Absolutely Gobsmacked Need Advice!

[unsure]

Sorry about the long story but please do read all.

I have been very concerned about my partner for several months. He is a spritely 75 year old who until recently was in good nick for his age. Looking back over a couple of years I suppose there was some signs of memory loss but I just thought that was normal as people get older. Over the past few months things have really gone down hill to the point where now he is unable to organise at all. So cooking a meal is impossibble, he doesn't seem to know where his clothes are kept (even though he has a family sized double wardrobe all to himself). He has lost his bank cards on several occasions. He stopped paying the council tax, which he used to pay over the counter every month. I only found out when the bailiffs turned up.

I had tried to persuade him to see a doctor on several occasions but he wouldn't accept that there was anything wrong. The turning point came when the police brought him home. The police officer explained that he had tried to buy something but didn't have any money and that he got very confused. The police were obviously called by the shop manager and they gave him a lift home. However, he first took them to an old address where we lived 13 years ago. Then he eventually remembered the road he lived on but not the district. They ended up going to every same name road in the West Midlands (Unfortunately we live in Worcestershire not the West Midlands).

This event made me act and although my partner was still a bit reluctant I made an appointment for the doctor to call at our home. There wasn't actually a set time for the doctor to call but it would be on a particular day between 9am and 1pm. I had to pop out for 1/2 an hour during this time and of course the doctor came then. I did catch the doctor just before she left and explained why I had called her out and that the police had advised me to seek medical advice. She did ask me what relation I was to Keith and I told her I was his partner. At the end the doctor mentioned that she would organise some tests and a scan.

A few days later my partner mentioned to me that he had received a phone call to say that he needed to go to the hospital for a scan the following day at 4pm. I was surprised that it came through so fast and a little bit concerned as he hadn't made a note of the details. I decided to phone the hospital just to make sure. The hospital did not have an appointment for him, They suggested I phone my local doctors surgery. The receptionist at the doctors was helpful and eventually found that he actually had an appointment two days later at the doctors to have a glucose test at 9am. There was also instructions that he wasn't to eat or drink anything during the morning and that he would be given a glucose drink and then would need to leave the doctors and return 2 hours later for a blood test. If i hadn't written down those instructions I would have had a big problem remembering all that! How do they expect somebody with a memory problem to cope with those instructions given verbally over the telephone? Anyway we went along and the test was done, he was booked in to have another test (cholestral) a week later.

We went along to the cholestral test and the nurse said that his cholestral was to high (5.6, whatever that means). At this point she asked if I was Keiths son to which I replied No, Im his partner. The nurse then turned to my partner and asked him if he wanted me to remain in the room or she could ask me to leave. Luckily keith said that he wanted me to stay. I was shocked by the suddeness of this as I han't really said any thing up to that point accept that I did all the cooking (obviously because he found it to difficult to do?). At the end of this the nurse let keith know that he was considered to be clinically obese and if his cholestral didn't fall below 5.5 within 3 months he would have to go on medication. I did ask about the problem with his confusion, the nurse didn't seem aware of this and checked her computer. She scrolled down the page quite a way and came to the doctors note. It seems the doctor had penciled in a brain scan in about 6 weeks time. Then the nurse said something completely odd, "I see he got cofused in Birmingham, oh well, everyone gets confused when in Birmingham. To which I replied "Does everyone get a lift home by the police?", it seems that information wasn't on his record. The nurse asked Keith some questions, what day, what month, what season, Who is the prime minister. After some thought keith did answer the first two correctly. for the season he said "middle of summer" (late march?) which was surprising as he is a keen gardener and knows the seasons. He also wasn't able to give the PM's name, some people may fall down on that one but keith has been involved in politics for 60 years! Then it was over, no details, no explaination, no diagnosis on his actual medical complaint. The only thing we have learned is that with a 38 inch waist he is clinically obese.

I am very disappointed at the total lack of support and information we received. Where do we go from here?

I really need some advice.

Should I complain to the doctors (or elsewhere)? Should I not complain as this could effect his treatment? Do I make another apointment with the doctors? Should I contact Social Services?Any advice would be appreciated.

Thanks
Kevin

 

[Grannie G]

Hello Kevin

Keep a diary to log Keith`s behaviour over the next two weeks. Make sure you note dates and times of all that concerns you. Then make an appointment with the doctor by yourself to discuss this. Even if the doctor won`t talk she will listen and then perhaps suggest where you go from there.
It sounds as if your concerns about Keith`s state of mind are not being taken as seriously as the doctor`s concerns about his physical health.
Pleas let us know how you get on.

 

[Brucie]

The diary plan is a good one on a number of counts

• it is something to show doctors
• it helps us remember day-to-day happenings - otherwise development in behaviours simply merges into a mess
• it shows we are concerned enough to keep track

Log anything that seems unusual, whether good, or bad. For instance, sometimes after a 'bad' period, something will happen where we think "wow! he hasn't remembered/done/etc that for ages"

My cholesterol was in the region of 5-6 for years. I'm a lanky person so there was not a great concern. However my Mum had very high cholesterol levels and diabetes, and died of stroke, so I am now on statins, and my level dropped to 4.3 with no change in diet [though I eat well, so didn't need to change]

Doctors and nurses are notoriously bad at the MMSE [Mini Mental State Exam] that your nurse attempted some of.

My Jan had the test with our GP and answered "I don't know" to every question, including PM's name. The GP said to me "It can't be dementia, because if it were she would have invented elaborate excuses for why she didn't know. She must be depressed"

This was absolute tosh of course, and it put back the diagnosis by years, as I believed him.

