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Welcome to Talking Point - introduce yourself here

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Grannie G

Volunteer Moderator
Apr 3, 2006
71,387
Kent
I was in precisely that situation with my husband Brenda. Sadly the time came when I could be one step ahead of him and he accepted `the doctor`s` suggestion he should go into a convalescent home to build up his strength.

I hope as your mother`s condition deteriorates she will become more compliant and open to suggestion. It is more difficult for you to assess the right time but you can only do your best.
 

dexterharry

Registered User
Feb 11, 2015
2
leeds
my husband was diagnosed with dementia 3years ago when he was 64 , he was still working but had been off with depression which we now think was start of dementia. I am only 54 !! I also worked full time but I reduced my hours to 3 days a week last year as my husband was getting vey upset when I went out and his memory was getting worse.
I am feeling very very low today and upset with life(not much sleep last two nights due to husband pacing and wandering) . We have no family support network, I have a elderly mother who lives in 300 miles away .
We have no support or help from any source we only see medical staff when I take him to doctors for another urine infection
.i feel very isolated I do not want to give my job up but I am getting worried about leaving him on own for 7 hours 3 days a week. I am looking for advice on how to get support like a befriender who could maybe pop in to check on him the days I am at work.I leave flask, lunch, notes everywhere so he knows where I am , but I know this can not continue .
I would appreciate any advice on how to find someone to trust to call in , I cant find anything on my local authority website (Leeds) the only time we had carers involved when we was very ill at begining and not eating , I asked for them to come and see what help we could get but we found them very patronising and just kept saying cant you give up work and claim carers.
Sorry this is so long and moaning but any advice would be gratefully received .
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello dexterharry, just wanted to give you a warm welcome to Talking Point, so sorry you feel so low and upset and probably frustrated by the lack of help:eek: if possible have a consultation with your husbands GP and tell like it is...on a bad day! if possible write all down before seeing/phoning as we as carers go totally blank! there is medication that may help him with the pacing up and down, not a chemical cosh, but just something to calm him, social services will need to do an assessment and the doctor could do a referral which can speed things up:rolleyes:the memory clinic may have a befriender service,but down(or is it up?)here,the befriender service offered is someone coming in once a week for an hour or so just for a chat and cuppa, just that makes such a difference.
Herewith a link to Alzheimers Leeds which may be able to guide you more
http://www.alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=12840
Take care,please keep posting and sending a hug as well-chris x
 

Brightly

Registered User
Feb 19, 2015
3
Hello from a Bristol carer

I look after my 94 year old mother, who suffers with vascular dementia. She lives with me and my husband, Alan. We both work full time, but because of Al's shift pattern (four days on, two days off) and my having Wednesday mornings at home she has quite a bit of company. Most of the time we cope fairly well, but I do get very low sometimes. My father died with Pick's disease about 12 years ago, and my younger brother has also been diagnosed with both Pick's and Alzheimer's diseases - he is 58 and was diagnosed about 5 years ago.

I've joined TP because I would like to connect with other people who are carers and are likely to understand some of the challenges. Everyone I work with is much younger than me, and although they are sympathetic, I do feel pretty isolated.

Hoping to make some friends on here.

Tess
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Hello Tess, and welcome to TP. I'm sorry you've had to wait for a response.

There are people of all ages on TP. I see you have already started responding to others and I'm sure you will find the threads you're looking for.

Having close relatives with dementia is challenging for anyone, but your family have been affected more than most. I'm sure you will already be familiar with some of the issues.

TP is a great place to share information and support. You won't feel isolated for much longer.:)
 

Lindajc

Registered User
Feb 22, 2015
2
Dunfermline, Fife
Hello. My name is Linda and my Mum has just been diagnosed with mixed dementia. My father passed away two years ago and she lives alone.

In December, I went to visit and couldn't get a response, house was in darkness and, as she had been worried that strangers were coming in, had left the key in the lock on her side. Had to get police and locksmith out and found her in bed, fully clothed, no electricity and no idea what was going on. She was admitted to hospital and has just been moved to a rehab bed in a care home two days ago. The plan is, intensive rehab and assessment with a view to either going home with full package or alternative.

Looking forward to participating in the forums :)

Linda
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Welcome to TP Linda.

When this happens to you, particularly when there's a sudden decline, it can hit you for six. But it's good to know that you mum is in the right place and being properly assessed.

I'm sure that as you work towards adjusting to this dramatic change, TP will be great asset. I look forward to seeing you around the forums.
 

