Feeling so alone

HillyBilly

Registered User
Dec 21, 2015
1,946
0
Ireland
Well done for having got yesterday over and done with, Margaret.

You have probably already considered it but Lewy Body Dementia (DLB) comes with symptoms similar to Parkinson's.
The Alz. Soc. has some info here
https://www.alzheimers.org.uk/info/20007/types_of_dementia/7/dementia_with_lewy_bodies

At the end of the day, a diagnosis of some sort is sort of immaterial to you - it is what it is. But at least you will be able to access the right support from SS and GP etc. Also a formal diagnosis may entitle you to financial help in the form of Attendance Allowance, council tax discount etc.

I hope you and your OH have a good day today x
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
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.

Hi Oilovlam,
Thank you so much for your kind message.
Yes it now looks as if the wheels have been set in motion and hopefully the next step will be an MRI.
Love and hugs,
Margaret x
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Well done for having got yesterday over and done with, Margaret.

You have probably already considered it but Lewy Body Dementia (DLB) comes with symptoms similar to Parkinson's.
The Alz. Soc. has some info here
https://www.alzheimers.org.uk/info/20007/types_of_dementia/7/dementia_with_lewy_bodies

At the end of the day, a diagnosis of some sort is sort of immaterial to you - it is what it is. But at least you will be able to access the right support from SS and GP etc. Also a formal diagnosis may entitle you to financial help in the form of Attendance Allowance, council tax discount etc.

I hope you and your OH have a good day today x

Hi Hilly Billy,
Lewy Body Dementia was another form of the illness that I had read about. I never knew how many different types of Dementia there actually were until I started researching into it and reading these posts.
Yes I hope a formal diagnosis will help me obtain more support.
Best wishes to you for a good weekend, let's hope the sun shines for us all it would make a nice change.
Love and hugs
Margaret x
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Hi Hilly Billy,
Lewy Body Dementia was another form of the illness that I had read about. I never knew how many different types of Dementia there actually were until I started researching into it and reading these posts.
Yes I hope a formal diagnosis will help me obtain more support.
Best wishes to you for a good weekend, let's hope the sun shines for us all it would make a nice change.
Love and hugs
Margaret x

Hi everyone,
I have had a miserable week. OH is very down about not having his driving license. He also says if he had known about the tests at the Memory clinic he would have revised!!! He is so convinced he could do it again and do better. I've explained to him that the point in testing was to see how much he could remember and how quickly he could respond in a given time in order to diagnose what is happening to his brain function. Also, be it a bit brutal I'm afraid, I told him that even if we had known all the questions in advance it would have made no difference.
He has been very quiet today. The CPN phoned this morning to ask if she could visit tomorrow and I think he is worrying about it. I've told him they are just coming for a chat to see how he is doing.
Still waiting to hear about going to see the specialist for an official diagnosis.
Margaret59 x
 

cuppatea

Registered User
Oct 28, 2016
417
0
South Wales
Oh dear Margaret sorry to hear you are having a bad time. My husband has a memory clinic appointment next week and I think it will be very similar to your experience. After reading on here about sending in a letter beforehand I have drafted one but am hesitating before sending it. Hope you have a peaceful night x

Sent from my SM-T713 using Talking Point mobile app
 

Rosnpton

Registered User
Mar 19, 2017
394
0
Northants
hi
we have mempry clinic tomorrow
i sent a letter last week outlining the changes we have noticed recently and our concerns.
mums ch have also sent a copy of their care reports where they indicate there has been a problem or a change
we did the same last year and the lady my brother and i were speaking with whilst mum was assessed said they always find informatiion sent in advance really useful as means they have an over view of the patient.
so often,once at the clinic, the pwd may behave differently to what carers have been seeing.
i know mum will see it as an outing,be dressed smartly (been refusing to wear anything other than a scruffy tracksuit recently) have hair brushed and be on best behaviour!
ros
QUOTE=cuppatea;1410485]Oh dear Margaret sorry to hear you are having a bad time. My husband has a memory clinic appointment next week and I think it will be very similar to your experience. After reading on here about sending in a letter beforehand I have drafted one but am hesitating before sending it. Hope you have a peaceful night x

Sent from my SM-T713 using Talking Point mobile app[/QUOTE]
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Thanks Ros x

Hi Cuppa tea,
I think it may well have been Ros who suggested to me also about sending a letter prior to memory clinic. I too was hesitant but it was the best thing to do as it does give the team a good insight into what's going on.
I also panicked that my OH would appear not to have any of the problems that I had highlighted to them and worried myself over it. I'm sure that everyone on here would assure you that at the Memory clinic they are very thorough and have enough experience to know that all is not as it should be. Even more so when they start to ask questions and do the tests on the person with problems. Try not to worry.
Love Margaret59 x
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Always wise to keep a log or diary of any changes or events that you notice, and let the doctors/mental health team have it before the appointment. My husband's consultant had a policy of speaking to relatives separately, as he said that way he could get the full picture.

