In despair!

[Rageddy Anne]

I talked to the CPN. And left a message for the PHN. CPN says nothing I can do but persevere. I said I could pack my bags and leave him on his own. She said "Oh, you couldn't do that! " I told her that if he gets aggressive when I need to change him again, then I'm just leaving it. He can stay wet. She said I couldn't do that either, as that would be neglect and I'd have the social worker down on my back! Unfortunately, she said, there is not a lot we can do except wait it out. - And if he gets aggressive and I can't cope, take him to A&E. And to hang in, cos, blahblahblah! "Who cares for the Carers?" No-one, that's who!

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A friend of mine has recently trodden exactly the same path that you are...her desperately needed day care had to stop because she could no longer get her husband there wet and smelly and being very difficult. Then he started being doubly incontinent and angrily refusing to let her clean him up. Next he became destructive and caused all sorts of damage to the house and furniture, that's cost thousands of pounds. The CPN had moved on, and no one took her place for ages, and once a new one took over she immediately went on holiday. Eventually, my friend rang the GP's surgery and when told they couldn't have an appointment for two weeks, she broke down and cried, and then the GP called. He was horrified, and at last my friend got some help. It took some time to find respite care, and then they didn't want to keep her husband as he was so difficult! In the end it was an Admiral Nurse who stood by my friend and persuaded another care home to take my friend's husband, where the staff can't believe that my friend coped with him by herself for so long.
In this area it seems you have to be desperate to get support....it should be a CPN who helps you, and she should recognise your need for respite and see that you get it. My friend isn't the crying sort, but that's what it took. I hope you get some proper support as soon as possible....in the meantime all I can send is a great big hug.

 

[LadyA]

We had respite - 2 weeks - in April. He's due another week on 9th June. But I've told the CPN that I'm not putting him into respite again as it was so awful when he came home last time! I'm not going through that again. He did so well in the nursing home, and it's a pity to see how he's gone back down again since coming home. I can't give him the constant stimulation, company, activities and routine they could. And I have no "clout" with him. Nothing I say counts for anything with him. Familiarity breeds contempt!

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[Rageddy Anne]

We had respite - 2 weeks - in April. He's due another week on 9th June. But I've told the CPN that I'm not putting him into respite again as it was so awful when he came home last time! I'm not going through that again. He did so well in the nursing home, and it's a pity to see how he's gone back down again since coming home. I can't give him the constant stimulation, company, activities and routine they could. And I have no "clout" with him. Nothing I say counts for anything with him. Familiarity breeds contempt!

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I recognise that feeling lady A...the dependable person finishes up with no status, so there's no need to make an effort for them. It's heartbreaking, and so unfair. My husband can make a huge effort, and if one more person says to me that it's hard to believe he has a problem, I might just scream!
When my friend's husband went into respite the first time, the nurse said they wouldn't need to give him medication. The next day he was dopey, on medication, and when he returned home he was completely incontinent, instead of the odd accident. This sounds like your experience. But the care home he's in now manages to keep him much calmer, simply because there are enough helpers for one to distract him when he tries to remove the legs of a coffee table, and another helper can turn the table back up the right way! One person by themselves can't do that.
I'm being nagged to go up to bed, lights are being switched off, soon I'll be in complete darkness, so I'd better give in.oh for some uninterrupted sleep). Good night, for now

 

[garnuft]

Just standing along beside you LadyA. Hope you find your way out of the maze soon. xxx

 

[Rathbone]

Oh DG I've scared myself silly reading this stream. How absolutely appalling for you LadyA and everyone! As yet I (we) are still in the early stages and personal care is not an issue. With bvFTD when does that even happen I wonder? I thought I knew all about it and that I would be ale to cope if I could keep on top of juggling the mood swings and all. I confess I am feeling wobbly already at the prospect of trying to physically move him because I am already 70 to his 60 and I am scared that I will let him down. I have always been able to stay in the moment, be as prepared as I can by finding out everything I can and not allowing myself to crystal ball gaze. Seems it"s more scary out there than I thought and perhaps i'd better bury my head in the sand if I am to be the best I can. Feeling how dare I daydream when all of you are already living with it day to day. I'm not used to things this way round -I'm the one everyone else looks to for answers..........My love and admiration to every last one of you X

