Having a Bit of a Crisis

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
Hi, I haven't posted for a while but recently my relationship with my wife (who is 60 and diagnosed with Alzheimers 5 years ago) has seriously deteriorated. When we started on this journey I naively thought I would be able to cope, we had a very happy loving marriage.

I have reached the point now however where on some days I can hardly bear to be in the same room as her she annoys me so much. Its's not one specific thing but the culmination of so many. Although physically fit she is now incapable of writing, reading, speaking coherently or of understanding much of what is said. She spends most of the day wandering through the house constantly humming the same inane little tune to herself.

She is obsessed with finding her parents who died years ago, whenever we go out she generally takes a lot of persuading to go and always becomes angry when we reach the destination because she thinks we were going to see her parents. Recently she has refused to go into the shops when we get there or get back into the car to come home. She also refuses to go to the toilet even though it is obvious she wants to go, she can go hours between visits until it becomes desperate and increasingly she is wetting herself. Because of these issues I have almost stopped taking her out other than for medical appointments. In the last few months she has refused to allow the dentist and a chiropodist examine her and at her annual check up at he doctors she wouldn't allow the nurse to touch her, taking bloods is out of the question, all we could do was to get her to stand on the scales albeit with her shoes and coat on.

She will wake up several times during the night and either sit up humming that stupid tune, ask over and over again for her parents or ask to go to the toilet. Having gotten up to put the light on and show her where the bathroom is she then refuses to go, only to want to go again 20 minutes later and so on. So most days start with me being very tired and not in the best of moods. When she then refuses to get in the shower, throws dirty underwear in my face, starts shouting obscenities at me, flicking soap and water at me, refusing to dry herself, snatch the clean clothes out of my hands I now tend to lose my cool and have sworn more at her in the last 18 months than I have in the previous 62 years of my life put together. Even when I leave the room to get away from her she tends to appear ghost like in the room I have gone to a couple of minutes later and starts humming again.

I know I shouldn't but I now get so angry I argue back, I tell her in no uncertain terms to shut up when she starts humming, and to my shame I have come right out and told her that her parents are dead and generally have to storm out for fear of doing something I'd regret.

I feel so tired and weak after one of these episodes that I then just can be bothered to make any effort to interact with her at all. I'll make meals and hot drinks, ensure she has her medication, prompt her to go to the toilet, I have given up any attempts at distracting her or making small talk and we can often spend most of the day hardly speaking.

I end up feeling thoroughly ashamed of myself but know that tomorrow will bring more of the same and I will probably react in he same way.

Worst of all I am becoming isolated from friends and family because she becomes angry and aggressive if I speak to people. I therefore can't invite people to our home because she becomes so disruptive and will swear at people. If I want to see anyone it has to be on one of the two afternoons I have off when a carer comes in, as you can imagine this is very restrictive. I even have to make phone calls upstairs because she becomes angry when I am on the phone. In particular it is becoming increasingly difficult for me to have much of relationship with my two grown up daughters. They are very understanding and happy to visit and be sworn at but I would be on edge the whole of the time and would ultimately end up getting very angry that it isn't worth it.

We do have some good friends who have stuck by us, my wife in particular has a friend who visits from quite a distance for an afternoon most weeks which means I can get out for a third afternoon. They always have a good time but my wife will get very hostile towards her friend on my return.

I'm not sure where I go from here, because she is relatively young any suitable day care facilities are few and far between if there are any at all who would have her, that's always supposing she cold be persuaded to go. At her annual check up the nurse suggested I speak to a GP to review what to do next. I'll leave that until after Christmas now but I am not too hopeful of anything coming from it.

Sorry this has gone on a bit, thank you for taking the time to read, any thoughts would be welcome.
 

marionq

Registered User
Apr 24, 2013
6,013
Scotland
This is both horrible for you and familiar in many ways. Your own reactions which trouble you so much are hard to bear when you have always had a good relationship and I recognise the frustrations. I can't tell you to do more than you already are doing and hope that your GP has an answer.

Perhaps one of our members can help. Good wishes.
 

Beate

Registered User
May 21, 2014
11,839
London
Poor love, you're suffering from carers breakdown, and you desperately need more help. Get onto Adult Social Services and say that they have duty of care for her, not you, and that you are worn out. If two afternoons a week aren't enough, ask for more carers to come in. Explore day centres and respite. Even if it might take until after Christmas to see results, make that call now. Your right to a carers assessment is enshrined in law.

No offence to GPs but they are there for medical care - your wife needs social care.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,360
Bristol
So sorry to read of your crisis, Northside. As Beate says you really need a care needs review for your wife and a carers review for your self, but you can arrange emergency respite to give you space to think, so definitely contact Social Services.
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
This is both horrible for you and familiar in many ways. Your own reactions which trouble you so much are hard to bear when you have always had a good relationship and I recognise the frustrations. I can't tell you to do more than you already are doing and hope that your GP has an answer.

