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

Thank you all for the lovely welcome.

and to you PostBellum sorry to hear of your loss.

I already feel as if you lot understand - which of course, you do! I can sort of cope more with mum's dementia, but what I find so very hard is my dad's attitude to it all and his stubbornness. Tomorrow he has a hospital appointment, which SHOULD be crunch time for him......but we have been saying that for the past year!! He really needs to start having kidney dialysis 3 times a week, but he is refusing to start the treatment. My sister and I have discussed it and we think that he thinks that mum will not last too much longer and if mum dies we just know that he would give up immediately, so he sees this as a get out, IYSWIM. But it could now be that he ends up dying before mum....which he would not be happy about because he would worry about her care. In his ideal world I think he would want to "let" his illness take him as soon as mum is gone......but he can't control that, can he? Oh, I forgot to say my dad is also the biggest control freak you have ever met and where I learnt how to be a total control freak myself, I learnt from a master!
Anyway, my sister is going to the appointment with dad and will push to get things sorted out for him and I am looking after mum for the morning. She will be fine as long as one of the cats plays along and will sit happily cuddled up with her, being stroked and being told over and over and over again what a lovely cat he is! I am sure one will oblige!!!

One worry that we do have, that I could just never say to anyone in RL is the fact that my dad does have a tendency to get very frustrated, very angry and we believe there is a real possibility that he would be violent towards my mum. Just out of frustration. Do any of you have experience of that? What did you do?

Thanks again for the welcome...I will stick around, don't worry, you wont be getting rid of me that easy now!

Hi PA, not sure about what you can do about the possibility of violence until it happens. Then you would have to have an assessment by his dr and SS to see what is best for them. My Mum can get aggressive especially when she has a UTI. In hospital she tried to bite the nurses when the y tried to wash her, but improved with ABs. She is in a NH so the carers and nurses are good at knowing what to do. I know when I was caring for Mum, some days when I had had to clean her, clean the floor, the bed etc, I was at breaking point and shouted, and got angry because she wasn't helping herself. If she had not become really ill and not gone into hospital maybe I would have done something I regretted. I don't know. Glad it didn't come to that.
Let's hope your Dad's dialysis starts soon.

Hi NMS that is quite a decision- do you mean moving all your family over to be closer to your mum? That seems quite momentous. Or amI mis reading you. If so, how do the rest of the family feel about it?
I m so tired with. Both DSs having stomach virus one after the other , we re in week two and haven t had a decent night sleep in that time. Situate with Dad getting increasingly difficult he is noticeably worse, confused, aggressive. I m going there on Thiursday and the GP is going to visit. I don t honestly know how much more I can take, I m going to visit a solicitor next month to discuss care home funding, things are a bit complicated.

Not quite.

I have felt my issues were different in that my mother is physically well but having no memory is a real handicap. Experience is that I am having to do quite a lot myself, eg take her for a flu jab etc. Plus my dad was a bit of a buy-to-let enthusiast and until I get a family consensus to sell, I need to manage these. So six hours in the car to give keys to a plumber as the agent could not find their set.

Then should my mother have a health crisis or a fall, I am back to three trips a week or more, and this time not able to stay in her old flat.

Physically my mother is at least a couple of decades below her actual age. Once the first crisis was over I got quite depressed about the long term commitment. If she were to live to 100, which is absolutely possible, I would spend quite a lot of my active retirement on the motorway. Assisting our parents in retaining as much independence as possible, means less independence for us. In part perhaps it was the awareness that I could spend more years looking after my mother than I had spent raising my children.

We have just paid off our mortgage and so, though I am not particularly happy about the financial implications, a small flat accessible to the railways station seems the best option. I can then go down during the week and DH can take a train down at the weekend. Kids are at the UCAS and GCSE stage so we will soon have more freedom. (Am I allowed to veto applications to local Universities?) My mother wont move to London and in practical terms it would make no sense. Luckily she lives in a nice part of Britain near the coast.

I feel relieved that I have finally found a solution to an issue that had been gnawing away. I know others have long drives. I have been finding that the drive plus the stress of dealing with hospitals or whatever, meant that I remained pretty wiped out for a couple of days after.

