Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

lissieloo - sorry to hear about your DH's aunt. I think you need a community care assessment - which may be what the place she is in now will request. Go to the Alzheimers Society website and have a look at their PDF on this - it is very helpful.

Whataboutbob - enjoy your weekend. I will join you in your skip fantasy. I want to ditch the whole lot - feels like a millstone. It has made me very anti-'stuff'.

Oh dear, this isn't going well for anyone at the moment, guess it is the nature of the disease we are all victims of .

CMOT that must have been a shock with the scan, really sorry to hear that. Good your Dad has agreed to get the POAs sorted though. I guess it is a case of small steps at the moment.

Needsmoresleep, sorry you are with me in the sacked club. You end up feeling you can't win with this in any way with this.

PostBellum I am so sorry. It must be very daunting knowing it will need to be dealt with. I felt too daunted to deal with a single room . I think though that there will be a market for all the broken stuff and once you ask around a bit you'll find someone to just take it off your hands. Assumably the farm will be worth a bit. In which case you need to stand firm and not agree to sorting it all, people can be paid to some extent.

Lissieloo, welcome. Does your Aunt own the house and has she ever has Carers in , it sounds not ? Even if she owns the house, if she is having care at home and has under 23k in savings etc she will probably be entitled to some help with a Care Package. I suspect if she doesn't own the house they will want to try care at home as it is cheaper.

I think your PIL need to write down everything they have been doing ready for meeting on Monday and consider in their minds whether Carers coming in up to four times daily would work or whether she is beyond that and needs residential. If the latter they will need to be prepared to argue why that is.

They can say that they are withdrawing their care due to their physical health and imminent Carer Breakdown and if she is discharged home they will not be responsible for her. Sorry they are going through this, it's very hard.

I've just had a call from the CH to check something. It appears that my Mum is probably playing my Brother to a large extent eg telling him her legs have gone bad again, the staff don't know what they are doing and have made them like that.

Thank you all for making me feel welcome. I'm sorry so many of you are going through this. It's truly shit.

Whataboutbob, you dont sound horrible at all, I can totally understand where you're coming from. Have a good day tomorrow.

No other present rellies (MIL has another sister and a brother, but not seen 'em in years). Her house is a HA, she is ex-forces and has less that £14,000 in savings, so it's a case of convincing the SWs that she will be safer in residential care, not least because she has been found wandering along the main road in her undies before now. I have spoken the the British Legion, they have sent me an application form for some of their care homes, the home are keeping her in til Thursday and assessing her then, I am going to try make it to the meeting. MIL has officially withdrawn her care, I've had her on the phone in tears just now, about it. Ive also spoken to the Alzheimers Society and will be getting some leaflets from them, and Age UK are also prepared to advocate for PILs if they need it. I've been doing this all day, I can't imagine how exhausted the rest of you are.

'Nuther thought.

If she is a HA tenant you might speak to her housing manager. Essentially, and being a bit cynical, they wont want a tenant in inappropriate accommodation, plus in many parts of the country they have long wait lists so will be motivated to release her current flat.

They will know of other specialist HAs who are involved in longer term care. They will know the system and might well be able to steer your aunt through it.

I am fine. The various medical processes are coming to an end. There is the ongoing burden of an investment and property portfolio, which the POA rules suggest need to be managed actively. At least, though, it is not a farm, and, after reading some old Mumsnet Investment threads, I have decided on what I think will be an acceptable approach when various term deposits mature.

I guess, I am disappointed. I had thought as a result of my hard work and the fact she is settled and happy, our relationship was in a better place. However this appears not to be the case, and it seems that though on the surface she is nice to me, she is telling anyone who will listen that I am stealing from her. She believes the same of others, as her housing have an obligation to inform me each time she accuses cleaners, carers etc. I know it is the dementia. However I am being quite childish and want either her or my brother to tell me they appreciate what I have done. There will be another crisis at some point, and both will expect me to drop everything and start flogging up and down the motorway again. I am quite goal-orientated and had wanted to see it as a problem solved. I just need to get my head around the fact that this will go on for years. I am sole POA so have a statutory obligation, however I need to work out a way of meeting these commitments whilst meeting other, albeit non-statutory, commitments to my family and myself.

