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.

Fingers crossed. I started a thread and there were 4 recommendations for it plus Dad has had a couple. Seems like a big thing to do, move her from where I live but sometimes you have to look at the bigger picture.

I do love the idea of your Dad whizzing around on his scooter, does he feel that he has regained some independence and happier as a result ?

Hi everyone. Wynken it must be really hard, after throwing your all into resolving your mum's living difficulties, to have to face her hostility at every contact. Maybe the new living arrangements will be an improvement. I would have thought that giving her a sense of choice at this stage could work in your favour- "mum would you like to... mum what do you think of...". Does she have a past history of nursing resentments? From the way my Dad is, i believe that past (bad!) behavioural habits endure in dementia but obviously get expressed in starker ways as coping strategies fail.
CMOT thinking of you. It is hard having to witness your parents' vulnerability, often there are no obvious solutions, just giving support and being there.
Went to visit Dad yesterday with kids. Inauspicious start as line was flooded after a certain point and we had to get on the bus service. DS2 vomited just as it pulled into Dad's station. Got there 1.5 hours late, Dad had already gone out. However he came back and we went into town for a meal which he really enjoyed. Unexpectedly, his youngest sister turned up from Ireland (they hadn't seen each other for 30 years. She is not the stablest person ever and i remember massive rows and her screaming at my mum last time she visited). Still she , Dad and bro seemed to be getting on all right. DS1 commented that it was depressing because she kept asking Dad questions he couldn't answer.
New carers seem to be working out well so far, although unfortunately some miscommunication with bro. basically Dad smashed the front door because he had forgotten his keys once again. So bro wedges a bookcase against the door at night, and they couldn't get in. Cue apologetic email to head office and requesting they go in the back patio door (which I got fixed a couple of weeks ago at great expense, he'd broken that too). Now the front door needs fixing. Luckily there is nothing worth stealing in that house.
I am trying to keep Dad at home but as fast as I fix one problem he throws another 3 at me. It's knackering mentally and physically. At some point I'll have to make the judgement call about whether it continues to be sustainable. But then again, the professionals will get involved and as i mentioned that will be a convenient fig leaf for me. Dad will kick off massively when he has to leave home. I hope to stay well clear when that time comes.

The whole scooter thing has been a total lifeline for dad - on it he can go to the GP, the supermarket, the market, hang around wittering chatting to people, all in his own time. Its given him back a lot of what he had lost, and removed the isolation. By the miracle of Amazon he now has a cape to go over him and scooter.
The new scooter is even better as apparently its so comfy - he's hiding the keys from mum, but will have a go at her on their old, slow one and him following which would be great as they could go into town together and have lunch or a coffee which would help her.

Glad to hear that the carers are working out Bob, but it does sound like things are still going downhill. Look after yourself

She"s always been difficult and looking back, she's been fine if I've done what she said. She's lost control of her life and is lashing out at anyone and everyone right now. Won't see my DC (they don't want o see her so it is ok). She woukd though hate her current life and what she has become and say she was better off dead if she understood her current predicament . She did have some insight before and said she wished a TIAvhad been a big stroke and finished her off. Right now she thinks she can reverse her Dementia by swimming and walking as she read it in the paper.

As my Brother not here it's me she's asking to do things - she was saying I had to drive up and see the other place but that woukd be a five hour drive, time off work, I'm up to my eyes in solicitors, freecyclers, storage quotes etc and am starting a new little business. I've said I can't go and Brother will need to do it. Before counselling I would have shot off and done it. Now it will have to wait, I am not Health and welfare attorney and decline requests to become joint. She will have to stay where she is until a space becomes available and that could be some months.

I'm very glad it hear these carers have been better Bob but second CMOT, look after yourself. There is a limit to what you can and should have to cope with. We've been hiding behind the SW, I figure that's part if their job.

CMOT, I'm really glad about the scooter and love the idea of both your parents going out together . And as for Amazon prime, that has been a huge help and worth every penny. There's some new Love Film thing being attached to it DH was saying yesterday .

