My life is falling apart

[Acertree]

My wife was diagnosed with alzheimers a couple of years back but strenuously denies it. We have no local friends or family who can visit. I have applied for a bit of financial assistance but unfortunately didn’t qualify because her disease isn’t considered severe enough and this has made me realise things have been wrong in our marriage for 28 years or so. I am nearly 84 and showing little or no tolerance of her drinking and smoking.
I’m facing a brick wall.

 

[NewbyT]

Hi @Acertree and welcome to Dementia Support Forum

Thank you for making your first post on the forum and speaking so candidly about your wife's diagnosis. It sounds like you're doing a lot of reflection on the back of this.

I want to let you know that you are in the right place to get support and understanding, so well done for reaching out and taking that first step.

 

[Gosling]

Hello @Acertree and welcome from me too to this friendly and supportive forum. There is a lot of shared experience of dementia to be found here so I am glad you have found us.
I am sorry to read about your Wife . You have made a great start by putting down on here how you feel. That can sometimes help just by itself.
Members here really do want to help, so please do have a good look around the forums and aske any particular questions you may like to. You will find total understanding here.

 

[sue31]

Hi @Acertree and welcome to Dementia Support Forum

Thank you for making your first post on the forum and speaking so candidly about your wife's diagnosis. It sounds like you're doing a lot of reflection on the back of this.

I want to let you know that you are in the right place to get support and understanding, so well done for reaching out and taking that first step.

My wife was diagnosed with alzheimers a couple of years back but strenuously denies it. We have no local friends or family who can visit. I have applied for a bit of financial assistance but unfortunately didn’t qualify because her disease isn’t considered severe enough and this has made me realise things have been wrong in our marriage for 28 years or so. I am nearly 84 and showing little or no tolerance of her drinking and smoking.
I’m facing a brick wall.

Google admiral nurses and request a call back, they really helped put me on the sometimes very bumpy road to getting help.
Hasn’t solved the many issues but it was a start.
Do you have any carers come in at all? If not ask social services to assess her.
Also suggest you googling Attendance Allowance, she should qualify for at least the 60 odd £ per week. It’s not means tested and that miney could be used for carers to give you a couple of hours respite a week. Ring the number on their website & get the forms applied for. You can fill it in & apply on her behalf if she lacks capacity.
Age concern can probably help too - day centres for her to attend/befriending service etc, give your local branch a call.

 

[Acertree]

Google admiral nurses and request a call back, they really helped put me on the sometimes very bumpy road to getting help.
Hasn’t solved the many issues but it was a start.
Do you have any carers come in at all? If not ask social services to assess her.
Also suggest you googling Attendance Allowance, she should qualify for at least the 60 odd £ per week. It’s not means tested and that miney could be used for carers to give you a couple of hours respite a week. Ring the number on their website & get the forms applied for. You can fill it in & apply on her behalf if she lacks capacity.
Age concern can probably help too - day centres for her to attend/befriending service etc, give your local branch a call.

Thanks for suggestions - I did apply for Attendance Allowance but it was turned down.
My wife refuses to allow any visiting help.
A meaningful conversation is impossible and I have become the old guy who tries to talk to anyone in the street. It’s sending me round the bend!

 

[Kevinl]

Daft question maybe, but why is it that men seem to struggle much harder to get help.
Lots of people struggle, children, relatives , wives and all the rest, but husbands are some how much more capable, apparenly.
K

 

[marymook]

I am also nearly 84 but I'm the wife where you are the husband. I experience everything you've mentioned in your posts. You have my complete sympathy.

 

[Louise7]

Hello @marymook welcome to the Dementia Support Forum. Thanks for your supportive message, sometimes just knowing that there are others who are in the same situation and understand is a real help.

 

[sue31]

Thanks for suggestions - I did apply for Attendance Allowance but it was turned down.
My wife refuses to allow any visiting help.
A meaningful conversation is impossible and I have become the old guy who tries to talk to anyone in the street. It’s sending me round the bend!

Think you need to go see your Gp & explain all of your problems and growing issues with your wife..
I know just how easy it is to become depressed yourself when you can see no end to this, medication has helped me a lot (but not solved all my problems), and your Gp may also have some really helpful advice on getting the help you need dealing with your wife’s decline too.
If you don’t ask they won’t come to you - there’s no shame in requesting help.
Get onto your local dementia crisis team too.

 

[Veritas]

Thanks for suggestions - I did apply for Attendance Allowance but it was turned down.
My wife refuses to allow any visiting help.
A meaningful conversation is impossible and I have become the old guy who tries to talk to anyone in the street. It’s sending me round the bend!

You need to re-apply for the Attendance Allowance (AA), or if this decision was very recent, appeal - Age UK can usually help you do this, or direct to someone else who can. It's particularly diifficult with dementia because the form is really designed for people with physical difficulties, so it's important to describe and stress the level of supervision and support she requires to get through a day safe and well. Don't forget things like always having to be accompanied when going for medical appointments, or being unable to manage her medication or finances independently. Think about what happens on the worst days and write it down. Also, once you've got the AA (and you will get it) you can then claim a 25% reduction in Council Tax (assuming from what you've said that it's just the two of you at home) because your wife has severe mental impairment. Some councils (but not many) will agree the discount once they have evidence of a relevant diagnosis, but most insist that things have got bad enough for AA to be in payment.

As for your wife refusing to allow any visiting help, there comes a point when your need for time out trumps her wants. Ask for an urgent social care needs assessment and a carer's needs assessment for yourself - emphasise how difficult things are for you. You are entitled to these assessments even if your wife will be self-funding. Please don't let yourself get to the point of collapse - insist on some help being provided and soon.

