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

Poor CMOT. You must be exhausted. It is such a tricky situation. Is your dad now prepared to consider alternatives for your mum. Somewhere whetr she is safe and looked after and whrte he can visit.

Scarlett. You cant carry on being a 24 hour cater without a break. It is inhuman. Could you phone up SS or speak to the GP and warn them of imminent carer breakdown if they dont organise respite. Or tell ypur sisters that one of them will need to take over for a week so you can have a break. Then spend the time thinking about options and in particular what will work for you.

I hope the weekend goes well for everyone.

Had a tough day yesterday, both dp and mil are flitting between relief that a decision has been made and fil is going into a home where he can be cared for in a safe environment and guilt because we all wish he was coming home.

Mil had a run in with a friend yesterday who told her that she thought it was the wrong decision and that in her opinion mil just wanted rid of him so that she could do her own thing

it's hard to make people understand just how much the dementia is taking over because to anyone else he looks like the same man and still has lots of lucid days when he knows what's going on but then he has days where he can't even remember to walk downstairs. People outside the family see him as just a bit forgetful when in fact he has turned into a stroppy child who hits/pushes and holds mil against the wall by her throat if he doesn't get his own way.

We visited him last night in the hospital, he had completely forgotten what was decided on Wednesday and kept talking about when he goes home, dp explained again that he wasn't going home because of the incident a couple of weeks ago when he threatened mil with a knife and he just kept saying he was sorry and it would never happen again, he said it was the only time he had ever done it and we had to explain again that it wasn't the first time and we understood it was the dementia and not him but we couldn't risk it happening again.

He then declared he was going on hunger strike because if he couldn't go home he wanted to kill himself so dp offered to drink the McDonalds smoothie we had taken him and he promptly snatched it back and drank it so I don't think we need to worry!

I think the stress must have finally got to us though because on the way home we were in hysterics making up scenarios where fil forgot he was on hunger strike and demanded food, it must have helped though because for the first time in months we both slept all night.

scarlet we had fil stay with us for a week and I was exhausted so I can't imagine what it's like to be there 24/7. Both dp and I agreed we couldn't care for him permanently which is how he ended up in a mental health unit and the guilt has been unbearable at times but we had to do what we felt was right for us all not just fil.

Smiling. If you look down a bit further you wiil find CMOTs black humour thread. Being able to see the funny side when things were grim was all iimportant.

I hope your mil gets a chance to rest and recover. And that your fil gets to settle. No memory can be a blessing. If he is reasonably content then he will, perhaps sadly, start to forget his old life and home. And those around him have the space to both grieve and support.

Smiling: that friend has no right to judge and should keep her trap oops mouth shut. I really believe that unless you have been in this kind of situation you should not pass judgment (unless of course there is outright abuse going on). Someone can appear as a lovably eccentric elder when they are out, maybe with their family, but what outsiders can't see is all the work, stress, exhaustion going on behind the scenes. Maybe one day that "friend" will understand. I remember a colleague (in her 20s) coming into the office once and saying " all those people putting their elderly relatives into a home! They should be cut out of the will" (I work in a hospital). That was around the time I was at my most stressed about my Dad and his Alzheimers, I knew then that a nursing home is a very real possibility at some stage. I just wished she knew what she was talking about.

I'd have been laughing hysterically too Smiling. You have to do that or cry sometimes.

No one should ever judge about care arrangements. Even if they've been a carer themselves as everyone with dementia is different, as is every carer.

To be honest I feel like I've reached the end if my tether. I just want my life back. Does anyone have experience of the process of getting a parent assessed re their mental and physical health so they can go to a good and appropriate care home?

The other thing I would like to know if anyone has any experience/ success with, is challenging care home fees?

4 years ago my mum had a severe stroke. It's left her paralysed down one side of her body, unable to speak or swallow ( and is fed by a peg). She has now been in a nursing home for 4 years. It was initially paid for by the nhs as she was so incapacitated but a year ago she was reassessed as ' stable ' ( even though her condition is the same and so now we are having to pay the £3 k a month ourselves. I've read about these fees being challenged but don't know how to do it or how successful this is. Any thoughts truly gratefully received....

