Husband 52 with dementia

[Fenton12]

Hello

This is my first time talking to anyone other than friends about this and I am still at the stage of not really wanting to admit that this is happening to us. If you don't mind I will give you some background and I am sorry if it is a bit of a ramble but will give you some idea where we are at the moment.

About two years ago my husband who was 50 began driving to work in the wrong direction, not really a problem but was odd. When he was questioned he said he wanted to take a different route - he did arrive at work on time and so I didn't think too much about it at the time. Shortly after when I was watching him reversing out of the drive I noticed that he was not turning the wheel in the correct direction to where he wanted to go and could not seem to understand what he was doing. Around this time he started to experience problems at work (he had worked there 34 years) and he told me he was being bullied for not being able to do his job correctly and could not keep up but of course he did not know why. The company were very heavy handed and when he could not give them an explanation they put him on a disciplinary and at that point we went to the doctor who signed him off for 4 months with work related stress. This went on until last Christmas when he felt he had no alternative but to resign because he knew his work would push him out. We managed to find him another job with no stress and watched to see if his mood improved but unfortunately although he appeared to do the job ok he was finding it more and more difficult to get to work - he could no longer fill the vehicle up with petrol and people told me he was going around roundabouts the wrong way - he finally finished work on the 1 August. Meanwhile we were referred to a consultant who carried out a lumber puncture, CT, MRI, EEG and lots of blood tests. He also went for psychology tests at a specialist centre. We received the results back on Monday - everything is clear but they say he has degenerative brain disease and have referred him to another specialist centre where they are going to carry out a SPECT scan and possible he will have a brain biopsy. I really cant believe this is happening and have not really accepted that this is a dementia. He can no longer find rooms in the house and although seems ok in conversation, knows everyone he has great difficulty with directions. Sorry for the long post but I would be very grateful for any support as he is very frustrated and is anxious to get back to normal and it is very difficult to handle sometimes. Thank you for listening

 

[Hellyg]

Hello

Sorry to hear about your husband. My husband was diagnosed with young onset alzhemiers just over 4 weeks ago, he is 55. I was in shock, he had a SPECT scan, and when when we went to the follow up appointment it was confirmed as Alzheimer's. It was a complete shock, despite all the symptoms I guess is still hoped it was something else, such as stress.

My husband symptoms are somewhat different to your husband, he has trouble with following conversations and words, but can still find his way round ok and can still drive ok. I am learning that everyone experiences different symptoms and the disease progresses in different ways.

Whilst the diagnosis was the last thing I wanted, now 4 weeks later I feel that now we know we can make the relevant plans and I am so much more patient with him as I know it is not his fault.

I found the Alzheimer's Society website and the local Alzheimer's office a great source of information and all the posts on Talking Point. As and when you get the results of for SPECT scan hopefully you will know more about the exact diagnosis. How does your husband feel about it?

If you want to private message me feel free as I would be happy to chat. I found it a great help to chat with people experiencing the same as me.

 

[polly1]

Hello
Sorry to hear about you husband's diagnosis.
My husband was diagnosed 3 years ago at the age of 57, with Posterior Cortical Atrophy. This is believed to be a visual variant of Alzheimer's. His symptoms initially were connected with his driving and his vision. He now gets 'lost' whilst at home and struggles to find the right room. I know you have more tests to be done but wonder if this could be the type of brain illness your husband has. There are fact sheets on this web site for PCA that detail more symptoms. The initial shock at hearing a diagnosis of any type of dementia is to start with, unbearable. You have come to the right place for support. There is always someone on here day or night, to share your journey. Please feel free to private message me if you think I can help!
Very best wishes
Polly1

 

[Germer]

Husband with Young onset in assessment unit

I feel for you all and can only offer an ear and empathy but you have it. No one understands this awful disease except those of us going through the journey.
My husband was diagnosed 5 years ago at 57. I recently have needed help as Im not sleeping and he is becoming incontinent and starting to be a bit aggressive. I know its frustration especially not being able to speak or explain to me what he needs. My heart is broken to see him in the unit with people who are 30 years older and have totally different problems as he is still very aware of everything that is going on. The staff are great and want me to look at placement in a home. My brother is very against this and says it I cant cope he will take him. I feel so guilty and a failure as I love my husband and want to bring him home but am so afraid that its the wrong thing to do for each of us.

