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

Thanks for sympathy.

It's a long way and I have an inconvenient meningioma that means I need to sleep for half a day if I travel more than 30 miles or so.

Heigh Ho . The human condition is not happy in old age.

I havw invented something, however, that might be of use to others in a similar position. Ma is nearly blind and has terrible short term memory.

So I bought her a small notebook. And everytime she asks something , eg when did I come in to hospital, why am I here, which day am I going to the x, I ior. someone writes it down in black block capitals for her, one page to an issue.

We practised putting it in her bag. She sort of knows there is something there that will help. And then in theory someone gets it out, and they or she can read it.

I don't know if it will really work but she feels better having it and knowing she can refer to it.

And she knows she can put-down things she needs to remember or wants to do. So the feels that there us some support .

Don't know if it would help, bit might.

Oh goodness, that makes things even harder, I am sorry. The notebook is a good idea, great idea. Hope it does make her feel that bit safer.

Mum is refusing to sort her garage and spare room when my brother comes. He says he'll speak to her but I am beyond caring to be honest. It's DS's last day at current school on one of the days we had scheduled and DD will need picking up the middle of the next day. Yet again my gallbladder is protesting. If it isn't that it's a migraine and I think I have a UTI brewing.

I think my body is saying it's had enough and I am listening. Have emailed the SW to say I am not well enough to take her for the Day Center visit this week and have increasing work and school meetings so can't for foreseeable future so best to cancel. Also said to put her visit back down to 30 mins as no point having the extra if she won't use it. Said about call from care agency re flannels and complaints plus about the stepladder coffee incident. Said with this one she's refusing to be told the stepladder isn't safe for her to climb with her balance or to have them removed from the house.

My logic is this will all stay on file and when time comes where we aren't coping with her at home it's written down.

Sending good wishes to all. Do look after yourselves and I'd be inclined to think that if it s a choice between a child s important event and another visit to ailing parent, show your kids the support they need on the day.
I ve been thinking a lot about the kind of parent my father was. My brother s mental illness has made me evaluate dad s parenting. Basically dad was a terrible listener, and a person who didn t have much control over his obsessions and rages, and me, mum and my brother paid a price. When stressful things happened outside the home dad didn t really want to know and we didn t really feel the home was a safe place to express one s emotions and needs. My poor brother has been a victim of this and it s ironic he is now living with dad and can t escape him. Anyway I took brother to the psychiatrist last monday and he has been put on strong anti depressants.
Wynken I know just what you mean about having to protect yourself from your mother s outbursts. Dad kicked off a couple of times this weekend and it was unpleasant. I had already resolved not to tackle certain issues ( for example the utter folly of his considering buying a car) which I know make dad angry. I feel I am doing a lot to safeguard him ( and society by averting dangerous situations involving him) but I also need to look after myself, having him screaming and ranting at me is not acceptable.
Dad came to our home yesterday and stayed till this morning. Left again before anyone woke up, leaving his bag and glasses behind. Also didn t bring his meds, but packed his bag to the rafters with soft drinks and chocolates ( who needs aricept when you can have hyperglycaemia instead?). Well my thought for the week, is I m going to do my best to really listen to my kids, and not let my Dad fixation mean I m short changing them.

Hello all. Sorry to hear of the ongoing sagas. Particularly hope they get your Mum sorted out Mrs FW.

Another exhausting weekend. Ended up going to my parents on both Saturday and Sunday. Only did a brief visit on Sunday - but that is still 3 hours round trip each day. Feel bad for DS as he missed out on something on Saturday to go to them. Think I must start moving the DCs up my priority list again, as I can't put our lives on hold for potentially the next 2 years.

Feel like I am getting more and more tired as each week goes by.

My brother refused to do the two days of mowing - which I think is probably a good thing. Mum has to realise we can't go on like this.

and all round.

Mums memory assessment appt has come through. At the most inconvenient hospital imaginable and that dad can't take her to as he can't walk from the disabled parking, and its such a large place that getting to the department is impossible. I can't take them both as pushing even one wheelchair is hard enough (I only have one functioning arm), so it'll just be me and her which will be fun.

