Welcome to Talking Point - introduce yourself here

[karaokePete]

Hello @Maria123, you are welcome here and I hope you get support.
I don't feel you should have to wait for a crisis. May I suggest it may be a good idea to talk to the experts on the AS helpline tomorrow. The details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

I hope that others who have been in a similar situation may be along to advise in the meantime.

 

[mojo72]

Hello Maureen,

welcome to Talking Point. I don't see why you would need to tell your mum if you don't think it would help her to know. If I am faced with a decision like that I would try to weigh up the benefits against possible drawbacks of disclosing it.

It is really hard watching someone you love suffer. Is your mum on antibiotics for the pneumonia?

Hi, yes I believe so & still on a drip. I’m noticing quite a decline with her dementia since her admission. Just hoping we can get her back on her feet.

 

[Ali48]

Hi everyone I'm Alison this is my first time here,I'm here because my 81yr old mum has Alzheimer's, I'm an only child so I'm doing my best to look after her in her own home with the help of carers I have a social worker too,but recently everything has come at once, mum has had to have a pacemaker fitted , my father in law has past away and now everyone is saying she has a UTI which is making her even more confused I have a family too and a full time job, I know everyone has problems and I'm probably not the only one, feel like I'm the only one going through this...this is the reason I joined you all so I know it's not just me....thanks for listening hope to here from you all soon.

 

[Maria123]

Thank you for responding and for the suggestion too

 

[nae sporran]

Welcome to TP Alison. I'm sorry you have so much to deal with at the moment, but you will find plenty of support and advice on here. Please feel free to start your own thread in the "I care for someone with Dementia " forum when you are ready.
Did you say you think your mum has a UTI ? I know, it's the weekend and getting an out of hours doctor is hard, but I was wondering if you may want to contact 111 for advice. That way you can get your mum on antibiotics sooner rather than later.
Best wishes.

 

[Ali48]

Welcome to TP Alison. I'm sorry you have so much to deal with at the moment, but you will find plenty of support and advice on here. Please feel free to start your own thread in the "I care for someone with Dementia " forum when you are ready.
Did you say you think your mum has a UTI ? I know, it's the weekend and getting an out of hours doctor is hard, but I was wondering if you may want to contact 111 for advice. That way you can get your mum on antibiotics sooner rather than later.
Best wishes.

Hi nae sporran thanks for replying yes I have got antibiotics and I am getting a water sample to the Drs this will be the 2nd one in the last WK so I'm getting there thanks for the advice it's nice to know I'm not on my own thanks again.

 

[Toony Oony]

Hi @Momccraw
I am so sorry your Mum is poorly.
Yes, I have kept Mum's diagnosis from her for over 3 years now. Mum was very depressed and it was the opinion of her GP and myself that Mum would give up if she knew that she had Vascular Dementia.
It wasn't easy, I did not dare tell Mum's friends of the diagnosis in case someone spilled the beans and just hoped they would work it out for themselves or blame it on her having a bad day. I came in for an awful lot of criticism from some of Mum's friends who believed the things Mum said about me - all a complete fabrication.
It is difficult as you are always walking on eggshells - I found hospital and medical personnel the most difficult. I would warn in advance that Mum was unaware, but often they would forget and blurt it out. Mum's ears would prick up and then I would have the 3rd degree 'I'm not going funny am I?' I have told so many 'love lies' ...
I am indebted to one Consultant Psychiatrist who gently explained to Mum that as people get older, certain bits of them start to wear and deteriorate. Some lose mobility, others hearing or eyesight and in Mum's case it was her memory that was wearing out. No mention of dementia but a kind an easy explanation that Mum accepted and I reminded her of it on many occasions when she was stressing out.
Mum is on a dementia floor now in a lovely Care Home. She has deteriorated a lot, but realises that she is a lot worse than some, but better than others. Sometimes he tells me she has 'gone funny', but it doesn't seem to bother her as much now.
There was always an 'elephant in the room' before, but now he is a friendly elephant and Mum and I have accepted him for what he is!
Take care X