Smiling, I can totally empathise with your situation. Your poor MIL. ABsolutely no one can understand what it's like dealing with this from the outside and how stressful and frustrating it is for everyone. Eventually you have to try and do what's best for everyone and try and preserve your own sanity. The guilt is v hard to deal with tho...

Scarlet, you need to ask for a social services assessment for your dad. I think you can self refer, but your dads gp can certainly help.
If theres a carers centre locally, they may be able to help you through the whole process and support you generally.

Theres information on Continuing health funding here, and a link to the assessment form which you can download and score your mum. Theres also information on challenging them on the Saga website

Scarlet for what it s worth it doesn't t sound right that someone who has had a devastating stroke and is PEG fed should be paying for their fees. It definitely should be challenged. I have a friend who is a discharge co ordinator nurse and she deals with this kind of situation, I will ask her opinion.

ScaRlet you're right, you can't go on. My advice is to ring SS tomorrow and say your Dad has a diagnosis of Dementia, he is a vulnerable adult and you are withdrawing your care as you are extremely stressed. That an incident that happened when you were having a bath has made you realise you are unable to guarantee his safety and if alternative arrangements aren't made very quickly you will suffer Carer Breakdown.

Then go to your GP and try to cry in front of them. And ring your local Alzheimer's society branch f you have one and ask for advice. I personally feel you should keep your siblings out of it at this stage unless you are certain they will back you. But I am a bit concerned to be honest that given they are happy to let you take on the overwhelming majority of care to protect your parents assets that they have too much vested interest to be objective.

The Alzheimer's society may also be able to Point you to someone locally who can help challenge the continuing care aspect for your Mum but deal with one thing at a time. I get no one wants to lose the house but often that is inevitable and not worth risking your physical and mental health for . Sorry if that all sounds blunt.

Smiling , I'm sorry for what your going through. I would have laughed about the hunger strike and smoothie too, I agree humour is very important - though those of you dealing with siblings might want to learn from me - do it over phone where tone can be judged, not in email or you get accused of being irrational.

I'm not letting Brother make all care arrangements as now I know Mum doesn't have capacity I don't think Live in is in her best interests and want her to go to the flat. It's in the hands of the SW now as we don't have health POA so she will need to formally assess the we need a Best Interests meeting I think? If decided the flat is best they have said they will work with me and apply for a Deprivation of Liberty Order. I'm totally open to anything the professionals who have met her suggest as an alternative. Unfortunately as Brother hasn't seen her for 4 years plus and is trying to assess a woman with out capacity by phone I don't feel he is able to make a rational decision in her Best interest. He thinks I am tired and irrational so over to the professionals .

She has had a formal assessment by the stage at the place with the flat and the Deputy Manager at repute place happy to voice her concerns about hydration and Meds plus SW can speak to current care agency who are concerned about taking Meds and hygiene, so combined with Psychiatrist support the SW has a lot of info to draw upon.

Thanks all, your kindness made me cry. I let him sleep in this morning to get a bit of peace. I have read through a lot of this thread now and although its hard to read. I'm glad I'm not alone in this. I could espcially relate to people saying at times they feel resentful and selfish and just want their life back, I feel the same. Some days I wake up and think I can't stand one more day of this.

I really appreciate all the advice I have been given. I think I need to prioritise my own mental health and ask for more support. (Instead of self medicating with wine and fags ..)

Hope you are all enjoying the lovely weather. .

Thanks All for your kind messages, have spent a few hours reading the threads and God, this is hard isn't it? I will definitely get that book you recommended, Love the title! I struggle with feeling selfish, having my life put on hold and battles with my family members, 2 older sisters who want to tell me what to do.

A few weeks ago I had an awful time, the house got burgled as my dad had left the back door unlocked ( and I hadn't checked it was locked). So a few days later I was out till 8, locked the back door and came back to find my neighbour ( a horrible woman, she basically wants my dad put in a home and has said so on many occasions)rushing out of her house, very angry to tell me that my dad had been found wandering in the middle of the road ( he had wanted to go outside and so had gone out the front door and got lost and strangers had found him and brought him back). So, that weekend, my older sister cam back and this neighbour wanted to have 'words' with her, had a real go at me and then my sister came back, having had her ear bent by this woman and was furious with me and basicaaly said that I should be home all the time. I just can't, I'll go mad if i do....!We had an awful row which almost came do blows and I said how trapped I felt and how it was driving me mad and we agreed that we needed to get a reassessment of my dad. WE've been in contact with SS since but they never get back to me. They've written down my mob number wrong TWICE now and I am sick of having to chase them up.I don't think I can do this much longer, Im only doing it cos I got made redundant, gave up my rented flat in London to go travelling, split up with my partner and came back home as I had nowhere else to go.