I understand the anger.

Dream of skips. I set myself a target of removing the equivalent of 12 bin liners a day. It still took about three months.

That's a good idea, thank you. DA accuses PILs of stealing from her too, MIL was distraught the first time, now its "no j, we had to pay the gas bill/tv/leccy" I completely get that you want a bit of acknowledgement. You deserve it.

Lissie it sounds like you have done really well today and have set up a lot in a short space of time.

Needsmoresleep my Mum was nice to me when I went in apart from harping on that I must have stolen the remote. I think that's why I was so shocked about her saying tote SW the day before that I was evil and plotting against you.

I know your Mum won't say well done but your Brother flaming well should. Here are some from me.

Mine has said to DH that he will apologise if he loses the Case Conference. That's fine except as usual the only winner here is the Dementia which claims more victims as it ripples out like when you throw a stone in a puddle.

Illuminating conversation with CH who have heard her talking to my Brother and she said in fairness he sounds really very convincing. Told him her legs have got bad as the staff there don't know what they are doing. In reality her legs are better than ever.

How is everyone doing?

My dad finally got his appointment to just see the urologist in clinic. September. 6 months after he was told he needed the op, and it would be another 3 months before the actual operation, and last week his catheter blocked 6 times. So he's decided to go private, and hopefully it'll be done in the next couple of weeks as the GP faxed a letter yesterday.

My brother (having told dad there was no way they'd be visiting for months) deigned to drop in to them at the weekend (so obv they were spending the whole weekend with sils parents who live nearby) and complained that I hadn't told him enough detail

Morning all. I am truly sorry, but I'm going to have to rant again.

So, Dad is in hospital. The room he is in is like a raging inferno. South facing with no shade. They put a tiny 20 cm fan in his room - which makes no difference at all - you literally cannot feel anything moving from it. So we bought in a big fan from home, named it etc. It was taken from his room yesterday, so Mum went ballistic and eventually a nursing assistant found it & proceeded to give Mum the 3rd degree about whether or not it had been electrically tested. I thought Mum may murder her - it wasn't pretty.

Dad can't swallow properly and is a high choke risk & a high pneumonia risk - so all his notes & charts say that his fluid must be thickened and he can only eat a "red tray" - which means pappy mush, nothing that needs too much chewing. He is regularly given un thickened fluids and the wrong kind of food.

Dad is supposed to be on a drip, as he is not drinking enough to keep himself hydrated and a good flow through his kidneys - as the consultant is particularly concerned about renal failure. We keep finding him without his drip & yesterday it took 5 hours for them to reconnect his drip.

Dad is faecally incontinent & they keep forgetting to put a pad underneath him, so when he does a poo it is all over his bedding & requires a full bed change.

The nurses keep offering him choices, even though it clearly says he can only give a yes or no answer. So, they pop in & without making eye contact with him, shout from the door "MrPBB tea or coffee?". Dad can't say tea or coffee, so without checking or slowing down to ask him properly, they conclude he doesn't want anything - when actually he would really like a cup of tea.

They keep leaving his un thickened fluid out of his reach - so he can't actually have a drink at all.

I know that nurses are underpaid, I know that they are short staffed but in the ward my Dad is in there are lots of elderly people getting a very poor standard of care. Visiting hours are supposed to be between 2&4pm and 6&8pm, but we ignore this, because otherwise Dad would starve, as none of the nurses will sit with him & feed him. Other elderly people have no visitors and they lie for hours with only the most cursory of checks. You can often hear them moaning or calling out "help me", which I know may be a sign of dementia, but it is really awful to hear and think that there is no one there to hold their hand or comfort them.

