If you partner has dementia - how many of us want to walk away?

[maryjoan]

Indeed - nt to mention the millions we save the various Governments.

He told me to 'Go Away' yesterday and I spent a couple of hours thinking, maybe I would. Then I took him his meds and a drink, and he had forgotten all about it.

I think that the mind set we all need- but most cannot achieve - is that this person we are living with is NOT the person we loved, its an imposter, a doppleganger of some sort. We have to try and forget the person we fell in love with, because they have gone on a journey without us.

I now live with someone else, someone who needs me, But I do not need him. I can learn to love this dependent vulnerable person, just like I learnt to love the foster children I cared for. I might not like him very much - but it's not him - its this awful bloody condition - compassion was mentioned earlier - this site must be over flowing with compassion, and we should pat ourselves on the back.

We are doing a grand job, we are the salt of the earth and we should hold our heads up high and be proud of the task in hand - that of caring for someone who cannot care for themselves.

Sounds good anyway - until we hit another moment of utter despair!!



It's a warm day, he is happy to watch snooker, so I am going into the garden and enlarging the borders - thus making the lawn smaller!!!

 

[cumbria35]

Indeed - nt to mention the millions we save the various Governments.

He told me to 'Go Away' yesterday and I spent a couple of hours thinking, maybe I would. Then I took him his meds and a drink, and he had forgotten all about it.

I think that the mind set we all need- but most cannot achieve - is that this person we are living with is NOT the person we loved, its an imposter, a doppleganger of some sort. We have to try and forget the person we fell in love with, because they have gone on a journey without us.

I now live with someone else, someone who needs me, But I do not need him. I can learn to love this dependent vulnerable person, just like I learnt to love the foster children I cared for. I might not like him very much - but it's not him - its this awful bloody condition - compassion was mentioned earlier - this site must be over flowing with compassion, and we should pat ourselves on the back.

We are doing a grand job, we are the salt of the earth and we should hold our heads up high and be proud of the task in hand - that of caring for someone who cannot care for themselves.

Sounds good anyway - until we hit another moment of utter despair!!



It's a warm day, he is happy to watch snooker, so I am going into the garden and enlarging the borders - thus making the lawn smaller!!!

 

[cumbria35]

Your letter is so true, it does become all consuming, I privately rail about this despicable illness and feel so,helpless u rail I realise I am helping, I’m sure the government doesn’t realise how many elderly Carers there are. Yes we can get help but I feel. Or and. Ore isolated and there is such a long waiting list for someone to come in and give me some ‘me’ time. Family are good but live long way away and many friends are elderly too and not driving, sadly after having to leave a group I walked with for many years I feel sad that no-one calls in to see us. Just have to get on with it and be thankful that we are both here.

 

[Bunpoots]

@Bunpoots, good to see we are in the same place, it's so much easier when you find a fellow passenger on this ride!

It certainly is

 

[Grahamstown]

Yes I would like to walk away but I can’t so I vent my feelings on the forums. I can’t get used to the complete inability to talk rationally the way one would be able to if it was a physical illness. He thinks that he is being rational while saying things that show his complete lack of reason. The worst thing is that nobody else can understand unless they live with it as we all do because it is the day to day strain of dealing with all the little foibles that wear you out. Also if I am not careful I risk becoming completely obsessed by this and unable to think about anything else, which is one reason why I would rather not tell those I see all the time, because then I can’t talk about it to them.

 

[john1939]

My goodness, how much these posts resonate. Most of us love or did love the person we're caring for but hate the situation we are now in. If there is an answer it is not easy and usually expensive. Years tick by and we are getting older and missing out in what could have been happy and adventurous years of retirement. Instead - frustration, dwindling feelings, perhaps health issues for ourselves, some will have dwindling financial resources too along with worries about keeping a roof over your head.

This is a major demographic problem which can and will get worse and is not being faced up to. Scratching the surface will not solve the problem of the illness itself or the effects on the carers and families. All the TV programmes and newspaper articles in the world make not a jot of difference.

I don't see any signs of a "big discussion" to get to the roots of all of this. In the meantime PWD and their carers keep the whole sorry mess ticking over.

Hello, Yes, the Alzheimers problem comes way down near the bottom of the government's priorities. They know perfectly well the problems that the carers are having to deal with.
You can bet that if 50% of MPs were suddenly afflicted with Alzheimers then money would be thrown at the illness and a cure found.

 

[marionq]

Hello, Yes, the Alzheimers problem comes way down near the bottom of the government's priorities. They know perfectly well the problems that the carers are having to deal with.
You can bet that if 50% of MPs were suddenly afflicted with Alzheimers then money would be thrown at the illness and a cure found.

