Somebody else's glasses

[Skye]

Dear Hendy

You really are up against it, aren't you? I can see the need for ad hoc child care, and I hope you get some joy from SS. Please get in touch with them and try to sort something out.

Love,

 

[Mameeskye]

Hendy

((((hugs)))

well do I know the need for childcare to enable you to do things and how little that you can actually accomplish, even at home when there are children to look after.

I think that there should be some form of creche facility in hospitals. I can also understand why you wouldn't want to take your 5yo to look at an EMI home. There shouldn't be a problem but you can never be sure, plus if there are some residents who cry or call out it is nice to know beforehand so that you can explain to your child.

I always had problems getting childcare for mine up to and including my retired inlaws who couldn't possibly come up to Skye and look after my sons who had just started to school because of bowling matches and other such things, when my Mother had been given about 24 hours to live and my husband was working away (we were in the process of moving south at the time!)

Yep, nash teeth.

Thoughts are with you

Love
Mameeskye

 

[hendy]

Dear Mameeskye, Hazel and anyone else reading

Thanks so much for your kind messages of support. Sometimes I just get so cross at the unfairness of things. The times we've been let down by family - I've lost count...

The latest update is that care home liason lady kindly called to say Dads been granted contiuing care again and he needs a specialised, small emi setting. The home I had wanted for him is the preferred one and plans are being made to get Dad in as soon as possible. However, this could take sometime as there are no beds at the mo. Dad will have to stay in hospital until somebody in mental health can come up with a satisfatory solution in the short term. I would be very surprised if they could, as he needs specialised dementia and mental health care nursing. All I can say is at long last we have got the help and co-operation from social services. I really couldn't thank her enough for her support. Although the result may be a little while in coming, they cant take it away form dad and his future is fairly secure now. This is a such a relief.

What on earth occupational health were doing ringing me up and recommending an unsuitable home - i have no idea. I did broach this with care home liason lady. She sounded surprised and she said they werent admitting new patients just yet. I said it was just as well after reading their CSCI report. They have been inspected again very recently, but haven't published the report yet.

I did go to the home with Edward in tow. It wasn't as bad as I thought it was going to be. It is very comfortably appointed. But I would be very worried if I had a loved one residing there. I would have to be so vigilant. Understaffing and giving medication was the most serious criticism of this home.

From 'campaign HQ', I can confirm that a letter about carehomes in my locality has gone to Councillor in charge of health commitee, and letter gone to CSCI also. Letter is being drafted to MP. Thinking about sending letter to press, but not quite sure yet...
Thats all for now, think I'll have a lie down!!
hendy

 

[jenniferpa]

Gosh Hendy - I'm not surprised that a lie down comes into your mind: I feel exhausted reading about it all. It sounds like things are coming together for you, even if one or two people are reading from a different hymn book.

Take care of yourself

 

[Skye]

Well done, Hendy.

It's great that your dad will be going to the home of your choice, and even better that he's got continuing care.

You deserve that lie down.

Love,

 

[TinaT]

I broke into a huge smile when I read your post Hendy - Many, many congratulations to you on succeeding in an almost impossible quest. How you have done all this, and looked after your family is hard to credit. You have worked so hard to get the best you can for your dad and I'm so proud of you.

Now comes another hard road along the path, to have to wait, and wait for a bed to become vacant. My advice is to phone up about once every 10 days or so and badger the social worker (or whoever is arranging the transfer for you). I phoned both the social worker and then the hospital social worker, pointing out that each week Ken was on the ward, he was blocking a bed for another person who needed this service. Try to establish whether your dad is now top of the list for vacancies at the EMI unit. Visit the unit and have another chat with the manager, telling him/her how happy you are that things are moving towards your dad moving in and how you need his place a.s.a.p.

xxTinaT

 

[hendy]

Dear Tina
Thanks so much for the advice and support, it does mean such a lot. I will certainly be making myself known to all concerned!! I might take a few days break first! At least while I wait for some replies back to 'campaign HQ'

I think the one thing I've learned from the whole episode, is that it is worth finding out who your allies are, who would have predicted it was to be Social Services?! Not me, thats for sure!

take care
hendy

 

[germain]

Hello Hendy,

Just wanted to support your comment about Social Services - they get so much bad press most of the time don't they.

All the way thro' with our Mum Social Services in our borough were excellent !

Regards
Germain

 

[Skye]

Me too!

