Hi! A intro

Mameeskye

Registered User
Aug 9, 2007
1,669
0
60
NZ
Thank you for your kind words. I think having the boys at this time has been a godsend to me as I see the future so clearly and have had to prioritise things for them. My Health Visitor made me see that very clearly just after the boys were born when Mum regularly had me in tears.

It has taken time to come to a balance point but once I found that it made life so much easier.

And Dick, as I tell my sons..you never know how many numbers you have...you may have many more than you think..here's wishing you health to enjoy them all!

"Gypsy Rose Lee" I know that there are good days ahead. Watching my Dad go from cancer about a decade ago I thought I would never recover but I did and I realise that I can enjoy life and not to be down. I regularly watch the "Circle of Life" at the start of Lion King with my sons and it is so so true!

You'll have noticed by now that I tend to blether.

Wishing all of you well on your journeys through this dratted illness.

Mameeskye
 

Cymbaline

Registered User
Aug 23, 2007
36
0
Hi

Thought I'd better introduce myself to all you wonderful people. My connection to this dreadful disease is through my mother who's in her early 60s. She's had it for maybe 11 or 12 years now - it's hard to pinpoint an actual date but that's neither here nor there. The sad truth is that she's now a shell of the wonderful vibrant person she once was and is like a baby trapped in a grown woman's body :(

My father, who's also in his early 60s, is my mother's full-time carer. He has coped brilliantly and has given up a lot to be there for her. I work away from home but travel home most weekends to help out.

I've found that only people who've had personal experience of Alzheimer's really understand what it's like. It not only consumes the sufferer but it also consumes the people around the sufferer.
 

steviel

Registered User
Sep 17, 2007
22
0
Hi All
I am a new user to this sight but feel as though I would like to share my story.
My father landed on me and my sisters doorstep from America 4 yrs ago after his marriage broke up. He clearly had memory problems but we put it down to depression and so did the doctor, after a year we felt things were not right and 18 months ago got a diagnosis of early alzheimers. We were not shocked and luckily he was put on medication which has stabalized him, in other words not made him any worse and slightly better in some cases! He comes to me everyday so that I can give him his tablet, lest he forget! We generally have the same kind of conversations on a daily basis which by Friday/Saturday is really beginning to irritate me, I know this sounds horrible, I feel inpatient by the end of the week, especially when I have a young family to look after. I also feel as though it has all been dumped on me as I do not work, home with a small child, whilst my sister has a job working long hours and helps very occasionally.
He is only 67 and a fit man, it is very sad to see and it is also a big strain on my family yet I feel so guilty. I think the rest of my family just look the other way or ignore it whilst I deal with all his bills, tablets, etc. He still lives on his own but I know this probably will not be forever.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi Steviel and welcome to Talking Point

The issues you raise (particularly the fact that one member of the family i.e. you ends up taking on the bulk of the responsibilty) are fairly common. There is also no denying that the constant repetition can be, to say the least, wearing. It's all well and good knowing that it's the disease not the person, but that doesn't make the whole thing any easier to bear.

Feel free to post anywhere on the boards that you think appropriate. You might want to start your own thread in the main support forum (which is this one) http://www.alzheimers.org.uk/TalkingPoint/Discuss/forumdisplay.php?f=2 if you have any specific questions: sometimes they get lost in the shuffle on this thread.

Best wishes
 

sue38

Registered User
Mar 6, 2007
10,849
0
55
Wigan, Lancs
Hi Steviel and welcome to TP.

I know we shouldn't but we all get irritated at times, and then feel guilty afterwards. And as for repeated conversations? I take my Dad to the rugby every 2 weeks or so and we have the exact same conversation as we drive past certain places EVERY TIME. At least that's only once a fortnight, not every day.