 

[mojo72]

Hi everyone I'm Alison this is my first time here,I'm here because my 81yr old mum has Alzheimer's, I'm an only child so I'm doing my best to look after her in her own home with the help of carers I have a social worker too,but recently everything has come at once, mum has had to have a pacemaker fitted , my father in law has past away and now everyone is saying she has a UTI which is making her even more confused I have a family too and a full time job, I know everyone has problems and I'm probably not the only one, feel like I'm the only one going through this...this is the reason I joined you all so I know it's not just me....thanks for listening hope to here from you all soon.

Hi Alison, sorry to hear about your Mum. Like you I’m an only child & I do feel overwhelmed by the roller coaster ride of dementia. I sometimes feel so lonely despite having a loving husband, kids & friends. You are not alone & yes some people have it worse but how you feel is completely valid & normal. I thought I could do this on my own but I realise I can’t hence why I joined this forum. Look after yourself. Maureen x

 

[mojo72]

Hi @Momccraw
I am so sorry your Mum is poorly.
Yes, I have kept Mum's diagnosis from her for over 3 years now. Mum was very depressed and it was the opinion of her GP and myself that Mum would give up if she knew that she had Vascular Dementia.
It wasn't easy, I did not dare tell Mum's friends of the diagnosis in case someone spilled the beans and just hoped they would work it out for themselves or blame it on her having a bad day. I came in for an awful lot of criticism from some of Mum's friends who believed the things Mum said about me - all a complete fabrication.
It is difficult as you are always walking on eggshells - I found hospital and medical personnel the most difficult. I would warn in advance that Mum was unaware, but often they would forget and blurt it out. Mum's ears would prick up and then I would have the 3rd degree 'I'm not going funny am I?' I have told so many 'love lies' ...
I am indebted to one Consultant Psychiatrist who gently explained to Mum that as people get older, certain bits of them start to wear and deteriorate. Some lose mobility, others hearing or eyesight and in Mum's case it was her memory that was wearing out. No mention of dementia but a kind an easy explanation that Mum accepted and I reminded her of it on many occasions when she was stressing out.
Mum is on a dementia floor now in a lovely Care Home. She has deteriorated a lot, but realises that she is a lot worse than some, but better than others. Sometimes he tells me she has 'gone funny', but it doesn't seem to bother her as much now.
There was always an 'elephant in the room' before, but now he is a friendly elephant and Mum and I have accepted him for what he is!
Take care X

Hi, thanks for replying. At times I feel so guilty for not telling her but I know it would kill her. Like you, a doctor blurted it out when we were in A & E, thankfully I managed to speak to him in private & managed to make an excuse to her. At present she’s in hospital with a broken hip & she’s had a setback as she now has pneumonia. My fear & my Mum’s fear is she won’t get home. My Mum has suffered so much in the past 3 years, I just want her suffering to end. Will keep taking a day at a time & hope she can come home with a good package of care. It’s good to know I’m not alone.

 

[Rosebush]

Hi, this is Roshbush, my husband ha recently been diagnosed with dementia, although he's had it for about 5 years at least he just refused to go to the doctors and he is still in denial. I have to keep the doors locked because he keeps going walkabout and everybody's fed up looking for him we had to call the police just before Christmas because he went off in the car they found him 4 hours later in Northampton and had to use the stinger to stop him, so now he's not allowed to drive and I have to sell the car as I don't drive which is a problem because I can't find the v5, sorry must go as he is getting aggitated

 

