How do you get your young husband diagnosed?

[LemonCheesecake]

Hi,
I feel like I am intruding into your private world to which I don't yet belong, but my husband (aged 47) has I believe dementia which started almost 3 years ago, when he appeared to suffer a mini stroke. He has had many of these 'mini strokes' since and in the last 12 months his memory, personality, social skills etc etc have become much worse. He is not yet diagnosed and is very resistant to admitting he needs help or wanting to get help. Over the past 3 years he has, mostly on my request, seen various doctors and specialists all of whom can find nothing wrong, apart from one neurologist who agreed he had suffered some brain trauma following his 'mini stroke'.

Does anyone have any advice on how I can get him diagnosed? I have spoken to our GP on several occassions about my concerns but he can obviously only listen and needs my husband to go and ask for help, which he won't admit to or do.

Any ideas would be really helpful.

ps I am not some evil wife with a wild desire to have my husband diagnosed with Dementia, I just want him to get some help and be able to deal with it all better!

Thank you

 

[EMH1]

discussing health

This can be difficult. I would suggest sitting and speaking to your husband about your concerns over his health. I would not mention the D word personally as I think if someone did this with me I would be quite upset. Your husband has to approach someone himself - perhaps you could suggest going along with him.

My father had several TIAs and when they started we didn't know what they were. Mum and Dad saw a nurse together to ask what was happening and it started from there.

 

[Christin]

Hello and welcome to Talking Point.

Please don't think you are intruding, TP is a public forum for anyone with dementia and their carers and those looking for info such as yourself. I hope you find it helpful and supportive

This is a link to a podcast about diagnosing dementia - here. Please note it is an audio podcast.

And a fact sheet re diagnosing dementia and assessments -here

Please do remember that some symptoms can be caused by other conditions, such as stress or vitamin deficiencies. I would expect your GP to following all these avenues.

Very best wishes to you both. Please do let us know how you get on.

 

[loveahug]

Welcome to TP!

When the consultant looked at my mum's CT scan, not only did he diagnose Alzheimer's but he also pointed out that she had had a mini stroke in her cortex some time ago. So I would guess for any expert to know what effect you rhusband's stroked really had on his brain, you would need a CT scan.

Just a suggestion. I hope you get a lot more ideas from the others on here.

Best wishes

 

[FifiMo]

Can I suggest that you keep a diary and note all of the incidents and observations. What time of day they happened, how long thet lasted and whether there was any underlying reason for this eg was he over tired. The whole idea being that you can make the diary available to the doctors so they immediately get a historic view of what is happening, the extent of the deterioration and the current challenges being faced. This way the doctors have much more information than they would be able to gather in a 10 min appointment when the person is on their best behaviour or tries to cover up how bad things really are. You could copy the diary and send it to the consultant ahead of any appointments too, so they know in advance what to investigate when you arrive.

Another thing for you to ponder is how much support you give your husband (not that you shouldn't) and the extent to which you compensate for his lack of skills. Could it be that you both work as a well oiled team and that is what the doctors see rather than your husband's problems in all their glory. Do you accompany him on his appointments? S what impression would they get if you didn't? I know this might sound cruel but maybe you need to not necessarily stand back, but maybe push him forward into the limelight on his own when necessary. Don't underestimate the role of funding or the lack of it, in contributing to the lack of diagnosis. If they see that you are both getting on with life just fine then they might just let you get on with it until a crisis arises then they will take action at that time.

I hope you get the diagnosis soon and any treatment that might help,

Fiona

 

[Big Effort]

Hello LemonCheesecake,
I can imagine how worried and sad and helpless you must feel.
Mum was diagnosed by MRI scan..... they found holes where her hippocampus used to be. I imagine it is more difficult to be taken seriously about memory losswhen the person isn't elderly, but I would hunt for a GP who is 100% willing to get to the bottom of 'mini-strokes' and the like. And of course no one thinks you are a monster, this is a nightmare for you too.
Wish I had a magic wand to make things right..... Keep posting, and let us know how you get on. With a name like that, are you a good cook? Or do you like lemon cheesecake?
Sending you Best Possible Outcomes, my dear. Sometimes things do go right, and I hope they do for you and husband. Hugs, BE

 

[Butter]

Eventually my husband agreed to go to the GP for my sake. To stop me worrying. To shut me up. We have carried on like that for some years. He will say:
'I wouldn't be in this mess if you hadn't made such a fuss.'

