Struggling to cope !

[mag123]

My husband was diagnosed Mixed Dementia and Alzheimers three years ago. He is still independent, reasonably active and drives a little, so we are lucky. People still say that they cannot tell there is anything wrong with him, he has always been quiet. He is not he man he was and I miss him.
He now cant be trusted to do much on his own and I cant cope with doing everything myself and the chaos that he causes, which is getting steadily worse. Things on the floor, nothing put away, drawers, doors, cupboards all left open - looks like burglars have ransacked the place. Permanently losing things, moving things, important info goes missing, pin numbers forgotten, crises with computer, email no longer working, dried rice in the fridge, milk in the coffee cupboard. Plants and veg pulled up and weeds encouraged. Garage and shed doors locked 3 times whilst I am working in there.Doors unlocked at night, lights left on, windows left open. Communication problems, misunderstandings and forgetfulness.
I am like the proverbial swan, paddling away beneath the serene surface, and close to total burn out already and I know there is a lot worse to come. The life is being sucked out of me and every day is like Groundhog day. Friends do not understand my situation and criticise me for 'always being busy' whilst they please themselves what they do all day.
Just wanted to offload to people who understand!

 

[nellbelles]

Hello @mag123 and welcome to DTP
I’m sure what you are saying will resonate with many here on the forum.
I wonder have you thought about Alzheimer’s side by side scheme to give you a break
https://www.alzheimers.org.uk/get-support/your-support-services/side-by-side

 

[silkiest]

Hi mag123, like you friends of my MIL do not believe how bad she is as she's still very active and sociable. I went through a very stressed time due to this. I found the local Admiral Nurse very supportive and she suggested that this is probably the most stressful period when the PWD presents reasonably well to outsiders and can be very argumentative as they do not believe they have a problem. Hopefully this service is active in your area - it is specifically for carers not the PWD. To find out call the Admiral Nurse Dementia Helpline on 0800 888 6678 from 9am to 9pm Monday to Friday, and from 9am to 5pm during the weekend. Or send an email to helpline@dementiauk.org
Good luck

 

[Prosvetik]

My husband was diagnosed Mixed Dementia and Alzheimers three years ago. He is still independent, reasonably active and drives a little, so we are lucky. People still say that they cannot tell there is anything wrong with him, he has always been quiet. He is not he man he was and I miss him.
He now cant be trusted to do much on his own and I cant cope with doing everything myself and the chaos that he causes, which is getting steadily worse. Things on the floor, nothing put away, drawers, doors, cupboards all left open - looks like burglars have ransacked the place. Permanently losing things, moving things, important info goes missing, pin numbers forgotten, crises with computer, email no longer working, dried rice in the fridge, milk in the coffee cupboard. Plants and veg pulled up and weeds encouraged. Garage and shed doors locked 3 times whilst I am working in there.Doors unlocked at night, lights left on, windows left open. Communication problems, misunderstandings and forgetfulness.
I am like the proverbial swan, paddling away beneath the serene surface, and close to total burn out already and I know there is a lot worse to come. The life is being sucked out of me and every day is like Groundhog day. Friends do not understand my situation and criticise me for 'always being busy' whilst they please themselves what they do all day.
Just wanted to offload to people who understand!

The beginning of this long way used to be quite similar to many... One have to accept the situation, realise that nothing would be the same since now and not to expect any help from the dearest PWD...
I find it the most dreadful situation that could happen to someone in life, but you will adjust and survive

 

[Lladro]

My husband was diagnosed Mixed Dementia and Alzheimers three years ago. He is still independent, reasonably active and drives a little, so we are lucky. People still say that they cannot tell there is anything wrong with him, he has always been quiet. He is not he man he was and I miss him.
He now cant be trusted to do much on his own and I cant cope with doing everything myself and the chaos that he causes, which is getting steadily worse. Things on the floor, nothing put away, drawers, doors, cupboards all left open - looks like burglars have ransacked the place. Permanently losing things, moving things, important info goes missing, pin numbers forgotten, crises with computer, email no longer working, dried rice in the fridge, milk in the coffee cupboard. Plants and veg pulled up and weeds encouraged. Garage and shed doors locked 3 times whilst I am working in there.Doors unlocked at night, lights left on, windows left open. Communication problems, misunderstandings and forgetfulness.
I am like the proverbial swan, paddling away beneath the serene surface, and close to total burn out already and I know there is a lot worse to come. The life is being sucked out of me and every day is like Groundhog day. Friends do not understand my situation and criticise me for 'always being busy' whilst they please themselves what they do all day.
Just wanted to offload to people who understand!

