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 guys, its lovely to have somewhere to vent!

The consultant urologist who managed to catheterise dad had to use his 'secret weapon' to get it in and told him no one else will be able to get a catheter in. Interestingly, the urologist knows me in a professional capacity and I'll be seeing him next week so will thank him.

Dad had had a day of it as mum vomited all morning, so he took her to the GP. Not their usual one, and he did a mini mental state exam and showed dad the score. Which was 2
GP said he felt it was all getting too much for dad and that he wanted social services involved and phoned them there and then. They'll be round today.
And the attendance allowance forms have come and the carers centre are sorting out a time to come and fill them out.

So, bad night for dad, but things are moving. And he didn't argue too much about me sending for the brochure.

I thought maybe I should let my brother know about all this, but if he phoned them, he'd know. So stuff him.

Oh CMOT, that must be very difficult for you all, I'm sorry. FWIW with. Your brother personally I'd send a quick text or email telling him. I'm working on the principle these errant brothers will need to live with their consciences and we will always know we did the best we could. But that's just me at the moment and don't quote me on it when mine really pusses me off again.

Mum got into the car clutching envelopes today and I knew trouble was coming, could see one was the mail redirect letter. However she also had a letter confirming her council tax exemption due to person in property having severe mental impairment. That letter, the one I asked under no circumstances to go to her. She thought I had told the council those words so you can imagine. Thank goodness we were going to the memory clinic, the nurse was excellent and really defused the situation.

Mum now thinks post redirect went on so she didn't see that letter, has told me to take it off. Brother agrees to leave it and I'll repackage post to her after I've seen it

I also have a rubbish older brother who seems to think because he lives two hours away he cannot do anything. He rarely rings and does not help in anyway at all. I now don't bother to ring him with updates. If he is interested he knows how to use a telephone !

That is rubbish of the council to send that letter to your mum even though you explicitly stated that they shouldn't have you spoken to them yet?

Having read the thread, I am sorry for all these families struggling with looking after ill parents.

I am not in this boat yet, my parents are both early 60s. But I live about 4.5 hours drive away from them, as do my 2 brothers. Obviously I don't know what will happen, but I imagine caring for my parents in any situation will fall mainly to me as the only girl.

I'm trying to persuade dh to move to another London commuter town nearer to my parents - a 3 hour drive is the best we will get. My children are 1 and 3, and obviously will find it much easier to move to another area now before school starts. Is this a silly idea? I just hate driving, it's dangerous, and if things go wrong I need to be a bit nearer.

Mine to be fair is always at the end of a phone but I don't think he gets how wearing and soukd destroying it can be. I did ring the council. They are apparently definitely changing the address to mine and I've asked for an apology letter that Mum has requested. But they can't undo the damage can they. I'm very cross in a resigned kind of way.

Deliakate, I don't know the answer to this I'm afraid. But I think now would be a good time to talk to your brothers and say to them what do they propose will happen if there is a problem with your Mum and Dad. Don't wait till there is a crisis an make it quite clear you will not be doing it on your own. Would there be any chance of your parents moving ? My Mum followed me down here which has helped no end but there was just her.

Deliakate, tbh I wouldn't move unless you were moving to with 30 minutes of your parents and you knew they'd stay. I live 90 mins from my parents, 60 min from their main hospitals and thats as bad as 3 or 4 hours tbh - I can't just whizz round there when they need it.

Your parents may stay well into their 80's (PIL are 70 and 75 and very well, friends parents are 75 and 80 and hale and hearty), so please don't be too put off by our tales of woe. In fact my GMIL lived totally independantly till she died at 96

How are things going CMOT ?

I was talking to a lady in the garden center yesterday over the hanging baskets as you do. She looks after her parents. Their solicitor advised them to get the Health and Welfare POA, said it's important. She was telling me about this case (apologies for Daily Mail link.

Hi all ...well I got to the end of this week ...finally !! I have been reading but just not up to posting !

CMOT I hope your dad is feeling better now . Have you had an update ??

After my big "low" on Tuesday evening I muddled through and took ds3 for his MRI on Wednesday. He was fasted in case of a GA and had been looking forward to having a picture of his brain .....but things changed when we got to the hospital .

He got quite upset when they put the cream on his hand to numb it in casse of GA and funnily ...refused to confirm his name ...and used his brother's middle name instead

But to cut along story (and a bit upsetting on my side !) I talked to him and my brave little soldier did it without the GA !!....The bribe.....

If he did it 1st time we would get home quicker I would not send him back to school for the PM and he got longer on the X-box ...

Good old x box !!

Though I did have to take him for his bloods as well which he hates(don't we all !) and he made a fuss there ...but to honest he does have to have about 7/8 vials taken !

