Welcome to Talking Point - introduce yourself here

[Loubee]

Hi all
My mum has Alzheimer's and vascular dementia, my dad's been looking after her alone at home, although only diagnosed in March the decline has been over 7 years. Mum was prescribed mirtazepine and aricept, but after a months increased decline in particular her behaviour, she's awful to my dad. She admitted to me she's not been taking the meds. I've temporarily moved back in either and I'm currently on carers leave. Seeing the decline is horrible, but the hostility to my dad is so hurtful to see. I'm feeling like a human shield just now. Care management are about to be involved and theirs a strong possibility she will be accepted for the day hospital. I'm a single only child with no children of my own. Just feeling a bit overwhelmed.

 

[Mudgee Joy]

@Theresalwaystomorrow and @Mudgee Joy
Grannie G has directed to a useful video
I'm not sure what the problem is but
I'm wondering whether after posting you then use the 'back' button of your laptop to go back to the forum - it then appears that you haven't posted - instead go to the blue 'Forums' at the top of the page, click on the arrow to get the drop down menu, and click on 'Recent Posts'
I'm assuming that when you do as Grannie G suggests all your posts are shown on your profile and none have really disappeared
I tend not to use the 'Reply to member' button as what I type in can end up within the quotation of the member's post, so it looks as though I've simply quoted with no actual reply - I go to the bottom of the thread and type in the box just above the blue 'Post Reply' button - to let the member know I'm posting to reply to them, I type @ before their username and wait until the dropdown box of username suggestions appears then choose the name I want - as I did for this response
don't know if that helps

Thanks very much
I am on my iPhone mostly as we are away from home - at a holiday house and the iPhones is handy at any time any place. But when I get home I will see how the TP site looks on the computer !!
Being on holiday has given me the extra time to look at TP so that has been a bonus. MJoy

 

[Pam3482]

Hi there. My husband has recently been diagnosed with vascular dementia although he has been showing symptoms for sometime. At the moment I am struggling to come to terms with the changes in him. We moved house three years ago to enjoy our retirement (he is 70'and I'm 67) by going out walking, visiting places etc but all that ended when two weeks after moving we were told that the brain tumour that he was diagnosed with in 2009 might be changing. Although the biopsy showed no change he had a course of radiotherapy followed by chemotherapy and has not been the same since. He had a stroke in October and the dementia diagnosis followed soon after. I find myself frequently close to tears and get very frustrated with him, then feel guilty. He does sleep a lot and I wonder if this is due to the dementia.

 

[Liverpool Lou]

My husband has just been diagnosed with early dementia. It has completely shaken me. Waiting for appointment for Memory Clinic. Any advice would be very welcome.

 

[nae sporran]

Welcome to TP @Liverpool Lou. It does come as a shock and there is so much to deal with I don't really know where to begin.
The basic steps are to come on TP for advice which you have done.
Don't wait as long as I did before getting Power of Attorney. AgeUK will help with the forms.
Read https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/. It is not so crucial in the early stages, but will help later.
Post any other queries you have as you go along, there's plenty on here with better ideas than I have.

 

[Shedrech]

hello @Pam3482
a warm welcome to TP
gosh your poor husband and you have had a lot thrown at you in the past few months
it takes time to begin to find ways to live with dementia in your lives - coming to this forum with whatever is on your mind will help a lot as members are sympathetic and supportive and generously share experiences
sleeping can well be a part of the dementia - it can take energy to keep up the effort of making sense of a confusing world - though if you are concerned do mention it to your husband's GP

 

[Pam3482]

hello @Pam3482
a warm welcome to TP
gosh your poor husband and you have had a lot thrown at you in the past few months
it takes time to begin to find ways to live with dementia in your lives - coming to this forum with whatever is on your mind will help a lot as members are sympathetic and supportive and generously share experiences
sleeping can well be a part of the dementia - it can take energy to keep up the effort of making sense of a confusing world - though if you are concerned do mention it to your husband's GP

hello @Pam3482
a warm welcome to TP
gosh your poor husband and you have had a lot thrown at you in the past few months
it takes time to begin to find ways to live with dementia in your lives - coming to this forum with whatever is on your mind will help a lot as members are sympathetic and supportive and generously share experiences
sleeping can well be a part of the dementia - it can take energy to keep up the effort of making sense of a confusing world - though if you are concerned do mention it to your husband's GP

 

[Pam3482]

Thank you for your reply. It is all a bit overwhelming at the moment. After months of thinking he will get better. We will be seeing GP soon so I will mention the tiredness. He just seems to sleep all the time. Glad I found this forum though. It's good to be able to talk to people going through the same thing.