Hi there, pretty much everything that you mention - I have experienced and am still experiencing with my wife, who was diagnosed two and a half years ago. Gosh, do I know how you feel - It is so exhausting thinking and "doing " for two people all of the time, also it seems that I have to do somethings three times, because my wife keeps making it even more difficult! As far as most other people are concerned, "there seems to be nothing wrong with her" - They have absolutely no idea or concept of just how bloody exhausting it all is - why would they?
Recently (very recently, this week) I finally succumbed to a professional carer coming to spend just three hours with my wife, so that I could "escape". It has been terribly difficult getting to this stage, as my wife was extremely reticent about it, however, it happened and guess what? My wife thinks this new person is wonderful and can't wait for her to come again next week! This was arranged through a Care Agency and costs £16 per hour, but boy is it money well spent - for both of us! I would recommend it. Hope this helps you - Keep going and try to remember that there are other people out here who do understand. Kindest wishes

 

[rhubarbtree]

Hi Mag 123,

Totally sympathise. I could have written this six years ago but in our case it did not get worse, just different. I was also locked in and out but soon learned to take control of the keys. I never leave keys in a door and if I am gardening I make sure I have a set of keys to get back in - double indemnity. I remember in the beginning I bought a sectioned box and labelled the sections "wallet", "keys" etc. but soon learned I was the only one interested in this sensible organisation and I had just given myself one more thing to worry about. As it was OH soon lost interest in these things. Three large lavenders pulled up when he was supposed to be doing the edging. It just did not make sense.

In the beginning I was trying to cover up the illness, trying to carry on with our social life and hiding the problems and why not? We had a couple more years of being (dare I say it) normal. It is the hardest time when both of you are trying to work out what is happening.

No two PWD are the same but I hope your OH will calm down as mine did. Personally I have found day care is my saviour. Your OH does not sound as if he is at this stage yet but it is worth finding out what is available via Alxheimer's cafe or similar.

 

[Lawson58]

We are now into our sixth year since my husband's diagnosis but the worst time was the three years before when the dementia destroyed our marriage. Throw in a cardiac arrest, prostate problems, hernias, bleeds that have hospitalised him and in some ways I am relieved that he is calming down as his decline slowly progresses.

But my biggest issue is now with myself, that every day I spend caring for a person who considers me his chauffeur and his general slave is a day that I go without having my needs met in a way that I would like. I belong to a couple of environmental groups and my husband gets out on his own so that is not the problem as I am not isolated and have time to myself.

I was a globetrotter for over thirty years and lived abroad in different countries for eight years. Now I feel claustrophobic and hate that I am now running out of time to do what I want.

We all get where you are coming from. We all find ways of dealing with our situation but that only works some of the time. Bad days seem to come in clusters then there will be some quiet days when you manage to convince yourself that you will hang on in for a bit longer.

Could I suggest that you have a chat to your GP? We all need a little help to see us through but sometimes you have to go looking for that help and it sounds like you could with a bit of TLC.

 

[scullet]

my poor father was diagnosed with this awful thing in November last year. my mother is simply not adjusting and prob making my dad worse, as she has been used to dad doing everything for nearly 60 years. My 2 other sisters and I have bad arguments with her and she doesn't seem to want any medication for him either! Its so soul destroying . He still is active but forgetful, mum is so frustrated its getting us girls down! Mum said he went to hit her and dad said it was her... we are struggling so bad with this and dont know where to turn... sorry for the rant anyone else in same boat??