I want the discussions to be all encompassing with a cure, the right care, the needs of carers, the possibility of better endcare, the feasibility of assisted suicide, the finance involved for public and individuals. Such discussions need all those currently involved to have their say as well as public service workers and politicians and medical experts.

No one group pushing their agenda but everyone trying to get to grips with this issue.

 

[Grammy57]

I think, based on hospital visits only with my PWD, that you would have to be a robot not to want to escape Being 9 years younger than my OH I sort of prepared myself for a caring role, now its here, I am the person most at risk from the man who loved me for 42 years. Every night I pray for whatever switched in his head to switch back again but I am slowly accepting it's not going to. Returning to all of you who have the opportunity to care, I can only say I am full of admiration,after answering the same question for the 6th time in 10 minutes - I do have an inkling of what you live with 24/7.

 

[Nanna Spain]

I understand, karaokePete, and Margherita and NaeSporran, and you as well DennyD, and thank you - I am so glad I can come on here and have a moan.

I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.

Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....

I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.

On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!

All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.

Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....

My dear OH is happy with that as he hates going for respite anyway!!

Oh well, the springs bulbs are doing their best to flower, so all is not lost

 

[Agzy]

This thread is so needed as a topic to be discussed. My OH and I have been together 23 years both having been married twice before and economics said don’t marry. We had a wonderful 20 years then the AZ took hold and although now slowed by Doneprizle still progresses. By this I mean the flare ups and screaming and obsessive criticism of anything and everything. I have never been a patient person and find myself shouting back and getting angry then ashamed of myself and soooo guilty. Given we are comfortably off I have had holidays travelling solo and she has coped well, although that won’t last long. So what in particular makes me want to walk away? Well there’s a list, lack of love, conversation, boredom, stress etc. etc. So why stay? Becuse of the good years we have shared, a feeling of duty along with reluctance to get involved by her sons and basically, if not me, who?

 

[maryjoan]

This thread is so needed as a topic to be discussed. My OH and I have been together 23 years both having been married twice before and economics said don’t marry. We had a wonderful 20 years then the AZ took hold and although now slowed by Doneprizle still progresses. By this I mean the flare ups and screaming and obsessive criticism of anything and everything. I have never been a patient person and find myself shouting back and getting angry then ashamed of myself and soooo guilty. Given we are comfortably off I have had holidays travelling solo and she has coped well, although that won’t last long. So what in particular makes me want to walk away? Well there’s a list, lack of love, conversation, boredom, stress etc. etc. So why stay? Becuse of the good years we have shared, a feeling of duty along with reluctance to get involved by her sons and basically, if not me, who?

I am exactly in your place, but we have only been together seven and a half years. Your list is my list - lack of love, conversation, boredom, stress - oh, yes, I emphasise completely with you. I am able to work from home, and it does distract me a little bit, but when I am concentrating on working and he wanders in with a completely aimless (to me) meaningless question that shatters my concentration - then I could scream.

But there is no point - there is no one listening - I keep thinking I am getting my head around the situation - but it is so unnatural isn't it?? The Doppleganger Effect.

Good Luck to you...... and me..... and us all........

 

[carolynp]

Y

Yes I would like to walk away but I can’t so I vent my feelings on the forums. I can’t get used to the complete inability to talk rationally the way one would be able to if it was a physical illness. He thinks that he is being rational while saying things that show his complete lack of reason. The worst thing is that nobody else can understand unless they live with it as we all do because it is the day to day strain of dealing with all the little foibles that wear you out. Also if I am not careful I risk becoming completely obsessed by this and unable to think about anything else, which is one reason why I would rather not tell those I see all the time, because then I can’t talk about it to them.

I agree exactly with what you are saying. Last night I complained to my son and now I feel absolutely dreadful. I try to keep it for TP but sometimes the frustration bursts out. We are visiting my son and he keeps saying how wonderfully Papa is doing. It makes me feel so much worse. We are staying apart from son, so he has no idea. I feel like I am on stage with OH when we are in company but that nine tenths of my effort is taking place back stage, behind the scenes, and I am getting exhausted. Added to which OH now has constipation from the travel and his refusal to drink enough water. This has been the last straw.

 

[Grahamstown]

I feel terrible too when I tell my daughter about these daily stupid things which are so difficult to live with. He is lovely sometimes so I try to cling onto those moments and keep calm but firm when I have to protect him. The list I created is proving invaluable because I ask him to read it when things get difficult and it saves me having to repeat myself over and over again. We must keep strong and help each other because otherwise we would break and then who would look after our sufferer? I have felt unwell today after a family visit Saturday to Sunday because of the strain I think, so back to routine tomorrow.

