Wits End

[tonyli]

Bee sitting here for ages, don't know how to start. Ginna was diagnosed three years ago. Just managed to get her on Aricept before N I C E did their thing and stopped it. Consultant saw us twice, waste of time. Have seen the Occupational person three times, now she's off having a baby.
Been married for nearly 40 years, Ginna is my whole life and I'm so upset today. Things have been getting worse and she got lost walking our dogs a few weeks ago. She cannot do much at all around the house and because we have huge depts, I have to woprk full time. A couple of weeks ago I decided that I couldnt leave her in the house alone because she became hysterical i, for instance, she couldn't turn a light off. She had a car but didn't use it much. When she was told she couln't drive she ' constantly gets angry because 'I took her car away'. I drive for a living so you can imagine how it is. Every few minuites she moans at me because she sees everybody else driving and she can't.
This is going on and on and I'm sorry. Yesterday we had quite a good day but last night, as usual, she woke up at about 11 and something wasn't right, all my fault as usual. This time she couldn't calm down and after about an hour of verbal abuse I felt I had to ring the emergancy doctor. While I was talking to the doctor Ginna came in and threw a chair at me. Since then she tells me to get out of her house. I haven't been able to go to work so I can't earn any money.
Things keep going round and round in my head. I desperantly want to comfort her but she doesn't want to know. I'm waiting for the doctor to come and I don't know what will happen. If they take her away she will never forgive me. I want to stay at home to look after her but we will end up losing the house if I can't work.
I realose this sort of thread must have been posted a hundred times before but I just don't know what to do for the best. I know that no one can help apart from offering their sympahies, I just want someone to take charge and help us. No future,WHY.
(sorry for any spelling mistakes)

 

[sussexsue]

Hi and welcome

I havent been where you are (yet) so cant really offer any advice. What I do know though is sometimes just writing it down and sharing really helps.

Its bad enough dealing with someone at this stage of AD, Gina no longer being the person you married. But I cannot imagine what it is like to have money worries on top of all this. If it was me I would just want to run away, but of course we cant do that.

It certainly sounds as though you need some help. Lets hope your doctor can set the wheels in motion for you.

Take care

Sue

 

[Winnie Kjaer]

I am sorry you have had to come on TP in this bad situation, however I want to welcome you. Personally I have no experience of aggressive behaviour but plenty on here have and I am sure you will shortly get loads of answers and suggestions. Hope your doctor can help this morning. Lovely to hear you describing your wife as the love of your life after 40 years. My husband is mine too and we have been married for 42 years. He has Vascular dementia, a result of severe strokes.

 

[Norrms]

Hope this helps

Hello, i only wish i could wave a wand and make your and everybody elses problem dissapear my friend but failing that i noticed you said you have huge debts. Do you know there is such a thing called a DRO? (debt relief order) which can be asked about and obtained through the CAB Citizens advice centre. Its designed especially just for people like yourselves who are in debt but as no fault of their own. Please give them a ring and see what they can do for you, hope this helps, Norrms and famly xxxxxxxxx

 

[Helen33]

Dear Tony,

No this story has never been told before because it is your story with Ginna and I would like to say that I am so pleased that you have found a place where you will be warmly welcomed and encouraged

First of all, there will be help for you in your unique situation but it might take some sifting and sorting. It sounds to me like you have managed exceptionally well until now and it is neither yours nor Ginna's fault that what once worked does not work now. This is because the diseases are progressive and the situation changes.

From the way I read your situation, you need a review of both your needs and Ginna's needs. I would suggest that you first contact your local branch of the Alzheimers Society and request that someone come out to you. If you feel you would be restricted in what you are able to say because of Ginna being present, then perhaps you could meet this person outside of the home. These people are experienced in your kind of situation and will be able to direct you towards the practical help that is required. It is clear that you need to work and therefore it sounds like it is time to start getting some help in. You could also contact your Social Services Dept. and request that they send a social worker to do the carers assessment and an assessment on Ginna. This will help to get you some assistance to look after Ginna.