You have my complete sympathy.

 

[LadyA]

And when my husband eventually went, he was absolutely furious with me and his GP for even thinking that there might be anything wrong with him! His hostility and aggression toward me particularly at that time were such that on his first visit to the Consultant, the doctor realised that I couldn't actually say anything because when he asked me how things were, how Wm actually was and what I had been noticing as regards changes, William turned his chair toward me and glared at me, just daring me to say anything was wrong with him! But I knew there was, the doctors knew there was, and I think deep down, William knew there was, and was fighting it the only way he knew how.

FifiMo is right - keep a detailed diary of the changes and incidents you are noticing. Not so you can "point the finger" at things but so you can show a pattern, and as time passes, it will show if there is a clear deterioration, particularly if he has any more TIAs.

And welcome to TP. Anyone who has any concerns about their own or a loved one's memory problems, whether diagnosed or not, belongs here.

 

[odyssey]

Keep fighting. Insist on seeing a Consultant who specialises in memory assessments. We were fobbed off for years - my dad failed to recover fully from routine surgery. By the time we had a diagnosis at 60 it was too late to commence many medications.

The earlier specialist help is in place, the greater the chances of slowing deterioration, providing support, and enabling yo both to continue living independently.

In Wales - brilliant resources - such as Ty Hapus in Barry. Similar initatives in some other areas.

 

[LemonCheesecake]

Wow . . . you've made me cry . . . thank you!

Having never 'blogged' until yesterday, I'm not sure if this is the correct way to reply to you all for your comments (I'll learn).

I posted my blog yesterday, because I was desperate for some ideas on what to do. Within minutes, support, encouragement and good ideas were arriving.

What lovely people you all are. Thank you. I will take on board your advice, particularly the diary idea and continue in my search for a diagnosis with more courage thanks for your comments.

 

[Poppy79]

Diagnosis difficulties

My mum (now 60) has been showing signs of memory loss for six years. She mislays things all the time, or forgets what she has used or consumed, and is convinced that person or persons unknown are persecuting her by moving things around/ stealing things / breaking into her home to steal food from the fridge. I've been on at her for years to see a GP about her memory loss, but she won't accept she has a problem. I staged an intervention about five years ago, asking the GP for a home appointment - which was a surprise to Mum when the GP turned up at the house unexpectedly, and she was furious and tried to send the GP packing. He got her to talk, did a quick memory test, and realised that when she couldn't remember the name of the current prime minister that yes, Mum did have a problem. But Mum was so angry that I'd done this, that she withdrew herself as a patient of that GP surgery. She wouldn't tell me which GP she'd moved to so I rang round every GP in the area to try and find out, but obviously they wouldn't tell me if she was a patient there or not. So it took another year before I found out which GP Mum had moved to. I rang them and they said they needed to build a relationship with the patient before they would talk to me about her. So I waited another 6 months, then made an appointment. The GP said, "Your mother is a woman of a certain age, it's normal to have memory loss." Then the police became involved because Mum was ringing them all the time reporting non-existent burglaries. The police rang social services who said that they couldn't section her because she wasn't a danger to herself or others. Mum, realising that she risked being sectioned if she kept calling the police, stopped contacting the police and started trying to hire private investigators to "catch the thief". I made another appointment with the GP, who said "We can't discuss confidential patient's notes." I kept saying "But she's my mum and I'm telling you there's a problem! She has no insight into her condition and so she won't ever come to you and admit that she has a problem!" I got the impression that the GP suspected me of being some unscrupulous person trying to get my mum put away. It went on like that for years. I started documenting every tiny little incident. Last year I wrote a long letter to the GP laying it all out, saying "She's leaving the cooker on, and it's only a matter of time before something bad happens, and it will be negligence if you -her GP- have ignored all the warning signs and just let it happen." I didn't hear anything back from the GP, not even a note to confirm they'd received my letter, but six months later they referred Mum to the local hospital's memory clinic. I know this because I happened to be at Mum's when the postman delivered a letter with a hospital stamp on the envelope and I asked her to tell me. Mum won't talk to me about anything, so I can only assume that maybe the GP asked a few more searching questions as a result of my letter. Anyway, Mum refused to make the appointment at the memory clinic and was taken off the waiting list, and I had to email the clinic and the GP to get a re-referral. I persuaded Mum to make the phone call for an appointment. Mum's first appointment is next month. So, I have a lot of sympathy for you struggling to get a diagnosis. It seems to be a combination of knowing how to work the system whilst allowing your loved one to manifest their problematic behaviour in such a way that local authorities can't help but notice it (and if it's wasting public money then they're more likely to want to sort it out), and just being bloody-minded. If you love someone then you'll risk their anger and displeasure to get them what they need. Mum doesn't think she needs this memory clinic appointment, but I know she does. Trust your instinct, be patient, have someone who lets you vent and gives you hugs, and be prepared for endless frustration with 'The System' and with particular individuals!