Perhaps one of our members can help. Good wishes.
Thanks Marion, I'm hoping at least a good nights sleep will help, hopefully that might be tonight.
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
Poor love, you're suffering from carers breakdown, and you desperately need more help. Get onto Adult Social Services and say that they have duty of care for her, not you, and that you are worn out. If two afternoons a week aren't enough, ask for more carers to come in. Explore day centres and respite. Even if it might take until after Christmas to see results, make that call now. Your right to a carers assessment is enshrined in law.

No offence to GPs but they are there for medical care - your wife needs social care.
Hi Beate, I've only been in touch with social services once when I first felt I needed some time off. We are self funding and I felt that once this was established Social Services were not really interested, no assessment was carried out, they gave me a list of providers and it was left with me to make arrangements. I will follow your advice and get in touch again. I assume that if they carry out an assessment that as we are self funding it will be up to me to put any care/respite requirements in place, from my point of view I need to know what is available. Thanks for your reply.
 

sunlover

Registered User
Dec 6, 2011
56
Thanks Marion, I'm hoping at least a good nights sleep will help, hopefully that might be tonight.
Your a amazing man! You need help
and please phone up Adult Social Services
and tell them you need help.Have you a carers association where you live or a Deminia Alliance Group?
 

sunlover

Registered User
Dec 6, 2011
56
Your a amazing man! You need help
and please phone up Adult Social Services
and tell them you need help.Have you a carers association where you live or a Deminia Alliance Group?
Just read Beats reply,we are self funding
paying 5 days for Day Care( amazing staff)have lots of respite(they look after him at home)all our savings will be gone
Soon!You need to think of yourself!
 

karaokePete

Registered User
Jul 23, 2017
5,111
N Ireland
Hello @NORTHSIDE, it may be worth talking to the help line experts as they may be able to give a few pointers of how to proceed with SS when self funding. The details are
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

It may also be useful to speak to Admiral Nurses if they operate in your area, here's a link to their site
https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
Thank you for your replies, I promise I will make some phone calls next week. Probably starting with the dementia helpline and then social services. I'm sure I'll feel better just for calling someone. We do have a carers association here, they have a drop in once a week which because of my caring role I can't get to (i'm sure that's the case for lots of people) but I think they too have a helpline. I will take some action. Meanwhile thank you for your replies
 

sunlover

Registered User
Dec 6, 2011
56
Thank you for your replies, I promise I will make some phone calls next week. Probably starting with the dementia helpline and then social services. I'm sure I'll feel better just for calling someone. We do have a carers association here, they have a drop in once a week which because of my caring role I can't get to (i'm sure that's the case for lots of people) but I think they too have a helpline. I will take some action. Meanwhile thank you for your replies
Do you have a carers allowance?This year when I applied the lady asked if I received £400 to help with a carer or 500 for respite.I got £200 to Join a fitness club and £400 to help with a carer
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
Do you have a carers allowance?This year when I applied the lady asked if I received £400 to help with a carer or 500 for respite.I got £200 to Join a fitness club and £400 to help with a carer
Hi Sunlover, yes I get the carers allowance, my wife also gets the Personal Independence Payment which covers the cost of the 6 hours care we have per week. I take it in two lots of three hours which allows me to get out for a swim and do some shopping.
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
both your original post and this resonate SO MUCH with me - my husband (now 62 diagnosed 4.5 years ago with eoAD by then already well-entrenched) now so very like your wife - i have posted torrents on here about the impossibility of getting any advice or help from the professions (because we are self-funding) or of getting respite in a system geared (expensively and remorselessly) to those in advanced old age.

I have, however, eventually managed to keep working part-time and find one-to-one day care that is relatively affordable and works and preserves some of both our sanity. PM me if you want more details. I am happy to give you all my sympathy but I also know from experience that sympathy alone is not enough and understand your deep frustration and share your despair.
Hi Sarahdun, thanks for your reply, i'm very sorry to hear of your husband. Funny isn't it, whilst you wouldn't wish this on anyone and no matter how supportive friends are it helps to know that others are experiencing the same issues, and that you are not alone in this. when my wife was first diagnosed the doctor who broke the news said that although there were lots of groups for people with dementia because of my wife's age, (then 55) there was nothing suitable for her. It was left that I get back in touch if I needed any more support. Well I think now is the time.

I would be interested to hear of your experiences and any advice you might have in finding suitable care for younger people. My wife is difficult enough on the days when a carer comes to our home an I leave. I just don't know how I would ever get her to go to day care.

