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Old 15th June 2019, 22:06   #141 (permalink)
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Re: My Bolshie Husband

Maisie that Doctor may have been making the right call. I think the situation you are in isn't right long term for your husband and certainly not for you. My cousins daughter's mother in law was in the same place as you 2 years ago. All the family lived over 200 miles away so couldn't give regular, constant support although they did spend a few days at a time helping when they were't at work. She brought him home from hospital without support (offered but turned down as he didn't want it but she knew in her heart she would struggle!). He wasn't fit to be home. The outcome......she ended up in hospital (injured back and ulcerated legs) and needed carers for herself when she was discharged and he ended up in a care home as she couldn't look after herself, let alone him. Please don't put a brave face on and do what you know in your heart isn't right for you and so isn't right for him. Insist the GP comes out to see him on Monday and don't minimise the problems for you and him when they come. The question is can you keep him and yourself safe.
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Old 15th June 2019, 23:42   #142 (permalink)
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Re: My Bolshie Husband

Quote:
Originally Posted by Kanga View Post
Thinking of you and hoping for a good outcome on Tuesday.
How good are you at acting? Maybe if you were to throw a complete tantrum and meltdown you would get some response.
I remember a case where a desperate housewife actually held a repairman hostage to get a satisfactory outcome after a string of useless visits. Not that I would suggest anything of the sort. . . .
I would strongly advise against this suggestion,
You have to remember the Hospital primary concern is the safety and welfare of Dave not Maise.
If the person coming on Tuesday feels Dave's welfare or safety is at risk they will act.
They will readmission Dave
They will contact Social Services who may section Maise
Put Dave into a Care Home, apply for Court of Protection for Dave
Fund the care home fees from Dave and Maise savings
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Old 16th June 2019, 00:35   #143 (permalink)
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Re: My Bolshie Husband

Quote:
Originally Posted by Maisie View Post
Nice thought - neighbours. One side there is no-one, we are the last house. The other side the house is divided into two flats. Don't know who lives upstairs, there is a constant stream of people going in (two bedrooms? how do they manage?). Downstairs are a newly married couple with a young baby. He has borrowed every gardening tool imaginable from us and believe it or not managed to bend the tines on a stainless steel fork!

The only other person, is a single girl who lives in a flat opposite and works all hours as a cleaner, as she has a young daughter and autistic son.

Yes, Monday morning I will ring and ask a doctor to call me back. Unfortunately this is the only way to get a home visit. After explaining what is wrong they either say someone is coming out or, if warranted, they put a prescription in the pharmacy next door to be collected.

Last time this happened a lovely lady doctor came out complete with all sorts of things to do various tests. However, she took one look at him and said hospital now! She rang for the ambulance.

Maisie
Contacted your doctor and tell them you Husband was subjected to a
Planned Unsafe Hospital Discharge and that no assements were carried out prior to discharge and that you understanding is that the Hospital has passed over all responsibility to your husband medical issues back to his local GP
email this if you can , be brief copy you MP in and the Trust that the Hospital comes under and you will have GP's queuing to enter your House
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Old 16th June 2019, 04:00   #144 (permalink)
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Re: My Bolshie Husband

Quote:
Originally Posted by Maisie View Post
I will persevere until Tuesday when this person from a home physio team comes to see Dave. Whilst I have threatened him with calling an ambulance I would need him on the floor at the bottom of the stairs before I called.

I have to admit, I don't really know what any carer calling in on a regular basis would actually do. There is certainly no room to walk round the bedroom with or without a zimmer frame. He was managing this before with a walking stick. Downstairs there is a bit more room, but furniture is furniture and for the most part - heavy. There is no future planning when buying furniture. If we worried about furniture being in the way, we would be living out of tea chests and breaking them up to make chairs, tables etc.!

In his current physical state, Dave is not able to use either the shower room or the downstairs bathroom. He went for walks along the corridors in the hospital accompanied by a physio lady and he used a zimmer. He seemed reasonably steady once he had stood up. Now he cannot stand up. His body is too heavy for his legs. I do agree though, that the longer he stays in bed the worse this will become. His arms are very weak also, and he has trouble raising his body enough for me to slide the bed pan under him. I think this is why my muscles are aching - trying to "help" him to raise the important bits from the bed.

He has just called me to say that he needs the bed pan! Here we go again.

