Feeling so alone

[Margaret59]

Hi this sounds familiar.
Mum is now in a care home since feb16, but was cared for at home mainly by dad whom she lived with and me. We only had carers twice a day from Dec 15 til Feb 16.due to her getting medication muddled, and dad not really that interested at that time in helping, we had her meds put in dos sets- brill, I thought. That will help.
Went round one morning to find she had carefully 'opened' all the little Windows on a weeks pack and was organising the tablets in neat little piles. Seemed to be around the size and colour.so near small pink and white together. A blue tablet weirdly in with yellow capsules etc etc. I was quite impressed as she has terrible arthritis in her hands and she must have spent at least an hour (since waking and before I got there) sorting these out to her satisfaction. She was so proud to show me what she had done I couldn't moan. Did have to carefully gather them all up and safely dispose of them the spend ages trying to get the 'lovely officious ' receptionist at the gps.to understand why I needed an urgent prescription![
Like you we have medics in the family- grand daughter Peadiatritian so has been known before mum went into ch,to get a txt asking her to 'surprise grandma with a call regarding the wonderful tablets she is on'
Whatever works is worth doing
Thinking of you
RosQUOTE=Margaret59;1399976]Hi LadyA,

Thank you for your message. My daughter had actually said I should respond as you suggested.
I think I have just been so over tired this last wee while that I wasn't thinking straight and so said the wrong thing.
I will try what you said with reference to the paperwork and see what happens.
He always dealt with all the paperwork and bills prior to his illness and I have suggested to him that perhaps I could do it all now. He gets angry about it though and says that I'm more or less saying that he can't do anything right.
I do try to assure him that is not what I'm saying. X

[/QUOTE]

Hi Rosnpton,
Sorry for the mix up, above.
I was replying to a previous message.
Thank you for your reply. It is lovely that so many people have taken the time to contact me, tell me their stories about loved ones and give me tips and advice.
I have had to hide my OH tablets as I'm concerned that he might take them without my knowledge. It's strange isn't it how that phone call from another family member does the trick! Thank goodness I say.
Take care, love and hugs. Please keep in touch, Margaret x

 

[Margaret59]

Hi everyone.

Have now had a letter from Mental Health Services who have arranged an appointment for my OH to go to the Memory Clinic at the end of this month.

Today was another day in the house. OH very sleepy again. I decided to lock the doors and curled up on the couch for an hour. Fell to sleep and woke up 2 hours later !!! Luckily no harm done, OH was still sitting in his chair, snoring away.

Hoping, once again, to try to get out for a walk tomorrow, if not perhaps some gardening, weather permitting.

Hope you all have a lovely Easter.
Love and hugs, Margaret x

 

[oilovlam]

Margaret, I hope you get the answers you need from the Mental Health team.

In my case it was all a bit underwhelming (initial diagnosis was about 7 years ago). All they did was get mum to draw a clock face, try to remember a few things....did she know name of Prime Minister...where she lived, etc. I expect things have moved on since then (well, the Prime Minister has changed)

'Draw a clock face'....No!?....it's dementia....that just leaves questions (I still have some floating about in my mind 7 years later).

In your case because of the seemingly rapid onset I would hope they do brain scans and extra tests (although I don't know what they are). Rapid onset will mean you need extra support because things can change so rapidly....hopefully drugs will stabilise things...if it is dementia.

I hope things go well.

 

[Margaret59]

Margaret, I hope you get the answers you need from the Mental Health team.

In my case it was all a bit underwhelming (initial diagnosis was about 7 years ago). All they did was get mum to draw a clock face, try to remember a few things....did she know name of Prime Minister...where she lived, etc. I expect things have moved on since then (well, the Prime Minister has changed)

'Draw a clock face'....No!?....it's dementia....that just leaves questions (I still have some floating about in my mind 7 years later).

In your case because of the seemingly rapid onset I would hope they do brain scans and extra tests (although I don't know what they are). Rapid onset will mean you need extra support because things can change so rapidly....hopefully drugs will stabilise things...if it is dementia.

I hope things go well.