 

[mag123]

Thanks so much for all your kind words and suggestions. I have been following up on them all. It is good to know that there are others who understand. x

 

[White Rose]

My husband was diagnosed Mixed Dementia and Alzheimers three years ago. He is still independent, reasonably active and drives a little, so we are lucky. People still say that they cannot tell there is anything wrong with him, he has always been quiet. He is not he man he was and I miss him.
He now cant be trusted to do much on his own and I cant cope with doing everything myself and the chaos that he causes, which is getting steadily worse. Things on the floor, nothing put away, drawers, doors, cupboards all left open - looks like burglars have ransacked the place. Permanently losing things, moving things, important info goes missing, pin numbers forgotten, crises with computer, email no longer working, dried rice in the fridge, milk in the coffee cupboard. Plants and veg pulled up and weeds encouraged. Garage and shed doors locked 3 times whilst I am working in there.Doors unlocked at night, lights left on, windows left open. Communication problems, misunderstandings and forgetfulness.
I am like the proverbial swan, paddling away beneath the serene surface, and close to total burn out already and I know there is a lot worse to come. The life is being sucked out of me and every day is like Groundhog day. Friends do not understand my situation and criticise me for 'always being busy' whilst they please themselves what they do all day.
Just wanted to offload to people who understand!

Hi Mag123 - my partner was diagnosed 3 1/2 years ago, hasn't driven for a couple of years, not independent at all now - I was doing everything and close to meltdown. Then I got a cleaner once a week and a gardener to mow the lawn - if you can afford to do the same it's a huge help, well it was but then this cruel disease ratchets up a notch and the worst of it is you know it's going to keep getting worse but how bad, how will it manifest itself - we have no idea. Now he doesn't understand anything I tell him and I can't understand him when he starts going on about something or other, currently obsessing about his money, he'll constantly ask me how much money he has, difficulty getting dressed now, , forgetting to flush the toilet, bored all the time, waiting for me to organise his entertainment, getting angry, wanting to speak to his children, when he remembers he has them (they never phone or come and see him - which makes me very sad), walking round the house in and out of rooms, picking up my stuff all the time and often putting it in his office, thinking everything is his, including my car.... so it goes on. Today I went to the hairdressers, got home to find he'd left the tap running and the kitchen sink was full to overflowing. Yes I know what you mean about missing the person he was. No one who hasn't gone through this has got a clue, it's hell, we carers lose years of our lives. Sorry I'm probably making you feel even worse - but get a cleaner and a gardener if you can.

 

[marionq]

The active stage your husband is at is the most exhausting and could go on for some time. Things may get worse or just different and that too is a challenge as there is no pattern to what these changes will be. The worst stage for me was when my husband was active and wandering - a nightmare I couldn’t go through again. His physical decline though requiring a lot more hands on help from me is not stressful mentally in the way that wandering was.

I suppose what I’m trying to say is that you need to look for ways in which you can get help to see you through these stages. Day care, cleaners, befrienders, respite - whatever it takes. Try to find some way of hanging on to what you enjoy even in s small way. It is so easy for the carer to get lost in all of this.

 

[DesperateofDevon]

my poor father was diagnosed with this awful thing in November last year. my mother is simply not adjusting and prob making my dad worse, as she has been used to dad doing everything for nearly 60 years. My 2 other sisters and I have bad arguments with her and she doesn't seem to want any medication for him either! Its so soul destroying . He still is active but forgetful, mum is so frustrated its getting us girls down! Mum said he went to hit her and dad said it was her... we are struggling so bad with this and dont know where to turn... sorry for the rant anyone else in same boat??