 

[Cat27]

Hi everyone
I care for my alcoholic husband who is 70, im 57, I've yet to get him to the doctors as
A. as he keeps telling me, he went for the memory test a few yrs ago and they said he was ok.
B. he says there is nothing wrong with him.

I feel really guilty because its only in the past few weeks that I have realised that something is wrong and have been accusing him of drinking when he shouldn't be ( we have an arangement for when and how much he drinks, it's a very long story )
but he hasn't really had any cash to buy any extra drink.

Any way we have been arguing for months now about so many things like showering, clean clothes, nail cutting, eating and much more but it was the final straw when I asked him how he liked the sandwich I had bought him (the empty pkt is sitting on the worktop) he says what sandwich, um the cheese one you have eaten, I haven't had a sandwich you must of eaten it, I didn't eat it I ate my own, well I didn't eat it so you must have, by this time i was really angry and had had enough of everything and he was really irate as he has been a few times over the past months and you can see it in his face and hear it in his voice that he thinks I'm lying and just making it up but the realisation hit me very hard a few days later when I had asked him to tidy up the rubbish he had left on the kitchen worktop and all the crumbs on the floor, he cleaned the rubbish up but said he hadn't got any crumbs on the floor so I said oh well it must of been me then and went to walk off and he said it was you and your sister when you did the party food, the problem with that was we did the party food over 2 weeks before and my sister brushed the kitchen floor.
Sorry for the rant

Welcome to TP @Susan57

Could you contact your husband’s GP to discuss your concerns. He won’t be able to say anything to you but it makes him aware & he can get your husband in to see him.

 

[Liverpool Lou]

My husband has just been diagnosed with early dementia. It has completely shaken me. Waiting for appointment for Memory Clinic. Any advice would be very welcome.

Thank you for your advice. I am certainly going to get LP A done. Have support from friends. It’s all such a big learning curve.

 

[Liverpool Lou]

Thank you for your advice. I am certainly going to get LP A done. Have support from friends. It’s all such a big learning curve.

Thank you.

 

[Cbarker]

Hi. I’ve joined the forum because I am trying to help my uncle. He is a bachelor and has no children. He lives in Lancashire.

He was admitted to hospital 3 weeks ago with a urinary tract infection. The Hospital now wish to discharge him but it is clear that he cannot cope at home. As it stands, my uncle, the social worker and the family are all agreed that he should go into a Care home.

This is because he has very little short term memory and is confused. Before he went into Hospital, my uncle had been assessed by a memory clinic but results had not been delivered. We have been told that this process can only be completed once he is out of hospital. This seems rather strange to me. Some care homes I have spoken to have said they need the diagnosis to be able to say whether they can Home him or not.

I am attending a Best Interests meeting on 3rd January at the Hospital and would appreciate information about the format and goals of this meeting so I can make the most of the opportunity for my uncle.

The purpose of the meeting is to determine where he should be discharged to. I would like to know his and our rights. I think an inter country transfer from Lancashire to Surrey would be advisable so i can visit him weekly and be his advocate. I am worried that this will be difficult to achieve because this is more complicated and more expensive for Lancashire County Council. However does my uncle not have the right to be placed close to Family?

The other issue is that my uncle may say he wants to stay in Lancashire and because there is no formal dementia diagnosis the social worker may say we should follow his wishes. But I don’t think my uncle has the capacity to understand that no visits from Family would not be good for him. (I think this is well researched but can’t find evidence online).

My uncle is 75 and has about £40k we think. I do not have power of attorney but am executor of his will. We have visited his rented flat and are sorting through paperwork to try and work out his assets. As I understand it, £40k is not a lot because he is only 75 and relatively fit and £40k would cover 40-80 weeks in a Care Home at best.

