Feeling so alone

[Margaret59]

Hi there,
My partner was recently admitted to hospital with acute confusion. 9 days later he came home, still very confused. He sees things that are not there, talks to people who are not here, gets up in the night and wanders around the house, thinks he is still at work but he is retired. Makes a cup of tea without a tea bag, puts milk in a cupboard, salt and pepper in the fridge, asks how many people are staying for dinner when it is only the two of us in the house. Continually gets his wallet or paperwork out and goes through it over and over again. He gets agitated and aggressive which is so out of character. I could go on and on. I even started to keep a diary as I thought it might help with a diagnosis. It is very distressing for both of us. He cannot understand why he is so confused and gets very upset.
More recently he is forgetting who I am.
The GP has done some tests but as yet all Ive been told is that it could be dementia.
I'm sorry if I appear to be rambling on but it's good to get it out of my system.

 

[Kevinl]

Hi Maggie, welcome to TP
Please feel free to ramble away all you like
A lot of what you say rings bells a the early form of some sort of dementia the inconstant and erratic behaviour and the obsession with certain things, what did the hospital say when they discharged him and what does the GP think is the best way forward are the relevant things?
You'll find a lot of advise on here from all of us who've been there before.
K

 

[Clunchman]

Greetings and welcome. You are not alone. Many of us face similar situations daily.
It might be worth checking out Alzheimers Uk Web site info. Also Dementia Uk may have useful info on it.

 

[Grannie G]

Hello Margaret59

I`m so sorry to read your post , understand so clearly the fears and anxiety in the early stages which may be leading to a diagnosis.

Please don`t worry about rambling. This is the place to ramble as much as you need and I know there will be many people who will identify with you.

Your husband seems to be going through a rapid progression of his confusion and I do hope the doctors can come to a decision about his diagnosis.

Keep in touch and off load here as much as you need.

 

[oilovlam]

The symptoms probably sound very familiar to people on this forum. But I believe there are other illnesses that can cause dementia like symptoms. What surprises me is what seems like the rapid onset of the symptoms. I don't know the typical timeframe for dementia but in my 'experience' the decline was fairly slow. You would have picked up on a change of behaviour and thought "That's odd". But to get a big shift in behaviour seems odd.

I do know that if people have an operation the stress (possible something to do with the anaesthetic) can cause a big change in behaviour.

Was a CT scan done? They really need to remove other possible causes from the equation, especially because of the rapid onset. I would put pressure on the GP that you need referral to a specialist ASAP.

Standard dementia test (Can they draw a clock face?) won't suffice IMO.

PS I don't have any medical experience. Hopefully someone here can give you a better guidance on what you need to do.

 

[Casbow]

Hello Margaret. So sorry for all the problems you and your husband are having to deal with. I hope the doctor will give your husband a brain scan if the test results don't come back with any other illness Once he gets a proper diagnosis there is medication that will help. Your husband seems to have a lot of symptoms that I feel must have been coming on for a while. Had you noticed anything for a few months that didn't seem quite right. My husbands first symptom was panic attacks. Then quickly followed by simply not functioning properly. I hope you can soon find out whats wrong.x

 

[DixonC]

Hi Margaret, All these symptoms fit my husband exactly. He was diagnosed with AD 20mnths ago but with hindsight there were subtle changes for around 8yrs and now there is a rapid progression. He had a CT scan which is how the diagnosis was made but as someone else has said the symptoms can be due to other things, our GP went down the depression/anxiety path for a year before the scan.
Rest assured though you can let off steam as much as you want here, we all do! and I hope you soon have a firm diagnosis then at least you know what you are dealing with. Just remember the unpleasant aspects presenting now are not your lovely husband but what is going on against his will

 

[Poet1]

Yes, having no one to share the day by day difficulties does isolate one. I am still at the stage of "pretending" all is normal. I did notice that a lady's group running the village hall café gave her a trial a few months ago but did not follow up with an invitation to take part. It seems that they quietly "forgot" about the trial.


Sent from my iPad using Talking Point

 

[JaquelineM]

Hi there,
My partner was recently admitted to hospital with acute confusion. 9 days later he came home, still very confused. He sees things that are not there, talks to people who are not here, gets up in the night and wanders around the house, thinks he is still at work but he is retired. Makes a cup of tea without a tea bag, puts milk in a cupboard, salt and pepper in the fridge, asks how many people are staying for dinner when it is only the two of us in the house. Continually gets his wallet or paperwork out and goes through it over and over again. He gets agitated and aggressive which is so out of character. I could go on and on. I even started to keep a diary as I thought it might help with a diagnosis. It is very distressing for both of us. He cannot understand why he is so confused and gets very upset.
More recently he is forgetting who I am.
The GP has done some tests but as yet all Ive been told is that it could be dementia.
I'm sorry if I appear to be rambling on but it's good to get it out of my system.