I hope you find Talking Point to be a source of support and information and that you benefit from the friendliness of the site.

Love and best wishes

 

[Norman]

Hi Tony
I read your post and I can empathise with you Having been there.
The gate way for all things is the GP,he/she can contact social services and get the ball rolling.
You can of course contact social services yourself.
There is help there and you need it.
The social worker MUST arrange a community assessment for your wife and yourself,have a look at this fact sheet
http://www.alzheimers.org.uk/factsheet/418
Hope this is helpful.keep in touch
Norman

 

[Trying my best]

Hi Tony,

I agree that it sounds like you need to make a start at arranging some help right now. It's all but impossible for one person alone to provide all the care your loved one will need. Even if your wife refuses to engage with any services at first, you need to get an assessment of YOUR OWN needs, and stress to the powers that be that you need help NOW.

I sometimes think that the person with dementia needs a break from you as much as you need a break from them. The agression and hostility that you describe is really common and is definitely something I have experienced myself, so I know how hurtful it can be. I find that after I've had a break from caring, and mum has had a break from me, that our relationship is SO much better and she is MUCH more compliant.

Introducing help can be extremely difficult, so don't expect it to be a success overnight. It's something you have to persevere with but once you find the right place/the right people, things suddenly start to fall into place.

Another thing that you may already have tried is to change your approach wuith your wife. If she gets hostile towards anything you are trying to get her to do, just forget about it for a while, walk away and try again a while later. The tone of voice you use is really important - try using different styles to see what she responds to best. And if anyone asks my mum a direct question she gets really cross, so we have all learned to say things in a different way. Rather that asking 'Do you want X?' we say 'Let's have X.' The difference in her response is HUGE!

Good luck, Tony.

 

[tonyli]

Thank you all so much for all your replies so soon after I posted. Doctor came, listened to Ginna ranting about how she's finished with me ,wants nothing more to do with me. Went away saying that he would see what he could do, not holding my breath.
Thanks for all the advice. Certainly walking away from the aggression has worked up to now, doesn't seem to be at the moment. She wants to go and live with her father. Her mum and dad live nearly 300 miles away, mum had a stroke 20 years ago and is bedridden having just recovered from double pneumonia before Christmas and dad is also recovering from prostate cancer, colostomy bag and all. Both in their late 80s so of course there will be no problem in her going to live with them!!
If I'm honest it would be great to have a break but it is out of the question.
Have phoned work this morning and they are understanding at the moment but that won't last forever so I see no alternative to going in tomorrow and leaving Ginna alone in the house.
As you guys have already pointed out, just posting this stuff seems to help a tiny bit so I reckon you'll be putting up with more feeling sorry for myself.
Thanks again.

 

[exsocialworker]

Hi Tony,
Your situation certainly does sound very difficult, but with the right support things can improve.
There are a lot of services available and although you are not in a great position financially that shouldn't matter - in my experience if you can't pay you don't pay.
Money is pretty key in your situation so I'll start with that.
is your wife over 65? If so is your wife getting Attendance Allowance? If she's not over 65 then it's Disability Living Allowance. Your wife is eligible.
Does anyone other than you and your wife live in the house? If not then are you paying full council tax? There is a "severe mental impairment exemption" for council tax payments. Not a nice term I know. A diagnosis of dementia is considered sufficient to meet the criteria, but your wife must also be receiving Attendance Allowance. I rarely had cases of under 65s but I assume Disability Living Allowance in place of Attendance Allowance for under 65s. So that might reduce your council tax by 25% (your wife would be disregarded on council tax).
Secondly - you need an urgent referral to the mental health team for older people. They vary slightly around the country but firstly I think they would be checking whether medications or a physical ailment are contributing or could benefit the situation. They also usually have physiotherapists, ot's and maybe social workers.
A social worker could help you to look at financial entitlements and also tell you what is available locally in terms of practical support. ie day centre, luncheon club, volunteer from Alzheimers Society or elsewhere, home care, respite care, specialist dementia services. These workers are very skilled at dealing with people with your wifes condition. And very sympathetic to support those who need to work. They can also assess for other streams of funding that you may be eligible for for additional support at home.
Driving is a big thing to lose and it's a shame the GP didn't take a role in that rather than it having to be you.
Good luck.