 

[2ndAlto]

Some have suggested that visiting carers can be introduced to the home as cleaners or assistants for YOU rather than for your wife? Perhaps if you say someone is "coming in on ***day morning to help me for a couple of hours" your wife might accept it?

 

[Kevinl]

Been since 1976 we ve been a couple, strange all though years good and not so good I d do it all again if I could.
K

 

[Knitandpurl]

Me too KevinI, but I’m lucky, for the most part my husband’s personality is still intact, he might be ‘more’ in some ways and ‘less’ in others but he is still (a lot of the time) very much ‘him’.

 

[Acertree]

Thanks for reply. From reading some of the forum posts I can see I am shouting before I’m hurt, I have a very long way to go in this process and things are going to get far worse.
A pretty bleak future that I’m not sure I can handle.

Some have suggested that visiting carers can be introduced to the home as cleaners or assistants for YOU rather than for your wife? Perhaps if you say someone is "coming in on ***day morning to help me for a couple of hours" your wife might accept it?

I did arrange for one hour of respite with a visit from a carer/cleaner but my wife kicked her out. I came home to find the carer sitting on the doorstep!

 

[Jaded'n'faded]

I am shouting before I’m hurt

No, you're not. It sounds as though you're already hurting a lot.

things have been wrong in our marriage for 28 years or so

Caring for someone with dementia when a marriage is already strained is very difficult - impossible for some. You've only got to look around the forum to see how it has broken relationships that used to be good, never mind those where things were already difficult.

You don't have to do this. You do have choices though none are easy. You are right in that things will get worse, possibly a whole lot worse so it's a good thing you are reflecting on your future. Not all of us are cut out for caring (I am definitely not!) and not all families are happy families.

If you really can't do this, you could leave the marriage. You can also contact social services and tell them you have reached carer breakdown and simply can't do this anymore. Tell them you can no longer care for your wife and they must arrange care for her (following a care needs assessment). They have Duty of Care, not you, but you may have to remove yourself, perhaps temporarily, before they will take notice.

Don't let your wife's dementia destroy you too.

 

[Banjomansmate]

Maybe you should try again with another “helper” only for the first couple of times stay and talk so that your wife (hopefully) accepts them as a “friend “, then gradually increase the time you leave them together? Although, saying that, my neighbour is still objecting to the actual friend of her daughters who has been going in for the best part of a year to clean once a week. She is still convinced she does everything herself!

 

[Acertree]

No, you're not. It sounds as though you're already hurting a lot.


Caring for someone with dementia when a marriage is already strained is very difficult - impossible for some. You've only got to look around the forum to see how it has broken relationships that used to be good, never mind those where things were already difficult.

You don't have to do this. You do have choices though none are easy. You are right in that things will get worse, possibly a whole lot worse so it's a good thing you are reflecting on your future. Not all of us are cut out for caring (I am definitely not!) and not all families are happy families.

If you really can't do this, you could leave the marriage. You can also contact social services and tell them you have reached carer breakdown and simply can't do this anymore. Tell them you can no longer care for your wife and they must arrange care for her (following a care needs assessment). They have Duty of Care, not you, but you may have to remove yourself, perhaps temporarily, before they will take notice.

Don't let your wife's dementia destroy you too.

Thanks for the real life suggestions if a bit daunting!
A new development is her taking one bight from any food she spots and actually stealing from my meal plate and then throwing it into the bin. Strange and worrying behaviour.
Anyone else experiencing this?

 

[Acertree]

Maybe you should try again with another “helper” only for the first couple of times stay and talk so that your wife (hopefully) accepts them as a “friend “, then gradually increase the time you leave them together? Although, saying that, my neighbour is still objecting to the actual friend of her daughters who has been going in for the best part of a year to clean once a week. She is still convinced she does everything herself!

Maybe you should try again with another “helper” only for the first couple of times stay and talk so that your wife (hopefully) accepts them as a “friend “, then gradually increase the time you leave them together? Although, saying that, my neighbour is still objecting to the actual friend of her daughters who has been going in for the best part of a year to clean once a week. She is still convinced she does everything herself!

She simply doesn’t want any kind of visitor.
Now her afternoon/evening gin drinking has resulted in four heavy but non damaging falls.
Am I wrong in trying to deny her this ‘pleasure’?

 

[amIinthewrong?]

I'm Sorry that this is happening but you are going to have to put you're foot down and get someone in to help,you may have to talk to social services, you said she is throwing your dinner in the bin so now you're not even getting to eat when you need to, and yes denying her this "pleasure" is going to cause an agurement but it is impacting her health more,you can also mention that to social services as well I know you mean well and want all the best for her and to provide her what she "wants" but what she needs is "help" like I said you need to put your foot down/be stern and get the help that is out there, I hope this helps.💐💐

 

[Firecatcher]

My wife was diagnosed with alzheimers a couple of years back but strenuously denies it. We have no local friends or family who can visit. I have applied for a bit of financial assistance but unfortunately didn’t qualify because her disease isn’t considered severe enough and this has made me realise things have been wrong in our marriage for 28 years or so. I am nearly 84 and showing little or no tolerance of her drinking and smoking.
I’m facing a brick wall.

I’m sorry you’re having such a difficult time. Caring for someone with dementia is challenging and extremely stressful so struggling to cope is nothing to be ashamed of. As others have suggested contact social services and very firmly state that you’re at breaking point. You will need to be extremely insistent and persistent to get the help you need. As a last resort tell them you’re leaving even if this means you go and stay somewhere else for a few days.