But apart from dad having a bust up on the phone with my brother (hadn't phoned for 3 weeks, was 'a bit busy' apparently) all is going fairly smoothly this week, and their only medical appointment of the week was ok apart from mum still telling the spine surgeon that her knee hurts.

And there was a new Andre Rieu DVD released this week, so dad is blissfully watching that over and over. I might not like Andre myself, but he gives dad a huge amount of pleasure, so for that I'm very grateful

It's quite hard when you look back at some not great parenting and realise that due to dealing with parent with Dementia, your own parenting gets compromised. I'll join you Bob in listening to my kids. I need to start being properly available and not half listen as they do realise when I do it, I know they do.

PostBellum, not surprised you're knackered. Can you say you're not going up the next couple of weeks at al, to give you all a break? I agree it's good your brother won't mow the grass. Maybe if you both stop helping for a bit she will realise.

CMOT that's really difficult with the memory clinic, ours is in a very accessible place not in a hospital . I'm sure it wil be fine if you take your Mum though and maybe better in a way, easier with less people in the room.

I am on week 2 of being back to work and it's a bit easier this week. I had a big gallbladder attack within half an hour of getting off the phone to Mum on Sunday afternoon which lasted till midnight. Then slept but woke up 3.30am when it started again. It's strengthened my resolve that I need distance for a bit. Next week we found out DS's new teacher and who he is with at Middle School, there's a meeting tomorrow about his residential and loads of bits going on. My brother does still sound like he is actually coming over and said he'll talk to her about the decluttering. I told him I think the coffee episode was possibly her sun downing so he wants to buy a light box.

That's good Wynken. With my brother's mental illness I have spent a lot of time being terrified my DSs will grow to have the same problem. But now I just realise it's in my power to give them the best start possible. Really listening and being receptive to them, and seeing the way they interact (DS1 bullies DS2 occasionally and I've been able to pinpoint how he does it and reflect back to him). I do still occasinally blow up at them, but not nearly as much as I used to before I resolved I didn't want to the kind of parent my father was.
He rang this morning and said "so, when are we meeting up? after him being here this weekend and me going there last Monday. I just said not for a while Dad, I've got lots on. I'll let you know when I'm coming.
Having said that i may actually have to go on Thursday to get my brother's repeat prescription, but if I do I'll be in and out as fast as I can. Taking abreak form Dad and brother will be not only good for me, it'll be good for my kids too.
Post Bellum- hope you have a break from parental duties this weekend if possible? Good luck CMOT with mum's assessment. I don't think health services realise how much is expected of the relatives of elderly, frail or demented persons, and how much of an achievement just getting them to an appointment can be.

Well, after last weeks coffee stepladder incident there were a few peaceful days until last night. Just watched an episode of House and was in bed at 10.30pm when the phone rang. Mad scrabble to find it, Mum on the end asking me to go over. Changed my top and shot over. Got door open but chain on, was calling her but no answer. Went to car to get trusty bolt cutters that I carry with me (goodness knows how I would explain that to police), was eying them suspiciously and hoped it was as simple as it looked. Door was open when I got back, Mum in loo.

She finally came out, obviously having wet herself, said she had passed out. Didn't know if she had a TIA, rang 111 who called Paramedic. DH had to come over with my gallbladder Meds and blow up bed. Paramedic checked her over and said he thought she had fainted getting up from loo, she seemed a bit better but asked me to stay the night. Suddenly realised that then wouldn't be there for DH in the morning who's currently gong very low with his blood sugar in the morning to extent there is a risk he will fit. Also Gallbladder was threatening to kick off. Pretty much burst into tears and the Paramedic said I can't go on like this, she'll need to go somewhere.

Managed to get a little sleep.rang GP to get me Meds for UTI as won't go. Tried to ring the flats in NH, the sodding phone line had fault and wouldn't work. Rang Mum and obviously woke her. She asked for Carer to be cancelled. Did cancel for today only. Rang Memory Nurse, told her what had happened and burst into tears. She said either Mum or I need a week away. To stop Galantamine as looks as if she just doesn't tolerate these types of Meds but in two weeks could look at the 5mg of Aricept. Rang SW, she's off sick.

