Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Apologies for swearing but I had to vent whilst writing in tears this morning.....

Hello. I dip into this thread from time to time, to reassure myself that I'm not alone in worrying so much about my parents. DF with dementia, and has had it for 4-5 years, now. DM struggling to cope - has some help 2 days a week, but now needs more. Present carer is an absolute star, and both parents love her. However, she can only do the 2 days a week, and DM needs more for her sanity. We will have to start a search for someone who can do more like 5 days.
TBH, I worry about DM more than Dad.

DH has secondary cancer which he doesn't grasp at all. Don't think he got it first time round either. Nothing keeps him awake, but mess with his routine, and all hell breaks loose.

I'm heartened by the fact that a lot of other dementia sufferers lack any sort of empathy with others. I think DM finds this the hardest.

I do go over and look after DF for a few days to allow mum to just head off somewhere on her own. DF and I have great fun meanwhile as long as routine is stuck to!

We are lucky in that my father is quite happy, and has not reached the stroppy, argumentative or god forbid, the aggressive stage. I dread that day.

Sorry. I've rambled a bit. Just sending lots of empathy, sympathy and hugs to others in a similar situation.

Hello both. I can really relate with the statement that all the professionals just see a coping spouse, not these strain and heroic daily battle to keep a dementia sufferer on something resembling an even keel. My dad is a widower. So I had no choice but to step up to the plate when it became obvious something was wrong. GP visits, brain scans, social workers, OTs care packages, POA, psychogeriatricians, admiral nurses, day centre people, pharmacists I ve had the dubious pleasure of having to deal with them all. Fast forward 5 years, dad iOS at home with a care package and I am exhausted. I realised the other day that not one of the above persons/ agencies has ever asked me how I am. So. I have taken a step back. I no longer obsess over every detail. I let minor things slide. I. Don t answer every ruddy email instantly. I have reduced the visits from once a week to once a fortnight.

It s of course not so simple for your mum Rosa. But if she can reclaim some spacee for herself she should and not feel guiltily. Could your dad be introduced to a day centre? Are your parents getting attendance allowance? I t s not means tested and could pay for a carer to come once a week while your mum gets out and does something for herself. Carers have to be selfish sometimes, otherwise they just get put upon indefinitely. Good luck.

Your dad might not like it at first but be firm. The alternative could be career breakdown and having to go into residential care, which he'd like even less.

Carer breakdown. Sorry crappy ipad here.

Hi there! Reading all with interest.

We are back at telephone fun and games, via the mum being scammed by a knock-on-the-door gardening company.

She promises that she will put the phone down, won't talk to people who knock on the door, and won't hand money over to anyone without asking us. She is now doing/not doing all those things, and either denying she does, or thinking up a good story to cover it.

A police lady who spoke to us today mentioned that there is or used to be a device which detects movement, and you can record a message onto saying "don't open the door to anyone you don't know!" or similar. But I can't find any trace of one, or anything similar, as least in the UK. Does anyone have any notion?

We are looking at "VIP" phones again - not concerned about expense if they work, but the catch is that they can be difficult to make-work with contacts (like her boiler insurance people ...) which don't use a consistent number, or won't tell you what number they are calling from.

The Tru Call which someone recommended has very good reviews. There is apparently a BT 6500 phone too which can do a similar job much more cheaply IF you use some ingenuity in programming it.

NotHilda - is this what you were thinking of?

My mum continues to slide downwards - she's forgetting to use her left hand, and now doesn't know dads name .

If anyones parents can still get out, and are looking for a reasonably priced lunch, then mine are now eating 3 days a week at a Hungry Horse pub (they can go on the mobility scooters, and the staff are fine with mums messy eating). Over 60's get one meal in 5 free, and theres lots of special offers. So tomorrow, they get a meal between them for £5 inc drinks which makes dad happy, and mum eats better when out, plus dad gets to witter at someone different.

I'm sorry, don't know about the phone situation.

Really sorry to hear about your Mum CMOT. I'm glad they can still get out though and that sounds like a total bargain and good to hear of the staff not making a big deal of it.

I hope you are all getting some chance to relax with your children this summer.

I'll be mostly working Wynken - ds is in holiday club. I had my annual little weep about ds not getting to spend any time with grandparents over the summer last weekend before Getting a Grip.

How are you doing?

Not too bad thanks. Brother is making DH redundant from end of year so dealing with that yet again. Poor Dad has shingles, going into 7th week and he's had to cancel his cataract op which is a pain.

DS hasn't seen my Mother since last July and DD since February I worked out recently. New Home seems to be going pretty well. She's pretty calm, lucid and not very forgetful at the moment. I keep my distance and just ring a couple of times a week. Not any further with tests for her heart failure.

Rumour has it FIL is coming over on the next few days so we could do with getting along to see him.

Your brother is managing to top trump mine in twattishness then! Sorry to hear about that for your dh, you really didn't need any more stress

Yes, doing well isn't he ! I'm getting immune to a large extent and trying to just love forward.

Has your Brother shown up recently ?