Also, if fretting about appointments is causing upset, I wouldn't tell your husband too far in advance. The day before, maybe.
 

cuppatea

Registered User
Oct 28, 2016
417
0
South Wales
Thank you both. He doesn't remember things day to day so I usually tell him on the day unless it's an early appointment. X
 

Rosnpton

Registered User
Mar 19, 2017
394
0
Northants
Hi we had memory clinic today. As expected,mum Nicky dressed,hair brushed in top form!
Saw same lady as last year who said thanks for the letter sent in advance. She advised the colleagues speaking with mum and doing the memory assessment,were going to be asking specific Qs.to get mums views etc around the concerns we had raised without making it obvious.
She was also very open to listening to us and non judgemental when we mentioned what was worrying us.
When all together at the end,she told mum how nice she looked etc and said the 'meeting'was due to the safe guarding concern raised end of April,as they had been told about all mums falls and ambulances etc etc. -and that they were aware mum was doing some of this on purpose and had told care home and nurse at a & e would continue doing this until allowed home.Mums face was a picture!
They are changing some of her meds and will do an unscheduled visit to ch in a couple of months to see if change in meds helped.
She also told mum that if the ch can not look after her and keep her safe etc and she keeps falling that 'they' the mental health team,and social workers will be the ones that will decide which nursing home she will go to.
All in all good day, even managed not to react when she launched her yog.at me!,
Ros
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Bad day

Just had the most awful morning yesterday ( Wednesday). Got up and my OH had turned off the combi boiler again. BUT said that he didn't do it!! He was sat in a chair, very quiet, and looked so miserable. Made a cuppa, he didn't want one. Asked if he wanted to sit outside in the sunshine, he wasn't interested. Did he want breakfast --- no!!!
When he eventually made conversation he was stuttering so much he couldn't get the words out but when I asked if he felt ok or if he was worried about the CPN coming he said he was fine.
I gave him his medication and when I passed him a glass of water he was shaking so much he couldn't even get it up to his mouth to drink it.
My phone rang and it was a call from local Mental Health Team to say they would have to cancel as the CPN due to come out to see us had phoned in sick. Appointment will be re-arranged for as soon as possible. Told OH and thought perhaps he might perk up a bit as I was convinced that this was what had triggered all of this. Didn't make any difference at all really he was still very agitated.
A friend was coming to see him whilst I went for a driving lesson but I was still worried about him when I left. I had contemplated cancelling the lesson but I really need to do this for both of us. With OH now not been allowed to drive it's down to me to pass my test as quickly as I can. I think he would enjoy it if we could get out to places that we've been to in the past. That is if and when he will agree to going out.
When I got back he was as right as rain again and I suggested we had a cuppa and then went for a walk. Thankfully he agreed to this and we ended up having a lovely afternoon. Certainly made up for such a bad start to the day.
Just taking the good with the bad. Finding it difficult to deal with sometimes as in the past every day was a good day. We laughed and joked and talked about everything. Now I chatter away and sometimes I don't even think he is listening, occasionally I don't think he's even interested in what I'm saying. In fact to be honest he is now so hard to please. I do try to ignore it as I am determined not to let it get me down but as we all know it's not easy.
Love and hugs to all of you,
Margaret59 xx
 

campervan21

Registered User
May 4, 2017
173
0
Margaret 59
I really feel for you, dad was admitted to a nursing home 18 months ago he has vas dem
mum lives in their home still, she misses him dreadfully, being able to chat with him when she visits, when she does he is asleep , they have been married 62 years,
Can't be easy when appointments are cancelled , think mum is starting to get confused now as well, if she has a Drs appointment i turn up to take her, she will say oh,, I cancelled it I don't need to go, arghh yes you do mum , she forgets few minutes later really worrying now with her , she gets very agitated if any of us try to help with things, I know it must be frustrating for her, it is for all of us but......
 

Rosnpton

Registered User
Mar 19, 2017
394
0
Northants
Today I think I actually dislike my mum-I know most of it is t her fault etc but she was really horrid.
Went to ch this morning as usual- asked if I was taking her home and where was dad.
At the memory clinic,they advised that as a lot of her behaviour is down to being manipulative and previous mental problems,we are to answer a question with a very short honest reply then distract her. Don't ignore the question as this agitates her more.
So,I said no I wasn't taking her home and dad wasn't with me today.
We were on our own in the lounge.
She suddenly started to shout that it was my fault/ she hated me etc etc.
A new senior-not had any direct dealings with her before-came in and said if I was causing trouble I was to go. What had happened. I explained about being asked to go home etc and she jsut told me to ignore the question-direct opposite to mental health team last wed. A friend from residential came over and we had tea. Mum asked who was seeing her next week. I showed her in her diary falls clinic nurse on wed,and brother on sat. Bit more chat. Suddenly asked why falls nurse coming. I replied due to number of falls she had recently and using a borrowed wheelchair they were coming to see if needed a chair of her own.
She picked up her cup of tea,pored it over her head and lap and started shouting 'look what she did to me'.
Luckily her friend has full mental capacity,is in the home due to her diabetic problems ,was able to tell the carer and same snotty senior what mum had done.
Mum smirked as she went past me to be changed- as I left she said 'I am going to keep shouting when you come/ will get you in Trouble/ banned / they will send me home. I'm also going to keep falling so the ambulance gets sent for'.
This flip between moods is really getting to me.
I will try and speak to one of the other seniors on wed.when she has the falls assessment,but at the moment,they can ban me,I will jsut give up and leave her to it.
Sorry for the rant
Just feel real fed up with it today
Ros
 