Spoke to brother who agree absolutely can't be in position where this happens to me at night again but will not put her in a home if she refuses. I ranted, he put phone down, I cried again (bit of a theme) and actually thought about ringing GP to see me. Text brother about Meds then spoke to him again with both of us calm (he's moving house today). He thinks she has a virus as there's one doing the rounds and wants her to try Meds again. Mum has said she won't so said he would have to sort that with her and Memory Clinic.

He agrees she needs respite. Flat places phone still not fixed so rang place friend's Nan going into today for respite and went with DH to look. Think would be perfect for her for a week. Meanwhile the cleaner rang me, couldn't get in, had to say leave her. Rang her later and she was quite confused. Thought cleaner was carer from agency, who had called her etc. Doesn't want Carer tomorrow but I insisted legs must be done or will flare. First said she would go for respite then said not. We're trying again tomorrow. None of this helped by last night affecting her hearing. I think we have to be firm and insist.

If I can just get through to bedtime and sleep I'll be ok. Have found bottle and card for DS to take to Cubs. Some kerfuffke about who will be with who in Dorms on residential which is completely beyond me. If you have read this far, thank you.

What a nightmare Wynken - I really feel for you.

On a very practical & rather harsh note - do you think your brother would be quite so "I'm not forcing her into a home" if he were doing what you are doing? Is there any possibility that you could throw your phone down a very dark hole and just not be available for a week & leave your brother to pick up all the calls?

Thanks. No he doesn't know, until you've lived it you can't I don't think. The phone went and DH said to him on Skype oh no sort of thing. Brother said it's just a phone call but as DH said, it's never just a call -it's the perpetual threat of it being THE phone call about my Mum or his Dad.

I have thought of just not answering but I feel I should try to push the Respite through if I can. If she does that she might realise that she would be better off somewhere. If there is a total refusal to go then I think I am going to have to stop answering the phone.

When I was crying earlier in between calls and couldn't stop, I wondered if I was depressed. I don't think I am, I'm just shattered and I guess that's not an unreasonable reaction in that context. DH and I haven't had a proper weekend just the two of us for nearly 15 years now. The only good thing about last night is that neither of the DC's seem to have heard anything, they must have been asleep. We'll see what tomorrow brings. If by the end of the day she isn't booked for a week's respite next week then tough action needed. I would go away but it's stuff to do with Middle school transfer and I want to be here for that.

Hi wynken, very sorry to read this, didn t realise things were so bad. You must be just shattered physically and emotionally. I hope I m not blundering in with unhelpful advice, but I would be inclined to take a back seat/ not answer the phone for a week or so if your mother refuses to go for respite. Everyone needs a break sometimes and I have found with my dad that if I just disconnect for a day or two it is easier to re group, re charge my batteries, and quite frankly ignore him for a few more days. It s just the first day that s hard for me. I have unplugged my phone because his twice daily calls " so when are you coming?" / " when am I coming to yours" were just getting on top of me. I spent last weekend looking after him and my kids.. Previous to that I took last Monday off to take my brother to the psychiatrist. I just felt I needed a break.
Sorry if this is not helpful, I know your situation is different and your mum's needs are higher. My dad " just" has alzheimers, but is otherwise quite well physically. But still this relentless being responsible for a non competent adult is just so gruelling sometimes.

Wynken, I think you need to be really firm on this - your mum Must go into respite for at least a week otherwise you are going to end up needing respite yourself by the sound of things. Would your dh have a firm talk with your brother and tell him that at this rate you won't be able to support her at all?

Thank you both. Thing is DH and I both work for my Brother so it's not easy, double edged sword really. DH got up to check his blood sugar, it woke me up and I can't get back to sleep. Mum was sounding a lot better in the evening and her hearing returned. I think it was another TIA so we can expect weird behaviour again shortly.