 

[mum23]

So sorry you and your hubby are having to deal with this not at all nice for either of you, but do not give up. I am not a medical professional of any sort but have had to do a lot of trawling the internet when my son's geneticist suggested my son may have a particular genetic condition. I am not saying this is what your hubby may have but I do think you may want to have a look at a condition called CADASIL:

There are no generally accepted diagnostic criteria for CADASIL.

The clinical presentation of CADASIL varies among and within families. The disease is characterized by five main symptoms: migraine with aura, subcortical ischemic events, mood disturbances, apathy, and cognitive impairment.

Migraine with aura occurs in 20%-40% of individuals with CADASIL. When present, it is the first symptom with a mean age of onset of 30 years (age range 6-48 years). In 50% of cases, atypical attacks occur with prolonged, basilar or hemiplegic aura and confusion, fever, meningitis or coma.

Transient ischemic attacks and ischemic stroke occur at a mean age of 47 years (age range 20-70 years), in most cases without conventional vascular risk factors. Ischemic event are subcortical and present in most individuals as lacunar syndromes.

Mood disturbances occur in 20% of affected individuals, with severe depressive episodes.

Apathy occurs in 40% of individuals and may be independent of depression.

Cognitive disturbance (dysexecutive syndrome) is progressive, with some preservation of recognition and semantic memory. This occurs as an isolated finding in 10% of affected individuals, but in most there is a concurrent stepwise deterioration with recurrent strokes.

http://www.ncbi.nlm.nih.gov/books/NBK1500/
This is not a condition many Dr's have a great deal of knowledge of so it may well be over looked.
I do hope it is not what your hubby has, take care warm wishes.

 

[SoyHJ]

You may remember that in my (rather long, rambling) post I said that, at the moment, we have no diagnosis and are waiting for tests and results. I don't have anywhere near the amount of experience that a lot of others have but I can't stress enough how much keeping a log of incidents and memory blanks has helped me. It is something concrete to show a doctor and, when you read it back, it helps to reassure you that these things really are happening ( ie, you haven't imagined all this...!) and you can see if there is any pattern at all. You don't say if there is any history of dementia in your husband's family. In my husband's case, there is and, because of this, the doctor (having talked privately to me) was able to 'strongly suggest' that he have a memory test 'just to use as a base line for comparison should there be any possible problem in the future'.
Incidentally, it was just a few weeks ago that my husband actually told me, for the first time, that he was worried about his memory. I happen to know that he had mentioned it quite a while previously to a friend's husband, long before he said anything to me. Do you think your husband's anger and refusal to admit there is anything wrong is caused in part by fear?
I so wish I could say something of more use. All I can say is that after I hesitantly wrote my first post yesterday and received replies ( yours made me cry!!) I felt that I was not alone and I hope you feel the same way.