I'm afraid that as long as you are willing to take on all the tasks, other members of the family will let you. They may not be aware of all you do or how hard it can be. If you need help, you may have to shout for it.
 

steviel

Registered User
Sep 17, 2007
22
0
Hi Jennifer and Sue38
Thanks for your kind words of encouragement and well, just knowing that someone is going through the same things as you and know just what you are talking about!! After all it is monday and I am not too irritated by him yet!!
I will keep in touch and maybe I will shout at my family a bit more to help,
thanks
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
Hi Steviel

It's very frustrating isn't it? We have thr same problem with mum but because she can't speak much anymore we just get one word over and over. Luckily I have a toddler so I'm quite used to it but sometimes I could scream with frustration!!! (I'll just feel a bit bad about that now :eek: ).

I have found a similar problem that I am doing a lot of the donkey work and dad lets me - to be fair why wouldn't he?

I've had to subtley start cutting back and allocating him tasks to do - for example I found a telephone number for someone he needed to speak to but left him to make the call (which he hasn't done by the way :confused: ).

You need to ask for help from your family or maybe try and allocate them jobs to do - maybe they just don't know what needs to be done?
 

Little Vik

Registered User
Oct 4, 2007
5
0
I think its hard for close family to admit what is happening and admit how bad things are. It took me chasing social services & doctors every day for about a month to get any help for my mum, mainly because she just wouldnt ring them, she needed the help but couldnt face being told what we feared most - which was a diagnoises. If you bury your head in the sand it makes it easier to deal with... but not for those around you
 

Morny

Registered User
Oct 11, 2007
15
0
Gloucestershire
ElaineMaul said:
Hi,
Although I joined a little while ago, haven't yet introduced myself!
My Dad is 74 and has just been diagnosed as the early stages of dementia.
Only really found out last year. Last August, while driving my mum up and down to see my nan who was ill ..... well, normally dad's around and so she wouldn't feel able to say anything ...... but this was the opportunity for her to start telling me about how dad was getting very forgetful ..... he was getting stressed about remembering exactly what shopping he might have to get if he went up the road ..... was flying off the handle at little things ... forgetting what had just been said to him ..... had even accused my mum of taking some money !!!! (My mum is a very even tempered person ...... she apparently did retort back at this one ....... she's been the the one who has always dealt with all the bills etc). I guess lots of little things ..... but I could tell it was getting my mum down.

I suggested she mention it to her doctor ...... she wasn't sure about this, but she could see the sense that it it affected HER health, the doctor would want to know. A discrete conversation with my brother, who lives with them, confirmed that he was also concerned about things. So ..... mum had the conversation with her(their) doctor. Mum was worried that dad would really get annoyed if he thought she'd gone behind her back, but the doctor was brilliant .... just asked about his memory ('A standard question I ask') when he next had a check-up. He did say he was getting forgetful. They have subsequently had visits from the mental health team from Chase Farm hospital in Enfield ...... infact, they've been almost falling over themselves to conduct tests, offer advice/help to my mum ..... amazing really!! (I say this 'cos we had a similar thing with my father-in-law ....... but getting help with him was terrible). In fact, Mum has found it a bit overwhelming 'cos she doesn't see him as a 'bad case' ..... which he isn't at the moment I guess.

He's just completed some tests, which we're waiting for the results of. The team have said that, once confirmed, they'll put him on the waiting list for (I think) the drugs that NICE have just withdrawn funding for ..... so not sure what will happen there.

Mum doesn't want Dad to know about this diagnosis ....... it's just been tests on his memory as far as he's concerned. Part of me feels uncomfortable with this ..... I'm sure when he's got irritable it's because he DOES know ...... and this makes me feel sad ...... but that's just me being wet ...... when we're together, things are only just slightly different ..... I noticed, for instance, he seemed a little 'out of sorts' at Christmas when there was lots of people at my house ..... probably the break in routine. I've been having then round to me every week now, which Dad likes and it gives Mum a break; luckily I don't live very far away.