I have decided that both our landline and mobiles will be turned off 8-8. She has a pendant. If she presses it they will ring me then get no answer and ring emergency services. She'll get help, I get peace. I'll ring tomorrow and push respite. But if she won't go then my Brother won't force her, though will try to persuade her. Then it will have to be taking the being unavailable approach .

Thing with my brother is he hates things out of his control. I tell him I am getting UTIs and migraines due to stress, he says I am badly dehydrated. I say Mum's had a turn due to Meds, he says she has a virus. Bit like when we said we were worried about Dementia, he got cross and said she was just getting older.

I guess tomorrow, well today, is another day. Let's see if I can get her to agree to go somewhere.

Wynken - sympathy on all issues really. I don't work for my brother thank heavens but he does exactly the same. It is some kind of mental block, where they just refuse to accept the reality of the situation. By downgrading everything to a minor illness, it saves them having to actually address the issues.

Annoys the hell out of me but in your situation it must be even more than annoying.

Virtual hugs & hope that today may be less awful for you.

wynken....poor you .I agree with everyone else you need a respite. Tell your brother you are having a week off to re-charge and he will have to do all the running.

Mind you ...it will be sod's law that your mum has a "good" week and nothing happen's and he can't understand the "fuss" you are making !!

I have had this with my brother's...."He is fine ...just getting older" thing,,,,,

err no ...you don't "see" him as mum and I do ...you pop over ,say hello and sit in the garden with your phone and fags!!!....and then dad goes to bed !

On a slightly lighter note ..to give you all a smile I took dad to his urology/catheter appointment yesterday .

I am sat in a room with dad and the male ("wee-wee" as I call him) nurse.
I am sat in a room with said nurse and dad in his wheelchair.
I am sat in a room with the nurse holding a plastic penis between his legs telling my dad how to hold his penis correctly (after showing him how to wipe the top of it ) and inserted a catheter into large plastic penis.

It was a very surreal moment !!!!!!! single for 4 years now ..so had forgotten what a penis looked like

I went out of the room and dad tried it. he said it was ok .nurse want him to do it 3x day.....(after a wee dad is still left with 400 + ml in bladder....cannot get him to understand this...."I did a wee fine this morning"............(me) "no you didn't.....your bladder is not empty!!)

Then having to answer my mums question "Is it just for today that he has to do this" !)

No mum ....It is for the rest of his life

need a coffee now....still can't get that image of the plastic penis out of my head.....didn't help that the nurse was kinda nice sexy !!!

Take care of yourselves x

If its any consolation the worst times may in retrospect be the funniest.

Wynken. Bursting into tears is a sign your resilience is shot. You know that. Plus you are putting your energies into enabling both your mother to remain in an unsustainable position and your brother to pretend nothing is wrong and that he can stay on the other side of the world making decisions for you.

My guess is that any conversation with siblings is subject to all sorts of history. Is your brother older or younger? Was there any rivalry? etc.

We all have to wear two hats, that of a "manager" and that of a relation. The manager (POA) needs to make the right decision, independent of any emotion the relation might be feeling. However your brother may not be able to separate the two, especially if, as so many brothers seem to, he wants to avoid accepting there is a problem.

(Actually I prefer the word Advocate as this better describes the role when dealing with SS, hospitals etc.)

My experience was of several awkward conversation with my brother over the three years when my mother was struggling, where I was looking for support and validation, something he could not give as he could not acknowledge there was a problem or such a problem that he needed to engage. Plus a little frustration on his part that when he did offer "advice" he felt I did not listen, true in that he was not there and so to me his advice was not informed by reality. Plus I suspect my mother was more likely to tell him she was fine, and tell me she had problems.

I would be tempted to set options down in writing. If nothing else it will clarify your own thinking. You might even discuss it with a friendly health professional. You and your husband then send it to him acknowledging that it is slightly formal but both you and your husband feel that the time has come when decisions need to be made. Not making a decision is a decision. Your mother has dementia and cannot be relied on to take everything on board. She is understandably anxious and likely to react to decision made over her head, but this is the time when in her own best interests you may need to pull together and do this.