Hi Oilovlam.
Thank you for your message.
I do worry about the questions my OH will be asked. In hospital he was asked his age, date of birth, what year it is etc and apparently did ok with this. Whether or not he could draw a clock face, remember 3 words or put a puzzle in order I do not know. I have read posts were so many people have said they have waited years for a diagnosis of dementia. I'm at the stage now were if I don't get an answer straight away I think I will scream.
My daughter who is a Psychiatric Nurse was explaining about how some patients with mental health issues are assessed to see how they cope in their own home but I have not heard anyone mention this would be done in the case of someone with dementia. Is it because we are here to care for our loved ones and keep them out of danger? This been the case the NHS can pass the buck onto us and not bother to do an assessment of this type.
My OH can't even remember how to turn the heating system on!! This morning I had gone for a bath only to find that there was no hot water. When I checked he had actually turned off the boiler altogether. He switches the kettle on when the plug is not in the socket and turns the microwave on before putting anything into it. I have had to tell him not to go anywhere near the gas cooker. His dirty washing normally goes in the wardrobe and during the night he seems to like to have everything stacked up at the side of the bed. He will fold the bath towel, dressing gowns, bed runner, cushions and put them into a pile. We always end up with a toilet roll in the edition and a few nights back we also had the road atlas.
When he has what I would say is a good day I worry about what would happen if he had a good day when we go to the Memory Clinic. What if they say he is fine when I know he isn't?
Another member had suggested that I write a letter to the clinic in advance of the appointment. That way they have more of an idea of what is happening and also means that I'm not having to say too much in front of him.
He blames me for the fact that he has been told not to drive. Says if I had kept my mouth shut about what he was like they wouldn't have known. I know that's not true but in his mind he thinks I am making things worse for him.
Once again for the majority of today I have been the "girl who was here last night" and repeatedly asked where everyone else is. I have had to keep reminding him it's only the two of us here.
This weekend has been very draining for me. I have been so wound up and unable to de-stress. OH has been constantly up and down, hovering over me and even though he went up to bed nearly 2 hours ago I can still hear him getting up, going in and out of the bedroom, switching lights on and off.
Maybe my patience has just worn a bit thin today. Poor soul can't help doing these things can he?
Well I am going to try and get some sleep now. Hopefully now I have been able to let off steam I will have a good sleep.
Take care, love and hugs,
Margaret

 

[MomaLoz]

Doagnosis

Hi Margaret
Sorry I haven't been on the site for a few weeks and have just been reading your thread.
I am a nurse practitioner working with Dementia patients but also my father had Dementia and my husband has Dementia.
The history you give of your husband sounds exactly the same as what has happened to my husband.
He had a stroke in April 2016 prior to that fit and healthy or was he ? Now I look back and can see things had started to change maybe 8 years earlier but I didn't recognise them at the time . Whilst in hospital the consultant told me he was Sun downing and needed to be referred to memory services I already knew that but it was good to know it wasn't just me going mad. In August he had a fall and got pneumonia all the symptoms you describe are exactly what he suffered. Has anyone mentioned Delirium to you because it sounds like that is what your husband is suffering from google it. But this medical condition can last months even years and I think we in the medical profession need to pay more attention to How it affects people with Dementia Many people are misdiagnosed and treatment is very very different if you have Delirium at least if you mention to GP they might look into it for you. Hope this helps and you have support happy to answer any queries you have

 

[Pippa J]

Pippa J

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

Hi Margaret
The symptoms you describe sound very similar to my husbands. He was diagnosed with fronto temporal lobe dementia/Alzheimer's disease 20 months ago, and is currently taking Aricept. His symptoms don't sound as severe as your OH but that maybe due to the medication. He always asks how many people are we for dinner, how many people in the house etc. If he's been asleep then he can become very confused and want to know who I am, whether I'm a teacher etc. All very scary. He also has quite severe problems with his speech.
I would definitely push your GP for urgent referral to the Memory Clinic and also ask for a urine test just in case he has an infection which could make the confusion worse.
It seems to be a postcode lottery regarding referral for diagnosis and also can depend on your GP it seems to me, so don't give up and I wish you all the best.