We got a new SW when John first got his infection last August, and he has been brilliant.

No real complaints about the previous one, she was there when needed, and did her job. But this one goes the extra mile, and that makes such a difference.

 

[hendy]

Dear Hazel and Germain

I think my faith is restored in the system to some extent, dad deserves some good luck coming his way, its been way way overdue. I think if they are willing to go the'extra mile' they can move mountains!

Hope you're feeling better soon Hazel
take care
hendy

 

[hendy]

Dads glasses have gone missing!

To anyone reading
Had a lovely visit with Dad today. It really is a 'gift' that he is not sedated(off Clozapine). I feel sometimes I've got Dad back. He couldn't remember my name,(he never could get it right with three daughters looking and sounding alike), but he exclaimed to a member of staff 'it's my eldest, come to see me'.
Come on Dad lets get you sat down I've brought a treat. He duly sat down(took 5 minutes) I always bring a treat and today was no exception. Jam tarts, plus I brought a small flask of freshly brewed cuban coffee, black just as he likes it. He really enjoyed the coffee(thanks janjan) and woofed the tarts. The staff didn't seem to mind(i thought they might have objected on the health and safety front). I also brought with me a china mug. This is going to become a regular event. I was a bit worried that it was a bit late for coffee in the evening. sounded this out to K, he said why should anyone give a damn he's not goin' anywhere!
Dads got an admirer! Another lady patient said 'your dad's lovely' and patted him on the cheek! Amazingly,he accepted it!
I Had a game of dominoes with another patient. Dad said, 'i'll give this game a miss if that's ok?' He can still function a bit socially?!!! What's going on??
Guess what? He wasn't wearing his glasses... big search was on and no luck by the time I left. Shall have to phone tomorrow. Have got a spare pair, but want them to have a really good look first.
Was able to speak a little bit about Dads new home, he seemed fairly positive about it.
bye for now
hendy

 

[hendy]

To anyone reading
Went to see Dad today he was very disoriented but we were able to have a little walk. It was difficult to get him to settle down.(some of it caused by a very anxious relative) I think it was because there was a lot of noise on the ward. It's so hard for Dad, he does react so to his surroundings and in any emi environment theres going to be frequent moments of disruption. The nursing staff were doing really well to settle everyone. It calmed down eventually. Dad sat down to a cup of fresh coffee(brought in flask) and cake. He loved it. Eventually he remembered my name.
thats all for now
hendy

 

[TinaT]

Dear Hendy,

Your post could almost have been mine. Our situations are so similar. The ward which Ken is on seems to have quietened down somewhat recently, thank goodness, although there are the usual moments where someone wants to pull a handrail off a wall, or move the furniture around endlessly. When will your dad be able to go to his new home? I hope that it is soon for all your sakes.

I went on the ward today and the staff nurse told me that we would have to have a final review with the Consultant before Ken leaves the ward. I panicked a little as he has been very agitated and distressed this last few days, so much so that the nurses gave him extra medication. I think this is because of my going on holiday for a week, and his visits to the new home he's going to. It is so difficult to keep life on a smooth, even keel for him. This past two days he has settled down again so I'm hoping that the visits from his brother and some of my friends which I've arranged will keep him stable whilst I'm away.

The nurse said that it was a routine assessment and there were no surprises for me. So as soon as I come back there will be the formal assessment and the hospital can then hand Ken's care over to the nursing home. I went on to visit the manager at the home and he said not to worry that the bedroom is already there for Ken. So hopefully around about 14th April Ken will be moving to his new home.

Your dad's condition sounds very much like Ken's from your description. For me it is the moments of clarity which are upsetting when he knows what is happening to him. Yesterday I asked him to explain what was frightening him so much. He said that it was as if he had opened a book at a page he couldn't understand and when he tried to write in the book, he couldn't write what he wanted to.

Hope you have a good week with your dad next week. It is so wonderful that you are caring and loving your dad as you are despite having a young family to look afte. You certainly are made of the right stuff.

xxTinaT

 

[Grannie G]

Dear Tina,

I have so much hope for you when Ken goes to his new home. If positive vibes work, you will be getting them in abundance.

Please try to enjoy your holiday. I can only imagine your mixed feelings.

