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Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

(998 Posts)
CMOTDibbler Wed 01-May-13 09:04:17

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

PostBellumBugsy Wed 22-May-13 14:26:37

Needmore - step away from wikipedia! grin. Your post make me chuckle though, because it evokes how bonkers trying to care for a parent or parents with dementia really is.

Needmoresleep Wed 22-May-13 15:11:47

Or how bonkers it makes us...

bizzey Wed 22-May-13 17:23:01

need grin thank you for making me smile todat !!

post he is on Donziapal ??sp I do not have the packaging but it is a named one on the list.

He did sat and sun as AM's (first dose's ) then I put him om to Pm's on the Monday. He had a "bad day " on the Wed which even he admitted to ...major breakthrough...but he seems to be ok now .

I think he is accepting he might have good days and bad days ??

PostBellumBugsy Wed 22-May-13 17:29:32

Thanks bizzey. Dad definitely takes his meds in the morning. I might suggest evenings, as the night time waking is getting so bad that Mum is thinking she may have to get a carer to sit with him 2 nights a week, just so she gets a whole night of sleep every now & then. I'll double check what he is taking & if Mum is nervous about me recommending the change, she could talk it through with the GP too.

bizzey Wed 22-May-13 18:02:24

post...from the info I got from the support nurse it is a trial and error type of thing ,but remember if he switches from eg a thur am to a fri pm he is going a bit longer without his meds in his system which might affect him for a bit ...might need an eye on ....but mum is so pleased not to be hearing "small cup of tea and a bit of cake please " at 11.30 pm !!!

MrsFrederickWentworth Wed 22-May-13 20:03:52

We asked around the village to find a helper, as that's the way that two relatives had also done it.

But I did think of seeing if the age UK befriending service would do it, or asking at a local primary school, because it would suit a mum in terms of time or asking at the local drs surgery. You just want someone sensible, reliable and discreet, pref someone who is connected to someone your DM/ DF knows.

WynkenBlynkenandNod Thu 23-May-13 21:05:26

That is a good solution getting someone in to sort bills. I'm pretending that aspect isn't happening until after half term. Someone has just text inviting DS to Legoland in half term which is a huge help.

There's quite a collection of us with parents recently on Meds at the moment then ? And chugging off to the Memory Clinic. Galatamine going well so far but very early days.

Had a call from the Day Center today about Mum going. It definitely reminded me of starting DD at nursery -'will she be happy about coming here' er no probably not. She's going for a visit to start with.

We had a lovely day at Chelsea yesterday, shut away for hours surrounded by plants, totally removed from the world of Dementia except for one stand in the Great Pavillion. My friend's Grandmother has been really ill and also just referred to Memory clinic. We both needed a break and it did bring it home to both of us how important it is, if possible, to remove yourself from the whole thing for periods of time and switch off from it.

bizzey Thu 23-May-13 23:07:41 agree that we all need a break from thinking about dementia for a while ....we are 2 weeks in to dx..and it is not helping that it is dementia awareness week grin

Adverts and advice everywhere ..!!!

Bit of brother bashing now ....Little bro has not even gone to see dad or mum since our news but was driving near our house the other day and dropped my mum home ...he did not go in as he had things to do confused

Yes my brother has a walking disability as well as my dad but he can bloody visit them ok when he is skint !

He has dismissed mum and my concerns previously as dad just getting old (ahhhhhhhh)

I phone him and said he needed to see them (he is their golden boy wink )

He admitted to mum tonight that there was something "different " with dad ..

Have not gone into to much detail with mum as she is still shell shocked ..but....a bit of support earlier would have been nice instead of making me and mum out as a pair of nagging old bats !!!

Where's my brown paper bag ?????

WynkenBlynkenandNod Fri 24-May-13 07:24:46

You have my deepest sympathies Bizzey. My brother dismissed what We were saying for the best part of three years saying she was fine when he spoke to her. But that was on the phone, she tries hard with him, he hadn't seen her. Then it got to the stage whereveven he couldn't ignore it and the other health professionals had noticed so head had to come out of the sand .

