Help - don't really know what to do at all

[HesterShaw]

This is the first time I've posted about my dad. He's just 70 and has been deteriorating rapidly in the last 12 months. It's some kind of dementia, but not Alzheimer's. They thought at first it was a really bad depression as he has a history of depression. There are so many problems I don't know where to start. He and my mum live a four hour drive away from me and they have no family near. Dad's brother and sister and their partners live three hours in the other direction. My sister lives in London so that's another three hour journey from them. My brother is more or less useless. My DM is the primary carer - she has managed to source a reasonable amount of help e.g. a carer in the mornings to get him up and showered and dressed. Every Wednesday evening someone comes in for a few hours so she can go to her class and she has also just managed to put him in somewhere for Thursdays and Saturdays so that she can get some time for herself.

Though I feel very sorry for her because it's so hard, I know that things could be worse with regard to the amount of care. They are able to fund things and money isn't a big problem. But she is just so cold. Their marriage has always bee quite extraordinarily dysfunctional and they have barely communicated properly for decades. Our whole lives, we have hardly seen one spontaneous gesture of affection from her to him, but an awful lot of sneering, eye rolling and tutting. He has always been awfully absent minded anyway, which was why it took such a long time for us to realise there was a problem (Me and DSis). DM knew there was a problem but all she did was nag him about it so he was very frightened of seeking help, in case it meant he did indeed have dementia and he would have to rely on her for care and kindness. His decline in the last year has been incredibly fast - he has been in and out of hospital, because it isn't just dementia (there are problems such as amyloid protein build up on the brain) - he has the shakes, he can't follow any conversation, but the most stressful thing is the incontinence. It's like he has forgotten that you need to actually sit on the toilet to poo. DM can't hide her frustration and revulsion. I don't exactly blame her for this, as I am squeamish myself.

I just don't know what to do. She won't accept any constructive advice e.g. I said that I had heard that patterned carpets weren't a good idea for someone with dementia (their house is a riot) of pattern, or that I had heard that painting toilet doors in bold primary colours helps them remember where to go. I said that she would really benefit from meeting other people with similar problems, so that she is not constantly upsetting me and DSis - after all this is our very-loved dear dad.

I don't know what I'm asking really, just needed to vent.

[YDdraigGoch]

I think she would benefit from meeting other people, but for her own benefit, not to prevent her from constantly upsetting you and and your DSis. I realise you are talking about a very loved dear dad, but really, that comment comes across as really selfish and self centred.

[HesterShaw]

Thank you for your quick response. Well, obviously I didn't intend it to sound selfish and self centred, and quite clearly I want my mum to find some help and support. To be honest, if people are going to make comments like that, then I would really rather they didn't make comments at all, because after the weekend I have just spent, I know I am neither of those things.

I wrote this thread after thinking about it for a long time. If I wanted a flaming I would have posted in AIBU.

[HesterShaw]

And obviously I didn't SAY to her that the reason she should meet others was so she would stop upsetting me and my sister. I am not that horrible.

I shouldn't have posted. The whole thing is awful enough without being called selfish and self centred.

[YDdraigGoch]

Sorry OP - that's the trouble when you write things down, some of the meaning that you get in a verbal conversation is lost, and people interpret things the wrong way.

I do think your mum would benefit from spending time with other carers - there are lots of organisations that can help with this, but usually run on a local basis, rather than national. Could you have a word with your mum's GP surgery to ask them for a list of contacts that could help? And if it's possible, for you or one of your siblings to go with her for the first meeting?

[HesterShaw]

Thanks for coming back.

I will suggest that. I wanted to go back with her to theirs so could attend the meeting she has with their financial person tomorrow (which she asked me to last week)> I said yes of course, but I need to be back for a meeting here by Wednesday so she then said she wouldn't hear of me driving up and down four hours in the fog and so on. She changes her mind all the time :) But I will certainly suggest the GP surgery as a starter.

She is one of those people who says "I''m alright, I'm alright, I'm alright" constantly and gets cross with offers of help, at the same time as telling someone else how x and y are not giving her any help.

Like I said, just venting really.

[PostBellumBugsy]

Hester, lots of us on another thread about elderly parents with dementia - come on over and join the sad but very supportive thread.

In all honesty, carpets and toilet door colours will not make a great deal of difference. If someone suggested that to my DM, she'd probably be as annoyed as your mother was. What my mother really needs is practical help. Someone to relieve the relentless burden, to clean up the wee and the poo - because my Dad has also either forgotten or just doesn't remember in time, where he should go to the loo. She needs help with someone else being in the house, so that she can go to the shops, escape from the house for a bit, go and take a rest herself.

I get very frustrated as my parents chose to stay in a very unsuitable house in the middle of nowhere, when all their friends downsized. My mum is very difficult at the best of times, so now she is a nightmare.