Yes i am kind of glad I'm not health POA because i find making all decisions really burdensome. Glad the counselling is freeing you a bit from that feeling of having to do everything. I know it only too well. That panic, that "oh my God if I don't do X there is going to be a disaster".
My counselling finishes next week. It feels weird to be ending but I know I've gained a lot from it. The main thing is boundaries and being able to be fully in my life with husband, kids job etc and not permanently distracted and fearful because I'm thinking of Dad and anticipating the next crisis. And as for guilt I rarely feel it anymore these days (hope that's not tempting fate!).

I don't feel much guilt either - it is quite liberating. It is hard not to anticipate the next crisis as I think your body gets into a state where it doesn't take much for the stress reaction to kick in.

My Mother is hallucinating black beetles today. I had a letter from my Aunt, yet more lies exposed. She apparently though I was a liar like my Mother in her words. Think she's realising now what happened ie. I was lied too or in DH's words, well and truly stitched up.

I was quite surprised one of Mum's old friends who I rang at Christmas to let her know what has happened, was under the impression that DH is a Property Developer ! More lies. I've had to ask what my Grandmother died of as doubting it was actually hypothermia as my Aunt didn't check on her as I was.

Thanks for the suggestion about memory clinic. She has her scan booked for Friday. I'm calling the psychiatrist today and will ask if there is "any other kind of cognitive tests that should be done" and see if he responds. Difficult though if he'd rather give it 6 weeks on anxiety meds to see if that makes a difference...

She's had another episode of waking up in a state, faint and sick, so I think its clear it wasn't the medication. Going to ask to try that again on a day when I can monitor her. She will feel better if she can be told we are treating something, I'm sure.

What did you say Luvvies, any luck ?

Can I just say, getting a wee sample out of my Mother is worse than getting blood out of a stone.

Luvvies- just read your first post and I agree that your mum needs memory tests. There are different kinds of dementia and symptoms can be individual. It's a sad fact that you have to nag medical professionals sometimes but you know your mum best. The scan should show up any problems. let us know how it goes. This is a very difficult thing to deal with but I find it really helpful talking here to others going through the same stuff.
Wynken/bob- tough times for you both.Will the move go ahead do you think Wynken it sounds positive.
You mention counselling helping with the guilt, how do they address that. I am wondering whether it would help me as I feel bad every time I leave mum as if I have dumped her there although I know I haven't.She always says she misses me and wants me to stay longer.

I talked through a whole range of issues with my counsellor. It was mostly me talking - once you start it's amazing what you can come out with yourself. She helped reinforce my solutions and feelings and would make the links to other things I had said in previous sessions. Basically I am now at the stage where I'm very sorry she is in a home but know she needs it be there and it is not my fault.

I used to feel guilty about stacks of stuff I found when I started talking but I now don't. One thing she woukd ask me is 'do you feel this is your guilt to feel ?' an if it starts creeping up on me I ask myself this. It's a process and you have to work at it and I can see it's not for everyone but it definitely helped me.

We've had to unplug the phone as I don't trust Mum not to call in the middle of the night. She's totally lost it - rang me earlier to tell me someon put the word round there was a party in her flat, people turned up and she had to turn them away. Wee sample still not happened . She claimed she left a sample by the loo, came back and it was full to the brim as 'someone had pissed in it'. Has promised t do one tomorrow but who knows. She won't take the flaming AB's.

Did point out she needed to co-operate so current place give her a good 'reference'. She is talking utter paranoid rubbish and clearly is quite unwell.

thanks for the info sounds interesting will talk to my gp.i remember when my mum was having delusions its awful u can't reason with them .nightmare.

Hi, so I asked if there were any cognitive tests we should be doing. He said "well given how she is at the moment I would expect that she wouldn't do very well, as she's not herself." He feels its better to wait until the MRI results, which he should have midweek, and take it from there. I suppose that makes sense to some extent.

He agrees to start the anxiety meds again on a day I can supervise and reassure, which will help her to feel something is happening.

He is however, being very accessible and , says I can call at any time, so I'm not feeling too frustrated with him personally if you see what I mean.

Guess that does make sense Luvvies. He does sound like he is trying which always goes a long way.