But so far, still no sign of him, he's saying September now. First it was Feb, then April, then the summer. By staying away so long he's made it really hard to Come back, I know he's terrified of what he will find. He is the golden boy too must it must really hurt my Mum that he won't come.

2 weeks is very early days after the diagnosis. We're two months now and I do feel that I have come to terms with it a bit more for now. The fact that it will probably be a long haul is sinking in and I've had a couple of moments wher I thought I was totally losing the plot so I'vevrealised self preservation is vital or else it becomes all consuming. I love gardening and am fortunate to have one so try each day to do a bit.

I also try to have daily moments of what I think of active appreciation where I take a moment to reflect on the fact I am getting enjoyment out of something, whether it be a song on the radio, a bird in the gardens a cuppa in peace, something the DC's say. That's slipped a bit recently so I'm going to do that again. Sounds cheesy but it meant I'd go to bed knowing that I'd enjoyed something that day, even if for just a minute.

PostBellumBugsy Fri 24-May-13 10:42:15

Taking small moments is really important - you have to keep reminding yourselves that there are pleasures to be had, even if it is just a cup of tea in the garden.

Work is what keeps me sane. In a way I'm so thankful that I have to work full-time to keep a roof above mine & the DCs heads, because it gives me an excuse not to be at my parents every day. That sounds so awful, but it is true.

I dread the long & exhausting day I spend at my parents every weekend, so I really take my hat off to all of you helping out more regularly.

whataboutbob Fri 24-May-13 13:39:58

Hi everyone- I like the thoughts about the importance of taking time out. WBN I totally agree that removing yourself physically AND mentally at regular intervals is so important. I also find gardening really therapeutic. I have an allotment and I reflected to my counsellor that my allotment gets better every year and rewards me for my efforts. Whereas my Dad just gets worse every year. This sounds brutal and of course it's not Dad's fault, but still. I remember the feeling of horror I first had with my grandad, when I realised every thing I did would probably be negated a few weeks/ months down the line when his Parkinson's inevitably progressed. I know my efforts with Dad aren't wasted, on a spiritual level because the stuff I do is supportive and enhances his quality of life. But I can't win against the Alzheimers, whereas on my allotment I am in total control (except when blight strikes).

bizzey Fri 24-May-13 15:55:18

Something has been going around in my head for a while and I think I need to "say" it here as it is the only place I can.

Dad has lots of other medical issues as well...but none of them were going to be the cause of his death.

Even when mum got breast cancer 16 years ago we knew some people/some cancer's could be cured ...which her's was (TG)

I need to say this and sorry if I offend or upset anyone ...but I suppose mum and dad are feeling like a death sentence is hanging over them at the moment....we have been told some thing that there is no cure for ..

Mum got cancer and was told have a lumpectomy, nodes removed' a course of radio and we have a chance ....this is just ...take these tablet's and it might slow it down ..

Your thought's on my feeling's/thoughs ???

I am not a negative person and am not having morbid thought's bet my mum is though

sorry just needed to say it .I know it is all totally does anyone know if they are going to have a heart attack in 5 years .....

Stopping now cos I am getting silly.....btw I am not crying or emotional or anything ...just feel wierd

WynkenBlynkenandNod Fri 24-May-13 18:37:28

My allotment's taken a bit of a bashing with Mum's diagnosis and the weather.

Bizzey you've just articulated what I think we're all struggling with. Bob says it in her post with 'I can't win against the Alzheimer's ' That's why I think however much you are expecting a diagnosis it is still a body blow as it suddenly hits you what it means. My Dad had cancer and successfully had it removed. But as you said with Mum, that is it.

One of my very good friends from school is down here as well. Went to see her shortly after the diagnosis and was explaining it to her. She said 'oh so basically she'll have a stroke or a heart attack'. My immediate reaction was 'yes if she's lucky' then the implications of that sunk in and I thought I don't want that it happen. But then au thought but I don't want her to deteriorate so she doesn't know anything. Then I realised that basically we're screwed whichever way you look at it.

