Only child. Mum has been diagnosed

[jknight]

Hi All

This is my first post.

I can really empathise with previous posts - it's tough when you are the only person responsible for someone with Altzheimers.

I'm lucky in as much as I'm retired, fairly organised, & have got Social Sevices motivated so carers go in at breakfast & tea time to make sure dad showers / eats & drinks - he lives alone in sheltered housing & is 88 years old.

At the moment I'm winging it as it's all new to me. I'm intending taking him to Dementia Cafe next week so he'll maybe enjoy himself & I'll be able to pick up some tips on how to cope.

Had a few bad days - phone call 5am Sunday to say he was going to library, yesterday he thought he was in a circus tent. Have stopped new medication that MIGHT be causing the problem & started a course of antibiotics from out-of-hours doc.

Will be seeing GP tomorrow if no improvement.

I seem to spend my days waiting for bad things to happen - we've had falls, pneumonia, wandering outside in underwear, fire brigade - all in the space of 2/3 months.

Dad is / was an intelligent man so on good days he knows EXACTLY what is happening & it breaks my heart.

Before the pneumonia he just forgot words - but it's much worse now. Hopefully it will improve, but in the meantime it's tough.

Hi Ukwanderer. I can't offer any advice but I can offer sympathy and a listening ear! This community is wonderful and SO supportive. Welcome!

 

[jknight]

ukwanderer, hello, and welcome to TP. I hope you find lots of advice, support, and information here on Talking Point (I know I have). I am sorry to hear about the situation with your father and wish you all the best.

The Dementia cafe, carers cafe, carers groups, support groups, can all be great resources and a chance to meet other people who know what you are talking about. It can also be the most efficient way to find out about services in your area.

The Alzheimer's Society and Age UK have good resources and information as well. I think the info from the Alzheimer's Society is very good and when you have time, you might have a look at some of their info and factsheets. You could start here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200120

and here: https://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200343

I know what you mean about that feeling, of waiting for something bad to happen. I hope you are able to find a way to avoid the crisis. It's really difficult and there are no easy answers.

jknight, how are you doing today? Feeling a bit calmer about the appointment Friday, I hope.

I think father ted has a good point, that I failed to mention, about being an only child. I get a lot of people who say to me, oh, poor you, an only child and no brothers and sisters to help you with your mum, you must wish you had siblings now. Well, it turns out I've always been an only child so I don't know any different way to be and given a lot of the horror stories I've heard (here and in my local support groups), I'm just fine being an only child. There is nobody to debate with and nobody to argue with me (and nobody to take me to court and sue me, or call the police on me, or try to steal my mother's money). I make the decisions and that's that.

Hi Amy! I am feeling a bit better, thanks! Told Mum she had the appointment, today. Made it very laid back "it's just a follow up to the nurse that visited you and the scan you had. You know what the NHS is like. Takes ages to get a follow up". She has rung me a couple of times to ask why she is seeing a doctor, on Friday. Just repeated the" follow up" line. Not sure if it's the right way to handle it but it seemed right to me.

 

[Bigreader]

Ukwanderer, how well I remember the days of waiting for things to happen. Mum had carers four times a day and I used to watch the clock for when they'd arrive and almost hold my breath waiting for a phone call to say something had happened. I almost drove myself mad doing it! Being an only child as well I fully understand the weight of responsibility, however, I do understand the others who have to deal with unhelpful/interfering siblings.
You are all doing your best and no one can ask for more.

Bigreader

 

[Amy in the US]

Hi Amy! I am feeling a bit better, thanks! Told Mum she had the appointment, today. Made it very laid back "it's just a follow up to the nurse that visited you and the scan you had. You know what the NHS is like. Takes ages to get a follow up". She has rung me a couple of times to ask why she is seeing a doctor, on Friday. Just repeated the" follow up" line. Not sure if it's the right way to handle it but it seemed right to me.

jknight, good to hear you sounding a bit more cheerful today.

It's so difficult to know the "right" or "best" (or "least awful") way to handle things. If hearing that this is "just a follow up, you know the NHS and their appointments" is reassuring to your mum, then fine.

You reminded me of two things, when my mother was still living on her own (this was pre-diagnosis, actually, so I had no idea what I dealing with or what I was doing) and had lots and lots and lots of doctor's appointments (they had no idea, either!) and she would get upset/agitated/anxious.

Number one: I would have an explanation ready, and repeat it, word for word, in as calm and pleasant a tone of voice as possible (this is over the phone, as she lived 100 miles from me). The usual pattern was she would ring me, to ask if she had an appointment, or when was her appointment, and then once we'd gone over the day and time and what time I would pick her up, usually about ten times, she would start asking which doctor and why was she going? My standard answer was, "it's just a check-up with Dr. Smith, your GP, Mum. You know how it is with the rules these days. He has to see you every so often to give you your prescriptions." This was because it was the answer she would accept. Never mind if it was for a new problem or we'd just been there last week! She would be reassured by "just a check up," and then would say, "oh, that's right. He has to see me to give me my prescriptions. I need my medicine so I had better go," and she would agree. There was something about framing it that way, that made it acceptable to her. Any other approach was met with resistance and distress.