Sorry, that was a painfully long rant but it pains me to think Dad (and probably all of the other patients in there) paid tax and NI all his life to receive this kind of care. and

Postbellum, that is unexcusably terrible levels of care. I'd go to the PALS office and make a formal complaint today, and additionally ask to see their policy relating to the care of people with dementia so that you can highlight areas that aren't being followed.

I'm glad it isn't just me who thinks it is crap. All the hospital policies are on their internet site, but I can't see any policy that relates to care of those with dementia. I can't see any kind of ward management policy either, because I can't believe that they wouldn't be found wanting in so many areas.

The consultant has already bollocked the nurses once about not attending to Dad properly - but only because we have raised concerns with him.

I would like to see if we could move Dad to a private nursing home - but I'm not sure how much nursing we'd get there either. Does anyone have any experience of a nursing home, as opposed to a care or residential home?

Awful.

Is private nursing care an option at some point? It costs an arm and a leg, about the same as a luxury hotel, but might be justifiable for a month or so. When my mum was in convalescent care however we met people whose mums and dads had had poor experience within the NHS, especially around basic care, hydration, joined up thinking etc. This lack of care meant that peoples basic health, as opposed to their medical condition, had dropped catastrophically leaving them less able to return home.

You would then get a calm atmosphere, attentive nursing care, good food and escorts to medical appointments at the hospital. Plus a bit of time to think.

I'm not sure that a nursing home would be able to provide IV fluids and the sort of intensive nursing that your dad should be getting. Whether a private hospital would be an option for a couple of weeks I don't know.

But the main thing is to complain loud and long to the hospital he's in right now. Get things in writing, and then they must be acknowledged and investigated.

Hi PBB I work in a hospital, as a dietitian. I know that fluid thickening often gets forgotten. Poor communication is below par but alas there again it doesn't really surprise. I would advise keeping precise records of incidents you are unhappy about, with time, date and if possible grade/name of staff involved. Intravenous fluids do not necessarily run over 24 hours/ back to back. If he is on a catheter look at the colour of his urine in the bag if it is dark that 's a sign he's not getting enough water. (a caveat being that some antibiotics cause colour changes, but usually urine goes red). Good luck, I find it never hurts to let staff know that as a family you are being vigilant and are keeping an eye on things, but without being so uptight/ assertive that you become labelled as "difficult". Sorry if that sounds outrageous and I know the stress you are under means it's not easy to stay calm and always interact in a an easy, courteous manner.

PostBellum that is awful, I'm really sorry. I think I would look around at a private hospital if it is a possibility. But before that I'd go in with a written list about everything you have witnessed and talk to whoever is in charge.

I'd ask what the hospital policy is on care for patients with Dementia. I know some have people who will sit with them but suspect that is very few and far between. It's a very emotional thing to be talking about and I think Bob has it spot on about trying to stay calm etc.

Easy to say and hard to do. If you do find yourself losing control a bit I've found showing how upset you are rather than getting angry and saying sorry a lot helps as it takes people off the defensive .

Thank you all so much.

Mum said that there was a much more dynamic sister on the ward yesterday & that the standard of care was better. The nurses were moving faster, with less chatting in the corridors and were being much more attentive. That coupled with Dad seeming a bit brighter seemed positive news, so as I wasn't there, I didn't badger Mum about making a more formal complaint. However, I have written down the incidents over the weekend and on Monday - just in case we do need to call on them at some point.

Anyway, enough of me ranting & hogging the thread.

CMOT, when is your Dad's private op scheduled for?

Wynken, how is your Mum (and brother) doing?

Needsmore - is your brother geographically closer to your Mum? Do you think it will actually be possible for your Mum to stay where she is long term?

Have only managed to get a few days up the thread - so apologies for not enquiring about other parents.

That sounds more positive PostBellum.

No date for dad yet, but he has sorted out about carers for when he's in which is great as I have no leave left to take this year.