I do a massive schlep every weekend to go and help. Sometimes just being there, washing up, doing a bit of tidying and just looking after Dad while she sleeps is all I do. I've learnt to keep my suggestions to myself and just help when asked.

I moan and rant on the other thread and that is how I keep sane. I thank the universe regularly that I am not living with him 24 hours a day - even though I love him and think he is the best dad ever. Even though she drives me mad, I feel desperately sorry for my Mum. To watch the man you have spent the last 50 years of your life with, end his life this way is very cruel indeed.

[HesterShaw]

Thank you, will come on over x


I get very frustrated as my parents chose to stay in a very unsuitable house in the middle of nowhere, when all their friends downsized. My mum is very difficult at the best of times, so now she is a nightmare.


I could have written that bit :)

[CMOTDibbler]

My dad gets very angry at mum for things she does because of her dementia, and it can sound awful. But hes angry at the dementia. He's angry that theres nothing he can do to stop the inevitable decline. And he's frustrated as hell when he cooks for her and she spits it out, or she forgets to go to the loo, or shes incredibly rude to people. He denied there was anything wrong for a long time, because he was frightened of it.

He's no saint, but he's coped with way more than I ever thought he could, and living with mum, much as I love her, would drive me insane and I'm not elderly and frail.

Theres lots of things we'd want them to do, but its not going to happen and practical things like giving them a few hours off, going to take them out for a nice meal, or just buying things like old dvds that will give the carer some peace is what works best imo

[HesterShaw]

That's the problem - she has never loved him. And she's starting to hate him now.

[PostBellumBugsy]

If she is starting to hate him and money isn't an issue, then maybe the kindest option for them both would be if he were in a care home that can cope with elderly people with Alzheimer's?

[HesterShaw]

It's not an issue for the current care package. A £30,000 pa would be an issue. But he's only just 70! It's not even old. It's "only" the toileting which is a care home-like issue. But she won't see the incontinence nurse as she thinks they won't be able to do anything.

Oh I don't know :(

[CMOTDibbler]

Alas, she is probably right on the incontinence nurse front. Dementia related toileting issues is about much more than not knowing when to go, and pads can cause their own problems.

[HesterShaw]

The peeing bit is fine. It's the other that's the problem.

So what do people do? All the medication he is on seems to have played havoc with his system, but they can't stay in all the time. What do other people do?

[HesterShaw]

"Stay in" as in never get out of the house.

[PostBellumBugsy]

My parents barely go out at all. My Mum goes out when the carers are there to do some shopping or just get away from the house.

Dad has fairly regular bowel movements, so Mum can usually time an outing so that it is after he has been but she always checks that wherever she is going has a disabled toilet with room for both of them to go into.

If he does do a poo on the odd occasion that they are out, then the nappy pants he wears will have caught it and Mum has to take him to the loo to change the nappy pants & clean him up.

The incontinence nurse can't really do anything about it, if it is dementia related.

[HesterShaw]

People keep saying the incontinence pants bring their own (physical) problems. Can anyone explain how? How is it different to a little child wearing nappies?

Thanks for replying x

[CMOTDibbler]

Well, in my experience, its not so much physical problems (though you can get issues around skin breakdown and infection).

Its more that you may not notice poo so quickly, and then the person wearing the pad may get their hands in there (as it feels different), and then smear.

The best thing is to try and spot any warning signs of imminent poo, like a particular facial expression or pacing, and then whip them to the loo pronto.

If a pad is necessary, then a long vest, firmly tucked into trousers with a belt can prevent pad fiddling

[PostBellumBugsy]

Mum reckons it takes her 20 mins to half an hour to clean up a poo that comes out in the nappy pants. It isn't like a baby where you can just lie them down on their backs and pull their legs up and wipe clean their smooth skin. This is an older person who is a bit hairy and craggy and you'll be cleaning them standing up and they may not be cooperative.

She does everything she possibly can to avoid this and has become an expert in recognising the signs of a poo coming and consequently scoots Dad off to the loo.

This shows you what life boils down to & makes it easier to understand why suggestions (however well intended) about coloured doors can be met with a less than positive response.

[HesterShaw]

Please don't judge me for the coloured doors comment. It was a small thing. This is all new to us and iI'm trying to get my head round it. They are 300 miles from me. At the moment I'm trying to look into the future and I know you'll agree that you can't. I'm running my own business and having ivf soon. My fears for my parents and their misery and their difficulties are compounded by the fear of early dementia being hereditary and the knowledge that we almost certainly won't have any children of our own to ease a similar burden. So please stop the narky comments because I just can't handle them at the moment :(

[PostBellumBugsy]

I'm honestly not judging - I've made very similar comments myself. I'm just further along the learning curve than you.