But, Dad is still very fit .... does lots of walking ..... probably fitter than many younger than him! A nurse that Mum went to see on her own said she really aught to accompany him at all times ...... but we can't see the need to restrict him like that! He hasn't shown any problems about getting around his immediate and usual haunts ....... and he does know his phone number ...... early days I guess.

I've suggested to my Mum that she/they arrange for all their accounts to be made joint accounts; they already have wills. But ....... is now the time to think about getting Powers of Attorney? How to suggest it without upsetting Dad? A friend of mine had all sorts of problems with her mother -in-law who developed dementia without giving this authority to her son ....... and I really want to make things as smooth as possible for my Mum's sake.

Anyhow ....... having read around this site ...... it's nice to know this support forum is here ..... shame my Mum isn't on the Internet! I'll have to work on her!

Take care, Elaine
Hi Elaine I've just joined today. Bob's diagnosis was 3 years ago, but having got that a lot of past "things" made sense and I think it's more like 10 + years he's been suffering. He often used to ask what was wrong with him, so I would explain. He never seemed to relate that conversation to himself. He had a brain scan and his brain has shrunk to such a degree he has no learning ability so hence very little short term memory, and very fuzzy long term except for his brief period in the RAF. He knows something isn't right but doesn't understand much more. I also felt the immediate neighbours should be informed for the strange behavioural occurrences - like throwing rubbish over the fence. Hope this helps, it does seem a long dark road we are facing as carers. M
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Morny, welcome to TP. You'll find lots of support on this site. Several of us are caring for partners/spouses, and it doesn't get any easier.

Please post wherever you like, join in a thread or start your own. Why not start a thread to tell us about yourself? Just click the New Thread button at the top of the page, and away you go.

Love,
 

debby13

Registered User
Oct 15, 2007
41
0
Falling apart

Hi all

I am new to this posting having been searching for some outlet where I could talk get advice and probably have a emotional download...hopefully from reading this all I have found it.

My Dad is 74 and during the last 3 years has been misdiagnosed with many things, which started with depression his own GP put him on anti-depressants and really from that point on things went from bad to worse. Eventually he got so anxious, agressive and overwhelming difficult he had a spell in the priory (a complete waste of time). He then went into a hospital in Epsom West Park and basically looked about 10 years old than he was, couldnt move his mouth or lips and they thought he had had a stroke. He then had MRI scans and various other test, they then thought he had dementia but all the while he was on super strong antidepressants, plus lithium and various others all of which turned him into a zombie. I had twins and he barely noticed and then on one overwhelmingly sad day got out a book and wrote their names down in it because he couldnt remember. It makes me cry just thinking about it. He then came out of hospital and back home to normality....only it wasnt. Poor Mum has become the full time carer and literally does everything for him. She is ill herself and gets more and more exhausted. Whilst we have done lots of things last year ie they are now in much smaller place which is more manageable, Dad goes to a Day centre once a week and Mum has someone to come and sit with him once a week it never seems enough. The latest round of test with a DAT scan show he only has mild dementia and the neurologist thinks the reason he is in such poor health is because of all the drugs. So he is now being reduced on much of it and then last week went back to his anxious self, pacing the room and eventually ended up in hospital. We managed to get him respite for 3 weeks from today and I have just come off the phone with my mum who is crying at the other end saying "he didnt have a blanket and he looked so lost". I want to break down and cry myself for my Dad Ive lost but I cant because I want to be strong for her. Its all so hard.

Sorry
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Debbie

Welcome to TP. I know exactly how you and your mum are feeling. My husband John is the same age as your dad, and has recently been admitted to a NH afrer a spell in hospital. It's very upsetting, you want to be able to care for them at home, but it becomes impossible. It's awful to walk away and leave them.

It does sound as if your dad's medication needs adjusting, but if that's making him more agitated again, it may take a while to stabilise him.

Don't worry about crying, we all do it. I don't think anyone could live with this disease without crying, it has such a devastating effect on the whole family. Post whenever you want to, someone will always reply.