All a bit of a first world problem compared with those faced by others. I plan to offer the flat to extended family provided they call in on my mum. This should increase the flow of visitors and as her world contracts, mean she is less reliant on just me. Not sure if it will work on the invisible brother.

Good luck with the GP and solicitor. It sounds as if action is needed. Any progress on your brother. And I hope you get some sleep. Hang on inn there and hopefully I will be able to offer you a week by the seaside.

PA I'm sorry I don't have any experience of violence, Mum only been verbally aggressive - thought nurse did ask once if she had been violent so I think it is sadly quite common.

Bob, you sound done in I think you need to lay it on the line to the GP. You have young children, a job, a Father with Dementia and a Brother with Schizophrenia. That is too much to sustain long term and the professionals need to help you before you burn out. It is ok to say you can't do it anymore, you've done brilliantly to get this far.

I have had 3 calls from Mum today. First included can you order Tenalady (no ask your son, I'm not Attorney) . Second was when are you going to the hairdressers next? I had anticipated that one and discussed with hairdresser who said she'd cut her hours so can't fit her and wouldn't feel comfortable doing so even if she hadn't as she is my friend (plus Mum used to say she'd looked up someone else's record and got it when doing her colour!) . So simply said Hairdresser has cut hours and can't do her and no I don't know anyone else.

Final call was did I have electricity. She vanished after that. She also said when I asked when Brother coming that a Carer said Christmas so I said how lovely it will be for her to see him and we're seeing DH's side and my Dad this year. She did sound relatively with it though was surprised to hear of DS's new school and told me as she did last time about the cure for Alzheimer's but she can keepit togetherwhen she tries. My counsellor rang after to arrange first session,sounds very nice. I feel far more in control of things. I won't be taking three calls in a row again.

Just had the most awful day with my dad. Not posted on here for ages, just been trying to muddle through. Moved back home last Nov to try and look after my dad who has dementia and is now practically blind.

Think today is finally the last straw. Walked my dad up to the Drs for his flu jab. Is a walk that would take me 5 mins but with him took 20. On the way back, he seemed very unsteady on his feet and kept needing to stop. He seemed unable to balance or to stand up straight and it was getting more difficult for me to keep him upright. Eventually I couldn't cope with the weight of him any more and he literally just toppled over and landed on his head on the pavement. Someone on the street came over to help me lift him up and asked if he was drunk! I said no he's got dementia and he's blind. Got him home and just didn't know what to do. I was practically hysterical and just felt like I can't cope with this any more. Rang Drs surgery and they suggested I called paramedics. They came over, were great, did lots of tests on him and dressed his head wound.

I think this has just made me realise I can't cope with this any more. Last week, he got up in middle of the night, to go to the toilet or get some water, got lost and disorientated in his own home as I woke up to hear him calling out for help. OUTSIDE THE HOUSE. Basically he'd gone out the front door and was wandering outside at 4 am not knowing where he was. I shudder to think what could have happened to him if I hadn't woken up.

I have asked for an assessment of him from both. SS and GP but nothing has happened yet. I think I have to go to my GP and literally beg them to do something as I am on my knees with trying to deal with him anymore. He's a danger to himself and needs 24/7 care. And I just can't cope with it any more...

Sorry for rant, I know it's difficult for everyone, but does anyone know how to escalate this so I can get him into a home where he will be safe..?

Poor poor you. Please rant away. You took on a near impossible load. Speaking for others that I only know through MN but if we can help in any small way, we will do our best.

What you need to do is ring both SS and the GP tomorrow and say you are unable to cope any longer and are heading for imminent breakdown and you need urgent respite care as you can no longer do this. Say your Dad is a vulnerable adult who needs safeguarding as he is a danger to himself and without constant supervision will come to harm - cite the 4am wandering episode. If needs be say you are walking out and he will be their responsibility.

If you cry, don't worry. The only thing is the other members of your family might not take this well if they don't properly understand, be prepared for this. Sorry you are going through this.

Thank you both for your kind replies. I've tried so hard over the last year to deal with this and be strong but I've really reached the end of my tether with it now. I think I just have to kick up a real fuss and say how I can't cope with it any more. A nurse is coming over to look at his head but after that I need to go to his GP and tell them I can't cope any more.