[pudcat]

When I looked after my Mum at home, the nappy pants did not contain poo well especially if loose. Mum did not recognise the need to go until too late and I had to get her into her wheelchair and then to the loo. Needless to say we had many accidents, and many floors were washed daily. She was a big lady (now lost a lot of weight) and not a lot of room in my loo. I used to end in tears most days. It is very difficult to clean an adult who is almost immobile. In fact it is a bloody nightmare. My Mum started refusing food and drink as she thought she would not have to go, but it only made it worse. I really do admire the carers in her NH. They are having to do this for lots of people every day.

[GladbagsGold]

Hester, my nanna had dementia and I recognise lots of what you are saying. Until she had it I was unaware of exactly what a horrible illness it is.

People still tell me things like their next door neighbour's aunt's postman had dementia and could remember things from years ago but not from today. Like that's ALL it is, some ditzy thing that sweet old folks get. Aw bless.

And you want to shout at them that actually it makes you forget the simplest of words so you can't decide if you want a drink or not, because you can't remember what a drink is. And you soil yourself. And you say you want to go home, but you are at home.

I really really feel for you and your dad and your sister, and your mum. It is incredibly hard being a carer, and the lack of love is very sad. There is nothing helpful I can suggest just bucketfuls of empathy.

[cranberryorange]

Hester, has your Dad received a full assessment of needs from the social services where you all sit down and discuss his needs?

There are lots of different care packages that can be accessed if your Mum is open to the idea of finding out whats on offer.

A social worker from the adult care department at your local office could be very helpful to you and your Mum and unless they have a huge income then a lot of the cost can be met by either the NHS for medical services ie continence and care needs by social services with a top up payment from your Mums purse.

I can only speak about whats on offer in our area but i'm guessing it must be similar up and down the country.

[HesterShaw]

From what I can gather, he has been having consultations with various people many times over the course of 12 months (I say "from what I can gather" because my mum doesn't tell the truth all the time - she puts her own spin on it to make things/people sound as bad as possible. Don't ask me why). At one point he was under three consultants, because no one could decide what was wrong with him. The psychiatrist was initially certain that it was a severe depression, and will still not countenance any kind of reduction in the anti-depressants/anti-psychotics he is on (even lithium ffs). The neuro person is the one who thinks the problem is all down to the amyloid on the brain, so he is taking medication for that too. And the Alzheimer's consultant says he knows it is dementia. Both of the first two are filling him with their drugs, and the third one thinks it is too late for him to be put onto any kind of anti-dementia drugs - he says that would only have slowed the course of the illness if he had gone to see someone much earlier. All three of these men are in different hospitals in different PCTs. None of them are communicating effectively with the others.

My mum says that because there is no 100% diagnosis this means she cannot access all the help there may be available. Getting to the bottom of any facts is like trying to peer through mud, or wade through treacle. She has help with him every morning and every Wednesday evening, she is putting him in respite for two days a week from this week, and she also has a week booked in November. I don't know how that "compares" to other people's situations. I know that she does contribute financially to this as it is means tested, but she doesn't pay 100%.

Part of my own problem with it all I think, is that because I haven't been able to have children myself, I remained my dad's "child" for longer than I would have if I had had my own. It's the little things isn't it - remembering when he came to help when I was burgled, when he tiled my kitchen for me, when he helped me when I was buying my car. And the whole IVF/lack of children is also making me resentful despite my very best intentions, because my sister who is lucky enough to have two babies, doesn't "do" as much as me, because obviously she's looking after them. But it wasn't my choice not to have my own children. So my feelings about it are all tangled up with that as well, but I know it's something I need to just get over and deal with. FFS I am 38 years old .

As I said at the start, just ranting really. I can't say this stuff out loud to someone as it does sound self centred and selfish, YDdraigGoch was partly right there.

[cranberryorange]

You are being far to hard on yourself, its a real minefield trying to deal with things especially if your Mum isnt on the same page as you.

The diagnosis shouldnt make any difference to him accessing a better package of help. It should all be based on his needs and those of your Mum.

We have just dealt with a very similar situation with my nan who is now finally home on end of life care. It has been one huge fight after another sadly.

Thankfully DD works within SS so she was able to signpost us to everything available and we then pushed for everything we needed and thankfully we havefinally got it.

Social Services have been fantastic and really co ordinated everything from district nurses to night sitters to carers going in 4 times a day so they really could be the ones to help you .

You need to talk to your Mum and ask her what she needs to make her life easier and then ask if she would mind if you made some calls so that you can help her.

If you can sort out the practical side of things and know that all of his physical needs are being attended to then you can concentrate on getting pregnant and just visiting your Dad and loving him without all the stress and worries.

Lithium is a very heavy drug with lots of side effects so i would be questioning the meds asap. Have you contacted the Alzheimers society helpline? It might be worth a try.

www.alzheimers.org.uk/