So if your mother is calmed or reassured by the phrase "just a follow-up," then use that, and keep repeating it, word for word.

And two: well, now I can't remember the other thing I wanted to tell you. Sigh. I will come back, when I remember.

 

[AngED4]

Been told not to drive

I also am an only child and my dad has dementia. I live an hour away from my mum and dad and know I don't visit as often as i should. My mum struggles to deal with my dad and unfortunately still tries to correct him. He doesn't accept that he has dementia but forgets the conversation generally within an hour or two anyway. He has been told not to drive but won't sign a form/letter informing the DVLA. Has anybody had to deal with this issue and if so is there a way round it? Does a Power of Attorney have any sway with DVLA and insurance company?

 

[jknight]

jknight, good to hear you sounding a bit more cheerful today.

It's so difficult to know the "right" or "best" (or "least awful") way to handle things. If hearing that this is "just a follow up, you know the NHS and their appointments" is reassuring to your mum, then fine.

You reminded me of two things, when my mother was still living on her own (this was pre-diagnosis, actually, so I had no idea what I dealing with or what I was doing) and had lots and lots and lots of doctor's appointments (they had no idea, either!) and she would get upset/agitated/anxious.

Number one: I would have an explanation ready, and repeat it, word for word, in as calm and pleasant a tone of voice as possible (this is over the phone, as she lived 100 miles from me). The usual pattern was she would ring me, to ask if she had an appointment, or when was her appointment, and then once we'd gone over the day and time and what time I would pick her up, usually about ten times, she would start asking which doctor and why was she going? My standard answer was, "it's just a check-up with Dr. Smith, your GP, Mum. You know how it is with the rules these days. He has to see you every so often to give you your prescriptions." This was because it was the answer she would accept. Never mind if it was for a new problem or we'd just been there last week! She would be reassured by "just a check up," and then would say, "oh, that's right. He has to see me to give me my prescriptions. I need my medicine so I had better go," and she would agree. There was something about framing it that way, that made it acceptable to her. Any other approach was met with resistance and distress.

So if your mother is calmed or reassured by the phrase "just a follow-up," then use that, and keep repeating it, word for word.

And two: well, now I can't remember the other thing I wanted to tell you. Sigh. I will come back, when I remember.

Amy! You are fabulous!

 

[Cat27]

I also am an only child and my dad has dementia. I live an hour away from my mum and dad and know I don't visit as often as i should. My mum struggles to deal with my dad and unfortunately still tries to correct him. He doesn't accept that he has dementia but forgets the conversation generally within an hour or two anyway. He has been told not to drive but won't sign a form/letter informing the DVLA. Has anybody had to deal with this issue and if so is there a way round it? Does a Power of Attorney have any sway with DVLA and insurance company?

Welcome to TP

I would write to the dvla & tell them what's happening.

 

[Chemmy]

Welcome to TP

I would write to the dvla & tell them what's happening.

There is also an online form

https://emaildvla.direct.gov.uk/emaildvla/cegemail/dvla/en/drivers_med_03.html

and you may find this factsheet of interest

http://www.which.co.uk/elderly-care...-talking-to-your-relative-about-their-driving

Good luck.

 

[Cat27]

I didn't know about the online form. Thanks for posting that Chemmy.

 

[ukwanderer]

I am an only child - dad diagnosed last month

Thanks for the welcome from everyone. It's really appreciated.

Just trying to book doc for dad - antibiotics (3rd day) & still hallucinating ........

 

[camkam]

Welcome to the group! I'm an only child and I live 200 miles away from Mum who was diagnosed with Alzheimers in December, although she doesn't remember the diagnosis. It's very difficult at first and the compassionate communication that was mentioned earlier is really useful though it takes some time to get into the mindset because your first reaction is often frustration at having to repeat things and answer the same questions over and over again. I've had some really good support from people here and I hope you get comfort and support too. Good luck xx

 

[weesquirrel]

New and alone also

I just want to say hi.

I'm brand new to this group (recommended by my Carers Advisor) and I'm also sole carer to my Mum, who has recently been diagnosed. My two sisters are unable to help with care for differing but genuine reasons. Although my husband is fab, I still feel a bit overwhelmed by it all!

After a quick look at the discussion threads and comments on this site, I can already see I'm going to be a regular visitor - it's so good to know there are others out there in the same situation and feeling the same stuff as I do!

Anyway.....hello x

 

[Cat27]

I just want to say hi.

I'm brand new to this group (recommended by my Carers Advisor) and I'm also sole carer to my Mum, who has recently been diagnosed. My two sisters are unable to help with care for differing but genuine reasons. Although my husband is fab, I still feel a bit overwhelmed by it all!

After a quick look at the discussion threads and comments on this site, I can already see I'm going to be a regular visitor - it's so good to know there are others out there in the same situation and feeling the same stuff as I do!