My mum couldn’t understand why my Dad didn’t know who she was, or where he was in his own home. Neither could she accept help was required & he needed access to the memory clinic etc.
So my poor Dad spent over 2 years at home being shouted at by my mum that he was stupid & lazy. Yet her GP couldn’t see that Mum was part of the problem no matter how much we explained.
Respite care was the crucial break in all of this. My Dad was accused by my mum of being violent & abusive. So he went into respite care & never came home.
My Dad has shown no sign in the 9 months he’s been a resident of any violent or abusive behaviour. Sadly the same cannot be said of my Mum who’s still in the family home.
I really wanted to believe my Mum was speaking the truth but I always had my doubts.
I know it’s a difficult situation but with hindsight I wish my Dads GP had listened to our concerns about Dads welfare & not deferred to Mum all the time. Yes we had LPA for him but apparently as Dads wife the GPs said that they had to take her feelings into account first. I wish I hadn’t let the crisis evolve that then involved social services, but our hands were tied at the time.
Good luck
Memory clinic is a great way of progress being tracked for PWD & the OH shouldn’t be allowed to stop a PWD accessing it; but my Mum wouldn’t even let carers into the house to look after Dad. It’s a difficult one.

 

[mag123]

Thank you for sharing your stories, my heart goes out to you all. Perhaps in the future there will be more understanding and provision of support for carers, and if we had the time and energy maybe we could fight for it. I truly believe the this is the most stressful stage, what would happen if we did not get on with the role? There is so much more that could be done in early stages to keep people relatively well and slow the decline. My husband is seen by the GP once a year if I make an appointment, and then it is a simple blood pressure test and superficial memory test. (My husband scored 'normal' on this 2 years after diagnosis!) One source I gain strength from is Dr Jennifer Bute , of Glorious Opportunity, her website, Facebook page, and book, which I highly recommend.

 

[RosettaT]

The best thing I ever did was to register myself as a carer with my surgery. They are very dementia friendly. The gave my details to the practice mental health nurse. She in turn came out to access us and put me in touch with various local services. It opened a lot of doors and there was always someone to talk too.

 

[scullet]

The best thing I ever did was to register myself as a carer with my surgery. They are very dementia friendly. The gave my details to the practice mental health nurse. She in turn came out to access us and put me in touch with various local services. It opened a lot of doors and there was always someone to talk too.

My mum couldn’t understand why my Dad didn’t know who she was, or where he was in his own home. Neither could she accept help was required & he needed access to the memory clinic etc.
So my poor Dad spent over 2 years at home being shouted at by my mum that he was stupid & lazy. Yet her GP couldn’t see that Mum was part of the problem no matter how much we explained.
Respite care was the crucial break in all of this. My Dad was accused by my mum of being violent & abusive. So he went into respite care & never came home.
My Dad has shown no sign in the 9 months he’s been a resident of any violent or abusive behaviour. Sadly the same cannot be said of my Mum who’s still in the family home.
I really wanted to believe my Mum was speaking the truth but I always had my doubts.
I know it’s a difficult situation but with hindsight I wish my Dads GP had listened to our concerns about Dads welfare & not deferred to Mum all the time. Yes we had LPA for him but apparently as Dads wife the GPs said that they had to take her feelings into account first. I wish I hadn’t let the crisis evolve that then involved social services, but our hands were tied at the time.
Good luck
Memory clinic is a great way of progress being tracked for PWD & the OH shouldn’t be allowed to stop a PWD accessing it; but my Mum wouldn’t even let carers into the house to look after Dad. It’s a difficult one.

Thank you for this . Really helps xx

 

[scullet]

Thanks for this really helps xx

 

[scullet]

The active stage your husband is at is the most exhausting and could go on for some time. Things may get worse or just different and that too is a challenge as there is no pattern to what these changes will be. The worst stage for me was when my husband was active and wandering - a nightmare I couldn’t go through again. His physical decline though requiring a lot more hands on help from me is not stressful mentally in the way that wandering was.

I suppose what I’m trying to say is that you need to look for ways in which you can get help to see you through these stages. Day care, cleaners, befrienders, respite - whatever it takes. Try to find some way of hanging on to what you enjoy even in s small way. It is so easy for the carer to get lost in all of this.

Thank you xx

 

[scullet]

Thank you xx

 

[Jenni_B]

So much of what mags and others say sounds familiar. My sister is sole carer for her husband (diagnosed with early-onset AD 8 years ago but was showing symptoms 8 years before that). She gave up work in 2012 to care for him. She is now 64 (he's 71) and is close to total a mental, physical & emotional breakdown. Her life is hell. Or rather, she has no life. Her only joy is their 3 small dogs (even though they are additional work, of course, especially when the oldest needs daily insulin injections and recently bust the cruciate ligament in one leg!). Often she is "so tired my bones ache."

