My husband was diagnosed with Alzheimers in January 2021 although it had been obvious for at least 2 years that something was very wrong. I feel desperate , bereft, overwhelmed, angry and out of control. I lose control with him and feel hatred at times but also pity for him. He can hardly find any words at all and is not very lucid when he does manage to find words. yesterday he was about to pour milk into the toaster but I managed to stop him. So many things are happening now to make me feel as if this life is so dreadful. I know he is ill l but how do I accept these things without becoming this vile person. I have two married sons who live in Rickmansworth; their lives are busy as they have their own family and are a support at times but not around very much. All our friends are miles away and old anyway with their own problems. Could someone give me some advice on how to accept this and the depression as I cry every day.
I registered last night.
- Thread starter Mrs Humphrey
- Start date
Hello and welcome @Mrs Humphrey
The first thing to say is that you should stick around the forum to read past posts, ask questions and vent feelings when required, as you will get support from people who understand.
The diagnosis is very recent so you may be suffering from what is known as 'anticipatory grief', which is very common. Things will settle somewhat as you get matters in order and learn to cope.
When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area(which may re-open soon, I hope!). If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.
Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
The first thing to say is that you should stick around the forum to read past posts, ask questions and vent feelings when required, as you will get support from people who understand.
The diagnosis is very recent so you may be suffering from what is known as 'anticipatory grief', which is very common. Things will settle somewhat as you get matters in order and learn to cope.
When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area(which may re-open soon, I hope!). If you are interested in these, clicking the following links will take you there
https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
https://www.alzheimers.org.uk/find-support-near-you
You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.
Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
hello @Mrs Humphrey
a warm welcome to DTP
it is so tough coming to terms with the diagnosis of a spouse and the changes caused by dementia ..... so it's good that you've joined us here so you can get things off your chest among folk who understand
your husband is entitled to an assessment of his care needs by your Local Authority Adult Services, and you have a right to a carer's assessment
from this a care package will be suggested, eg home care visits, day care, respite, a visit by an OT to suggest aids and adaptions to your home ... hopefully this will take some of the strain from you ... be brutally honest during the assessment, thay need to know how things truly are, it is not a time to hold back
after the assessment, they will carry out a financial assessment on your huband's finances only (not yours and not including your home, so do not worry that you may have to sell it, you do not)
do have a chat with your GP to let them know how you are feeling and being affected, your health and welfare matter as much as your husband's
it may help to chat with an Admiral Nursd, they are there to support carers
www.dementiauk.org
and there's our Support Line
www.alzheimers.org.uk
have a look at this thread ... it helped me to begin to see how things were for my dad and how I might approach him ... it's a guide, though nothing works every time, we're only human
forum.alzheimers.org.uk
keep posting, it helps to share experiences
a warm welcome to DTP
it is so tough coming to terms with the diagnosis of a spouse and the changes caused by dementia ..... so it's good that you've joined us here so you can get things off your chest among folk who understand
your husband is entitled to an assessment of his care needs by your Local Authority Adult Services, and you have a right to a carer's assessment
from this a care package will be suggested, eg home care visits, day care, respite, a visit by an OT to suggest aids and adaptions to your home ... hopefully this will take some of the strain from you ... be brutally honest during the assessment, thay need to know how things truly are, it is not a time to hold back
after the assessment, they will carry out a financial assessment on your huband's finances only (not yours and not including your home, so do not worry that you may have to sell it, you do not)
do have a chat with your GP to let them know how you are feeling and being affected, your health and welfare matter as much as your husband's
it may help to chat with an Admiral Nursd, they are there to support carers
Admiral Nurse Dementia Helpline
Call or email our Dementia Helpline/Alzheimer's Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.
and there's our Support Line
Dementia Support Line
If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.
www.alzheimers.org.uk
have a look at this thread ... it helped me to begin to see how things were for my dad and how I might approach him ... it's a guide, though nothing works every time, we're only human
Compassionate Communication with the Memory Impaired
The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...
forum.alzheimers.org.uk
keep posting, it helps to share experiences
So glad you've found this site cos you will find we have all experienced,and still experience all those sad feeling you are sharing . You will find nothing but understanding and empathy here. No judgement. Just say whatever you feel, getting things off your chest anonymously is so helpful . Rant and rave whenever you wish. We know how you feel.