Well here I am on my lunch break having just calked the CH to see if Mum had done a sample. So much for the clearly quite unwell of my last post. Lo and behold now I said new CH would need a reference from current one, she produced one this morning - no UTI.

Is it a progression of her Dementia I asked the Manager, who thinks not and that she's being awkward and trying to wind people up with sme degree of success as she pointed out....

I think she thinks if she plays up current CH will chuck her out.

Like a teenager pushing the boundaries Wynken!

Yes CMOT but I already have an actual one of those ! How ate your parents ?

Well, nothing critical, but dad is still very breathless and saw the geratology consultant this week and though they could find nothing want him to have a 24 hour monitor - which he doesn't want to do because of leaving mum. And mum seems to be losing my name . Not that she can really talk to me, but she got to the phone before dad and couldn't explain who it was.

My brother is being a pita, but dad is just ignoring it now and getting some amusement out of his tactics!

hi all.
my nana has started, all of a sudden, to be very confused and acting odd in so many ways. I feel a fraud posting here, no diagnosis has been given but I need somewhere to off load and ask for help.
She is convinced the neighbours are conducting a hate campaign against her however all the going ons she tells me about have never been witnessed by anyone else, when confronted they deny this and mainly it seems completely madness. Nana claims they are paying people to watch her through the windows, make p.p.i calls and post her junk mail. (supermarket flyers) the neighbours themselves are in their 70's.
I just dont know why she is feeling like this.
She is very confused in general. I want to help her but just dont know where to turn

Hi Caz, if this is really sudden, then its possible your nana has an infection of some kind - most often a urinary tract one.

First step is to contact her GP and explain that though you know the GP can't discuss your nana care with you that you are very concerned about this confusion and paranoia and you feel she needs to be seen, and could they please find a reason to call her in. GPs will normally find an excuse as to why they need to see someone

Thanks for the suggestion, however she did have her annual m.o.t at the dr only a week ago an water, blood was checked.
Nana has been a bit forgetful and not her self for the last few years but this " extreme" behaviour seems to have come from no where in the last fortnight
thanks for even just listening. To see her like this is breaking my heart

hi caz so sorry to hear about your nana. i agree about speaking with the gp as there is medication that can help. my mum had delusions and hallucinations, she thought people were tapping the windows all day and getting in the house using the shower she called the police out twice. ideally a joint appointment with your nana would be good if she agrees

Hi Caz, I'm really sorry to hear that. I also agree with talking to her GP. Have wha you want to say written down before you speak to them so you can get everything you want to say in. Any info about wha she has been like over the last few years will help. It is distressing to hear, my
Mum gets very paranoid and a lot has been focused on the neighbours who are lovely.

CMOT, I'm very sorry to hear about your Mum, that must have been hard. I hope the Consultant will be able to get to the bottom of his breathlessness. That's good your Dad is able to ignore your Brother's antics, best way to deal with things like that I think, but often easier said than done.

Ive just spent the morning with my Nana.
One minute she is sobbing, nd describing all the conspiracy stuff. Then in the blink of an eye she is nana again.
The confussion is breaking my heart. She thinks im her daughter but she has two sons and has never had a daughter, however she knows my name and can talk about my children.
I have spoken to her dr and have an appointment on monday.
Sobbing whilst writing this. I want to help her but don't know how to. I want my nana back.

oh dear its so hard, you are helping her by spending time listening to her and speaking with her doc.its good shes herself some of the time. dont feel you have to have all the answers thats what the doc is there for . look after yourself too its easy to get worn out dealing with the emotional stress.

Its the confusion im struggling with. When shes thinking im her daughter and talking about our special bond she looks so happy. I dont know weather to play along with it to be kind or if thats causing more harm than good

thats a tough one, will she remember what shes said nxt time she sees you. i trird challenging mum when it first started but the community mental health team advised to play along with things as she wasnt able to be reasoned with . its the same now mums in a care home as she is unable to look after herself but constsntly talks abt getting back to normal and finding a house to live in but they adivise to just say we will see how you feel no rush etc