Option 1. Stay where she is. She needs over night care. Hugely expensive, and issue of whether she will accept. You have done as much as you can but have got to the stage where you are going to have to draw boundaries for the sake of both you and your family. This will involve you unplugging your phone at night time, leaving her reliant on the pendant and emergency services.

Option 2. The cottage. If one is available might need to move quickly. More chance of her then settling, than if her health has deteriorated still further. Plus danger if you wait, you lose it as an option. Company, overnight support. You then are freed up to do her admin, provide emotional support and will not be on call. She will be safe.

Option 3. Care home. Too early. Will be institutionalised. Finance? Finding a good one.

Great if you can then say that you have spoken to health professionals. Recognise it is difficult. Say, if appropriate and as constructively as you can, that if you don't hear from him within a week, you will go for the second option. (He may not want to be responsible for decisions that have the capacity to go wrong.)

My guess is that respite will force the issue. They could well then say your mother is not safe to go home. They may say she is not able to cope with the cottage either which would be a pity.

Bizzey. The image of a plastic penis is one that I could do without.

300 mile round trip yesterday for a 15 minute health appointment. Ended up stopping at a service station in the early evening for strong coffee to get me to the end of the road. Then a school social event. Did not intend to drink but did. Home to a panic as DD had some GCSE course work to hand in this morning. (I will leave out the details but lets hope her marks have not suffered too much and that she has learnt not to leave things till the last minute. Some guilt on my part because I have not been good at following what she needs to do.) Could not sleep. Feel rough. From hearing other stories I see advantage in not living nearby. It forced us to find a sustainable solution. However it takes a full day to recover each time I go down. Time for some more coffee. Tomorrow is another long trip taking DS to a University Open Day. I am so lucky the Public Sector Redundancy God shone on me a couple of years back.

Bizzey, thank you for the plastic penis tale - it made me chuckle. Bet no one ever told you to expect that as a possible life experience when you were a girl!!!

Some good advice from needmore.

Am bracing myself for my weekly visit tomorrow. Mum sounds very tired and distracted when I speak to her on the phone & Dad is on antibiotics for some odd swelling in his foot. I don't care if the grass is up to my armpits, I will not be mowing - that is for sure!!!!!

Love the plastic penis!!

Well what a day. DH woke up 3.30 to check blood sugar, I woke up. Had stomach cramps then eventually did fall back asleep for an hour. Whilst awake I decided I would start turning the phones off at night and emailed this to my Brother. Took DD to school plus walked dog . Saw email before from Brother saying about Night Carer and decided to read later. Was chatting for ages in the carpark after Dog head butted some poor guy in the nuts when DH rang asking for key code safe. I thought he said Carer had called and couldn't get in.

Shot over with stinky fox poo dog in car. Arrived to find DH's car and was expecting to find DH on step as chain on and bolt cutters in my car not his but he was in. Pushed door and heard Mum shouting 'Don't let her in' obviously I went in to find Mum on living room floor in T shirt and knickers, clearly having issues with her Tena Lady. She'd slipped getting out of bed at 3am and couldn't get up. She didn't want to push button and have strangers out as she thought would happen and didn't want to wake us. So she waited until 9am before ringing us, having worn herself out shuffling on her bum. I wasn't there and DH wasn't in a position to answer so she waited half an hour I think and tried again

Total nightmare getting her up, she was floppy and is sodding heavy. Thought at one point we weren't going to be able to but finally managed, my back knows about it . Got her to loo and Carer turned up. She was fabulous and did Mum's legs whilst Mum on the loo. I went to ring Brother and explain and said I hadn't turned phone off, honestly , she didn't ring or press button (which thank goodness she has backed up. He said can we get her into respite today, I said think so but don't know if she can walk yet, might have to call someone for help.

Rang place we looked at yesterday and they said come in 1.30 so chucked things in a suitcase. Whilst waiting she was sayng she would need a night Carer when she came home. We were gently suggesting that might not be good idea as issue of getting her up, need proper equipment. She was saying night Carer was what she wanted.