Anyway.....hello x

Hello & welcome to TP

 

[candymad]

Welcome to the group! I'm an only child and I live 200 miles away from Mum who was diagnosed with Alzheimers in December, although she doesn't remember the diagnosis. It's very difficult at first and the compassionate communication that was mentioned earlier is really useful though it takes some time to get into the mindset because your first reaction is often frustration at having to repeat things and answer the same questions over and over again. I've had some really good support from people here and I hope you get comfort and support too. Good luck xx

Hi there, I wanted to ask you how you manage with you living 200 miles from your mother, my home is in another country but I've not lived or even been there for over a year now, I rent near my mum, but this caring is putting a real strain on our finances as were are renting here and can't get any help because we have our own house. I'm also having problems with my brother who is insisting that I do everything as I am the paid carer.

Yesterday everything got too much for me, my OH has taken me off the carers role and the register, it has come to the point that it's putting our marriage at risk, today I have an appointment at the doctors to discuss my mental state as I can't stop crying.

I would be very interested to know how you are getting help for you mum when you live far away.

 

[jknight]

I just want to say hi.

I'm brand new to this group (recommended by my Carers Advisor) and I'm also sole carer to my Mum, who has recently been diagnosed. My two sisters are unable to help with care for differing but genuine reasons. Although my husband is fab, I still feel a bit overwhelmed by it all!

After a quick look at the discussion threads and comments on this site, I can already see I'm going to be a regular visitor - it's so good to know there are others out there in the same situation and feeling the same stuff as I do!

Anyway.....hello x

Welcome! I am also relatively new to TP. The support is amazing!
My mum is also recently diagnosed. Perhaps we can help each other x

 

[VonVee]

I am an only child also, my mother was diagnosed last year with late moderate to early severe dementia.
I would love to tell you it gets better, but really I can't, it gets worse and it's so hard on your own, I have a husband and kids, but really is down to me, she's my mother and it all falls on my shoulders.
I feel alone and miserable most of the time, I hate my life at the moment
And no wonder you feel scared you should be, it doesn't get any better than this I tell you.
I'm living in pure hell.
I hope it gets better for you I really do,
try to find yourself some kind of support network, I haven't as I have no one around me but my man and kids and I'm struggling.

 

[Myfanwy]

So overwhelmed

I am also using a forum for the first time. I am an only child and my mum was diagnosed with dementia in June of last year. Despite having a wonderful, supportive husband and children, I have never felt so lonely, afraid and overwhelmed. I seem to spend every day feeling apprehensive- will it be a day when my mum is co-operative, happy to see me and "Mum"? Or, will I have a day of aggressive reprimands, constant negativity and horrible names?
I have done lots of research, and I know that this is so not my mum but it hurts so much. I can only cope with one day at a time but I so fear what lies ahead. I know that I will face it and I will always be there for her. It would just help to talk with someone who understands.

 

[Cat27]

I am also using a forum for the first time. I am an only child and my mum was diagnosed with dementia in June of last year. Despite having a wonderful, supportive husband and children, I have never felt so lonely, afraid and overwhelmed. I seem to spend every day feeling apprehensive- will it be a day when my mum is co-operative, happy to see me and "Mum"? Or, will I have a day of aggressive reprimands, constant negativity and horrible names?
I have done lots of research, and I know that this is so not my mum but it hurts so much. I can only cope with one day at a time but I so fear what lies ahead. I know that I will face it and I will always be there for her. It would just help to talk with someone who understands.

Welcome to TP

Talk away because we all understand.

 

[jknight]

I am also using a forum for the first time. I am an only child and my mum was diagnosed with dementia in June of last year. Despite having a wonderful, supportive husband and children, I have never felt so lonely, afraid and overwhelmed. I seem to spend every day feeling apprehensive- will it be a day when my mum is co-operative, happy to see me and "Mum"? Or, will I have a day of aggressive reprimands, constant negativity and horrible names?
I have done lots of research, and I know that this is so not my mum but it hurts so much. I can only cope with one day at a time but I so fear what lies ahead. I know that I will face it and I will always be there for her. It would just help to talk with someone who understands.

Welcome, Myfanwy! TP is wonderful! You can ask for help\advice or just offload! There is always someone who can offer support! I too, dread the future

 

[Otiruz]

Welcome, Myfanwy! TP is wonderful! You can ask for help\advice or just offload! There is always someone who can offer support! I too, dread the future

Me too, same situation and it's a very scary feeling. I was always so close to my Dad as Mum suffered from meningitis when she was pregnant with me, this changed her personality so I never knew her as she truly was. Whilst she loved me she was always difficult. When Dad died my OH said I coped much better than he thought I would. A year after he died Mum was diagnosed with dementia and 18 months on is now in hospital having scans. I feel I am being slowly orphaned - does that make sense? Every decision I make (or have tried to make) to improve Mum's life is met with an illogical battle/rage/argument/cynicism/derision until I finally called a carer's support line. With no one to help bear the responsibility and share the decision making it feels like a huge weight. BUT there appear to be so many of us. I lie awake worrying or have a disturbed sleep and never feel rested. Carer's support were brilliant and were able to make me recognise that Mum had unwittingly made me feel incapable and unable to make decisions. "Cocooned in fear" - was how she put it. Hope this little insight helps others.