 

[jaymor]

Hello Fenton and welcome to TP. I can't add any more to the great advice already given other than to say please use the forum and members to help you through your problems.

There is so much experience that we can pass on as advice and support. My husband was diagnosed at 62 but had had problems for several years prior to diagnosis that we had put down to stress which seems to be a common assumption when it happens to younger people.

 

[Wendy7713]

Hello all - it's so nice to see such support being offered when it's needed most. I'm 58 yrs young and was diagnosed with early onset Alzheimers in July last year. It's such a traumatic time while you're getting your head around it. I remember feeling abandoned by clinicians, but support is out there but it often has to be found rather than it coming to you as it should do. Please feel free to read my blog that I write daily - it may provide support and information or just a good laugh hopefully. whichmeamitoday.wordpress.com

 

[kingybell]

Hi,

I can fully empathise. My mum in law was diagnosed aged 56 just before Christmas. I am finding it extremely frustrating to get any help for her. She is able to use her long term memory to do most things such as cook and clean and day to day seems relatively fine. She has racked up a lot of debt over past few years as she forgets she's got loans and forgets to pay them back.

My husband and I did the dementia friends training in December and found it very useful. It helped explain how to manage and cope with someone with dementia and particularly to concentrate on their emotional memories rather than physical memories.

We are in this together so just shout if you want to discuss.

 

[Fenton12]

Thank you for your warm welcome. It is such a help to speak to others who understand - don't get me wrong I have lots of friends and family but no one really understands how it is to live with this. My husband still has no firm diagnosis but having been to the specialist yesterday she has said it she feels it is a rare form because no tests are detecting the problem - the only one left for us is a spect scan and possibly a brain biopsy (which may not be needed depending on the spect). Things do seem to be deteriorating very fast here and my husband can no longer go outside of the gate on his own - just stands in the garden or sits in the living room. He cant seem to plan anything out so really cant do anything. From his chair he appears normal and is able to talk about things but I am noticing a difference in that he repeats things I am saying and asks about something we talked about previously so even that is not right now. Things would be smoother here if he would only listen to what I tell him to do but he doesnt seem to do that and then that causes friction and he gets very bad tempered. He has finally been awarded the high rates on both parts of PIP which has been a great help given that we are still paying a mortgage. I am trying to take a day at a time but it is so difficult not to think about the future and how we will manage. Thanks for listening

 

[jaymor]

Hi Fenton,

It may be that your husband is unable to process what you are asking him to do or he can only remember part of what you asked so is unsure what it is you want him to do.

It certainly is frustrating for you, I remember it well.

 

[tss502]

Hi Fenton,

My husband was diagnosed with early onset Alzheimers about 4 months ago at the age of 55. Like you we'd noticed things were not quite right over a period of time, but put it down to stress or depression. It was a great shock to receive the diagnosis; my husband was devastated and pretty much refused to talk about it, also refusing at first to contemplate any medication.

He's now on medication and things seem a bit better. He recently said to me that when he got the diagnosis it felt like falling off a cliff and he seriously thought he was going to be dead within 6 months. He now feels that things aren't so bad and that he can go on living with a good quality of life for the foreseeable future. His symptons are not as pronounced as those experienced by your husband, but he does struggle with directions and with tasks which formerly were simple for him, he finds any sort of problem-solving activity really difficult now and struggles to understand simple instructions. We found though, that with practice, some things would come back to him - he was quite willing to give up at first, but will encouragement he got there in the end.

I think the thing I found that helped most in the early days and weeks of the diagnosis was to concentrate on small things that you can achieve now, try not to worry too much about what may happen in the future, it's totally unpredictable. I found it helped me to concentrate on practical things that I could do which helped - for example starting to set up a lasting power of attorney. I also benefitted hugely from counselling, although my husband refused this. These gave me back a sense that I had some level of control over what was happening. The Alzheimer's society can offer practical and emotional help, and try to ensure he gets to do some of the things he always enjoyed doing if that is possible - we go for regular walks and my husband is a keen cyclist, and is helping out at a local volunteer workshop. I do get frustrated with him, especially when he struggles to do things which I know used to be easily within his grasp, but I've found that getting angry does not help and he doesn't understand it when I do anyway. Having someone else who you can talk to about these frustrations really helps - whether that's a counsellor, support worker, friend or via an online forum like this one. I found that keeping a journal has also helped me to deal with the emotional aspects.

Good luck to both of you in this journey.