I never had a good relationship with my daD, He was angry, critical and bad tempered with us when we were younger and I have v little real love for him. I used to come home literally only twice a year before this happened as I couldn't bear to be around him.I know he is now vulnerable but I resent every minute of this.

Sorry for the rant,people think I'm such a good person for doing this but I'm really not....Some days I wish he would just die but apart from his dementia and his failing eyesight he's pretty healthy really.

I really feel for you and everything you have gone through, thanks again for reaching out to me, I hate it when people asdk me how my dad is, what can I say, every day is like Groundhog day! This thread though, and people's replies have motivated me to take some more concrete action, I think I owe it to myself to get my life back ( feels so selfish just saying that, ironic really as I've spent most of my life in caring professions and am usually a v empathetic person...)

Hope you are enjoying the sunshine...

Best wishes ( and thank God for MN!!)

Rachael

Sorry if this is coming across as a self indulgent rant, I think I have lost all perspective on what's right/ wrong , selfish/ self protective these days, don't have any friends my own age who are going through this, I just know this isn't where I want to be any more...

Of course not. You are human. Your situation is impossible. Ypu are essentially working 24/7 in a tough tough job.
You need distance in order to think and regroup.

Others may have better suggestions and I would also post on the Alzheimers Assn forum.

My guess is you need some respite at minimum. And a good look at your options. It sounds like, and forgive me if I have this wrong, you are sacrificing your life for your sisters inheritance.

Your dad should probably be in a home. He might be happier there. This and your mums care fees could well eat up any inheritance fast. But in the short term you need a chance to think. Can you make an emergency appointment with the GP on Monday and tell him/her thatyou need some iimmediate respite, at minimum your day spending time in day care.

Please rant away. As you will see from the thread you are not the first. You are tired, mourning your mum and isolated. Awful.

Oh Scarlett, you sound incredibly stressed, and understandably so. I agree that you need to prioritise your own mental health here. I really hope you will find a way to get some much needed respite, or better still, a permanent change of living arrangements for your dad so that you can begin to live your own life- something that we should all be entitled to have.

Ladies, I thank you so much for the welcome and support you gave me here, but I shall be leaving your thread as my dad's illness is not what we thought it was. His condition has deteriorated very rapidly over the last couple of days and we had him admitted to hospital yesterday. A CT scan has revealed that he has 'several' brain tumours- we don't yet know what type they are, or whether treatment is possible. So, although he does indeed have 'dementia' currently, in his case, it is a symptom rather than a condition in its own right.

Thank you again and I wish you all luck and strength.

Just a thought scarlet. My belief is that if there is a surviving spouse or a dependent living in the family home when the owner goes into a residential care, you can't be forced into a sale of the family home. Are you registered at the address, do you pay council tax there, how long have you been there may be relevant. It might be well worth going to the citizen's advice bureau and seeing what your position is, as a first port of call, or seeing a solicitor. I don't want to be over optimistic but maybe you'd have a case for preserving the home on the grounds that you live there as your primary residence. Others may know more than me about this.

waterlego that is I'm sure quite a shocking diagnosis to be presented with. I wish you, your Dad and all your family strength in dealing with this. The time you spend with him will be so important to him, and to you.

Waterlego I'm so very sorry to hear that . I hope the various health professionals are pulling together to support you all.

Scarlet I think what Bob is referring to applies only for the 65's or if someone is disabled about the house disregard, but could be wrong. I think you need to really keep chasing Social Services and ask your sisters to do the same. I am reading this the same as Needsmoresleep, to outsiders you are sacrificing your life for your sisters inheritance which just doesn't seem right.

