will make them aware of my concerns before they do.

 

[Grannie G]

Hospital Unit are to visit him themselves in a week before they sign off responsibility and I will make them aware of my concerns before they do.

That`s good. At least your husband`s care is still being monitored.

Keep posting to let us know how it goes.

 

[SoAlone]

What a horrendous day yesterday. I took everyone's advice, give it time, don't over-react and spent the morning, in the garden and with the dog Those who supported me here, please do not take this as a criticism. I arrived at OH home at 2.15pm to find OH slumped on a sofa, all limbs twitching, eyes glazed, incoherent,hallucinating, clearly terrified, clothes covered in food, half his dentures in, extremely hot. He was sat with sofa backing on the ward office. I went into that office, seeing deputy Ward Manager and another member of staff, apparently chatting to ask what was wrong with him. They said why, he was fine at lunch ( 12.30). They came to look and seeing him decided to routine observations. I said I wanted him checked, and asked if he had been given more prn, which they denied. They arranged to call out of hours GP service. I asked them to stay with him as I need to go down to my car to make a phone call. When I returned they had called an ambulance. Apart from their comment that 'maybe he had an infection' (suggested yesterday but still no testing done) and 'I only met George today' neither of which I found particularly helpful I will not detail the TEPS discussion or difficulty in stabilising him enough to get into ambulance.
I was at A&E with OH from then until 10pm last night finally seeing him settled on a ward in the care of a wonderful night nurse and healthcare assistant. Throughout our journey through A&E and the ward and by phone, I advised everyone that OH would not be returning to that place under any circumstances. All hospital staff fully agreed and supported that decision.
So today, the fight does indeed continue. With the help of the hospital to discover what has happen to him, and find a safe place for him again. Exhausted, isn't the word but they don't refer to me as the Office Rottweiler at work for nothing. Thanks for all your support here too xx

 

[Izzy]

I'm so sorry to hear about your husband. I hope they are able to make him comfortable quickly and find out how best to help him.

 

[Shedrech]

oh @SoAlone what a horrible experience for your poor husband, thank goodness you visited when you did
I hope you both continue to receive such good support from the hospital staff and all is resolved positively - you need to ba able to be the loving character of the Rottweiler, not the guard-dog

 

[SoAlone]

thank you everyone. OH is so much better today with only good basic nursing care and antibiotics for a chest infection, which makes me think even more firmly that his condition was due to at best neglect and poor care at worst, despite denials over medication. It hasn't been plain sailing today but I am happy just to have him so much better so quickly. I have still been told that he has to go back there and await another placement. But I have told them it isn't going to happen and that I will fight them with every breath I have and every legal support I can find. I think they got the message. My daughter has been the Rottie today, stepping in when the fight finally reduced me to tears. If I say so myself we are quite a team

 

[Lindy50]

Oh well done @SoAlone and daughter
Good to read that you've got your 'fight' back! Though very sad for you and your OH that he had to have that experience.
If you lose this battle, and OH is somehow discharged to the same place, I am certain that you will 'win the war' and get him appropriate care ASAP.
More power to your elbow, and bless you.
Lindy xx

 

[SoAlone]

Thank you everyone. we are still in there. OH is still in general hospital, he is medically fit for discharge but hospital plan is to discharge to our preferred choice of Nursing Home and definitively not to previous place. How ever that doesn't mean that I haven't had calls telling me that the manager of that previous home is very reasonable and is prepared to move rooms around and make room for him at sister home, run by same company and management. I was upset and pointed out to the person who phoned from the Assessment Unit that the hospital had promised I wouldn't be pressurised into agreeing for him to go anywhere other than where I had stated. We shall await next twist and turn

 

[Scriv]

Stand your ground... the hospitals are under such pressure to free the beds that they continue to put the pressure on and on and on to get him out. Whereas I do see their point and understand their dilemma fully, our concerns are first and foremost for our very vunerable realitive - and if we don't fight for our own, who on earth will.
Hang on in there and hope a place in your preferred nusring home becomes available soon.

 

[callydrew]

I know just how you feel. I battled through with my husband for 4 years and he is now in a care home since last March. I go to see him every day and some days he is fine. Other days he is agitated and sometimes very upset and crying like he is breaking his heart. When I leave him when he is fine I am fine but when he is not I feel that someone has put me through a mangle. I am very upset and often come home and break my heart too.