[Shedrech]

hello @Rosebush
and welcome to TP
what a lot you are dealing with
so I'm glad you joined TP - hopefully you have been having a mooch round and so know what a supportive and sympathetic community this is
I hope you have some support in caring for your husband - if not, do contact your Local Authority Adult Services and say you need an urgent assessment of his care needs - explain your situation and all you are dealing with (this is not a time to hold back) - it may be that time at a day care centre will provide a safe environment for your husband while you have some much needed time to yourself - ask about respite too - and for a carer's assessment for yourself, as you have a right to this
now you've started, keep posting - it does help to share

 

[sphall]

Hi,

My father was diagnosed with alzheimers last year - he seems to be going downhill fast. He lives with his wife and I visit every four weeks (I live abroad), largely to give her a break. Looling at the 7 stages he seems to be in late stage 5 with bits of early stage 6. He's in total denial ans gets very frustrated and angry, which is understandable. He and his wife had a very traditional relationship - he made the decisions and arranged things.
I could do with some advice on how to get them help - the gp doesn't seem particularly interested, my father won't visit him anyway after the gp refused to agree that he was able to drive (getting rid of the car remains a huge issue). She's filled in a form for looking at getting support (not sure which form - it took 6 months before she would do that) but hasn't had a meeting yet. Is there someone/department who can define what stage he's at and what is needed. I'm only in the UK at the weekend so I can't do anything practical about arranging help (and I don't know what I should arrange - I left 23 years ago so I'm out of the loop re how things work).
Sorry, a long introduction

 

[sphall]

hello @Rosebush
and welcome to TP
what a lot you are dealing with
so I'm glad you joined TP - hopefully you have been having a mooch round and so know what a supportive and sympathetic community this is
I hope you have some support in caring for your husband - if not, do contact your Local Authority Adult Services and say you need an urgent assessment of his care needs - explain your situation and all you are dealing with (this is not a time to hold back) - it may be that time at a day care centre will provide a safe environment for your husband while you have some much needed time to yourself - ask about respite too - and for a carer's assessment for yourself, as you have a right to this
now you've started, keep posting - it does help to share

That must habe been so terrifying for you. What is it with men and their cars. My father forgets most things but returns constantly to the theme of wanting a car and not being allowed to have one.

 

[Soobee]

Hello sphall,

Welcome to Talking Point.

I note you've said you are only in the UK at the weekend, I think it might be useful for you to give the helpline a call (they are not open today as it's a bank holiday but are usually available at the weekend). They will be able to advise you on how to get the help your parents need and I'm sure if you post a thread of your own then you will get some responses on the forum too.

National Dementia Helpline
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

 

[Shedrech]

hi @sphall
welcome to TP
a mooch around the site is a good way of getting to know ways you might support your parents
the GP may have made a referral to their Local Authority Adult Services for an assessment of your dad's care needs - you can always contact them yourself and take on the arrangements (though they may want permission from his wife and even your dad, to be able to speak with you) - your dad has a right to this assessment and his wife to a carer's assessment - if your dad isn't yet in need of home care visits to help with personal care, ask about day care to enable his wife to have some time to herself knowing he is well looked after for a few hours
there are things you can research online
if Powers of Attorney aren't yet in place, you could look into helping organise those - the forms are available online
as are those to apply for Attendance Allowance - if your dad doesn't yet meet the criteria, having a look at the forms will let you see what is considered and you can keep notes to help fill in the sections in the future - then you can contact their Council to apply for a disregard of council tax
you might also contact Admiral Nurses, who are there to support carers
and check on the main AS site to look for any useful local services - the link is the button at very top right of this page
it's a shame your dad's GP isn't proactive - however, it may be worth contacting them as some meds or a tweak of current meds may help his anger/anxiety - and it's always good to keep the GP updated so they have a record of any developments

 

[Hickory dickory dock]

Hello this is my first post. I’m 58 and my mother 86 yo has had dentin ,mild, for a few yrs and lived on her own, now much worse since Jan 2018 - coincided with new severe heart failure and new AF. So she is now living w me. I have to manage the tabs. She’s also very foggy first thing in the day . She likes to see a notice on the fridge about the day’s activities. Time, place are increasingly worsening and faces too. My 2 sisters live elsewhere in the UK. Though M is enjoying living w a daughter , long term we are looking for a nice forever residential home,EMI friendly. It will cost, no 2 ways about it. Annuity likely to fund. She is a bit of a snob, and hygiene a big deal as well as trying to be fairly independent ( she is enjoying “ sitting back!”) so the hunt is on. So many places don’t fulfill these criteria.

