Problems which are not problems

G23 So soory to hear of your trials, and yes, sometimes an ounce of practical assistance does more good than a pound of either sympathy or empathy. Not that sympathy or empathy are to be condemned, of course.

I second the advice to get skilled advice on applying for the attendance allowance. When DH was terminally ill, someone who had worked at the other end of these applications - grading them - helped me to fill one in. She asked really penetrating questions about the reality of looking after him, and drew out of me answers which I would not have thought to put into the form myself, and helped phrase things so much better than I could have.

You have to think of the worst times, the worst days, not the good ones.

Sorry Elegran and Kitty, I do understand your need to offer something 'practical' but you have inadvertently illustrated my point perfectly. We did, OF COURSE, have 'professional' help in filling out the form and did focus on the bad days which are indeed now the norm. My sister, who worked at a senior level in the then DHSS commented that a few years ago the application would have sailed through and benefit awarded accordingly but now almost all applications fail first time, although some squeeze through on appeal although the circumstances have not changed at all. I am left with the situation where the Consultant tells me that DH must not be left 'home alone' nor 'allowed' out unaccompanied nor drive, while the DWP have assessed him as being capable of looking after himself 24/7.

Yes, that does illustrate your point. "Let not thy left hand know what thy right hand doeth!" Maybe you could send the reports of each of them to the other, with appropriate comments, or even INappropriate comments.

It is a bit like home insurance - a great system until you need to claim!

Have a virtual hug, G23.

Apparently a huge amount applications for attendance allowance or PIP are rejected the first time, on the premise that a lot of people won't appeal, and they don't. So, its really important to appeal.

Elegran another of the anomalies of the system is that Consultant's reports are not sent to the patient but rather to the GP who made the referral. In DH's case the previous (last autumn) consultant's appointment led to a referral to the once a week 'Day Therapy' unit for 'assessment'. This assessment is carried out over a period by a nurse practitioner and her team who then report back to the Consultant. Hence another Consultant's appointment when Dementia was finally verbally confirmed and the Do not leave alone and stop driving immediately orders were issued + a referral for a brain scan (next Tuesday) to rule out anything e.g. a tumour, which could be causing the symptoms and perhaps indicate which type of Dementia DH has. They have already ruled out Alzhiemers otherwise he would have been offered drugs to slow the progress of the disease. When this has been done DH will no longer be the concern of the NHS. He will be referred to the Social Work Department who will visit 'in a month or two' to discuss a'care package'.

The 'DO not Drive' directive has caused endless trouble. DH has been driving for 60 years with no points on his disabled (as a result of Polio at 17) licence, no accidents, nothing (which he tells me and anyone else who will listen a dozen times a day and cannot understand or come to terms with this directive. When I explain that it is not his driving ability that is in question but rather, delayed reaction times he kind of accepts that but 10 minutes later he has forgotten and off it goes again. The clinic have told him, in fact recommended, that he can appeal and resit his driving test which if he passes would let him retain his licence for 1 year, then another test and so on. They think that if he failed the test - (which he would, as he did not get past Question 4 in a 50 question sample written test) - that would convince him he was not fit to drive. Given that he can't remember what happened 10 minutes ago, let alone yesterday, I can't see that working. Plus the logistics of getting himself and his beloved car to the test centre in Edinburgh or alternatively sitting the test in a strange car, would be too much for him (and for me).

He has been referred to a multitude of lunch clubs, and social groups while I have invitations to various support groups for carers. He has hated them all, wants me to stay with him, not leave him with strangers. All the carers support groups run in the daytime (when the alternative 'carers', our DDs, are at work) and none of them is on at the same time as a group for the elderly or dementia sufferer. Carers' Groups are mainly attended by those whose relative is in residential care. Those in the throes of 24/7/365 cannot attend and miss out on the support and information they offer.

Sorry to go on at length but just trying to illustrate that there are no accessible simple solutions. While there is enormous goodwill and effort from charities and the NHS, the 'system' lacks co-ordination which I hope will be addressed during the current moves to integration of NHS and Social Care. While DH has a whole family on hand to help him on his journey, I cannot imagine how this would work for a single or widowed person.

Me again Granny23 with more practical advice. Round here there are groups for both the carer and the caree which then split giving carers a chance to have some human company.

I hope you have contacted the Alzheimer's Society and asked for their help.

Kitty - that's a very sensible way of arranging things Kitty but unless we move to ???? not much use to us here where the Groups are Not arranged in this way.