 

[PJ]

It's tragic, that selfish streak and total lack of empathy that seems so common in PWD has once again put me in a position where I have had to assert my existence as an individual and spouse rather that just a carer last night and today. It doesn't make me want to walk away but it hurts and doesn't endear my wife to me at the moment.

Hi @karaokePete hope today’s been a much better day for you both

 

[carolynp]

I feel terrible too when I tell my daughter about these daily stupid things which are so difficult to live with. He is lovely sometimes so I try to cling onto those moments and keep calm but firm when I have to protect him. The list I created is proving invaluable because I ask him to read it when things get difficult and it saves me having to repeat myself over and over again. We must keep strong and help each other because otherwise we would break and then who would look after our sufferer? I have felt unwell today after a family visit Saturday to Sunday because of the strain I think, so back to routine tomorrow.

Thank you so much for all you say. I don’t feel quite so alone. I am comforted you too feel terrible when you complain to your daughter. Also sadly even your own unwell feeling after the weekend visit is a source of comfort to me. I may not have taken sufficient account of this added strain in my own case. Certainly I felt ghastly last night. Also OHs Sister was suddenly very ill in Melbourne and for two days not expected to live which was an appalling extra load. You have given me strength and reassurance this morning dear Sue! I am so grateful. Love C.

 

[yorkie46]

I have just picked up on this thread and it just seems to me we carers are all in the same boat. Whether caring for someone who has been diagnosed or someone who is waiting for a diagnosis, though whether it will happen or not is another question. We all from time to time reach the end of that constantly extending tether. It helps sometimes to offload to family either in person or via other means but the only people who truly understand are those who are experiencing the same day to day draining and debilitating life of a carer. Married nearly 50 years and yes I identify with the lists and the feelings of everyone who has posted here. Three times in the last six months the outbursts have been so bad I have walked out, luckily he isn't so bad that I can't leave him alone. Every time he's pleased with me to come back because he can't manage on his own. Then the blackmail if the threats to take his life if I don't come back and the sobbing down the phone! I never intend to leave on a permanent basis, I just want a little time to myself and particularly when the .... hits the fan!!
I've been thinking about how we should celebrate our golden wedding next year but equally I've been wondering if its wise to make plans!

 

[carolynp]

I have just picked up on this thread and it just seems to me we carers are all in the same boat. Whether caring for someone who has been diagnosed or someone who is waiting for a diagnosis, though whether it will happen or not is another question. We all from time to time reach the end of that constantly extending tether. It helps sometimes to offload to family either in person or via other means but the only people who truly understand are those who are experiencing the same day to day draining and debilitating life of a carer. Married nearly 50 years and yes I identify with the lists and the feelings of everyone who has posted here. Three times in the last six months the outbursts have been so bad I have walked out, luckily he isn't so bad that I can't leave him alone. Every time he's pleased with me to come back because he can't manage on his own. Then the blackmail if the threats to take his life if I don't come back and the sobbing down the phone! I never intend to leave on a permanent basis, I just want a little time to myself and particularly when the .... hits the fan!!
I've been thinking about how we should celebrate our golden wedding next year but equally I've been wondering if its wise to make plans!

“We all from time to time reach the end of that constantly extending tether.” YES. Thank you so much for putting it so very well.

 

[Lawson58]

I want the discussions to be all encompassing with a cure, the right care, the needs of carers, the possibility of better endcare, the feasibility of assisted suicide, the finance involved for public and individuals. Such discussions need all those currently involved to have their say as well as public service workers and politicians and medical experts.

No one group pushing their agenda but everyone trying to get to grips with this issue.

Wouldn't it be refreshing if there was a government (UK, Australia, anywhere) that had the guts and ethics to challenge how all this stuff currently works? Same lack of moral fibre over many years, same lack of economic commitment to address the isues, same lack of knowledge and understanding what the issues are in the first place, same old excuses for not dealing with the problems, same old heads in the sand about the increasing number of elderly who will require assistance, same old..................Same old..........

 

[karaokePete]

Hi @karaokePete hope today’s been a much better day for you both

Thanks @PJ. Yes, we're good again as Mrs KP doesn't remember anything and my bruised feelings recover quickly! We have children and grandchildren visiting at the moment and that helps as a distraction.

 

[philamillan]

Thank you all for your honesty.

This forum has helped to keep me grounded on the challenges that are faced daily for carers and families. It is easy to just look at dementia as another medical problem but it is probably the most devastating disease as the duration of symptoms is so great.

It is time to push for a breakthrough in treatment and prevention.

I have been involved in patient care and research for a long time and currently we seem to be back to square one as all the clinical trials are failing.

However, hearing your stories has continued to spur me forwards to make a difference. This next 12 months must be a game changer. It will require me to be brave, lucky, determined and strong.

I am sure if I need support, I will find it here.