Mum was more confused than usual yesterday, but cheery as a friend had come to visit for an hour. She'd also decided to bake. Which dad said was interesting

I have to laugh, my brother deigned to phone dad today (thats two contacts in a week!) all righteous about why was there a delay in mums diagnosis, blah blah. Am hoping he keeps up contact even if he is not doing anything useful. Or maybe he'd like to go and shop for new clothes for mum

Had to go over what was wrong with mum again with dad though, and about how aricept won't put things right. I do hope its just the stress making him not take things in properly.

Hmmm brothers.

Mine is also in London. My parents decided to move away on retirement. I am fine. I just hit a bit of post crisis gloom as I start to consider what is ahead. My mum should be fine where she is for quite a while. However

1. The dementia is here to stay. Which means there will be days when she is very difficult. She is now saying she has forgotten what she said. I get the feeling that she remembers something as she now seems quite worried I will abandon her and is being very concilliatory.
2. It is a 300 mile round trip. She is very clear that she does not want to return to London even when her care needs increase.
3. My brother is unlikely to support me in going against her wishes. Nor is he likely to offer any hands on help. The POA provides lots of obligations. In the panic to get something in place I did not think to take legal advice.

Essentially I feel that I have signed up for something that is unlimited and, given the only certainty is that thete will be another crisis, really quite onerous. There is potentially 15 more years. (Her parents lived well imto their 90s and there is no reason why she should not do the same.) My mother in her more reasonable mood today claims to understand where I am coming from, but probably no longer has the capacity to do anything about it. Or rather cannot be relied on to be thinking straight at the point she was meeting a lawyer or having her capacity accessed.

I need to figure something out which will allow her to retain a level of independence in line with her capacity but also allow me freedoms as well. The kids are coming up to University age and the idea of deferring any ideas we might have of travelling, working/living abroad etc for a significant period is depressing. As others will know there always ongoing day to day issues when supporting someone with memory problems. I feel like a PA as I pay bills, sort out hospital appointments and book taxis so she can attend social events. And obviously at any point there might be a new crisis and I will need to drop everything and start bombing up and down the motorway again.

The requirement to manage assets actively is also a pain as is the scope for potential legal claims against me should I fail to make the right decisions. But at least she does not own a farm.

I feel a wuss as this is nothing like the sad and challenging situations others are facing. However acknowledging the issue may help me find an acceptable solution. Also I suspect I wont be the first who emerges from the years of putting the children first to find myself then responsible for a parent. When is it my turn to have a life!

Postbellum I'm glad your Dad is a bit brighter and thank goodness someone has been running the ward more as it should be. Definitely worth keeping a log still though. Fingers crossed for a big improvement in your Dad soon.

CMOT I guess at least your Brother is ringing. Do you think it would work if you said to him now he is showing an interest , please could he do such and such as you don't have time. Or will he just tell you to Get lost? The dementia diagnosis is a tough one and I guess under stress it's easier to forget it than deal with it. Hopefully that's what has happened with your Dad .

Needsmoresleep I'm glad your Mum is being nicer. You're definitely nitbth first to find yourself in this position with the children leaving. A friend of mine was listening to my tail of woe and said she had a moment of realisation she's likely to be on that position in 10 years time.

You're amazingly good at problem solving and I'm sure you will find a way to sort it so your Mum gets the care she needs and you and DH get to live the life you want to lead. Someone needs to sort hospital appointments and book taxis but it doesn't have to be you. Think of yourself as the office manager, you need an assistant. Your Mother has chosen to stay, therefore you need to adapt to the ongoing situation and make plans accordingly .

It is totally unrealistic for anyone to put their life on hold for the next 15 years. Besides, what would happen if you became ill? Look at it as protecting your Mother against any ill health you may have in the future.

It's all quiet down here except I've tried to speak to Mum on the mobile and she doesn't sound with it. Hopefully it's the mobile. I'm not going in this week as CH said I need a break. DD finally broke up yesterday and we are all shattered.

I have prepared my statement for the case meetng with the help of a friend plus emailed my old Boss for a reference and have to send him a CV. Have to write it first which is stressing me out a bit but I will. Then I am applying for a job I've seen.