 

[tonyli]

Thanks exsocialworker. Ginna is only 56 and is getting the lower and middle levels of DLA as well as Incapacity benefit. We are also getting a reduction in our Council Tax. I'm not eligable for Carers Allowance because I have a private pension which puts my earnings above the maximum, same for Working Tax Credit. I will be 65 in June so I can't wait for the huge old age pension.
On a happier note she has just smiled at me and has accepted my offer of a coffee. That smile has made my whole day.
Incidentally, does anyone know if alchohol effects the bad moods as Ginna had a couple of glasses of liqueur before going to bed last night. She rarely touches alchohol apart from Christmas.

 

[exsocialworker]

Alcohol and aggression

Hi Tony, I'm glad you had a nice moment to savour. The effect of alcohol on someone with dementia is very individual. The answer as to whether alcohol contributed is "maybe" and you can judge it better than anyone. I assume the diagnosis is AD given the aricept. As a general rule in some types of dementia Alcohol can have a particularly severe effect, but AD isn't one in which alcohol is particularly advised against. However if you notice particular difficulties after alcohol consumption then try to steer Gina away from it. If the frontal lobes have damage then alcohol can worsen the potential for aggression/disinhibition.
I would really recommend that you look at trialling some services (if you aren't already) sooner rather than later. For one thing it takes a while for things to get set up. And secondly in my experience people with dementia generally adapt better to needing care if they get used to having care when they can make some sense of it, form relationships, get into a routine. Everyone is different though.
Is there a Crossroads where you live? They are an organisation whose remit is "caring for carers". They have different arrangements with different local authorities across the country. As your wife is so young you may find that there are specialist services available that can help you. The young onset services (now called "working age dementia") recognise that carers have to work and that there may be younger family members also. Although you can't get carers allowance you are eligible for carers services which may not have a charge. Each local authority is different so I can't be definite about that.
There is also a small possibility that your wife might be eligible for continuing care funding. I have had clients with very large packages of care fully funded through this - particularly those of working age.
The route to this is via a social worker. They are there to help. If there is a specialist dementia social worker through the mental health services older people then ask for them. If there is a specialist working age dementia social worker even better.
Good luck.

 

[tonyli]

Thanks again exsocialworker for all that advice. At present I'm waiting for a social worker to get in touch and hope to go forward from there.
Incredibly, after the dreadful trauma of Sunday night things have been unbelievably good today, with Ginna chirpy and good company. How on earth can two days be so different? of course, all that is happening with me is waiting for the next bad time. However I'm so grateful for today.

 

[Margaret W]

Dear Tony

I think you started your thread by saying your problems were the same as everybody elses, and I remember thinking No, I haven't seen this one quite before. Lots of similarities with others, but then every situation is unique.

I have no experience of your situation, so what I now say is probably not helpful.

So she enjoyed the two liquers, and they didn't have any bad effect - did I get that right? At the risk of the government suing me for encouraging drinking, I would say stick with the liquers. Maybe not every night. They are probably stronger than most drinks. Or maybe two smaller measures. Hey, if it works, it works. Alchohol is known to shrink the brain, but to what extent a small amount would have effect is probably not known. I think we have to approach these things with care but with sensibility too. But if I have it wrong,and the liquers didn't help then yes, they could be a bad thing. Everyone is different. I was told by a doctor years ago that alchohol affects the absorption rate of drugs, so if she is on aricept, it won't work as well. It is apparently the same with antibiotics which all come with a warning not to take alcohol. The alchohol itself apparently doesn't do any harm, it just means the antibiotics take longer to kick it - which could be very important in a dementia patient.