Progress in the Wynken House today with my Brother and I agreeing we will go with what the SW says. I think he's hugely relieved to put unpleasant decisions in someone else's hands. Unfortunately that someone else is off on a training course today, having been off Friday afternoon.

Scarlet I have done an Internet trawl and indeed it seems I m wrong about the authorities not being able to force a sale because you live there ( in the event of your father going into care). It would only apply if you were over 60, or disabled in some way.
I spoke to my friend re your mum being re assessed. You can pm me if you like for a full report on what she said, but basically it s true if needs are stable and can be met by non nursing staff eg carers, then they are likely to reassess her as being self funding.

Waterlego,

Please dont feel you cant post anymore. We are far from an exclusive club, though genuinely do not wish for anyone to have to join.

It sounds as if you will have a tough journey over the next few months. I and others will be more than happy to offer sympathy, plus occasional advice. Between us we must now have quite a range of skills and experience.

Phone call today. My mother is telling staff that she has no money and cant shop. She firmly believes that it is essential to change handbags to match your outfit. I bet there is money in several of them. Just not the handbag she chose to use today. Of course by the time I phoned her she had forgotten her complaint. It is quite weird running the minutiae of someone else's life.

Hello everyone.

Waterlego, so sorry to hear about your Dad. Keep us posted.

Scarlet - your situation sounds beyond awful. Please don't feel you have to put yourself under this pressure. Have you considered some kind of limited equity release plan to release some of the money tied up in the house to pay for some care for your Dad. You could get carers to come in and be with him, to give yourself some respite. Are you sisters helping out at all? Definitely go & weep at the GP and tell them you can't cope - hopefully that might get social services involved.

All other friends on here - weary wave from me. Not feeling very well, some kind of achey, fluey thing brewing and beyond tired.

Hello everyone.

Waterlego I'm sorry about your dad.

Fil is still in the mental health unit despite the fact there are several good homes in our area all with spaces, the financial reports have been done but no one can seem to tell me what the hold up is....... my concern is that by dragging our feet we are going to miss out on the spaces and end up with homes we don't particularly like as our options.

Mil has gone into some kind of denial and won't even talk about homes and sil refuses to help in any practical way so it's being left to dp and myself.

We took a day off from it all yesterday and went to London for the day, dp pointed out that it was the first day we'd had together for about 18mths that had just been us doing things for us, he is going to talk to sil tomorrow about helping with the practical things like driving mil to visit fil or taking mil shopping, we know she finds dealing with fil hard but helping out with mil will take some of the pressure off of us.

We've also decided to take dsc away camping for a week, last year we didn't feel we could risk going away but at some point dsc have to come first, they are so good at not complaining about plans changing because of fil it doesn't seem fair that they miss out on a holiday this year too.

So.... life just gets better. Just been told today that my mum, who has been in a care home for the last 4 years, after having suffering a stroke which left her paralysed, unable to speak or swallow food, is probably about to die. She has an infection which she is probably too frail to survive. She could die tonight or if she doesn't look like she will survive they will withdraw her medication. I asked them if they withdraw her medication how long will it take her to die. They say it could take 5 days.I rang her sisters to tell them she may not have much longer to live.

I went to the care home to see her and give them the name of the funeral directors we have chosen. She looks so pale and still and frail.

I told my dad but all he waS Interested in was, his usual questions, what time is it? what day is it? whar's on tv? what's for supper?

It's like dealing with an autistic child. I really need a break from this. I think I will kill him soon otherwise...

Is there a social services helpline? I just need a break from him for a few days...

Your local council website should have a SS enquiry line number. There will also be some form of emergency cover but I suspect it wont be for public access. If you really need help tonight you could phone whatever 24 hour GP cover exists in your area. They should know.

Alternatively collar one of your mums doctors or nurses and say you really need respite care and SS involvement for your dad. Especially during this very sad period when you want to be there for your mum. There will be a SS person in the hospital, if your mum is in hospital, so you could try to have a word with them.

Failing that if you want ideas tonight of what you might do to get things rolling fast I might try the Samaritans. They will be used to all sorts of crises and again have a good contact book.

You might also try posting on the Alzheimers Assn website.

Yours and other stories are so sad. In particular I hope Post Bellum is feeling better. The surprise is more that people have managed to keep going.