Stacks of traffic but mad it. Staff were brilliant and gave us space but kept us going with food and drink. Friends were picking up the DC's but DH went home after a bit . I went down to conservatory to say hi to my friend and her Nan which was surreal as usually we'd be standing in the playground picking up the boys at that time ! Mum wanted me to stay so we agreed I'd go when they brought up supper. She looked very relaxed in chair by the window basking in the afternoon sun watching the comings and goings in the carpark.

Before DH went she asked him to go home and ring up about the flat at the other nursing home as she realised going home would be out of the question. She said she felt surprisingly at home and comfortable. Think she was a bit shaky when I left but hid it well. I'm going tomorrow afternoon as need to take bits but might take DS as it's the village fair in the grounds so would be a good distraction. We'll take two cars then DH can come back.

I am utterly shattered and I stink but feel a huge sense of relief. Maybe it will hit me tomorrow but I know her going was absolutely the right thing to do. She hasn't been down yet and seen the communal rooms which are lovely plus the gorgeous gardens you can sit and look over from the conservatory, there's a lake with swans. So after yet another long post here endeth a chapter in the saga of the Wynken family and another one opens, hopefully one where my Mum starts to have a much better quality of life and we get family life back .

Heres hoping that she settles there well Wynken. Have a nice bath and an early night, safe in the knowledge that there will be no calls tonight.

Congratulations for getting through it all so far and steering her to a safe place. I hope you have a massive rest now, avoid anything burdensome as much as possible and have some seriously well earnt me time.

I hope the sun shines tomorrow and she has a lovely day.

It sounds as if last night was pretty traumatic for her as well. You both deserve some rest tonight.

Thank you all very much. I didn't sleep well, think I had adrenalin still going through me. I think it might take a day or two.

It occurred to me that we should ask SS for a 12 week disregard. When she wanted to go into a home before they said no and increased the care package. I shall say this time though that her refusal to summon help when she could have and ladder climbing show she is a danger to herself. After proper talk with DH turns out she waited till 9am , rang and got him. She asked for me and when he said I wasn't there instead of saying what happened, she asked for me to call her. After half an hour I wasn't back and hadn't heard my mobile when DH tried ringing me. She rang again and only then (having been stuck on the floor for 6.5 hours) did she tell him she needed help.

When my brother spoke to her he said (as I already had) that she must promise she would ring the bell in future, she refused to promise. We also think her fluid intake had dropped to pretty dire levels and her climbing stepladders is still fresh in my mind. I'm hoping that this will be enough to make the case as them contributing to the 12 weeks would make big difference in how quickly the house needs selling.

Here's hoping we all have a peaceful and calm weekend.

Wynken...hope you are having a good/better day today

Wynken, wow. Get some rest now.

Well, we are in turmoil.

Ma had a pacemaker fitted to see if it would make a difference to her blackouts. She was weepy and scared before, and short term memory terrible. But came our if it fine, then had a blackout on the loo in the hospital. All systems go.

Anyway, she was almost back to her old sparky self yesterday, which was great, a bit confused but ok. My DSis and I were both up there.

Today, disaster. Beside herself. Distraught. Playing manipulative nasty games on my sweet DSis. Saying she did not want carers. Life was hell and she,wasn't allowed to cry. Why did she deserve this. Etc

Yes, it us horrid, no memory, macular degeneration etc.. but there is also an element of supreme selfish unpleasantness as well. " you are all so stoic. Bit that is because you are wonderful. I am not wonderful. " pause for violins.

I sound unpleasant and cynical. But I see how she plays my sister, albeit sub consciously. And it makes nd furious. I refuse to get involved to such an extent, not because I don't love heg, but because I am not such a nice person and because I have responsubilities to DH, ill, Ds, and because I can vent here.

I am going to see if we can love her down here.. it might kill her but the way she is going on she will kill my sister otherwise.

Advice ? Do you think I could get s respite red out of her area? Ie here?