Thanks again for your replies, it's such a hard thing to admit and none of my friends my own age are going through this so it's good to have a place just to go aaaargh!!!!

You poor thing, it is so hard looking after a parent with dementia and being blind must make it worse. Ring SS again today and the GP. It is a shame the paramedics did not feel he needed to go to hospital, because then he might have had a quicker assessment. Ask the nurse who comes today for advice as well. We can only do so much and also have to take care of ourselves because if we get ill who will do it then. Agree with Wynken about family. But take no notice. Do what is best for your Dad.

Does anyone know how to get some respite care for a week or so..?

Ring SS and tell them that you can't cope, that you are now concerned for his safety due to night wandering, and that you need some respite care now to prevent total carer breakdown. Cry on the nurse too. Don't take no for an answer.

PositiveAttitude - my dad gets very frustrated with mum too, and is sometimes a bit rougher pulling her up from a chair, or shouts at her more than I'd like. But I remind myself that he spends 24 hours a day with her, and shes often highly unpleasant to him too, so I can't blame him. Obv if he'd hit her or anything, then it would be time for her to go into care, but it has never happened - and he hates doing it, but is old, scared, and frustrated that he doesn't have answers for everything

Scarlet have a look here.
www.nhs.uk/CarersDirect/yourself/timeoff/Pages/Accessingrespitecare.aspx
You need to get SS involved to make an assessment.

Link again
www.nhs.uk/CarersDirect/yourself/timeoff/Pages/Accessingrespitecare.aspx

How have you got on Scarlet?

Hello Everyone!

Posted separately ('I resent') can't do a link I'm afraid - but thought would mark my place on here too.

Yesterday as you can tell from my post - I was feeling especially bitter! Not sure if I quite belong here on this thread - Dad had dementia and died in June. I also am concerned about mother. She's always been odd but some of her reasoning at the moment is very bizarre and her memory is very poor. Not sure if she's demented . Yet. Also a looming joint replacement. Docs want to go ahead. I am very dubious as I doubt she'll be compliant with physio.

Welcome and dont worry about whether you qualify dementia wise. We are all coping with a range of problems whether around finance, housing, relationships of physical health. Dementia is only a part of it.

Your other post was really well written and struck a chord. I thought I was the only one who resented my mothers failure to offer me a drink. She makes herself cups of coffee and offers coffee to other visitors. But not me.

You may well be right about your mother and her mental state. She might bounce back from the stress of looking after your dad and the bereavement. She may not.

If you mum has the operation what plans are there to support her whilst she is physically incapacitated and also to prompt her on compliance. The doctors may be taking a wholly physical approach. If SS will need to provide additional care, they should be consulted in advance.

Can you get the GP to give her a memory test? (Mini-mental state test?)

There was a lot in the summer about general anesthetic raising the risks of dementia in elderly people. ( One article here www.medicalnewstoday.com/articles/261319.php ) I dont know how much effect two operations (after a fall) had on my mum. However she was pretty confused for at least three or four months after. Her memory is still pretty awful, but being in hospital, the pain and the anesthetic had a huge negative impact on her orientation and ability to cope with day to day routine.

Hello again Needmore!

Gosh that is useful - didn't know that about GA. Even discounting that I think you're right - pain and disorientation (she is very rigid in her routines) could well prompt further decline.

I am finding all this info really comforting. I have a gut instinct that this knee op is a Bad Thing - then beat myself up about it - it's her body and her pain, after all.

And I get the distinct impression that the GP thinks I am interering against her best interests. This GP is a joint expert and she is very pro the op.

I've found it really hard to get Drs to think about the whole person though - a knee replacement is very dependant on compliance afterwards, and if it goes wrong its really wrong. Better to have a bad knee, but be able to hobble round than be non weight bearing on that leg tbh. And mums had very bad reactions to the GA in the last 10 years.

Dad just rang to say mum had become increasingly non responsive today and has been vomiting all her food. OOH have sent an ambulance. Here we go again...

Welcome Needmore I, too am a newbie here.

CMOT Oh dear - it doesn't sound as if this is new to you!