 

[LemonCheesecake]

I'm not alone . . .

"Sometimes . . . everybody hurts" the Corrs, a song I've always liked even before the Corrs sang it, keeps going around in my head because, for the first time in ages, I don't feel so alone now, thanks to all the support and really useful comments I am getting here. It is so comforting to read comments virtually identical to situations I have already been in, I cannot tell you how good this is being for me.

Anyway, I have started a diary. It's harder to do than I imagined, because as you write down each days 'incident', reading it back it can sound quite silly and unimportant and makes me feel that may be I'm just blowing things up out of proportion, but I'm sure that I will get better at writing it and also over a period of time it should hopefully colour in the picture and help us get some 'professional' help.

From reading other blogs it seems a very common problem that people with dementia find it hard to admit they have problems and request help. It seems ridiculous that in these circumstances there isn't a 'plan' for worried friends or relatives to get the ball rolling in a simple and helpful way through their local GP's!

 

[optocarol]

It certainly is common for people to find it hard to admit. Have just come from a "conversation" with OH where he couldn't remember where my sister lives. "And it's not dementia." Oh yeah! I said, "So you know better than the specialist then?" (I know, I know it's not compassionate communication.) Reply, "Well, there's money in it there."

However, will stop my ranting. I would also encourage you to keep up the diary and trust your instincts on what is not normal.

Wish you the best.

 

[creativesarah]

I kept a diary and it really helped the doctors with diagnosis

 

[RFielding90]

Early diagnosis seems so much harder

Hello
My father was finally diagnosed last year, aged 59, after my step-Mum and I had noticed minor deteriorations for a number of years. I have to say that I think getting a diagnosis for a younger person seemed incredibly hard, although I know from TP now that it can be hard for many! I would agree that a diary of incidents, however small they seem, will help. I also found it hugely helpful (if only for my own sanity) when others noticed odd things or expressed concerns. Perhaps you might want to share your concerns with others that you trust to see if they notice anything?
Good luck and welcome to TP

 

[Caravanserai]

Getting a diagnosis for a loved one

Dear Lemon Cheesecake

Some doctors are really useless and no help at all. If your doctor won't help then try changing to another with more sensitivity and understanding. Don't be embarasssed about making a fuss and insist on being taken seriously. I did this for my mother (who is much older than your husband) who still won't admit to having any problems but was recently diagnosed as moderate severe Alzheimers. I resorted to writing to her doctor before going to see him with her so that he was fully in the picture. I do this regularly with clinics and other health professionals where they need to be put in the picture before they start talking to my mum -who actually comes across as being fairly rational. its important that they understand that asking someone with dementia about how they feel and what their symptoms are, they won't get a straight answer and must double check with you immediately. At least in some ways your husband's relative youth makes his behaviour less normal, so as others have suggested, do keep a record. Have you tried to talking to someone at the Alzheimers Society? I found them to be really on the ball and extremely helpful. They helped my family by explaining to us how we should deal with and speak to my mother and its given me the confidence to be much more forceful with doctors who are not trained to cope with dementia or understand that whilst someone may come across as very rational they do in fact have very real problems. Do persist - you'll make headway.

 

[tropicbird]

Your post has helped me too Lemoncheesecake.

From Tropicbird.
I joined this forum because I too am finding my husband's loss of short term memory very difficult to cope with sometimes. We are both retired, but we both agree that he may have had a mini-incident involving his brain as long as ten years ago. I associate that time with him being retired and me still working. I used to get really stressed and angry - sometimes taking my anger out on him. I feel somewhat responsible if the anger upset him so that he had a brain event. I know his faced blanched and his eyes sank into his face while I vented my anger, when it wasn't really his fault. What a price to pay....but he does not blame me, and takes his memory deterioration as simple ageing.