campervan21

Registered User
May 4, 2017
173
0
Today I think I actually dislike my mum-I know most of it is t her fault etc but she was really horrid.
Went to ch this morning as usual- asked if I was taking her home and where was dad.
At the memory clinic,they advised that as a lot of her behaviour is down to being manipulative and previous mental problems,we are to answer a question with a very short honest reply then distract her. Don't ignore the question as this agitates her more.
So,I said no I wasn't taking her home and dad wasn't with me today.
We were on our own in the lounge.
She suddenly started to shout that it was my fault/ she hated me etc etc.
A new senior-not had any direct dealings with her before-came in and said if I was causing trouble I was to go. What had happened. I explained about being asked to go home etc and she jsut told me to ignore the question-direct opposite to mental health team last wed. A friend from residential came over and we had tea. Mum asked who was seeing her next week. I showed her in her diary falls clinic nurse on wed,and brother on sat. Bit more chat. Suddenly asked why falls nurse coming. I replied due to number of falls she had recently and using a borrowed wheelchair they were coming to see if needed a chair of her own.
She picked up her cup of tea,pored it over her head and lap and started shouting 'look what she did to me'.
Luckily her friend has full mental capacity,is in the home due to her diabetic problems ,was able to tell the carer and same snotty senior what mum had done.
Mum smirked as she went past me to be changed- as I left she said 'I am going to keep shouting when you come/ will get you in Trouble/ banned / they will send me home. I'm also going to keep falling so the ambulance gets sent for'.
This flip between moods is really getting to me.
I will try and speak to one of the other seniors on wed.when she has the falls assessment,but at the moment,they can ban me,I will jsut give up and leave her to it.
Sorry for the rant
Just feel real fed up with it today
Ros

Oh Ros
I feel for you rant away x
 

Margaret59

Registered User
Apr 4, 2017
132
0
Yorkshire
Hi everyone,
Have been having quite an exhausting, frustrating, and emotional time with OH. After CPN making appt to come and see us then cancelling on the very day they were due to come OH had a terrible day. Very upset, stuttering and not been able to find the words he wanted to say and totally down. He had worked himself up about them coming, asked constantly about what they would say to him and would they make him go into a home etc etc. Poor soul. With a promise to re- arrange the appointment I waited for a further call. A few days later I spoke to CPN who advised that a letter had now been sent out for OH to see the psychiatrist who assessed the test done at the Memory clinic on 27th April and that perhaps it might be best if they came after we had seen him. The letter has arrived and the appointment is for the 13th June.
Thank goodness as perhaps now we will get a diagnosis. I have an appointment with Citizens Advice to help me complete the forms for DLA and have also been advised to apply for Carers Allowance. GP has increased dosage of Citalopram which she prescribed for OH and he seems a bit better for it in that he is a bit less agitated. He still sits and talks to the "others in the house" and I do try to ignore it but occasionally I remind him it is only the two of us. Then we are back to him asking if I'm sure it's only him and I because there are definitely others here, he's seen and heard them. They also use the bathroom and he can't get into it and they are always moving his things!! The other night he was very restless and when I went upstairs a short while later he was curled up in the foetal position on the bedroom floor. This is something that I have noticed - the position he now sleeps in. OH always slept on his back and NEVER on his side. He has the duvet over him plus my dressing gown, his dressing gown and either a fleece jacket or a sweater that he has been wearing during the day.
More and more often now he is forgetting the names of things he wants. For instance if I ask him what he is looking for he might say - oh you know one of those things to put a tea bag in or sometimes he walks from one cupboard to another then in and out of drawers until I ask him what he is trying to find. Sometimes he can tell me and sometimes I have to eliminate one thing at a time. He regularly seems to forget who I am, he even asks if I have to report back to my bosses about how and what he has been doing.
I have the memo board on which I write the day, date and also that I am here and even though he looks at it the bit about me still doesn't always register.
Well I have had a good rant now. Feel much better for getting it off my chest. OH has finally settled, it's 10 to 2 in the morning so I am now going up to bed.
Love and hugs to all, Margaret xx
 

Casbow

Registered User
Sep 3, 2013
1,054
0
77
Colchester
Hi Margaret I am sorry that you are having such a difficult time. I hope your appointment helps you and your husband to feel that you are getting somewhere. I can say about the 'other people'. My husband has had this for about 2 years now and it can be very distressing for the PWD and also the carer who can't do anything much to stop it. I found that the best thing that worked for him was to say "David there is no one here. It is the weekend and they are not at work." Or they are out with the children. Or gone to the park. Anything that might work. When I asked my husband what the people were saying to him it was always work related. Sometimes when i said "There is no one here. Its the weekend." I could see him let out a breath and start to relax. Hope all goes ok.xxx
 

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