I've turned to Talking Point so many times, treating it as an old friend. The difference is that sometimes we don't like to burden our other friends and family who may not understand and who may have their own problems.
You say how do you keep from becoming this 'vile person'? You start by knowing we all feel like that from time to time but it's important to remember that you are never vile, only human.
I am 86 caring for my husband who is 92, agreeing with everything he says even when it's rubbish. A few years ago he would have been mortified if he'd known the things I'm doing for him now.
I've had to accept that I'm no longer a wife, I'm a carer who's trying to do my best for a helpless human being. It's natural we all have good days and bad days as carers. On bad days I often take myself off to another room and say out loud with conviction, 'I can do this'. Sometimes it works, sometimes not.
This is all new to you and I really feel for you, but you are never alone while we are here on Talking Point
I've turned to Talking Point so many times, treating it as an old friend. The difference is that sometimes we don't like to burden our other friends and family who may not understand and who may have their own problems.
You say how do you keep from becoming this 'vile person'? You start by knowing we all feel like that from time to time but it's important to remember that you are never vile, only human.
I am 86 caring for my husband who is 92, agreeing with everything he says even when it's rubbish. A few years ago he would have been mortified if he'd known the things I'm doing for him now.
I've had to accept that I'm no longer a wife, I'm a carer who's trying to do my best for a helpless human being. It's natural we all have good days and bad days as carers. On bad days I often take myself off to another room and say out loud with conviction, 'I can do this'. Sometimes it works, sometimes not.
This is all new to you and I really feel for you, but you are never alone while we are here on Talking Point
Thank you. You sound very brave . And also very strong if you are 86 and doing all this. I am 78 and my husband is 82 and I feel emotionally very frail. He was always the strong one and I was always relying on him throughout all our worries and problem and this is all devastating but I will take on board your words.
A welcome from me too @Mrs Humphrey You've had some great advice already and you'll get lots of support here. It's a very friendly place and you're with people who understand all that comes with dealing with a loved one with dementia.
Thank you to everyone for your replies. I will try and be more stable and patient. If other people can do it I must be able to as well. When you love someone so much and for so many years it is totally heart breaking to watch these things but I will try to be stronger and less sensitive.
Hi @Mrs Humphrey,
its a shock to be told the diagnosis even when you'r expecting it and there must be all sorts of things going around in your mind. You say your husband has always been 'the strong one' but I am sure that with help and support you will find your own inner strength. Have you talked to your GP about how you are feeling - they may be able to point you towards help - some people on here have found counselling helpful, others have found medication can help.
I personally found the Admiral Nursing Service very helpful. Their helpline is : 08008886678. Their role is to support the carers rather than the person with Dementia and they have come across most situations before so they will listen and suggest options for you.
Both my mum and MIL have Alzheimers and I have found it helps me to focus on the practical issues if I'm feeling stressed ( weird I know ). It is easier to run their households and get help when needed with Power of Attorneys in place for both Health and Finance.
From what you have said about your husband it may be too late to get POA for him now if he cannot communicate his wishes, but please get your own sorted so your children can help at a later stage if needed. You don't need a solicitor - the forms can be filled in on the gov.uk website, printed off and completed. Register immediately is my advice as it can be used when a person has capacity with their consent.
If all your bills are not in joint names now is the time to start looking at getting things sorted before a crisis arises - you may need to apply for deputyship to the Court of Protection to be able to do this if you don't have POA.
its a shock to be told the diagnosis even when you'r expecting it and there must be all sorts of things going around in your mind. You say your husband has always been 'the strong one' but I am sure that with help and support you will find your own inner strength. Have you talked to your GP about how you are feeling - they may be able to point you towards help - some people on here have found counselling helpful, others have found medication can help.