As to the Alzheimers 'Local' group, based in the City Centre, 7 miles away from us. with no adjacent parking, I have been badgered incessantly to attend or take DH to their walking groups, quizzes, exercise groups,monthly fine dining nights out, and bus trips by a long standing acquaintance who is now chair of the local Branch. Her own DH, who died last year was in long term care in a private nursing home, which is when she was able to get much involved in the charitable sector. Her stated reason for wanting us to attend is that they are having trouble keeping the numbers up and may therefore loose their funding. I am sorry to say (no I am not that I eventually, after several conversations with her, when she talked entirely to me, referred to DH in the 3rd person, although he was there and listening and stated that it would be best to join the groups now rather than when things inevitably get a whole lot worse. DH cannot manage buses due to his usless left arm and taxis, whilst fairly cheap in the County, are highly expensive in the City. This, is beyond our means on a regular basis as is 'fine dining'.

I must be sounding like a right Moaning Minnie, who finds fault with every suggestion proffered, but the reality is that there are real reasons why none of the goodies apparently on offer are accessible or obtainable. As a wee aside, during the past 3 years through all the assessments, tests and consultations, where I have been the accompanying adult or now apparently the designated carer - NOT ONE PERSON has every enquired about MY health or state of mind. They are totally unaware that I have chronic clinical depression, RLS, worsening stress incontinence and arthritis in my hands - and before anyone asks or suggests I do know all about these conditions and have tried without success or still use the appropriate medications and strategies (another wee aside - did you know that GPs are only allowed to prescribe the lowest dose of anti-depressants to patients over 70?)

I digress. The point is that I could be a potential axe murderer, manic depressive, alcoholic, drug addict or suffering from epilepsy, had strokes. No one has ever asked if I work, childmind or care for other sick or elderly relatives. They have asked if I can drive. It is just assumed that as 'the wife' I am the fit and proper person to be the carer/housekeeper/gardener/chauffeur/valet/secretary/tax accountant/nurse/chiropodist/cook/handyperson, etc,etc.

We all like to think that when people need a bit of help that we would rise to the challenge ourselves or at least ensure that they are pointed in the direction of those who can help. Unfortunately, although such services are, there 'on paper', due to cut backs, long waiting times, constant staff changes (we have now seen 4 different locum mental health Consultants) protocols and bureaucracy the path to getting the help is more like a maze with many dead ends. God help anyone who has physical as well as mental health problems as the different parts of the services do not communicate with each other. I know there are objections to turning every thread into something political but this issue IS political. One thing which could help is to direct sympathy/empathy/concern into campaigning for more funding and integration of all parts of the Social Care and Health Services. Stop squabbling about who should pay for what and minor matters such as health tourism and tackle the problems root and branch, Too late for those already in the system, but even if only in self interest, hear what we are saying, reflect on how much worse it will be in years to come and demand solutions. Where is the money to come from? Well for a start cancel the nuclear weapons which offer no deterrence or protection from modern terrorist attacks. Do you lie awake at nights worrying about Nuclear attacks? or is your fear more about contracting cancer or dementia?

You don't sound like a moaning minnie at all. You have gad a lot to cope with.

In England you would be entitled to a Carer's assessment which would focus entirely on your needs as a carer. Is it the same in Scotland? And, I know you would look after your husband out of love and, possibly, a sense of duty but you need help which should be forthcoming.

Your friend who volunteers for the Alzheimer's Society isn't all that is on offer! The support workers are wonderful.

This puts me off ever posting on GN now. I came here because the language on MN can at times be off putting. Here I now feel I must leave in case I feel the need to reach out to others who may understand, just in case something which is difficult for me is seen by others as frivolous. Shame as I thought GN was for all.

I'm sorry, Moocow did I say something to upset you.

Yes Kitty, when, somewhere down the line, DH's care is handed over to Social Work, I will be entitled to a Carer's assessment.
And Yes, I will continue care for DH as best I can as long as I can because he is the love of my life and my job is to protect him from stress and make his life as comfortable and happy as it can be. He loves his meals, rubbish TV, being outdoors, kisses and cuddles and my company. I must admit though that at times I could see him far enough and resent that my own interests, plans, freedom to come and go, to have a day off or attend meetings and meet my friends, have been curtailed. I also sorely miss his wise advice, sense of humour, the feeling that he was always there to support and help me. This is where the acceptance, discussed earlier, comes into play and I am grateful that he remains physically healthy, suffers no pain, requires no big operations. Dementia is kinder in that respect than other diseases.

I suspect that MooCow has not read all of this thread or seen the many other truly supportive ones.

Granny23 Thank you for helping us understand. You are an inspiration.

Moocow How many of the replies did you read? And did you understand how much support ALL those who needed it were getting - including annsixty who wasn't just complaining about others posting with small problems. She was saying, in code, that she is reaching the limit of her endurance of her big problems, and feeling very stressed.

I think everyone has times in their lives when even the black humour of a situation isn't enough. Some days it just doesn't 'cut it'.
Its lovely that people can reach out for support at such a time, and feel it coming back in waves, even if it is from people on a website
Most of those people too, have had times when everything just feels too much, and every step is an uphill battle. Its a comfort to know that others understand, or at least try to.