 

[oilovlam]

.......My daughter who is a Psychiatric Nurse was explaining about how some patients with mental health issues are assessed to see how they cope in their own home but I have not heard anyone mention this would be done in the case of someone with dementia. Is it because we are here to care for our loved ones and keep them out of danger? This been the case the NHS can pass the buck onto us and not bother to do an assessment of this type.
My OH can't even remember how to turn the heating system on!! This morning I had gone for a bath only to find that there was no hot water. When I checked he had actually turned off the boiler altogether. .....
When he has what I would say is a good day I worry about what would happen if he had a good day when we go to the Memory Clinic. What if they say he is fine when I know he isn't?

......He blames me for the fact that he has been told not to drive. Says if I had kept my mouth shut about what he was like they wouldn't have known. I know that's not true but in his mind he thinks I am making things worse for him.
......
Margaret

I think once he gets diagnosed then you can ask for help or advice preparing your house. I expect this forum would be an excellent place to ask for help. The Memory clinic should be able to give you advice on what is available...they usually have a course for carers....although a lot of what I was told was 'wishful thinking' (in my experience). Sometimes you have to almost demand help or know how to 'play the system'.

The control for the central heating & hot water can be hidden or locked away.

The gas cooker needs to be addressed IMO. Either switch off the gas to the appliance with a hidden lever (a gas certified person would have to put one in) or go electric (induction hobs are quite good & rapidly heat apparently...although you may need new saucepans....if they are magnetic - use a magnet - then they are induction ready...apparently). Perhaps the gas hob will be OK as long as the gas cuts off automatically if the flame doesn't ignite....although there is always the increased risk of burns or fire.

The Memory clinic should be able to tell if your husband has dementia even if your husband has a good day...it's their job. Although a letter before hand or on the day explaining your view on his behaviour is a good idea.

My dad kept leaving screwed up bits of toilet paper everywhere...there's nothing you can do to change what they do...just expect some 'odd' things.

Don't be afraid to ask questions...of the professionals (who are usually vague)...or on here. There will be lots of things going through your mind...especially once you have a diagnosis.

How long will they have....how bad will it get....should I put them in a care home? (probably the most difficult decision...one I have yet to make). Don't forget there are two people that need to be taken care of....your husband and yourself....both are equally important. Sometimes it can be difficult to look after yourself because you are focussed 100% on them....sometimes you have to make some tough decisions.

Best of luck.

 

[MomaLoz]

Feeling alone

Hi Margaret
How long is the waiting list for the memory clinic? As I said I am a specialist nurse practitioner working in niyrsubg and care homes for local GPs so I have both personal and professional experience. It is so hard trying to negotiate the NHS could your daughter help you ? I get so upset when I see the difficulty people are having getting the right care they should have for their loved ones this is happening daily across our hospitals and it worries me . If I can be of any help please ask

 

[dancer12]

Hi:

Push for an MRI, if he hasn't had one. My husband with FTD had all the tests and they all came back clear, but the MRI showed a different story.

 

[SoAlone]

Margaret59 - Just wanted to say I feel for you. I too am re root of all evil for my OH - but in particular, in collusion with the GP responsible for getting my OH driving licence taken away. Some days he talks of nothing else and manages to get it into almost every conversation with me or anyone else come to that. This is quite strange considering he often recalls very little of any other conversation.

We have visits from Memory Clinic staff but nothing from Social Services - must admit I haven't asked yet as I am still (just) able to work part time.

Best advice I have had on here (although I don't always follow it as I should) you need to take care of yourself too, as he needs you more than he will probably ever realise again.

Take care

 

[Margaret59]

Hi Margaret
How long is the waiting list for the memory clinic? As I said I am a specialist nurse practitioner working in niyrsubg and care homes for local GPs so I have both personal and professional experience. It is so hard trying to negotiate the NHS could your daughter help you ? I get so upset when I see the difficulty people are having getting the right care they should have for their loved ones this is happening daily across our hospitals and it worries me . If I can be of any help please ask