Look forward to hearing from you.
 

Philbo

Registered User
Feb 28, 2017
753
Kent
Hi @NORTHSIDE

My wife will be 68 in the new year and has been diagnosed nearly 5 years with FTD.

I can fully empathise with how you are feeling, as although my wife doesn't suffer with the anger issues that your wife does (thankfully), she does have some very irritating traits. Like you, I find myself getting very frustrated and sometimes I too snap back, for example when I am trying to get her to lift her foot up for the thousandth time of the day, so I can put her pull-ups and trousers back on!

With regard to getting your wife to go to a day centre, you mentioned that she is always trying to find her parents, so I wonder if you could perhaps get her there on the pretext that "we may bump into people that we know"? I do understand though that it is very difficult for you.

On the subject of carer's assessment, many of the carer support organisations are able to carry these out on behalf of the LA? I got mine done this way, as our local Carer Support organisation are accredited by the LA and their assessment was sent to them. The LA then followed this up with an assessment for my wife.

As my wife is self funding (but not hugely above the upper threshold), they suggested we try 1 day a week at a local day centre (run by the NHS mental health trust), which she has been going to for a year now. We pay the LA monthly (£37 a day + £5 for lunch) and this year, my wife stayed in their respite unit for 9 days while I had my first respite break in over 5 years. Again, we funded this but as it's arranged by the LA, the cost was less than an equivalent stay in private facilities in the area.

I hope you are able to sort something out very soon and I wish you a peaceful Christmas.

Best wishes
Phil
 

NORTHSIDE

Registered User
Jan 28, 2017
84
Northumberland
Hi @NORTHSIDE

My wife will be 68 in the new year and has been diagnosed nearly 5 years with FTD.

I can fully empathise with how you are feeling, as although my wife doesn't suffer with the anger issues that your wife does (thankfully), she does have some very irritating traits. Like you, I find myself getting very frustrated and sometimes I too snap back, for example when I am trying to get her to lift her foot up for the thousandth time of the day, so I can put her pull-ups and trousers back on!

With regard to getting your wife to go to a day centre, you mentioned that she is always trying to find her parents, so I wonder if you could perhaps get her there on the pretext that "we may bump into people that we know"? I do understand though that it is very difficult for you.

On the subject of carer's assessment, many of the carer support organisations are able to carry these out on behalf of the LA? I got mine done this way, as our local Carer Support organisation are accredited by the LA and their assessment was sent to them. The LA then followed this up with an assessment for my wife.

As my wife is self funding (but not hugely above the upper threshold), they suggested we try 1 day a week at a local day centre (run by the NHS mental health trust), which she has been going to for a year now. We pay the LA monthly (£37 a day + £5 for lunch) and this year, my wife stayed in their respite unit for 9 days while I had my first respite break in over 5 years. Again, we funded this but as it's arranged by the LA, the cost was less than an equivalent stay in private facilities in the area.

I hope you are able to sort something out very soon and I wish you a peaceful Christmas.

Best wishes
Phil
Thanks for your reply, I will certainly pursue day care and was interested to learn that some carer organisation s can do assessments. Throughout this journey taking that first step over each hurdle is the most difficult, I never thought my wife (or me) would come to terms with having visits from a carer but we have become used to it quite quivklq and I am able to leave for the afternoon without a second look back and without feeling guilty.

Merry Christmas and thanks again for taking the trouble to reply.
 

witts1973

Registered User
Jun 20, 2018
738
Leamington Spa
Do you have a carers allowance?This year when I applied the lady asked if I received £400 to help with a carer or 500 for respite.I got £200 to Join a fitness club and £400 to help with a carer
Hi was that £400 to pay for more care so you as a carer can pay for a sitter now and again to pop out?
 

Sirena

Registered User
Feb 27, 2018
2,065
If you are self funding, you are right that Social Services will not help. My mother is self funding. I waited weeks for a social worker to do an assessment - in fact by the time she arrived I'd already organised daily care. The social worker's contribution was to say I'd provided much better care than they would, and that was the end of her involvement. So from my own experience I wouldn't bother with SS, it will be a frustrating exercise.

Being self funding is both a curse and a blessing - you don't get any support from SS, but you do get to choose what you get. Can you organise more help from your current care provider? The director of my mother's care agency was brilliant, she did the original assessment and then assessed my mother every six months. She knew all the support options which were available, so you should find additional help there.
 

Alex54

Registered User
Oct 15, 2018
192
Newtown, Wales
Hi @NORTHSIDE,

I can't offer any help or advice but my wife and I are currently going through the same situation. It is hard and often you can't see anyone forward.

The only thing I would say is to talk to the memory unit nurse/doctors. They have the experience and may be able to offer medication to improve things.