Why not start your own thread? You'll get more replies that way, people tend to miss this thread.

Love,
 

debby13

Registered User
Oct 15, 2007
41
0
Thanks Hazel your words are kind and I have already found using the site enormously comforting as no one really understands like people who are living with it.

Thanks again xx
 

CraigC

Registered User
Mar 21, 2003
6,633
0
London
Hi Debby,

I feel for you and you mother. My dad is also 74 and has been in care for almost two years. Mum (75) struggled to look after dad with her own health declining and now they are both in care. It has been an emotional rollercoaster for all of us and most days none of it makes sense, too much suffering all around for me to take in.

All I can say is welcome and please us talking point to talk and share you feelings. It has been a great tonic for me, just knowing that we are not alone.

I know it is hard for you both letting someone else care for you father, but it sounds like your mother needs the rest and support. Is there any way she can get daily access to the daycare centre or more support at home?

If you need any help or advice, please post.
Kind Regards
Craig
 

okmurrays

Registered User
Oct 17, 2007
118
0
62
kelowna, bc, canada
Hello from BC

Hello

I joined the forum yesterday from the Okanagan Valley in British Columbia, Canada. My family is all in England, including my dad, who has Alzheimers and my mum who cares for him and does a fantastic job. Both are in their mid 70's and neither of them in the best of health. My sister and her husband live locally and are a great support for my parents.
I have the guilt of not being there to shoulder the burden. I email my mum and my sister and send photos every day, and we speak a couple of times a week. We've got a webcam set up so my parents can see my daughter 'live'. Jenny is 12 and she emails my parents too.
It's a constant worry and concern how things will progress and how long my mum can cope.
This seems to be a wonderful site and forum and I've suggested to my mum that she looks at the factsheets in particular. She's reticent about joining local groups and for a long time wouldn't tell anyone outside the family about dad's condition. Now she has she's found that many people who dad helped in the past are rallying round with offers of support. Hopefully, she'll find this site useful too and not feel quite so alone.
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Dear okmurrays

Let us know when your mum feels like using the site, we can then be prepared to help her. We all need help, even the strongest person amongst us, we all experience situations where we don't know what to do for the best.

Telll your mum we are looking out for her.

Margaret
 

okmurrays

Registered User
Oct 17, 2007
118
0
62
kelowna, bc, canada
Thanks. Mum's only had a lap top for a couple of months, and to her credit, never having touched a keyboard in all of her 74 years, she's now sending daily emails to us. I'll try and lure her onto the site!
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Just reading through the various posts, haven't we all been on "emotional roller coasters"? If there is anyone out there who saw it all coming and prepared in advance, I'd like to hear from them as to how they did it. Mum mum went from being perfectly fine (so we thought - mistake) to being in a care home, in less that 6 weeks!

No husband to help her, though dad would have certainly done so had he still been alive (which I thought he always would be!), and the one thing that keeps me going is that I think he would be glad of her being in a care home and safe, and thankful for the action I have taken.

Everyone, keep telling yourselves that you are doing your best, you are all so loving and caring, I am proud to be associated with you all.

You won't always get it 100% right, that is human, and after all we are dealing with the unknown with this illness.

Love to you all.

Margaret
 

CHESS

Registered User
May 14, 2006
136
0
LANCS.
Dear Margaret,

My Mum was diagnosed with AD almost three years ago. I had alterations done to our house, including a downstairs toilet, early last year, in anticipation of my Mum's future needs. Given the rapid decline of your Mum, there is no way you could even have had chance to THINK about any preparation, let alone actually carry out any plans. My Mum is still very active and we go away to a cottage in Cumbria about four times a year. I really don't know how I would have coped in your situation. As they say, everyone experiences this awful disease in their own way. My heart goes out to you, your Mum and your family. Try to be strong and keep posting.

Love, Chess x