Anyhow a migraine started so boys had a take away pizza ..while I curled up in bed

Thursday I was still feeling yuk ...so booked a taxi for dad and I to go to our "all day " visit to the hospital ...he has a card that gets discounted trips ....and his wheelchair goes straight in .

Friday was bliss ..no faffing around wheeling him to the car ...painfully watching him hold on to THE PLASTIC DOOR HANDLE THAT WILL BREAK IF YOU KEEP DOING THAT moment !!!

No heaving his chair into/out of the boot (I am only little !)
No dropping him off at drop off...then driving around for 20 mins looking/waiting for a space.....then going back to drop off yo collect him after as this hospital do not have passenger wheelchair acsseable places ....(phew!)

I have said this is what we are going to do now ....lots of arguments ie he would rather give me the money than the taxi driver and stuff....he was/is oblivious to how difficult doing this was to me .

But I have been firm and so has mum ...so it is taxi's from now on !!!

Alzheimer's appointment .....we saw a nurse ...who then got called out to an emergency for all of our time slot !...she came back and said she did want to do a new memory teast but we have to go back in 4 weeks for that as there was no time now !!

Got meds ...uped to 10 mg as he has had no side affects

So not really sure on "improvement " side of things

Just anther month to wait

Wow ....now you know why I did not have the strenght to post till now !!

Oh just to surprise you all ....neither brother has phoned to see how we got on

to you all

Should say ..he gives me £20 to cover petrol....the cab came to £22 round trip !!!....and me not having to "do "the trip ....PRICELESS

Bizzey, good news about the taxi - sounds so much better than you having to do it.

Any news on your Dad CMOT?

Wynken - so crap of the council to send the letter to your Mum.

Another exhausting day at the weekend. Mum has finally realised that Dad is not going to get better. She was a bit down. It must be so hard to realise that you man you fell in love with over 50 years ago is never coming back. It is kind of like death by a 1000 cuts - body still functioning but the mind is slipping away. Cruel really.

Bizzey, that day makes me feel exhausted just reading about it!

Dads been OK, and has managed to keep this catheter going. Mum had a couple of good days at the weekend, and now dad is all 'oh, I think she's on the up now, she just needed to decide to buck up' which is heartbreaking when you know she'll be back to 'normal' soon enough

CMOT Glad your dad is feeling better .

I feel for your dad in his comment ...mum was like that when I said they had upped dad's meds..."oh well he will be fine now won't he ..and he won't get any worse...he is going to get better "..I did not reply

She said something to me the other night that I cannot even post on here ....it made me so upset and angry.

Hospital for ds3 tomorrow (again)

Funny thing is they share the same birthday and I just feel they are always at the same hospitals...almost undergoing the same departments ...

Like the M&S double expresso though

Wynken ....need to get the proper form for my dad ...did you apply by "it's" name ...bad it got sent to your mum though ...I will deffo need it sent to me ?

I'm really sorry for everyone going through the mill right now. It is a very cruel disease.

With the form Bizzey I emailed the Council explaining she had been diagnosed with Dementia and they emailed the relevant form for me to me to print, I think it's exemption class u or something like that.. A doctor needs to sign it (the memory clinic kindly did ) and you need to submit a copy of the Attendance Allowance form. I took that plus the POA in so that they had everything and could definitely send it to me. She promised there was no way it would be sent to Mum but I guess whoever processed it forgot to change the address to mine so it went out to Mum. I hope all ok at the hospital for DS3 tomorrow.

Hope its all OK today Bizzey.

I have to share this with you all, because I need to write it down and no one else will get it.

Last night, a mug got smashed - no ones fault, the dog has a cone on atm and caught it off a low table. And I burst into tears and couldn't stop. Because it was a mug mum bought for me 10 years ago just because she'd seen it and it made her think of the cat we had then.
So a bit that, but also that thing that you know that apart from dh, theres no one to just buy things for me because they know I'll love them. No one to think about birthdays or christmas presents with love. No one to send a little card/clipping from the paper or wanting to hear about ds's school life.

Sounds so pathetic, but I'd just like someone apart from DH to care about us enough to show it.

Pity party over, back to work and trying to work out whether to book ds a dentist appointment for the afternoon of grandparents day at school so I can legitimatly take him out of school, rather than him not having anyone there again.

Oh CMOT - I so understand. I have a long list of things I will never do with Dad again - even though he is still alive -which when I am feeling tired and down never fails to make me cry. Big hugs to you & yes, book the dentist appointment!

Hope hospital with your DS is going ok Bizzey.

CMOT, I see that totally. I've found with this it's the small things that floor me unexpectedly. They seem to lurk in the shadows then emerge to catch you unawares. I would personally have no qualms about booking the dentist.

CMOT I agree wuth wynken...we are so good ,practical,sensible on the big important stuff that I don't think we realise how much we are holing in and that things that might be trivial to someone else ....affect us more.