His latest endeavour was to try and challenge the legacy that our great aunt left our respective ds's, in trust till they are 21. He wants the money to go to him instead . He'd never sent her a christmas card, let alone phoned her or even met her.
Dad really needs this stress

Flipping heck, excellent effort on raising stress levels by your Brother. He'd probably get on well with mine

Sorry to be confusing with names, I'm changing.

I'm sure he and your brother would get on like a house on fire. Gits.

How is your FIL?

Just had dad in tears on the phone - he's been unable to sleep for days worrying about what will happen to mum if he dies first. He wanted me to tell him I'd look after her, and not leave her to my brother

God, its so hard sometimes

Oh CMOT that must have been really hard for you . This disease causes such a roller coaster of emotions.

Not quite sure how FIL is. SIE emailed to say she thought he had lost about a stone, he was very small to start with. DH trying to see him but had a text from her saying if he wanted to he'd have to contact one of his brothers as her DH is really ill but not to reply to her text as he doesn't want anyone to know how he is. If we're all lurgy free we're hoping to get over at the weekend. He emailed his Brother who hasn't replied. Families !

Hello - please may I join you? Have only just found this thread, and have read through a little, but can already see lots that I can relate to, especially how the carer's needs are so badly ignored.

My DF is 94, and has Alzheimer's / Dementia. He has been slowly declining for about 20 years, but now has no memory, and is confused about absolutely everything. My DM is younger than him, but at 74 is still finding the 24 hr care required draining. She receives very little support - someone comes to sit with him for 4 hours on a Tuesday, and on Saturdays he is picked up and taken to a day care centre. He is gone from 10am to 3.30pm, so this gives my Mum some time to go out and get things done. Both of these are provided by a local Dementia charity. However, the Saturday is under threat as my Dad doesn't understand that he can't get up in the bus they use for transport - he is constantly undoing his seatbelt and getting up, and they are struggling to keep him under control, so they have said it is a risk to the others, and have put him on a 2 week trial. My Mum will be devastated if this respite is lost!

Can any of you advise what level of support my parents are entitled to? Social Services are providing nothing!

My Mum has been doing so much, but struggles with explaining, as English is not her first language, so I am trying to help her, but I feel I need more information about what is actually due to them. Can you help here, or should I start another thread?

I feel very frustrated, as I don;t live close to them - a 2 hour drive, so I can only visit on occasional weekends.

Hi Knockmedown, sorry you find yourself with us.

What social services will do depends on whether your parents are above the financial threshold to pay or not. Above, and ss may assess them and make recommendations about accessing care, below and you'll have to fight for a care package.

The best help my parents have had is from the local carers centre and AgeUK. They have made sure they get everything they are entitled to financially which has then paid for a cleaner, two carer visits a week, put them in touch with a local handyman service and that sort of thing.

They come to the house, and fill out all the forms, plus advise on local resources.

I live 90 minutes drive away too, so I know what its like - I drove 220 miles yesterday to take mum to the dementia clinic as dad can't push her wheelchair through the big hospital.

On my life, we've had an ambulance call (mum collapsed again, god bless the emergency pendant people), and mums clinic visit showed a small decline in her MMSE score, but her MoCA test was appalling. In spite of being told repeatedly it was the memory clinic she just kept going back to the script about her knee. Gah.

Hi Knockmedown and sorry to hear about your parents situation. I can't add much but would suggest contacting the Alzheimer's Society and seeing if Admiral nurses cover their area.

So sorry to hear that CMOT. I'm not familiar with the MoCA test, don't think Mum dis that. How is your Dad holding up ?

Dad is doing ok again thanks. I think my brother just tipped him over an edge there. He's back to see if the geratology unit can find why he's so breathless again tomorrow.

You mentioned elsewhere that your mums leg is flaring up again - is it on the mend?

Fingers crossed they can get to the bottom of it and make things easy for him. Siblings do have this habit of tipping over the edge, we could all write a book on their exploits.

After an allergic reaction to AB's I think they are improving thanks. I'd like it go in but lots of lurgy lurking in this neck of the woods . Mum's claiming she has to stay in her floor of the building so I said probably a sickness bug. She said she has been trying to get the bottom of it but no one will give her a straight answer but triumphantly said she'd worked it out - apparently it is Ebola !

Hi, can I join please?

I've had a read of this thread as

Does anyone else find that it's hard to talk to people about their lives? I find that when friends ask, I now tend to say something vague and change the subject, because otherwise I have to justify why it's not easy to "just do x" and get it sorted (just tell your social worker to do that / just find another care home...) I can understand that it's nicer to believe that "there's loads of help, you just need to access it", and people unaffected are oblivious to the reality.

I'm quite happy not to talk about dementia when seeing friends, as its nice to have a break from thinking about it, but it means I have no-one to confide in as I'm a single parent.

Very much so mipmop. None of my RL friends want to acknowledge that it can happen to parents, and I feel like a broken record sometimes on the terrible roundabout of my parents crises.

Thats why I love coming here to share with others who understand