Hi MomaLoz,
We have the appointment for the memory clinic today, Thursday. OH keeps asking me what will happen at it. I just tell him I'm not quite sure but that they will ask him some questions. I have been keeping a diary, as I think I mentioned to you before, and have sent off quite a bit of information to the lady who we will be seeing. It will give her a good insight into what has been going on with OH.
When I read it all back to myself I felt quite shocked as if I had not put down anything other than "negatives".
Talking to a neighbour yesterday and he said that my OH seemed much better than he had been. He has actually had a couple of good days and I know myself that counts for nothing but I actually started to feel as if maybe I'm over exaggerating things. Felt guilty and have felt quite sad tonight. My daughter keeps reassuring me that the people at the memory clinic are really thorough so I'm keeping my fingers crossed that they can offer up some kind of input towards us getting a diagnosis.
Will let you know how we get on.
Love and hugs,
Margaret x

 

[Casbow]

Good luck with the memory clinic. I hope you soon get a diagnosis. Maybe when you do you can get some help. It is out there but you may have to push a bit to get it. Once again I suggest Alzheimers Society will help to point you in the right direction. Wish you well.xx

 

[Chuggalug]

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.

That was my husband almost in replicate, Margaret, and I cared for him for the first six and a half years with absolutely no support. I'd say dementia was definitely in the picture from what you've described.

If the onus is still put on the patient to get help, is it possible you could ask your husband if he'd be happy to get tested, or is that not possible? If you get his permission, you could then make an appointment for him to see his GP, and get a proper workup done.

 

[HillyBilly]

I hope all goes as well as it can for you today Margaret x

 

[Chuggalug]

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

I'm glad I stayed and read some more of what you've said, Margaret. We had the same treatment from people who belonged to the bike club my husband was a part of. Once they knew he wasn't well, none of them ever visited again. I'm afraid that's one thing probably most of us should expect. At least you then realise who really cares. In our case, there was a couple in London who visited for a couple of hours, once a year, and the other couple a few miles up the road called in when they could. Neither of them stayed long enough to be of any support, but always wished us well and said 'take care'!

Yeah. Take care. We all know what that means

Walk away? I think that's one of the worst things anyone could ever say. It's as if we're supposed to suddenly be so cold-hearted, we'd do it. We couldn't do that, could we? No matter how hard it gets.

I'm so sorry your husband is experiencing these awful symptoms. I truly hope, with all my heart that someone will have an answer for the both of you soon. At least then, you'll know a bit more about what's in front of you. I do so feel for you, Margaret.

 

[Chuggalug]

I think once he gets diagnosed then you can ask for help or advice preparing your house. I expect this forum would be an excellent place to ask for help. The Memory clinic should be able to give you advice on what is available...they usually have a course for carers....although a lot of what I was told was 'wishful thinking' (in my experience). Sometimes you have to almost demand help or know how to 'play the system'.

The control for the central heating & hot water can be hidden or locked away.

The gas cooker needs to be addressed IMO. Either switch off the gas to the appliance with a hidden lever (a gas certified person would have to put one in) or go electric (induction hobs are quite good & rapidly heat apparently...although you may need new saucepans....if they are magnetic - use a magnet - then they are induction ready...apparently). Perhaps the gas hob will be OK as long as the gas cuts off automatically if the flame doesn't ignite....although there is always the increased risk of burns or fire.

The Memory clinic should be able to tell if your husband has dementia even if your husband has a good day...it's their job. Although a letter before hand or on the day explaining your view on his behaviour is a good idea.

My dad kept leaving screwed up bits of toilet paper everywhere...there's nothing you can do to change what they do...just expect some 'odd' things.

Don't be afraid to ask questions...of the professionals (who are usually vague)...or on here. There will be lots of things going through your mind...especially once you have a diagnosis.

How long will they have....how bad will it get....should I put them in a care home? (probably the most difficult decision...one I have yet to make). Don't forget there are two people that need to be taken care of....your husband and yourself....both are equally important. Sometimes it can be difficult to look after yourself because you are focussed 100% on them....sometimes you have to make some tough decisions.

Best of luck.

Ahhh, the nightmare of the gas cooker, and the lighter - because my hubby smoked. I wasn't able to change the cooker when hubby still lived here, but quite often, I'd come into the living room, only to smell unlit gas. He started having real trouble using a lighter to light his cigarettes, but completely forgot how to use the gas hob. That was a nightmare which lasted several years. Thankfully, no harm was done, except having to get rid of the smell by opening the back door, but that's one of the most frightening things I ever experienced.