Maisie
when I have received Home visits from the Home physio it has to checked layout and height of furniture (furniture height can be raised if necessary with the elephant feet)
I suspect they will suggest to you to rearrange your furniture or put some into temporary storage as you mentioned you have a Garage to make it easier for you husband to move around the house and at the same time get his arm and leg muscles working again.
They suggest a number of weeks in a rehab or Community Hospital the problem will be when they ask your Husband remain at Home or Rehab or Community Hospital

5 things to check before your relative is discharged from hospital
https://caretobedifferent.co.uk/5-th...from-hospital/

As you can see yours is not an isolated case happens all the time in Today NHS

There is someone on this forum that has worked in the NHS for 40 or 50 years not sure what field they worked in but they may be able to offer you more assistance @leo
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Old 16th June 2019, 10:40   #145 (permalink)
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Re: My Bolshie Husband

Quote:
Originally Posted by esb1841 View Post
when I have received Home visits from the Home physio it has to checked layout and height of furniture (furniture height can be raised if necessary with the elephant feet)
I suspect they will suggest to you to rearrange your furniture or put some into temporary storage as you mentioned you have a Garage to make it easier for you husband to move around the house and at the same time get his arm and leg muscles working again.
They suggest a number of weeks in a rehab or Community Hospital the problem will be when they ask your Husband remain at Home or Rehab or Community Hospital

5 things to check before your relative is discharged from hospital

https://caretobedifferent.co.uk/5-th...from-hospital/

As you can see yours is not an isolated case happens all the time in Today NHS

There is someone on this forum that has worked in the NHS for 40 or 50 years not sure what field they worked in but they may be able to offer you more assistance @leo
Your link is bang on Esb, difficult reading, it's so hard & difficult to say that these things are actually being done to our loved ones, in our caring institutions!

We have 2 Death certificates for my Mum, first one says "Frailty of Old Age", the second one has a long list of ailments, leaving her death open to opinion... To my shame, after Mum died I didn't have the energy left to take it further than the Coroner, he made the GP write another Death Certificate. Mum's death should have been reported to the Coroner in the first place, because she died about 8 weeks after a serious fall resulting in breaking her hip - Nursing Home didn't Notice how much pain she was in until the next day, nobody saw her fall... again.

The time to fight is now Maisie, please don't wait until you too are ground down & too tired to continue.
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Old 16th June 2019, 11:08   #146 (permalink)
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Re: My Bolshie Husband

My car is in the garage. Cannot park in the road because of the resident parking scheme (for which we have to pay). No room in the garage for any furniture whatsoever. We could not possibly afford to fund storage for furniture out of the state pension.

Talk of histrionics was a bit tongue in cheek. I just have to get the message over that I feel very let down by the system in sending Dave home on Wednesday evening with no thought as to how I was going to cope, both physically and financially, with the fact that he is doubly incontinent, cannot stand or therefore walk anywhere, in particular to the toilet. I am having to change him up to six times a day! This is due to the diarrhoea which goes back to last August, which they still have not addressed. It is all too easy for the hospital to alternate bed pan and incontinence pants - they have resources that I do not have.

At this moment, he is eating a bowl of rice crispies, which is something. Yesterday he had nothing after the donut - said he was too full.

It seems to me that the hospital quickly discharged their/NHS responsibility for Dave's continuing care. That is, they sent him home to me without any proper assessments being made of his mobility and capabilities and certainly ignoring the incontinence.

To go back - he was admitted because the constant pain in his left leg and hip made walking not only difficult but dangerous, in that he could not put weight on the leg and he fell - many times. As I have said before, this became "secondary" once they found out he was Type 1 diabetic. All their efforts were then channelled into "stabilising his blood sugar". What a joke! Various medical persons have been trying for 43 years to do this. The hospital thought they could do it in a few weeks? They should get into the real world.

The diabetes should be a side issue, not the issue he was admitted for. But of course, nothing was achieved for this incapacity other than a couple of x-rays, which they said were "negative". So that was the sum total of the investigation? Just get on with it. Of course, they were totally unable to stabilise Dave's blood sugar. I could have saved them the seven week effort in that direction. After realising that they were beaten, they then decided to send him home, still with the problem he was admitted with. Although, that is now worse as seven weeks in bed has worsened the problem with his legs. I have seen children in TV adverts for poverty and malnutrition with more flesh and muscle on them than Dave has.

Just have to wait until tomorrow now and see what that brings. Hopefully a GP from our practice to see him.

Maisie
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Old 17th June 2019, 12:07   #147 (permalink)
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Re: My Bolshie Husband

I have just had a call back from the doctor's practice. Fortunately the doctor who 'phoned knows Dave, so that saved a bit of explaining.

However, I told him how I am placed and that I cannot cope. He said I need a team of "carers" and the physio team. He also said he will get the "incontinence team" to contact me. I told him a physio was coming tomorrow, and he said we'll wait until then.