 

[Casbow]

What a horrendous day yesterday. I took everyone's advice, give it time, don't over-react and spent the morning, in the garden and with the dog Those who supported me here, please do not take this as a criticism. I arrived at OH home at 2.15pm to find OH slumped on a sofa, all limbs twitching, eyes glazed, incoherent,hallucinating, clearly terrified, clothes covered in food, half his dentures in, extremely hot. He was sat with sofa backing on the ward office. I went into that office, seeing deputy Ward Manager and another member of staff, apparently chatting to ask what was wrong with him. They said why, he was fine at lunch ( 12.30). They came to look and seeing him decided to routine observations. I said I wanted him checked, and asked if he had been given more prn, which they denied. They arranged to call out of hours GP service. I asked them to stay with him as I need to go down to my car to make a phone call. When I returned they had called an ambulance. Apart from their comment that 'maybe he had an infection' (suggested yesterday but still no testing done) and 'I only met George today' neither of which I found particularly helpful I will not detail the TEPS discussion or difficulty in stabilising him enough to get into ambulance.
I was at A&E with OH from then until 10pm last night finally seeing him settled on a ward in the care of a wonderful night nurse and healthcare assistant. Throughout our journey through A&E and the ward and by phone, I advised everyone that OH would not be returning to that place under any circumstances. All hospital staff fully agreed and supported that decision.
So today, the fight does indeed continue. With the help of the hospital to discover what has happen to him, and find a safe place for him again. Exhausted, isn't the word but they don't refer to me as the Office Rottweiler at work for nothing. Thanks for all your support here too xx

I feel for you and understand the shock at seeing your husband like that. I went through a really bad time when my husband had respite. I will never forget it or get over it. But sometimes these homes just don't have the correct staff or management. My lovely man is now in a very good home permanently. Every day I visit I know that if I am not happy, the staff will sort it straight away. To be honest I have never had anything to complain about. Well nothing worth mentioning. I think good care starts with the manager. They want the best for the patients AND the staff. If that happens than for the most part all is well. When my husband went into the nursing home he needed 3 people to do his personal care. I know how difficult he was. I cannot praise the home enough. No its not perfect. Today a resident had a stroke at the dining table. there were no more staff to deal with that and the paramedics that there was before the lovely man took ill. When something like that happens it makes the care of the others more difficult. But it was ok although very sad. I am very grateful for the good home that my husband is in. I know the heartache you are going through. I wish you well and your lovely man.xx

 

[SoAlone]

Stand your ground... the hospitals are under such pressure to free the beds that they continue to put the pressure on and on and on to get him out. Whereas I do see their point and understand their dilemma fully, our concerns are first and foremost for our very vunerable realitive - and if we don't fight for our own, who on earth will.
Hang on in there and hope a place in your preferred nusring home becomes available soon.

Thank you Scriv. I agree, and I understand NHS pressures too but as you also say, my job, at the moment is to stand up for my OH and get him the care he needs, the best care I can.
When that is sorted I might have the energy to add my voice to the campaign for more specialist beds within the NHS for PWD to wait for the correct care rather than General Hospital beds. My OH is on a surgical osteopathy ward because the ward for Elderly with Dementia couldn't take another patient with his issues. There are 10 specialist Dementia Unit beds for the whole of my area.

 

[Scriv]

We have been through this very recently and understand completely how you feel. You are obviously a lovely and very caring and community minded person, but in this situation, for your own sake, you can't afford to focus on the greater picture at the moment. You need to save your energy whilst you are going through this if you are anything like us. You need all your energies for your relative, believe me.

Dealing with a PWD is really very distressing and tears one apart and saps your energy and emotions. I was staggered to realise just how much fighting we had to do, and how many battles there were along the way. It has been horrendous. Sometimes being very very assertive and at times even stroppy has been the only way we have managed to get the outcome we have felt our PWD rightly deserves. This has been a real eye opener.

We now have our people in an excellent care home where both are having their needs met, but we still don't feel we are out of the woods.

 

[SoAlone]

Scriv. Thank you for your reply, I haven't been online for a few days as I am spending my days fighting nameless faceless people in the Discharge Team.I have mobilised all services at my disposal including help from my MP to stop them, discharging OH to the first place they can find, with no regard to my opinion or the Best Interest decision. The staff on the wards are lovely but the antics of this team are severely testing my endless patience. I visited 2 homes at their request , one said no immediately, the other is not officially a secure unit and has several sets of steps, which makes it unsuitable for OH. However despite me telling them that they still asked that home come and assess him. I was at his bedside when she visited and we discussed his needs again. As they not not often take dementia cases, she told me she would decline.I have told them endlessly that a specialist home, which is out of the area and expensive I admit, had already been identified before recent episode and after that is where he should go. That home have assessed and accepted him, we need the exceptional funding to be agreed by CHC and a place to be available. But it seems that none of this features in their plan. I am learning that with this disease, fights with so called 'Powers that be' are never ending.

 

[Amethyst59]

@SoAlone ...just dropping in to give my (exhausted) support. I too am picking myself up and fighting on, when several times I have dropped and said, I can do no more. Once you and I have our husbands settled where we are happy, let’s raise a virtual glass together. If we have the energy to pick the glass up, that is.

 

[canary]

Im sorry you are having so much trouble getting your husband into a home

we need the exceptional funding to be agreed by CHC and a place to be available.

Do you actually need CHC to be able to get into this place, and has he been assessed for CHC?