LucyCW

Registered User
Feb 25, 2015
9
Rainham Kent
Newbie

Hi, I'm Lucy and I care for my brother in law who has dementia caused by his abuse of alchahol from age 14, he's now 61.
We are both widowed, me 8 years and him 6. He has a twin brother with scitzophrenia, an older brother and sister but none of his family have more than annual contact (combined Christmas/Birthday greetings as his B/day is Dec).
I'm really lucky in that after an 18 month fight he has 9.5 hours of support time per week. I have my own severe disability issues so this time is vital and I never underestimate how lucky I am that he has it. We have to live apart or he will beat me up. I am on 24 hour call and spend time with him daily.
I have been caring for him for 2 years and he was diagnosed 18 months ago, he accepted the diagnosis until 2 weeks ago when he announced there was nothing wrong and I was making it up. :eek:
Over time I've developed ways of dealing with problems around his dementia and I hope these might help others. I have post it notes near my phone that say 1."Do not get on the carousel" this is for those pointless arguments when I try to get him to accept reality, face a truth or go over something time and again. You can't go out it's 4 am, Caitlyn (his wife) has died, she can't come, You saw your Dr on. Now instead of engaging in any of these I try to steer him into another direction. 2. "It's not "M" it's the illness ~ but sometimes it is "M". This reminds me when he's being nasty to check is it his frustration/fear or is it him?
Sorry this is so long :(
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Hi, I'm Lucy and I care for my brother in law who has dementia caused by his abuse of alchahol from age 14, he's now 61.
We are both widowed, me 8 years and him 6. He has a twin brother with scitzophrenia, an older brother and sister but none of his family have more than annual contact (combined Christmas/Birthday greetings as his B/day is Dec).
I'm really lucky in that after an 18 month fight he has 9.5 hours of support time per week. I have my own severe disability issues so this time is vital and I never underestimate how lucky I am that he has it. We have to live apart or he will beat me up. I am on 24 hour call and spend time with him daily.
I have been caring for him for 2 years and he was diagnosed 18 months ago, he accepted the diagnosis until 2 weeks ago when he announced there was nothing wrong and I was making it up. :eek:
Over time I've developed ways of dealing with problems around his dementia and I hope these might help others. I have post it notes near my phone that say 1."Do not get on the carousel" this is for those pointless arguments when I try to get him to accept reality, face a truth or go over something time and again. You can't go out it's 4 am, Caitlyn (his wife) has died, she can't come, You saw your Dr on. Now instead of engaging in any of these I try to steer him into another direction. 2. "It's not "M" it's the illness ~ but sometimes it is "M". This reminds me when he's being nasty to check is it his frustration/fear or is it him?
Sorry this is so long :(
Hello Lucy and welcome to TP. It's great that your first post describes things you do that others might find helpful.

TP, as you have gathered, is a place to share - a two way street. Sometimes we might start a thread because we really need support about something specific. At other times we see read about a problem which we might have come across ourselves and we feel we have tips to offer.

I look forward to reading your future posts.
 

markb60

Registered User
Feb 26, 2015
1
Lancashire
Hello Everyone

Hi My name is Mark and my mother has recently been diagnosed with Alzheimer's. The diagnosis was not totally unexpected as we knew she had some form of dementia. We started the diagnosis journey over 2 years ago.

My wife and I are the main carers with assistance from my daughter who live reasonably close to Mum

We look forward to sharing and learning with people here and are grateful for any advice and support.
 

PAULA65

Registered User
Feb 26, 2015
1
Need help & advise

Hi there I'm new to this forum and I'm hoping that I will get advise on how to get through this difficult time in our lives. My story is that my dad (79) has dimentia , he was diagnosed about 2 years ago. He is still living at home with mum. He also attends hospital 3 times a week for dialysis due to renal failure. He has been doing this now for 5 years. However as time goes on he is more confused as to why he goes to hospital. The night before these visits he has my mum up anytime from 1am questioning his visits asking why. We have taken him to the gp who has actually written down why he must do this treatment. Basically that he will die if he stops treatment. We show him this statement ever time he questions it.

I have tried to write out a timetable for him for each day of the week. He got very cross with this saying he doesn't need this , when quite clearly he does. He is in total denial of any memory loss & will take no help that has been offered by the doctor. My mother is at her whits end as am I . I feel my duty as a daughter is to keep her sane.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Hi My name is Mark and my mother has recently been diagnosed with Alzheimer's. The diagnosis was not totally unexpected as we knew she had some form of dementia. We started the diagnosis journey over 2 years ago.

My wife and I are the main carers with assistance from my daughter who live reasonably close to Mum

We look forward to sharing and learning with people here and are grateful for any advice and support.
Hi Mark and welcome to TP.

You've certainly come to a great place for advice and support. I'm sure that, 2 years in you will also have ideas of your own to share.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Hi there I'm new to this forum and I'm hoping that I will get advise on how to get through this difficult time in our lives. My story is that my dad (79) has dimentia , he was diagnosed about 2 years ago. He is still living at home with mum. He also attends hospital 3 times a week for dialysis due to renal failure. He has been doing this now for 5 years. However as time goes on he is more confused as to why he goes to hospital. The night before these visits he has my mum up anytime from 1am questioning his visits asking why. We have taken him to the gp who has actually written down why he must do this treatment. Basically that he will die if he stops treatment. We show him this statement ever time he questions it.