I wasn't just a broken mug to you .....it is the memories that mug held for

Agree with "early" dentist appointment ...and a nice afternoon for you both to do something fun

DS is fine ..thank you all for asking .It was a minor issue of his persistant long lasting nosebleeds.He has had it cauterized today so hopefully that will be the end of them.

You must also be exhausted. So much of what is goingon is beyond your control. A good weep over a mug was probably inevitable and better than letting rip with health professionals, DP, or DC.

Perhaps the distress is that you no longer have DP to look after you, even small things like buying you a mug you would like. You are looking after them now.

I will not be the only one wanting to buy you a new mug. And something for the other brave kind and capable people who are sharing their stories. Most important though will be to look after yourself as best you can.

Best wishes to all..

I need to rant. I worked today between dropping off DD and walking the dog, picking up and delivering Mum's new dose Meds on way home. Wrote all up in care book only to find she has more tablets left than she should.

Worked and just completed last bit just as left to get DD, usual stuff with them. Then had to take something to Mum's. Whilst there had to get Sky working again, explain a bill to her, find invoice from gardener. Came home, wrote letter to bank re account fee, transferred money from her account to mine to cover chq for gardener, file invoice. Explain why she can't come to Italy this year and nod along when she says she is going to Thailand in two years time.

Then the bloody phone goes again. Wynken my coffee hasn't arrived. Yes it has Mum it was delivered last Wednesday and you told me it had come. No I didn't, it's not here. It must be it's a half kilo drum of coffee. Well what type is it? Nescafé Gold Blend as you said. Well it's NOT here. Ok Mum shall I order you another drum? Yes please.

Off to Amazon to order coffee, ring back to say will be there on Thursday. Oh I think I might have found it on top of the kitchen cupboard, I'm just getting the stepladder. No Mum do not under ANY circumstances get up the ladder (TIA's mean dodgy balance).

Get in car with some coffee decanted from my coffee jar. Find big stepladder in hall, little one by kitchen cupboard, one intact Mother. Go up stepladder to find two empty drums of coffee. Look in coffee cupboard. Find coffe drum, stifle lots of swear words. Go to door, Hang on Wynken, can you make the light go out on my mouse ? No I can't . Well you're no use. Night Mum.

Return home, take blood pressure medication and heat wheat bag as gallbladder attack imminent.

Wynken. Can you have a glass of wine or will that make gall bladder worse?

Yes probably but I think gallbladder is actually going to behave, the wheat bag helps. I am armed with Gardeners World Magazine and DH and I are going to watch Dexter.

Here's some virtual for anyone feeling the need.

Oh Wynken, have a few or . Or just a quiet lie down in the bath.

Sorry to go on last night. Gallbladder behaved but I feel like I've done 10 rounds in a boxing ring today , am so shattered.

I've realised that although she's sounds and looking better she isn't really. She doesn't understand bills , she can't turn off one switch to reboot Sky, she's losing things and doesn't totally grasp the dangers of things. If I hadn't called her back last night to tell her the coffee was on order I think she'd have been up that big ladder. She was also making plans for two years time to fly out and see my brother - said she didn't think she'd be fit enough next summer so would have to be year after. So basically she's lost her insight into her condition again,

She can stay where she is but with support. And that means me beng on call. If that's what it ha to be I need her in part of my/a house do I can walk through a door, not have to jump into a car each time even though she's very close. Emailed my brother last night, he's strangely absent . Don't know the solution to this as am totally knackered . Taking DD to Orthodontist now and will keep pondering .

You don't need to apologise here. This is the place to let it all out Wynken.

I don't have a solution for you though. Were you looking into accommodation for her with more support?

I am not surprised you are knackered, or that CMOT is weeping.

I have only just, this week, emerged from an exhaustion that lasted 6 weeks. I felt really bad, as not only did I ask DH to hold the fort whilst I spent the best part of four months focussing on my mother's needs but then became completely idle, spending time catching up with friends or just hanging out. (The RA exhibition yesterday, plus lunch in ChinaTown with a friend, Henry Moore and Rodin last week, and a nice half term trip with my son to look at University campuses.)

This week is much better. I feel really energetic and have started tackling things I should have done ages ago, even to the extent of having a new stockpile of home cooked food in the freezer.

My guess is that my exhaustion stems not just from the crisis but the three years of anxiety when I knew something was wrong but was unable to do anything, and the resultant regular clashes with both DM and DB.

I know I had it relatively easy. My mother could not return home and so we were in a position to impose a solution on her, and she had a good range of choices. The rest of you must be shattered. I wish I could organise for you all to have six weeks off both family and parent duties. I can't so vent away. Having been there, or close to there, I can offer full sympathy. Unless you have plans to be in London when I could extend to lunch and/or a matinee.

I did my weeping in NatWest. The counter staff knew my mum and were very very kind to me. I dont know if that is the sort of advert they want. The bank you can weep in.