Love xx

 

[hendy]

Dear Tina
Many thanks for your post. Please try to enjoy your holiday!? You have worked so hard to make things better for Ken, but there are going to be times when its is going to feel difficult for him, no matter what you do. I am sure he will miss you and you have arranged extra visitors which must have been hard work.
Try to relax on holiday(!?), Ken would want you to enjoy it, wouldn't he?
Take care
hendy

 

[hendy]

Wild goose chase

To anyone reading
I had a phone call from SS today telling me of a nursing home that might be suitable for dad. At an earlier review, it had been decided he needed special mental health nursing, dementia and nursing care and a suitable home had been named even though there were no beds. I was happy with this home, it was just the job, and I was ok with dad being kept in hospital until a bed became available. However, I checked this latest home out it didn't do too bad in CSCI report. I went to go and visit and explained my dads problems(many and profound) They didnt have any vacancies. ??? The home seemed OK ,it was small(17 beds) and they didn't seemed phased by dads requirements to control his behaviour. There was Chuck Berry playing in the lounge and there were quiet places to go as well. Corridors to wander in. No smell. All the bedrooms were upstairs (not too sure about this), but had alarmed floors. The manager seemed very good. The staff had a good relationship with patients. But it was not a specialist mental health place.
Any way, this is the second home i've been sent to and for one reason and another, they have both been wild goose chases???
Got home and spoke to Social worker who has stuck up for us before and she was sympathetic but the decisions had moved from social to health. I've got a new contact, but he was out. I'm hoping he'll ring tomorrow. I will try to get a more definate comittment to the first nursing home on the list.
I have got a funny feeling that this is going to keep happening, as the powers that be try to get Dad off the ward to the first place that comes along. Perhaps this little game should be called 'Nursing Home Bingo' (to coin a phrase, sorry Bruce)
Sorry to go on, I've put the detail in just to keep a record of events.
take care
hendy

ps What is 'Forum Bingo'??? Can anyone enlighten me??

 

[germain]

Hi Hendy


Just a thought. In my location some homes have been reclassified (?) because of the pressure for EMI places.

For instance my Mums home was licensed as elderly residential but with 5 EMI beds. As far as I am aware the 5 EMIs were taken in as new people and the old residents who had moved along into EMI condition over the years weren't counted.


Is this posibly what the position is with the homes you are going to see? Worth enquiring at least.

Regards
Germain

 

[hendy]

Dear Germaine
Thanks for your post. I think there might be something similar going on with some homes round here. Its only a rumour though, there's nothing official, I dont think. One thing is for sure that for patients requiring specialist care(like Dad), theres very few options, theres only three homes in my authority and one of those is below CSCI standards. The other two are full up. In the neighbouring authority, its a similar situation. The heading EMI doesnt always mean the same thing home to home. It appears to be that some EMI's are 'dementia residential' and some 'dementia nursing'. The other EMI's (like the one dad needs) are 'dementia/mental health/nursing', I think there might even be some that are 'dementia/mental health/residential', but not too sure about this one.
take care
hendy

ps Oh I forgot to mention the EMI unit at a home that I nearly went to see, the consultant recommended it. It doesn't exist yet??? So that would have been 'wild goose chase number' three!!!

 

[germain]

Hi again Hendy

re the EMI unit that doesn't exist yet . Possibly a home just waiting for its formal licensing to arrive ?

We saw our Mum's home, booked her room etc and then had to wait a few days until they were sure that the license had been granted. - The home had built a huge wonderful new extension and it had to be inspected etc and various other things gone into before they could formally accept EMI.


Also- although not formally registered as a nursing home, because they had RGN staff etc and one of the partners was a consultant they would never turn a resident out because of nursing needs.

Don't give up - you'll find somewhere good in the end

regards
Germain

 

[hendy]

HI Germaine
Thanks for your support. It certainly is a a worrying time. Its just horrible that Dad has to go in one at all. What I am trying to avoid at all costs, even if it is inconvenient to the NHS, is my dad being sent from pillar to post. Becuase his behaviour can be very challenging, there is a real risk that this will happen. He is in advanced stages, but he is declining all the time at the moment. He looks so frail and doddery, I cant see him having the physical capacity to give anyone 'grief', but there you go! It seems at the moment that any Tom, Dick and Harry is suggesting unsuitable homes and they are not putting Dads needs first, but trying to get him off the ward as quickly as possible. I beginning to get cross now!!! I've got my new contact from social services ringing me today, so I suppose I'm just practising my speech for later!!!
Thanks again Germaine
hendy