 

[zeeeb]

If I were you, if you have no solution to the problem by the time 9th of June comes along, I would be prepared to send him to respite and refuse to have him back home. I'm sure action will take place when it's them who have to look after him, rather than you. Refuse to come pick him up from respite, and tell them in writing that you will not accept him back into your house, the locks have been changed, and that due to the stress, and your declining mental health from all the strain, will no longer allow you to be a carer. I'm almost certain a place will magically appear out of nowhere if nobody else (read: you) picks him up to take him back home at the end of his respite.

It's not acceptable that you have to refuse to care for your loved ones in order to get help. Social workers can report you for neglect all they like. You've been screaming out for help, with none forthcoming.

 

[LadyA]

If I were you, if you have no solution to the problem by the time 9th of June comes along, I would be prepared to send him to respite and refuse to have him back home. I'm sure action will take place when it's them who have to look after him, rather than you. Refuse to come pick him up from respite, and tell them in writing that you will not accept him back into your house, the locks have been changed, and that due to the stress, and your declining mental health from all the strain, will no longer allow you to be a carer. I'm almost certain a place will magically appear out of nowhere if nobody else (read: you) picks him up to take him back home at the end of his respite.

It's not acceptable that you have to refuse to care for your loved ones in order to get help. Social workers can report you for neglect all they like. You've been screaming out for help, with none forthcoming.

I couldn't do it Zeeb. I know how stressful it was for me the last (first) time I brought William to the Respite place, and the person who had been in the respite bed before him hadn't been collected, although it was late afternoon. So he couldn't be taken to his room, and had to be just brought to sit and wait in the day room until that person was collected. I remember thinking that it was pretty mean of the carer of the previous person, when they knew that someone else would be being admitted to that room that day.

 

[2jays]

Have you contacted the doctor about yourself?

Slight tightness, a cough, wheezing, stress....

If you haven't contacted the doctor

DO IT NOW

It may be nothing.... But it doesn't sound like nothing to me....

xxxxx

 

[LadyA]

Have you contacted the doctor about yourself?

Slight tightness, a cough, wheezing, stress....

If you haven't contacted the doctor

DO IT NOW

It may be nothing.... But it doesn't sound like nothing to me....

xxxxx

Do you know 2Jays - I'm feeling a lot better this morning!
I had a long soak in the lovely bath last night.

William only got up twice in the night, and I ignored him.

I didn't get up until 8.30, having left the henhouse door open so the ladies could get themselves up - they are in a secure run, so quite safe. I let them out in the big pen when I get up. It is now 10a.m., and I've had my green tea & toast brekkies, and William has not got up yet!! The two cats are sleeping on chairs beside me, so with their not so gentle snores going in stereo, I could happily nod off again!

I found a recipe for a cough remedy in a Victorian book. Thought some of you might like to try it. I don't think I will though! It says:

Collect two dozen garden snails, and add to these the hind quarters of two dozen stream frogs, skinned. Bruise them together in a mortar, after which, put them in a stewpan with a couple of turnips, chopped small, a little salt, a quarter of an ounce of hay saffron, and three pints of spring water. Stir these on the fire until the broth begins to boil, then skim it well and set it by the fire to simmer for half an hour; after which it should be strained by pressure through a tammy cloth into a basin for use. Not sure if you should mutter "Bubble, bubble, toil and trouble" while stirring it!

 

[2jays]

Do you know 2Jays - I'm feeling a lot better this morning!
I had a long soak in the lovely bath last night.

William only got up twice in the night, and I ignored him.

I didn't get up until 8.30, having left the henhouse door open so the ladies could get themselves up - they are in a secure run, so quite safe. I let them out in the big pen when I get up. It is now 10a.m., and I've had my green tea & toast brekkies, and William has not got up yet!! The two cats are sleeping on chairs beside me, so with their not so gentle snores going in stereo, I could happily nod off again!