Hi Margaret , almost everything you say about your husband's current behaviour resonates with me , my OH does so many of the things you mention ,he was diagnosed two and a half years ago with Alzheimer's , so it sounds like dementia to me , I'm sorry it's taking so long to get a diagnosis , at least once you know what it is you know what your dealing with ( up to a point ! ) . Sending you hugs xxx

 

[Margaret59]

Thank you to everyone who replied to my message

I would really like to thank everyone for their advice and support.
A CT scan was done in hospital but showed nothing. All bloods and urine checked and clear. An ECG done which was all clear too.
I can say, however, that I had noticed little things over the past year or so. Telling me the same thing over and over, forgetting the route we would drive to local towns, mood swings which were totally out of character.
When he was admitted to hospital he kept saying he was in "this house" and there were other people in his room. He distrusted the doctors. Put his belongings into other people's lockers. I would visit and he would only have one slipper on, pyjamas inside out, toothbrush under his pillow. Wouldn't remember that I had visited every day.
The first doctor I spoke to said it was dementia and asked if I thought I would need support at home. The discharge co-ordinator spoke to me about setting up a plan for when he was discharged. Then a few days later another Dr informed me that he was going to be discharged as keeping him in hospital was not necessary. I totally understood that but questioned the fact that he had become more confused and asked if any support had been put in place to which he replied I wouldn't have any as he could wash, dress and feed himself.
I asked to speak to the Mental Health team and explained that I was not happy as I had been told two different things by two different drs.
The only thing I was told to do after discharge was make an appointment with our GP. She arranged for full bloods and an ECG which as I said earlier were both normal. We are going to see GP again tomorrow so hopefully she will have an idea of what to do next.
Today has been a bad day, my OH asked if I got paid for looking after him, again he didn't realise who I was. He wanted to know if I had any children and what age I was. He has been very confused all day.
I have decided to make a memory board and see if this helps in any way.

X

 

[Casbow]

I find the lack of a diagnosis rather strange. I reckon everyone on here reading your posts feels that they could diagnose for you. Of course we can't but, hope that we are wrong anyway. It took me a year to get my husband diagnosed. Its almost as if they don't want to do it. I wish you well and your husband of course. Keep posting. We all care.x

 

[Margaret59]

I find the lack of a diagnosis rather strange. I reckon everyone on here reading your posts feels that they could diagnose for you. Of course we can't but, hope that we are wrong anyway. It took me a year to get my husband diagnosed. Its almost as if they don't want to do it. I wish you well and your husband of course. Keep posting. We all care.x

Hi Casbow,

Yes, it is very strange isn't it !!!????
One of the questions I asked at the hospital was could it be vascular dementia. From experience I knew how rapid this could be. The answer was no.
I spend as much time as I can, normally when my OH has gone to bed, researching as many websites as I can relating to Alzheimer's and Dementia. I know that a lot of the symptoms are the same as other illness's but in my heart of hearts I think I am preparing myself for what I believe it to be.

My daughter who is a psychiatric nurse is convinced that it is some form of dementia. She visited a few weeks ago and after she left the following day what followed was very upsetting. My OH was convinced she was still here and even sat talking to her.
The following day was much worse, he ended up in tears and just didnt seem to know what was going on or where he was. Then he kept looking at a photograph of my daughter and my father and when I told him who they were he just repeated their names over and over again. A while later I put the TV on and it was the weather forecast. It was cloudy and all he kept saying was cloud, cloud, cloud.
It must be awful for him as he does get very frustrated and keeps asking why he gets confused. I know that a diagnosis is what we both need but I am also so scared of how he will react to it if it is what I think it is.

I am so grateful for all the support I have been given so far on this site. I will definitely continue to post on it. It is a blessing in disguise knowing that I can "talk" to people who understand.