Any advice much appreciated.
Catherine B

 

[Grannie G]

Hello @Cbarker /Catherine. Welcome to Talking Point.

It`s impossible to give you much advice because much depends on individual local authorities and whether or not your uncle is seen to have capacity. It also depends on whether or not your uncle is seen as a vulnerable adult who is at risk without supervision.

This is made difficult if there is no formal diagnosis.

I do think it would be in your uncle's best interests to have him living locally to you and hope you will have the chance for a candid discussion with the team conducting the best interests meeting.

 

[Baker17]

Hi. I’ve joined the forum because I am trying to help my uncle. He is a bachelor and has no children. He lives in Lancashire.

He was admitted to hospital 3 weeks ago with a urinary tract infection. The Hospital now wish to discharge him but it is clear that he cannot cope at home. As it stands, my uncle, the social worker and the family are all agreed that he should go into a Care home.

This is because he has very little short term memory and is confused. Before he went into Hospital, my uncle had been assessed by a memory clinic but results had not been delivered. We have been told that this process can only be completed once he is out of hospital. This seems rather strange to me. Some care homes I have spoken to have said they need the diagnosis to be able to say whether they can Home him or not.

I am attending a Best Interests meeting on 3rd January at the Hospital and would appreciate information about the format and goals of this meeting so I can make the most of the opportunity for my uncle.

The purpose of the meeting is to determine where he should be discharged to. I would like to know his and our rights. I think an inter country transfer from Lancashire to Surrey would be advisable so i can visit him weekly and be his advocate. I am worried that this will be difficult to achieve because this is more complicated and more expensive for Lancashire County Council. However does my uncle not have the right to be placed close to Family?

The other issue is that my uncle may say he wants to stay in Lancashire and because there is no formal dementia diagnosis the social worker may say we should follow his wishes. But I don’t think my uncle has the capacity to understand that no visits from Family would not be good for him. (I think this is well researched but can’t find evidence online).

My uncle is 75 and has about £40k we think. I do not have power of attorney but am executor of his will. We have visited his rented flat and are sorting through paperwork to try and work out his assets. As I understand it, £40k is not a lot because he is only 75 and relatively fit and £40k would cover 40-80 weeks in a Care Home at best.

Any advice much appreciated.
Catherine B

Hi, in my experience if the person says they want to live in a certain area it is there human right to do so whether or not they have capacity or it’s not what you think is best for him, this came about at a best interests meeting for my husband. This has caused me great upset because the social agrees with me that the care home he is currently in offers second to none facilities and there is not as good a one with the facilities they provide in the area where he says he wants to live but they have to uphold his human rights. Due to this an advocate has been appointed for my husband and she is taking it to the court of protection on his behalf, he is deemed not to have capacity by the way. I wish you luck at the best interests meeting and hope you get the best outcome for both of you, I hope you don’t think I’m being negative but it’s my personal experience

 

[Jojoginge]

Hello This is the first time I've joined a forum and hopefully it will help me while I support my 79 yr old mum who has dementia, lives independently (for now) and I feel a little lost.

I am the main carer of mum, I have 3 older siblings but I tend to do the lions share, actually I do 80% of it. I don't see this as a chore but it's like i'm losing my mum each day that passes.

She's at the stage now where she doesn't cook or clean as she simply has no appetite. So unless I go round and pop some food on the table she will go hungry.

Just the other day I went round later one evening (my brother was supposed to go round and see to her in the day) her electric socket fuse had blown, all went the heating, TV, kettle, phone! and her toaster so she had no heat, no food, no tea and no way of calling me. I cried when I went round as she was bumbling around her bungalow, hand freezing! all lost and confused as her kettle wouldn't work and saying she was cold. It broke my heart and made me so cross with my siblings.