 

[Amethyst59]

Hello, @Hickory dickory dock ...welcome to Talking Point. I am sorry that you have had reason to join us though. It sounds as if you are getting yourself sorted well...but if you have any questions to ask, or need to let off steam, this is the place to do it. Many of our members are in just your position and will know what you are experiencing.
It is not possible (because of the forum guidelines) to recommend specific care homes, but I can tell you that what you are looking for does exist! My husband moved in February of this year. He is in a two bed apartment in a complex that caters from those needing a little extra help, right through to having a specialised dementia unit...and up to end of life care.
It reminds me of a cruise...but it doesn’t go anywhere! His apartment is cleaned daily, with a deep clean once a week, his laundry is done and there is a restaurant serving all meals. There are three activity slots each day. Some are not brilliant, but there are usually two or three concerts a week, and outings. There is no extra charge for any of this, or the bistro cafe on site. The rent also includes two hours of individual care a day, in addition to the level of care offered. (Prompts for meals or activities, medication given etc).
We are very lucky, in that we found this so close to our home (he is a 10-15 minute drive from me) but the company have homes all over the country.

 

[DeMartin]

Welcome to TP, the hunt for the forever home is daunting, but there is no substitute for personal visits, although a few can be ruled out by a computer search.
A few guidelines, never make an appointment, drop by anytime, but avoid meal times. A good smell on arrival tells a lot, but accidents can happen, but a fresh accident smell is different to neglect smell.
5* appearance is nice, but does your mum need the spa, cinema, sensory room etc.
Not every room is ensuite, that sounds like it would be important to your mum.
Activities, is there a schedule, mind you what’s on paper may not actually happen.
How do other residents look/smell. Are they tidy.
Can they cope with any of your mum’s behaviour and possible medical/nursing needs.
Most of all how does it feel, warm, homely comfortable. The best homes have waiting lists, you can be on more than one.
Best wishes on your hunt.

 

[DeMartin]

Hello this is my first post. I’m 58 and my mother 86 yo has had dentin ,mild, for a few yrs and lived on her own, now much worse since Jan 2018 - coincided with new severe heart failure and new AF. So she is now living w me. I have to manage the tabs. She’s also very foggy first thing in the day . She likes to see a notice on the fridge about the day’s activities. Time, place are increasingly worsening and faces too. My 2 sisters live elsewhere in the UK. Though M is enjoying living w a daughter , long term we are looking for a nice forever residential home,EMI friendly. It will cost, no 2 ways about it. Annuity likely to fund. She is a bit of a snob, and hygiene a big deal as well as trying to be fairly independent ( she is enjoying “ sitting back!”) so the hunt is on. So many places don’t fulfill these criteria.

Forgot to mention the legal stuff you need, POA for finance and health, attendance allowance, Council tax disregard, Will. You need to get these in place whilst mum can still understand.

 

[Rosebush]

hello @Rosebush
and welcome to TP
what a lot you are dealing with
so I'm glad you joined TP - hopefully you have been having a mooch round and so know what a supportive and sympathetic community this is
I hope you have some support in caring for your husband - if not, do contact your Local Authority Adult Services and say you need an urgent assessment of his care needs - explain your situation and all you are dealing with (this is not a time to hold back) - it may be that time at a day care centre will provide a safe environment for your husband while you have some much needed time to yourself - ask about respite too - and for a carer's assessment for yourself, as you have a right to this
now you've started, keep posting - it does help to share