Not a brilliant week for medical news here. Firstly dad was told that it is now not viable for him to have the kidney dialysis. He had left it too long, so now it is a case of quality of life versus quantity.
Then Thursday mum was seen by her consultant. Lovely man - 1st time I had met him, but he immediately seemed to have the measure of mums dementia. (I never had a lot of confidence in her last consultant who did not seem to look any further than mum saying there was no problem with anything!) He found mums heart rate very low and irregular. Has suggested that we stop some of her medication......but he warned that if we did that then her dementia would very likely take a real nose dive. It seems like a decision between letting her heart kill her off quickly or letting her get far worse with the dementia. DSis and I are in disagreement about this. I feel that dad wont cope with mum being incontinent and totally unable to do anything, so feel that she should stay on the tablets even if this seriously shortens her life. Sis thinks we should take her off the tablets and give her chance at a longer life. We get on really well, so there is no bad feeling yet . My brother is a very diplomatic person, so I will give him a call and discuss with him. I am willing to go with what they think........maybe!

On the opposite end of the life scale my DD3 is pregnant with my first grandchild. The circle of life!! I'd love to be the sort of grandmother that my mum was to my kids.

Welcome Alice. My Mum wasn't very compliant after her hip and the op hasn't done what it should have. She says the other needs doing periodically but I doubt that will ever be done.

CMOT I'm so sorry. How is your Mum doing. It sounds like you and PA could do with big time.

PA, really sorry to hear all that. For what it's worth I would be making the same decision as you as feel my Mother would prefer shorter better quality over longer and being Gaga as she puts it, plus that would be my preference for me. However I know my Brother would take the same view as your sister is currently taking and he is her Attorney so I will have no say.

How lovely you are to be a Grandmother and you aspire to be as your Mum was with your children. A lovely reflection on your Mum. I aspire to be very different with grandchildren to my Mum was with mine and find that sad.

My Brother has screwed up the financial POA. He didn't listen when I said OPG advised to do a new one rather than me coming off current one as he will never be able to make decisions for the aspects we are joint rather than the joint and severally bit. This basically means he wouldn't be able to sell the house. I followed his instructions on what to do and it's wrong so OPG want the form resubmitted plus reiterated the bit about not selling the house. Clearly he needs to get a new one drawn up. I do wish he would listen when I advise him of things.

Mum had another awful day yesterday when she didn't know who dad was when she was awake, but better today. She was following the cleaner round apparently (for they finally have a regular cleaner).

Wynken, I don't have the words for your brother. Though I think he and my brother would really get on - mine told dad yesterday that he 'needed to get advice from the AS'. Cos they really know what to predict for a person when the Dr's can't predict how anyones brain will respond on a particular day!

Oh dear CMOT, she didn't get taken in then when paramedics came ? It's good she's doing better today though. Is your Dad bearing upon is that a silly question ?

Yes let's stick our Brother's together and let them get on with it. I believe mine is now dealing with the intricacies of being Attorney from another continent. Still no invite for coffee from my Mum but I think I missed 4 calls on my mobile on Thursday, hard to tell as her number doesn't come up - reception not great here, txts get through but often calls don't. That was the day the Carer having her iPad was apparently causing friction so I suspect the calls weren't a coffee invite.

No, its like the times before where they can't find anything to explain it, so are loathe to take her in, even though its obvious that she isn't well iyswim. I suspect that they are like absence seizures, possibly temporal lobe, as she has virtually nothing left there and the dr at the memory clinic did suggest this - but of course the only way to tell is an EEG and you don't get those. I may ask at her next appointment about what dad should do as he frets that if he does nothing he might miss something and she'd die when he did nothing.

Dad is ever more stressed about it all, and not sleeping. He thinks people will judge him for how thin she is.

Your Brother's idea of AS for advice is rubbish. However I wonder whether your Dad could benefit from talking to someone so that someone he perceives to be knowledge says to him it's ok, no one will judge, it is what happens.

It does sound a good idea to ask the Memory Clinic. Would it be an idea to ring them and get someone to phone your Dad ? Ours were great about calls between appointments. Actually they could say about the not judging about weight thing.