DH needs to start applying too as he won't be able to find anything to plug the gap in reduction of hours so will need a new job. Which will leave us both very little time to step in if it is decided that Mum goes home with live in Carers and there is an emergency. SW is aware of this so it will probably be put to the panel as part of the decision making process.

Do feel slightly in limbo until next week. Brother has said to DH he will apologise if he loses. Gets my back up a bit as it's not about winning or losing, rather what is in Mum's best interests. I have been sleeping which is something.

Just found thread and marking place. DP and I are in this situation helping to care for his mum with vascular dementia.

finally have some good news, the care home we liked has agreed to assess fil tomorrow and have decided that the best way of doing it is if dp and I take him to the home so that he is away from the mental health unit and mil which will hopefully mean he stays calm.
they have agreed that the room with the en-suite is perfect for him and the care manager is 99% certain that funding will be awarded, if all goes well tomorrow she will take it to panel on Tuesday and we can get him moved in asap.

dp lost his temper with sil and told her to either step up and help or back off and stop making stupid suggestions when she had no idea what's really going on since she makes no effort to visit mil or fil apart from the odd drop in when it benefits her, her response was " well I'm busy, I do have a life you know"......... yeah because we don't!!!!!

we are both tired and worried about how we will cope with settling fil into the home and giving dsc a good summer holiday, we pick them up sat for the whole of the holidays, but we will manage its just frustrating to hear sil moan about how busy she is when we are the ones doing all the work.

Three posts and three of us facing problems with siblings who seem to think it is OK to promote solutions which rely on our time and efforts. Its the complete lack of acknowledgement that gets me.

If indeed it is a common problem I wonder what it is about. I assume there is guilt and perhaps in some cases a sub-conscious concern about eroding inheritance, or more likely some weird resurfacing of deep-rooted sibling rivalry. It is so unfair. Well done your DP. In the middle of our crisis DH considered whether to speak directly to DB about the impact his criticism and his focus on my duties as POA were having on me, but we decided to defer it. Now things are calmer it needs to be done.

Glad though that there is a solution in sight. I really hope it works. It is strange how you can see a particular setting working for a parent, and the relief it brings. Doubly galling then if siblings don't get it or support. The CH should be able to help with the settling process. Don't be surprised if your dad blames you or they recommend that you stay away for a while. There is a great big silver lining called sleep. The dementia silver lining is that things, even homes, can get forgotten quickly if a parent is settled and happy.

What strikes me reading all our posts is just what a huge amount of work it is for everyone. You know when you have a baby that there is work ahead but in most cases, it is a choice you make. However, no one tells you that an aging parent/s may also be almost equally as much work. Whilst you do still have a choice, it requires a degree of callous disregard to just leave them to moulder.

Needmore, I understand exactly where you are coming from with the unlimited thing. I look at the demise of Dad as only the start of a long onerous journey, which will then involve looking after Mum. I feel like I have given up the last nearly 14 years of my life to my children & now I foresee the next 10 years of my life, when I thought things would start to get easier, be taken up with the burden of my elderly mother - given I doubt Dad will do another year. If I think about it for more than a few seconds, I feel really depressed. ex-H bailed out 10 years ago, so I've brought up my two (one of whom is autistic spectrum) all alone and the whole thing just feels like the weariest load.

Neither of my parents did the care of the elderly for their own parents. Both their fathers died of heart attacks relatively young & my Dad put his own mother in nursing homes (as Mum categorically refused to look after her) & Mum lived in a different country to her own mother, so just visited her from time to time in her long final illness.

FFS, brother has just called me to say that the crumbling pile was broken into last night!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Nothing taken, as far as Mum can tell.

Apparently they just carefully removed window panes from the rotten wood, climbed in riffled through the desk in that room but didn't go any further.

To give him credit, my brother is there and has spent the day dealing with the police & has found a board to nail to the window, until such point as the rotten window can be remade.

Blooooooooooooody hell!!!! The millstone just gets heavier.

Its sort of like the latest installment of a soap opera. Though not one that would ever be commissioned for mainstream TV.

Poor you.