I found a recipe for a cough remedy in a Victorian book. Thought some of you might like to try it. I don't think I will though! It says:

Collect two dozen garden snails, and add to these the hind quarters of two dozen stream frogs, skinned. Bruise them together in a mortar, after which, put them in a stewpan with a couple of turnips, chopped small, a little salt, a quarter of an ounce of hay saffron, and three pints of spring water. Stir these on the fire until the broth begins to boil, then skim it well and set it by the fire to simmer for half an hour; after which it should be strained by pressure through a tammy cloth into a basin for use. Not sure if you should mutter "Bubble, bubble, toil and trouble" while stirring it!

That's good to hear

I did do a short eye of newt dance for you....

But see you found the recipe for yourself

 

[cragmaid]

strained by pressure through a tammy cloth into a basin for use.

Damn...that's another remedy I'll have to miss. I think I lost my Tammy Cloth when we moved

That sounds like a delightful start to the day....grey and miserable here in the grimy north!

 

[LadyA]

Pity none of us can try it. I don't have a fire to simmer it by.I'm sure putting on the cooker would ruin it!

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[2jays]

Taking grandson newt fishing this afternoon... We are cleaning the pond.... It's wet/damp outside. Cleaning the pond you get wet/damp..... so why not? He may get a cold

But....

I have frogs and snails in my garden.... I have spring water.... I'm sure in the garage I have a tammy cloth, (Mum had and kept everything from the G.G. grandparents....)

But where oh were do I get hay saffron from.... I thought you only got saffron from crocus

I haven't seen any in Te*co or Li*l

 

[Rageddy Anne]

Just the thought of that cure would make me insist I felt better....

Could certainly provide some snails today; the garden's so full of them rampaging about, I'm sure I can hear them knocking on the windows asking for my house plants.

 

[Katrine]

Hay saffron is one of the common names for the saffron crocus, because saffron has a flavour of hay. Tammy cloths are available from specialist catering outlets. The most difficult ingredient is the stream frogs. If you are suffering from a troublesome cough it would seem unwise to be out catching frogs? You can buy frogs' legs ready frozen from Am**** and specialist food suppliers. However, whether frozen is as efficacious as fresh, and whether stream frogs are specifically required as opposed to any edible frog, I can't advise.

 

[LadyA]

Hay saffron is one of the common names for the saffron crocus, because saffron has a flavour of hay. Tammy cloths are available from specialist catering outlets. The most difficult ingredient is the stream frogs. If you are suffering from a troublesome cough it would seem unwise to be out catching frogs? You can buy frogs' legs ready frozen from Am**** and specialist food suppliers. However, whether frozen is as efficacious as fresh, and whether stream frogs are specifically required as opposed to any edible frog, I can't advise.

Ah, but we can't simmer them by the fire Katrine. Tragic, isn't it? We'll never know if it works or not!

I'm always fascinated by these old recipes - I mean, who came up with them? I can kind of see how someone would think snails might be good for a cough (the slime? Might soothe it, you know?) but the hindquarters of frogs?? What would make anyone think that the back end of a frog would be good for a cough?

 

[2jays]

Ah, but we can't simmer them by the fire Katrine. Tragic, isn't it? We'll never know if it works or not!

I'm always fascinated by these old recipes - I mean, who came up with them? I can kind of see how someone would think snails might be good for a cough (the slime? Might soothe it, you know?) but the hindquarters of frogs?? What would make anyone think that the back end of a frog would be good for a cough?

I'm guessing back end of a frog would put a spring back in your step?

 

[LadyA]

Ah of course! Didn't think of that!

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[Katrine]

Yes and you wouldn't want a croaky voice, hence omitting the front of the frogs!

 

[Katrine]

You were on the right track regarding the snail slime. It turns out that frogs legs and snails are rich in mucin. Frog skins also contain antimicrobial compounds but in this case the skinned legs are intended to be boiled down to a pulp then strained slowly to remove any solids, leaving a smooth thick gelatinous broth that will heal the mouth and throat by recoating inflamed parts with soothing slime. Yum!!!
http://chestofbooks.com/health/nutrition/Medicinal-Meals/Frog.html#.U4DaQY41jML