I personally found the Admiral Nursing Service very helpful. Their helpline is : 08008886678. Their role is to support the carers rather than the person with Dementia and they have come across most situations before so they will listen and suggest options for you.
Both my mum and MIL have Alzheimers and I have found it helps me to focus on the practical issues if I'm feeling stressed ( weird I know ). It is easier to run their households and get help when needed with Power of Attorneys in place for both Health and Finance.
From what you have said about your husband it may be too late to get POA for him now if he cannot communicate his wishes, but please get your own sorted so your children can help at a later stage if needed. You don't need a solicitor - the forms can be filled in on the gov.uk website, printed off and completed. Register immediately is my advice as it can be used when a person has capacity with their consent.
If all your bills are not in joint names now is the time to start looking at getting things sorted before a crisis arises - you may need to apply for deputyship to the Court of Protection to be able to do this if you don't have POA.
Thank you. I do have power of attorneys for him as I was aware over two years ago that all was not right with him but he could still manage most things. Our two sons are joint and several replacement power of attorneys; This was advised by the solicitor but with hindsight they should not have been just replacement power of attorneys as they cannot act unless I am unable to act or decide I no longer want to be my husband's power of attorney so a wrong decision was made here on the advice of the said solicitor. At this point in time I wish they could also be full power of attorneys as it would take some of the responsibility from me as i feel I have so much on my plate as it is. No the GP does not know the state I have got into over this although he knows i was very upset at the diagnosis. I am trying very hard to accept and realise that this is what life is now but as you can imagine after so many happy years which I am grateful for it is a dreadful grief. But thank you for replying.
Hi.Mrs Humphrey.I am in a similar position with my wife.please do not think you are alone.I too have almost a love hate relationship now and I almost feel ashamed to admit it.Does your husband behave the same when family or friends are around.
He is very quiet and can't join in their conversations at all but listens though not always taking anything in at all. He has always been a very reserved man with a sharp legal brain and never gets angry with his situation; I am the one who really gets angry but I am struggling to become more patient . This seems like a nightmare to me and the saddest realisation is that we shall never really be happy again. I keep telling myself that if I can make him happy then i shall feel more contented and worthwhile but all my good intentions fly out of the window when I am faced with all this odd behaviour and the lack of any communication between us a lot of the time. But I am trying. we don't have many friends nearby at all ; most of them are over 100 miles away and although we have two sons who are both only 10 miles away because of lockdowns and their busy lives we haven't seen very much of them really... just very brief visits. I'm sure that here are so many people in this horrendous position.
Hi again Mrs Humphrey.I wonder if you have considered a qualified carer for a while just to allow yourself a few hours to yourself perhaps undertaking a hobby or something that you yourself enjoy. I myself go for a game of golf while the carer spends time with my wife.I look on this as charging my batteries and also enjoy fresh conversation. It did take a while and some persuasion to explain this to my wife but she now accepts this situation,
I agree with @slim-jim , a carer will give you a break, and an escape for a couple of hours. In some areas Age UK offer what they call Personal Assistants to do this - cost is around £15 per hour and they don't do personal care. We are on Bucks/Herts/Beds borders - Bucks and Beds don't offer it, Herts do, but it seems you don't need to live in the county that provides the service. Worth bearing in mind if you are near a border. Some care homes offer daycare - again you'll have to pay - which could give you a whole day for yourself. Make sure you apply for Attendance Allowance, which you can use to fund these things.
I care for my mother, who I love dearly, but frequently don't like. I 'm often angry, frustrated, and terribly sad. I can't offer a magic wand to make it go away, but please know you aren't alone.
I care for my mother, who I love dearly, but frequently don't like. I 'm often angry, frustrated, and terribly sad. I can't offer a magic wand to make it go away, but please know you aren't alone.