Glad you seem to be on top of all the benefits you are entitled to, that is reassuring. I wonder why she doesn't get the higher rate of DLA, seems that she should. I am talking off the top of my hat - is there such a thing as a higher rate of DLA?

Other people have sensible things to advise, I don't need to add to them.

Love

Margaret

 

[tonyli]

Thanks Margaret. There is a higher level of D.L.A. but she is not there yet. I tried a couple of liqueurs the other night with no bad moods so not too worried there.
Turning to support, the social worker eventually rang me and asked me to describe Ginna's situation. After I had done that I said to her that I was sure her experience of people with Dementia was greater than mine. Her comment was,'Actually I don't really know much at all about that illness, I had better read up on it' The conversation ended fairly abruptly after that. You couldn't write this stuff!!

 

[danny]

Tony,the Alzheimers society representative for Devon and Cornwall is coming down tomorrow to discuss partnership working.One of the topics we will be discussing is care for younger adults with dementia.Are there any questions you would like me to put on your behalf.Also which town do you live near,I will hopefully be able to explain more about the visit tomorrow.

 

[Margaret W]

The Social Worker said what? I don't believe it! But I must believe it cos you have just told me.

Margaret

 

[jc141265]

Hi Tony,

I live in Australia so can't offer you practical advice, but I can say there can still be a happier future. My Dad was 54 when diagnosed and the early years were the hardest, because the loss of abilities, changes in emotional responses, are all new to the person with dementia and their carer, so tend to be more shocking, and provoke a lot of anger, confusion, sadness and frustrations.

My Mum and Dad's relationship got really bad in the early years, because of all this, to the point of physical aggression, but 12 years down the track, they are in love again, even though that sounds strange that a dementia patient in last stages could be in love and be madly loved. It's as if they have come full circle and after reconciling to the disease, they just appreciate the time they have together now. Its been 3 years of calm now, and life is so much easier as a result.

One thing I think is needed to make this happen however, is for you to be able to get some respite and rest. This is not a selfish thing to do and in fact, sometimes the dementia patient needs some respite and rest from their carer too, even though they may deny it.

When you are really freaking out about something in your life (like for example being told you are going to lose your mind, or at least realising nothing is making sense anymore) the sheer terror of it, the confusion etc can make you lash out at those you love. You feel angry that your loved one can't rescue you, you feel guilty for being angry, you feel angry that you feel guilty when everything in your world is falling apart, why can't anybody help. Also there is the fact that dementia can affect a person's ability for empathy, can make them apathetic, can cause them to feel anger for no apparent reason at certain times of the day etc. These changes can take quite some time for the carer to get used to and accept.

Well anyways its near midnight here in Oz, so I better go. Know I am thinking of you and hoping things get a bit easier for you soon.

Best wishes,

 

[tonyli]

Hi Danny, wish I'd seen your post earlier. I guess it's too late to get any questions answered. I think my main area of concern is the mood swings, no, silly me, I've got a million questions. I think the biggest problem is that I dearly would like to discuss lots of things with someone who has far more expeience in these things than I have but I am with Ginna 24/7 (oh how I hate that expression)and she would get very upset if she was there. So I can't see how we get round that. I live in Bodmin and can't find anywhere nearer than Camborne which is 30 odd miles away.
Have had a couple of weeks of pretty good times with Ginna but I am getting the feeling that she regards me as a nice bloke who appears to be living in the same house rather than a loving husband of 40 years. That's really hard.

 

[tonyli]

Hi Nat. God, that make SO much sense, you don't know how lifted I felt when I read your post. You hit the nail on the head so many times. Thanks so much.

 

[sad nell]

Tonyli, sorry you are have a hard time at moment, Nat helped me many years ago with her way of thinking, and yes she hits the nail on the head, maybe if you read some of her posts going back some 3/4 years , they may help you too, best wishes to you and your wife , pam