We both notice that his abilities and memory have been slowly deteriorating ever since.
He agreed to a 'brain' - psychiatric assessment before Xmas 2012, but was due for an eye cataract operation. The psychiatrist suggested that we return after the eye op. My husband has not yet agreed to return.
My husband's eye-sight has improved, but the short-term memory has not. He is so much better some days than others, I can't help feeling that some days he cannot be bothered and WONT! " None so deaf as WONT hear" etc. So this may not be dementia but just about getting old! I am ten years younger - 67.

I am trying to keep a diary of our 'good times' as well, and I tend to focus on them every day. I take better control of my anger, with anger management suggestions I have found on the internet.
I try to concentrate on what he CAN do, and fill in the spaces around. Fortunately he is quite fit, and can still get around, even drive his car and agree that I should accompany him. I give him reassurance and as much love as I can share. He loves sharing love and old-time memories!
But he has a split memory - sometimes he thinks I am someone else, and that his other wife has gone away. I tell him sometimes that I am all of his other wives rolled into one! He tries hard to accept that, and tries hard to live in my reality, while sometimes experiencing another.
He hallucinates about other people being just over there, out of the corner of his eye, that I don't see. When I look of course they have disappeared.
In time he may be more willing to have those assessments again.

Being younger and with more 'brain power', I try to wait for his more lucid times and discuss important things then. We have agreed to put everything into each other's names, to make it easier later, like a private living will. Our cars are in both names. We have made mirror wills, signed with a solicitor as witness. All there is left to do is the making of one of our bank accounts joint, with 'either-or' signatures. Banks are very willing to assist with the necessary forms, over the telephone by telephone banking and online, and attached to an email if you need them.

Life is so short, that we both really think we want a good quality of life in our remaining years. He has conquered bladder cancer since 2006 and is now on a six monthy maintenance programme. Did that have a hand in his current brain deterioration? I don't know. My husband has always suffered from sleep apnea that specialists say interferes with brain function.

Now together we shall find a way of living with memory loss, whatever labels it might have. I think I have found a specialist psychotherapist who can help me / us - it is a matter of searching and persevering through the good and bad times to find people to support you both and help you both through the worst times.
The carer in us needs help and support. I invite as many people as possible to visit us at home, since that keeps my husband - both of us- in touch with things - I was going to say the 'real world', but everyone's reality is slightly different, and with similar interests, there is, of course, a lot of overlap.

I do think that finding a post about a spouse has helped me a good deal. The ones about a parent with dementia are somewhat different cases.
Writing this has helped me too - many thanks for this forum and the kind perceptive people who place and reply to posts. My love goes out to you all.
Any suggestions to help my case will be much appreciated.

 

[embers]

diagnosis for your young husband

This is my first experience of using a blog and this system so I am sorry if my comments should not be written here. My heart went out to both of you and I know it's a sensitive position to be in. I was diagnosed with early onset alzheimers when I was 56. It was noted by my daughter who does not live locally and she came home to numerous repetitive messages on her answer phone. She kept a log and spoke with my husband who was quite protective of me. I have been physically ill for over 20 years and he thought it was my medication. I had read an article linking thyroid problems with alzheimers disease. As I have 3 generations with multiple relatives with this diagnosis and I have a thyroid problem I raised this with my GP. She felt it would only be an issue if my thyroid gland was not well controlled.
I became more physically and mentally unwell, confusing day and night, falling, looking for my school uniform but being distressed because I didn't know what it looked like. My daughter spoke with my GP who suggested I call in. I had the usual 'tests' was referred to an endocrinologist and the mental health team for people under 65. Thyroid gland totally out of control but resolved. Had CT scan but no recall of that which showed nothing, had another test (radio active dye used something like SERC test which showed poor blood supply to my frontal lobe. Now on medication. Other relatives with alzheimers have been asked to call in for 'general health checks' or as my daughter did, she bit with bullet, knew all was not well and took the risk of us falling out. I still ask the CPN 'do you think they have made a make' every time we speak. I wish you both well, there is no easy answer but you are trying to do what is best. What do the alzheimers association suggest? Sorry if you have already spoken with them, I may not have found all your blogs.