She's always been a very capable person, which, in a horrible way has, I think, worked against her rather than for her. She hasn't been able to admit to herself or anyone else that she wasn't coping. Last year I more or less forced her to get a cleaner for an hour a week. That's the first help she has had from anyone in all that time. Until this year she has never had respite, even from family - despite needing it desperately - because her husband "wouldn't accept help from anyone else", and she gave in to that.

Unfortunately (sounds awful, I know), although her husband has deteriorated hugely over the years and now all he can just about do without help is make a cup of tea (albeit sometimes in the kettle rather than the mug), he is - in my sister's view - still too "aware". And he can still put on a pretty good pretence at "normality" with other people. He can't maintain it, of course, and slips back into a fog as soon as he's on his own with my sister again "Who was that? Why were we there?..." Since July he's been going to a Day Centre once a week, which gives her 5 hours' respite. Big deal. He hates it and doesn't understand why he has to go "everyone else is far worse than me". He considers the activities as "silly" or "beneath" him. In truth, he probably couldn't play bingo or dominoes if he tried. And he's not at all sociable...

I'm not relating this to try and depress anyone else, but more to say how important I think it is to try and get help as early as possible even if that is, as someone else has suggested, only help around the house and garden. My sister has lost herself. I'm hoping it's not too late for her to have some kind of life again once her husband has gone into a care home - which I think is the next terribly hard decision for her. He will not go willingly.

I live in France and am going to UK soon to help her take her husband (and the 3 dogs!) for a week in a cottage in an area where they used to have holidays. There won't be much room in the car for anything after it's been packed with incontinence pants and spare trousers. He probably won't know where we are most of the time, and won't remember having been there once we get back. She's doing it because he's obsessed with going "one last time". I so admire her, but something has to give - before her body does it for her.

Sorry. Didn't mean to hijack the thread. I have a question related to this "awareness" problem, which I'll post elsewhere. Good luck, to everyone. Keep talking to people. Recognise when you need help, and don't be shy about asking for it - hard though it often is to get.

 

[White Rose]

We are now into our sixth year since my husband's diagnosis but the worst time was the three years before when the dementia destroyed our marriage. Throw in a cardiac arrest, prostate problems, hernias, bleeds that have hospitalised him and in some ways I am relieved that he is calming down as his decline slowly progresses.

But my biggest issue is now with myself, that every day I spend caring for a person who considers me his chauffeur and his general slave is a day that I go without having my needs met in a way that I would like. I belong to a couple of environmental groups and my husband gets out on his own so that is not the problem as I am not isolated and have time to myself.

I was a globetrotter for over thirty years and lived abroad in different countries for eight years. Now I feel claustrophobic and hate that I am now running out of time to do what I want.

We all get where you are coming from. We all find ways of dealing with our situation but that only works some of the time. Bad days seem to come in clusters then there will be some quiet days when you manage to convince yourself that you will hang on in for a bit longer.

Could I suggest that you have a chat to your GP? We all need a little help to see us through but sometimes you have to go looking for that help and it sounds like you could with a bit of TLC.

My goodness how I can identify with your post. My partner was diagnosed approx 3 1/2 years ago and it just gets worse and worse. I'm 20 years younger than him (I'm 56) and I just see these years of my life being lost to being a carer. Is that a horrible way to think of it, I don't know - he's not the person he was when I met him 17 years ago but I still love him. I get no help from his children, in fact only hindrance, they seem to see me as his personal unpaid carer, without a life of my own. We too used to travel, I've lived abroad in different places for many years. The only thing that keeps me going is my part time job but even that is becoming impossible - today I arrived home to a message from the cleaner to say my partner has got angry and sworn at him for one time too many and he's quitting!! I never heard my partner swear or see him get angry with anyone before the Alzheimer's. Truly the worst disease for the sufferer and the carer.