It's very likely that with all the safety measures I've seen built into new cookers, whether gas, or electric, it might be a very wise idea to change what we cook on. I'd go electric, if it was me. In fact, I eventually got the old gas cooker decoupled and taken away. Replaced it with a tabletop oven and a couple of multi-cookers, which work as either a hob, or a second small oven. With my own very bad arthritic condition, I also had to think of safety issues. My little cooker lasted a year, so I replaced that with a multi-function microwave, which is excellent, and much, much safer than the old gas cooker.

 

[Lilac Blossom]

Hi Margaret
I can only reiterate what the others have said as it seems we have so many similar experiences. The "friends disappearing" is sadly all too common. We live in a small town yet people we thought were long standing friends somehow manage not to see me in Tesco and many who said "we'll be round to see J" never do so, although J has been housebound for many years. Even our church "friends" have let us down. Thankful for TP.

I hope that the Memory Clinic was helpful. I have noticed Admiral Nurses mentioned on TP - if they are in your part of the country could you contact them?

 

[Margaret59]

Hi Margaret
I can only reiterate what the others have said as it seems we have so many similar experiences. The "friends disappearing" is sadly all too common. We live in a small town yet people we thought were long standing friends somehow manage not to see me in Tesco and many who said "we'll be round to see J" never do so, although J has been housebound for many years. Even our church "friends" have let us down. Thankful for TP.

I hope that the Memory Clinic was helpful. I have noticed Admiral Nurses mentioned on TP - if they are in your part of the country could you contact them?

Hi Lilac Blossom,
Thank you for your message.
I had never heard of Admiral Nurses until I read a post on TP. Will definitely look into it
Margaret x

 

[Margaret59]

Memory Clinic

Hi everyone,
I was at the Memory Clinic with my OH today. Hardly slept last night worrying about what he would say, what he would deny or say I had made up. The lady we saw was so nice and very understanding.
OH struggled with a lot of the test. I hadn't realised how much his capacity to complete simple mental arithmetic had deteriorated, he was always so good at it. I suppose nowadays when you are handing over a debit card or a note to pay for shopping you do get out of the swing of counting out money or working out your change but his deduction of one number from another was terrible. He couldn't copy the pattern or the square, it was like a two year old had drawn them.
However he did admit to difficulties he is having and didn't object to my input about his behaviour.
Although I understand that the lady we saw was not qualified to give us a definite diagnosis I am lead to believe that she had enough knowledge to be more or less certain of what we are dealing with. She spoke about the fact there were different types of dementia but seemed to focus on Vascular Dementia and was also very concerned about my OH been very shaky. She hit upon Parkinson's disease so this may also be a possibility. Something that I have been thinking for sometime now so that didn't come as a shock to me.
I'm hoping that we do not have to wait too long to see a consultant and if they don't give me a diagnosis then I will ask about an MRI.
CT scan done in hospital showed nothing untoward but I do know from experience that a small stroke or T.I.A does not show up on a CT scan. Having read about the possible causes of Vascular Dementia I am leaning more towards this as been an explanation or perhaps the fact that my OH has had cardiovascular problems for a number of years.
What is quite annoying is the fact that when my OH was admitted to hospital and I spoke to his doctor about the reason he was admitted and the symptoms he was having I asked if it could be Vascular Dementia and he said no.
I spoke to my OH when we got back home today and asked if he understood what had been discussed at the clinic. I really thought had he hadn't taken things in or perhaps didn't understand but he said he did. He seems so calm about it all, no emotion whatsoever.
Sorry I've gone on a bit it's just good to "talk". Strange really in one way because I don't want to phone any friends to tell them how we got on but I wanted to tell everyone here on TP. I know the reason being that you all understand.
Love and hugs to you all,
Margaret xx

 

[oilovlam]

Margaret. good to hear that you are finally being taken seriously and will get some support.

Sounds like a consultant will ask for some more tests (MRI most likely) because the lady who saw you was just gathering information & doing a benchmark test (they create a score based on how much of the test the PWD completes successfully).

Good to hear that your husband handled the day well.

All the best for the future.