I read a post earlier and someone was talking about how friends no longer visited like they did before her OH became ill. I already understand where they are coming from. After discharge from hospital we had visitors turning up daily but now we are just down to one close friend who pops in on a weekly basis. Perhaps some people just don't know what to say, maybe they find it too distressing. I've even had some say that if it got too much for me I should walk away.
That's the one thing I won't do. I will be here through thick and thin.
X

 

[Mal2]

Hi Margaret. Sorry you are having such problems. I agree with everyone. Diagnosis should not take this long. My husband was diagnosed within a month. We were at the GP's having his Diabetes check up. Before leaving she asked if there was anything else. I mentioned he was getting very forgetful, much to his disgust with his eyebrows being raised up and down, as he did when he didn't like what was being said.

GP asked if we would like to have an appointment at the Mental health Centre and a brain scan. She gave us a letter for the hospital for the scan, and, we received an appointment shortly after. They explained the brain shrinks as we get older, hence people getting a little forgetful in old age. My husbands had shrunk more than they would expect for a man of his age of 66.

He had tests, the usual one was they would tell him 3 items, I remember his, an apple, table and penny. He remembered that for some time. Word association, the apple on the table cost a penny. He was referred to the memory clinic and prescribed Aricept. He never acknowledged anything was wrong. Every 6 months he went for his check up at the clinic, said the same thing when we left, waste of time keep coming here, there's nothing wrong with me. To which I would say, of course not, they are just checking you are ok.

Keep pushing your GP to get things moving, so you can have some answers soon. Good luck M xxx

 

[Diannie]

Hi Margaret. My husband also showed the same symptoms as yours. He also had a CT scan which didn't show anything. However the Consultant we saw said he felt it needed following up with a MRI. This confirmed it was Alzheimer's. I asked how come the CT wasn't conclusive. He said a MRI was more in depth.


Sent from my iPad using Talking Point

 

[jaymor]

My husband's diagnosis came from a MRI scan too.

 

[Izzy]

My husband's diagnosis came from a MRI scan too.

Mine too.

 

[oilovlam]

MRI can be tricky to do. My father went for CT & MRI at the same time (not dementia related), the CT scan went fine but the MRI didn't happen because they said he kept moving. They almost threw him out of the room, I guess for wasting their time.....I was annoyed.

 

[jennypie]

Hi Margaret your husbands symptoms do seem to of escalated very quickly infection can make things a lot worse very quickly I'm assuming this has been checked out?
We can all identify with all the behavioural issues you have mentioned but it's a diagnosis you need - my oh had memory testing over a few appointments with a psychologist a brain scan etc to come to diagnosis of vasc dementia and Alzheimer's - good luck our thoughts are with you x


Sent from my iPad using Talking Point

 

[Gil]

Gil

Hi Margaret.
You could be describing my husband. He was diagnosed a year ago with FTD, the language variant, the diagnosis came through within 2 days of a CT scan which indicates I think that it was quite advanced, the family and I had been noticing subtle ( and not so subtle) changes in his behaviour. I struggled on looking after him for a year and after one particularly stressful night I managed to find him a place in a care home. After he had been there a week they decided he needed specialist care, something which I had been trying to get for him for some time, but it needed a crisis, certainly in our case, to achieve. He was sectioned under the mental health act under section 2. He had to be in a psychiatric unit for up to 28 days which finishes today but yesterday he was placed under section 3 so he may be detained for a further 6 months.
Your husband definitely needs an MRI.
I was beginning to feel alone and isolated like you and felt that certain people were avoiding me/us but I then started sending group emails to all friends and family keeping them posted on how things were proceeding. I found this very helpful as now I hear from everyone on a regular basis, I find it beneficial to be open. Of course though, there is no doubt that the burden of emotional stress is mostly on you. In my case the nearest family member is 120 miles away, but they do what they can.
As people keep saying to me, and in my darkest moments I remember it...chin up.

 

[Alicenutter]

My story mirrors Gil's. I'm English, but we are in the USA, so the system is somewhat different. My husband's diagnosis of FTD was based on MRI, SPECT scan and neuropsych testing, and all prescribed by a neurologist who was also a good diagnostician. He is currently on his third stay in what they call here. A geriatric psychiatric unit, and when he moves out it will be to a skilled nursing home. Two specialised Memory Care assisted living facilities were unable to deal with his symptoms- aggression and agitation mainly. Nor was I; he was initially hospitalized after assaulting me in a public place and the police were called by a concerned member of the public. He was only diagnosed 14 months ago. My main concern now is that he be safe. Thoughts and prayers are with you.


Sent from my iPhone using Talking Point