It is worth getting a referral to a specialist if he will accept that, in my opinion.

 

[Lynne]

Hi Kevin

I'm sorry to read the succession of incompetences you have experienced, getting a diagnosis can be very difficult and frustrating.
Whilst it shouldn't be so, I am not surprised by some of the 'attitude' you came across as regards your relationship to Keith, as the concept of civil partnerships is still comparitively new & health professionals are notoriously conservative & old-fashioned. (Apologies to any reading this who are exceptions!)

I'm not sure how the law stands as regards "next of kin" for Keith, but I got around the "Doctor's confidentiality" issue by asking my Mum to sign a (typed) letter confirming her agreement to me being fully informed & involved in all aspects of her medical treatment. If Keith would do something similar, that might make life easier. Perhaps if you would sign a similar letter to your own doctor confirming you would wish him to be informed about any medical care you might need, it might be more acceptable to him as a 'mutual' arrangement.

You might also consider whether Power of Attorney would be a good idea now, as this has to be done while Keith is still considered competent to understand what it involves. (Whether any blood relatives would have an issue with this might be another matter.)

Best wishes

 

[Skye]

Hi Kevin

Sorry you're getting so little support.

First of all, don't worry that Keith was asked for permission for the nurse to talk to you, the doctor asked my husband's permission. It's all part of the data protection act.

Good suggestions to keep a diary, and you need to make another appointment for both of you to see the doctor, and ask for a referral to the mental health consultant.

He is the person who will arrange for a proper mmse test, and a scan. That's the only way you'll get a diagnosis, and medication if appropriate.

You may have to insist, but it is your right to see a consultant.

Let us know how you get on.

 

[TinaT]

You are not alone in experiencing 'partnership' problems where the National Health Service is concerned.

My son and his partner Sarah had been together from being in their teens right through to their 30's when she developed leukaemia. On countless occasions he was left feeling 'an outsider' with no legal connection to his partner and was more or less ignored unless Sarah insisted that he must take full part in all her treatment. Sadly her leukaemia turned out to be incurable and three weeks before she died they finally got married, mainly to prevent the same complications after death which they had experienced previously.

Of course there are issues of patient confidentiality which must be addressed by any health care professional. I would suggest that if your partner does get a diagnosis of dementia, you would be well advised to seek legal help regarding your position as partners before it becomes too late. As dementia is a progressive, degenerative disease, it is important that this is sorted out at the earliest opportunity for both your sakes.

Regarding getting diagnosis, I think the key is to get proper mental health specialists involved in his care. If it is possible I would try to get your partner to ask for an appointment with a Consultant Geriatrician/Specialist in Elderly Mental Health. Once this is obtained, it usually results in a diagnosis and better management of the illness.

Good luck to you and your partner. Let us know how you get on.

xxTinaT

 

[unsure]

Thanks Silvia I will do as you suggest and keep a diary. I would prefer to talk to the doctor without Keith being present as I find it very difficult to talk about him (and the problems he's having) in front of him. I don't wish to embarrass him or cause him distress.

Thanks Bruce. I think the cholestral test is aotomatically given to everyone who visits the doctor. I have been doing a lot of reading about dementia to try to understand whats happening with keith and what I need to do to help him. You mentioned that the GP diagnosed depression, that seems to be a common occurrence in what I've read so far. Does depression and dementia have similar symptoms? The doctor has supposedly booked a brain scan, will that lead to a specialist becoming involved or do I have to specifically request this?

Thanks Lynne. I did read a very interesting document which was prepared by a trade union for health proffesionals. It deals specifically with how medical staff should behave towards people like me and my partner. It was very intesting as it mentioned the term "next of kin", Supposedly this term holds no legal weight until a person dies and then only if the deceased hasn't left a will. Sadly I didn't save the link to this document, I'll have to try and find it again. I think your idea of a signed letter is an excellent idea.

I have been looking at the power of attorney route. The law was changed recently and now it is called Lasting power of attorney (LPA). There is now two parts; Property and Affairs LPA and Personal Welfare LPA. "an LPA has no legal standing until it is registered with the Office of the Public Guardian". I got this info from the Directgov site and it has lots more useful information for carers. The link is http://www.direct.gov.uk/en/Over50s/HomeAndCommunity/Carers/DG_10026855 and http://www.direct.gov.uk/en/HealthAndWellBeing/index.htm


Hazel, thank you for explaining the reason behind the nurse asking permission and for the other information, I will certainly do as you suggest. I found another very interesting site (will I get in trouble for pasting all these links?) The Royal College of Psychiatrists http://www.rcpsych.ac.uk/mentalhealthinfoforall/olderpeople/dementia-book/3diagnosis.aspx
This site gives a lot of information in an easy to read format.

TinaT - I have just re-read my original post and I realise what an idiot I've been. All through the post I mention that we are partners, when the doctor and nurse asked about our relationship I said "I'm his partner". What I should have said was "I'm his civil partner" we got hitched last year . I shall certainly follow your advice and will let you know how I get on.

Thanks to all of you. Before coming to this board I was feeling low and very frustrated about it all, now I have all this advice I will go and bang my head against the doctors wall even harder, I hope for a break through!

Regards
Kevin

 

[jenniferpa]

As a civil partner you have considerably more rights that you have as a partner (although not everybody will be on the ball about that). However, I'm glad you've mentioned the LPA - everyone should have these (partner or not) because they give far more rights than even a fomalized partnership or marriage offers. While an LPA can be drawn up by a solicitor, they can be done as per the instructions on the public guardianship site. I would suggest you do this asap.

http://www.publicguardian.gov.uk/