I have tried to write out a timetable for him for each day of the week. He got very cross with this saying he doesn't need this , when quite clearly he does. He is in total denial of any memory loss & will take no help that has been offered by the doctor. My mother is at her whits end as am I . I feel my duty as a daughter is to keep her sane.
Hi Paula, and welcome to TP. I'm so sorry about the difficult circumstances that have brought you here.

It's obviously not clear to him that he needs the timetable - as you say, he's in denial. I don't think personally that you're likely to have much success there and you will both probably become more and more frustrated if you continue.

I'm sure you are a great support to your mum and, yes, you are helping to keep her sane. Just having each other to talk to and work through your feelings is bound to help.

Are the hospital staff aware of the problem? Can they help at all? I'm at my wit's end trying to think where to go with this but if you start your own thread here, you may well get helpful suggestions from other members - there are nearly always people who have had to wrestle with similar problems.

Take care.
 

149quay

Registered User
Feb 27, 2015
1
introduction to the forum from 149quay

Not sure if this is the right page to do an intro but here goes. I am trying to assist my sister obtain "help" from Government agencies on all matters relating to her husband's Alzeimers which has been recently diagnosed.

I have been unfortunate in finding intelligence out there among them.

Would anyone know if there is a centralised agency, outfit, org. which can assist with all of the myriad of needs?
 

Cath59

Registered User
Jan 23, 2015
46
I've found great information and support on this forum already, so should probably introduce myself. My mum has a hospital diagnosis of vascular (possibly mixed) dementia, but we are still waiting for formal assessment from the memory clinic. I can't believe how fast the deterioration has been. For years she's been occasionally struggling to find the right word - normal old age stuff? At the end of November, she had a bad cold, from which she seemed to recover, though we were a bit worried about how tired she was. She then surprised us by how much she was worrying about getting Christmas presents started losing things, so we thought a doctor's appointment was a good idea. On Boxing Day my autistic brother had a stroke, and she just went downhill fast, muddling her tablets, and ending up in hospital herself as her heart condition got out of control. In hospital things got far worse (I know that isn't unusual), not knowing who anyone was, and thinking she was in all sorts of strange places - she could "see" the farm she spent most of her time on! She's now in a care home as she was afraid to be alone at home. She's much better, but her memory is so unreliable, she can't work out where family members fit in, and she is so very, very frail walking so very slowly with such small steps, hanging on to things as well as her stick. She has also found out that her television, radio, telephone etc "don't work" any more. I can't believe the transformation from someone who was pretty independent, living alone only 2-3 months ago. The main question at the moment is where she is to live. She'd like to be at home, but only if someone is there 24 hours. She doesn't like the care home - they're very kind, but while some of her complaints aren't really justified, I do have some issues myself. Do we look for another? My main issues are organisation/communication and lack of activities. There are homes around that seem to do that better, but not close enough to me for my kids to just pop in without being taken there. I have to admit that I have always been protective of her. When I was growing up I felt she had too much to worry about with my brother to take any of my problems to her. Add to that my uncle, who had vascular dementia died about 15 months ago in an accident at home, and I know my protective instincts are likely to go into overdrive! Sorry if that's a bit long for an introduction.
 

Dizzy Dee

Registered User
Feb 27, 2015
1
Hello and Help

Hi my name is Denise, I have just registered with Talking Point. I have a job interview with the Alzheimers Society and although I can find lots of information on the web, in particular the Society's website I don't think anything is more informative than real experiences. I hope I do not offend anyone by using this forum as what could be perceived as personal gain, it is not my intention, I am just really interested in this position and would like to be as prepared as I can be for the interview. Having said that if I am successful in securing the position I would then be helping others which is important to me. I also have a dear friends who's father has recently been diagnosed with dementia which is progressing quickly, so any useful information I can find out from this forum will also help my friend, her father and their family.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Not sure if this is the right page to do an intro but here goes. I am trying to assist my sister obtain "help" from Government agencies on all matters relating to her husband's Alzeimers which has been recently diagnosed.

I have been unfortunate in finding intelligence out there among them.

Would anyone know if there is a centralised agency, outfit, org. which can assist with all of the myriad of needs?
Hello 149quay and welcome to TP. There is no central agency.

Your sister should contact her Local Authority Social Services and they should carry out a carer's assessment which ought to cover all the things you have in mind. However......often SS are overwhelmed and under-funded.:(

She could benefit from talking to an Admiral Nurse.

Hope this is helpful.
 
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