I manage all her finances, couldn't get power of attorney as my sister left it too late to deal with (6 months) by the time the GP wouldn't sign the letter as mum had no idea what it was about. some 6 months earlier would have been OK as mum was surprisingly understanding of this. I was so cross as it was one thing i had asked her to do

I'm exhausted mentally and physically. I work in the morning, finish at 12.30 go round to mums at 1pm to make her some dinner, make sure she has her medication, pain relief for her arthritis, feed her cat and sort out her laundry. I then dash off go to collect my son at school (on the other side of the city) go home and in the evenings and weekends I run my own business.
My brother doesn't work, is depressed, has custody of his 3 kids but does have all day to himself but he sleeps all day.
My sister has just bought a narrow boat and retired and is going off on her jollys in March.
My other sister lives in Canada.
None of them seem to understand the seriousness of her care and how much she needs looking after. My sister thinks we should get a carer in and I know she's right but I have no idea what to do about this (it's left to me to deal with)

I can't help feeling angry with the world, I used to be the most positive upbeat happy person but now I'm my worst enemy. I have alienated my friends, put on weight, mope around moaning and complaining and am generally miserable. I have the most amazing husband though, he is so very supportive and keep me sane.

Sorry, I'm just ranting and offloading.

Hi

Wow reading your post was like reading my own story to an extent. My mum was diagnosed in September last year but was a late diagoses. She lives on her own and has been coping well untill a chest infection 5 weeks ago. Since then my mum has not left the house, her confusion has doubled. Her moods change within the half hour, she dosnt eat and like your mum will only eat if food is put in front of her. She hasnt cooked for weeks. She wears the same clothes over and over. Dosnt clean anymore and just sits and watches TV all day. If we try to take her out she hates it. Worst thing is she thinks nothing is wrong. This changed when i went over at 5pm xmas eve and like yourself mum had no electric, no heating. After lots of investigations it seemed my mum had left a tap on in bathroom, flooded it and it flooded kitchen. I have no idea what time it happened as she couldnt tell us. It was a wake up call to us that she is now unsafe to be left all day on her own. I do have 3 sibblings and we are all trying to work together but its hard with family commitents.
As for social services has your mum got a formal diagnoses? If not then you will need that to get any form of help. (I may be wrong but doors were only opened for us when my mum was diagnosed). We went to gp who refered us to memory clinic who then refered us to consultant ect. Thats when adult social services get invoved. We had a meeting at mums home. Plus you get lots of other advice and hekp put your way. Its tough and hard and i feel your upset. Each day there is a new challenge to face. My mum used to go into tow.3 times a week. Not aymore always an excuse.
Good luck x

 

[The searcher]

I'm new here, I care for my 67 year old wife who was diagnosed a year ago, she hides stuff, mostly money and denies she has Alzheimer's, sigh

 

[Amethyst59]

I'm new here, I care for my 67 year old wife who was diagnosed a year ago, she hides stuff, mostly money and denies she has Alzheimer's, sigh

Sadly, both of these things are very common. Welcome to Talking Point. You have certainly come to the right place to find people who are going brought similar things, as you will see as you read through posts. This is a wonderful source of information and support, and you will usually find that someone is around to ‘chat’ to. Keep reading, keep posting and asking questions, you will find like minded people and soon count yourself to be amongst friends.

 

[CeliaW]

Sorry - wrong thread!

 

[FrazzleCat]

Hi. I am the full time carer for my 90 year old mum. She has been referred to the memory clinic. The memory nurse came to the house and asked loads of questions which didn’t go down well with mum she got quite angry. Next step is brain scan also not going down well. So she hasn’t been diagnosed yet and apparently it may take up to 6 months after the scan for her to see a doctor. Mums memory isn’t great but hey she’s 90 the thing with mum is she hallucinates. It usually starts around 3 in the afternoon but recently it has got worse. She also has very restless nights which I find worse for me. Can’t remember the last time I had a decent nights sleep. I too have had meltdowns with mum and feel so guilty afterwards I know she can’t help it. I’ve read some of the threads on here and it’s me everything is the same as what’s happening to us. I was thinking of sleeping in mums room but would that be a mistake.

 

[evitakat]

Hello. My mother is 85. She has dementia and a number of other health issues. She has been inhospital for over 4 months and has deteriorated rapidy in that environment. The discharge team wants to send her to a nursing home. She has been assessed as needing continuing healthcare funding.