I asked him what exactly carers will do. He said give me general help in the areas I need with regard to Dave's care. Oh, so they will know when he needs changing, or better still, when it is going to happen! Apart from this, I cannot see any aspect they can help me with.

As to the physio: this is going to be interesting. A few minutes ago a man came to the door delivering a second zimmer frame! I remember them saying about this, so one for upstairs and one for downstairs. What a laugh! Dave needs to be standing and walking to use one of these.

The GP said that unfortunately this does happen nowadays. That is, when an elderly patient is admitted, they keep them in bed (out of the way) and their muscles atrophy. Then when it comes to going home, the relatives are left to deal with it. I asked him about the NHS Continuing Healthcare Assessment which to my knowledge had not been made. At least, not that I know of. Surprisingly, he said he had never heard of this. OMG - See what I am up against?

He said the incontinence service would be able to help with the supplies. I am sure they will not be interested in anything other than supplying the pads/pants that I need. Are they going to supply me with toilet rolls in bulk? I don't think so. I am damned sure they will not be interested in supplying the bucket of antiseptic wet wipes that I have purchased. So much better for "finishing" than toilet paper. How about some black rubbish bags for the copious amounts of stuff? No, oh well. How about some pedal bin liners then? Just the right size to use per changing session. No, oh well. Maybe I am being cynical but I would love to be proved wrong! Looks like no dice either about a GP visiting.

I went into the bedroom to tell Dave what the doctor said, and what was supposed to be happening. He said that he thinks this is all academic now as "I am not going to last much longer anyway". I must admit, this is probably my fault. This morning, he asked for the bottle, which he used. I asked him about needing the bed pan and he said that he didn't feel that he needed it. About ten minutes later he called me to apologise profusely for the mess he had just made. It was too. I had to get the big plastic sheet out to clean it. Gone everywhere doesn't begin to describe it. After cleaning and wiping, I picked up the clean pad ready, but I was too late - it started again! I started swearing - very loudly - and I think I upset him. Hence his thoughts. He was very subdued when I went in to tell him about the doctor calling.

He is again refusing to eat, on the premise that if it is not there, it can't come out. Makes a bit of sense, but not complete sense. I offered him a cup of tea and he said that he thought it was the tea causing him to "go". So what can I do? No food and no drink.

So, I am not much further forward except that I might be able to get some sort of supply of necessary materials. I will have to wait for the physio tomorrow. Be interesting to hear what she has to say when she realises that he cannot stand, never mind walk. As he has no strength in his legs and diminished strength in his arms, any sort of exercise that she might recommend is going to be difficult. The rehab team in the hospital gave him a sheet of exercises to practice. What a laugh! I would have tremendous difficulty in doing them myself! Consequently nothing was done other than taking him for a very short walk out of the ward door, and virtually straight back to bed. But he cannot even do that now.

He is calling me again. I am off to see what he wants.

Maisie

PS. He wanted a cup-a soup and a slice of bread! Are things beginning to look up?
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Old 17th June 2019, 13:18   #148 (permalink)
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Re: My Bolshie Husband

Oh Maisie, I do feel for you. I intend to tell my children that no matter what I say when the time comes, I do not want or expect them to look after me at home.
The way you and Dave have been treated is absolutely disgusting.
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Old 17th June 2019, 15:26   #149 (permalink)
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Re: My Bolshie Husband

Maisie,
Would you consider giving permission for all contributors on TLF who feel strongly about this, to print and /orcopy your posts and send them to their local MPs and Health Boards, and any other 'managers' involved in providing care?
Would other TLFers be prepared to send this with a simple covering letter?
You have provided such an authentic and powerful record and diary of the shabby treatment dished out to the elderly. MPs couldn't ignore it.
Your love and care for Dave shine through all your posts.
I for one would be happy to send a copy to the Health Minister for holiday reading. (I come under the Welsh NHS, not the English one and we have similar problems but not addressed in London.)
Just a thought, Dave would have to give permission.
This cannot go on.
K
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Old 17th June 2019, 15:39   #150 (permalink)
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Re: My Bolshie Husband

The Direct Payments scheme is a UK Government initiative in the field of Social Services that gives users money directly to pay for their own care, rather than the traditional route of a Local Government Authority providing care for them.
If you apply for this direct payment you will afford all items along with plastic bin liners and also afford private care which you really do need. You can't guarantee someone will be there at toilet times but if you have someone for a few hours every day it could take a little weight off your shoulders. I know people often don't want somebody else in their house but believe me we've seen it all. Only you can instigate getting the help you clearly need. In my experience the patient who doesn't really want anyone is the one who ends up most grateful whilst giving their partner a break. You shouldn't be trying to do it on your own. It's an almost impossible task. Hope you get help very soon.
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