The whole thing pervaded my every waking thought for a few weeks. But I think in the short time I've starting to have a degree of acceptance, possibly topped with a degree of denial as she's better than she was a few weeks ago after last TIA. I've said to DH I'd rather it was cancer. It is that moment when you realise that it is undeniably a terminal disease, it's a gutter. But then weirdly life goes on but with a new, different normality very slowly emerging, tinged with a bleakness that gets you out of no where.

It's still fairly early days for quite a few of us and there's no sodding manual. A lot of people caring for people with Dementia don't have children at home but we do and I guess it means we'll have to write our own rule book to get through it. Thank goodness for this thread where there is a place we can say these things.

bizzey Fri 24-May-13 18:51:06

OHHH sorry got to let it out as it is bugging me how our "ripened loved one's" are treated and if I was not there.....!!!

Took dad for a bladder and kidney ultra sound today....well did not take him he met me there in his scooter as it was easier then doing car /wheelchair and stuff with a full bladder...he has problems with walking and to be honest who can walk/move properly with a full bladder !!

We were asked to go into a cubical and nurse to take off all clothes ,put them in a bag and put gown on .

I said could he leave his pants on as I was helping him undress,

She said (not bovered like ) he can leave his trousers on (slight difference in ALL clothes to just top half ?)

Got into room...she said I could go now ...I said "no" I would help dad get on the bed ...and stay (depending on how "low" they would go for the bladder I would avert my eyes).

He got onto bed you are wrong ..move down ..

He pushed up ...

No you are still wrong on the bed

FFS... I got dad's legs and pulled him to the corect position

What if I wasn't there ...he is in a mobility scooter movement not good

I know I am talking about dad's mobility here but his understanding was not taken into consideration .

Common sense ..if someone does not understand (regardless of anything) you change how you phrase it ??

OHHH dear I am in a funny mood tonight are at mums and enjoying my quiet time to go up there soon and no internet..I will have to watch t,v !!! (and listen to my mum !!)

MrsFrederickWentworth Sat 25-May-13 00:40:31

Bizzey, it's shit, isn't it. Because actually if the rest of you is fine and can continue to eat and drink, you can just go on and on. But the you person isn't there. And there is nothing yet that can be done.

My ma has macular degeneration, epilepsy, cardiac problems, emphysema, but the worst is her failing mind. She is frightened of death and today her greatest friend died, very peacefully, but that is of limited comfort. And the knowledge of this friend's death may strike her anew several times. She rang 5 times to tell us.

Needmoresleep Sat 25-May-13 10:00:51

My mother's physical health is astonishing. The dementia specialist she saw two weeks ago confirmed that she is likely to live longer than her parents and they lived into their 90s. This in some ways may make it easier as I dont have to get round the dementia to ensure that my mother is receiving vital medical care.

However it leads inevitably to thoughts about the meaning of life. When does my mother cease to be my mother, etc. Also the fact that I am likely to spend more of my life responsible for my mother than I will have spent responsible for my children. Plus if dementia strikes me at the same stage as it struck both my mother and grandmother there will be very few years in which I can enjoy a care-free, in the literal sense, retirement. (Hence the atttachment to Wikipedia and Google.)

I think I am over the worst of this now, or at least the worst of it in the current phase of the dementia. My mother is happy and safe in a very sheltered environment. There is scope to ramp up the care as her disability becomes more pronounced. One day I will receive a phone call saying she is no longer safe in that setting. At that point she will move to a home. At that point she probably wont realise what is happening. And, very fortunately, she has the resources to pay, and I am able to manage those resources with this scenario in mind.

The emotional side is also getting easier. Partly because as she gets settled the mood swings become less severe, though Aricept seems to have sparked off another round. To a very large extent, and other than regular rows about access to a cheque book, she seems unaware of the fact I have taken over her finances, so the scope for conflict is reduced. Other than medical appointments, I am equally able to withdraw from her day to day routine. She is able to socialise, pursue activities, go to church etc, with support where she needs it. (Eg a cooked lunch, a carer to prompt for pills, a cleaner.)

The really difficult time was when she would be appalling to me one day and then all smiles the next. When I realised she was not quite sure who I am. The distrust which arose from use discussing something one day and then her forgetting it and accusing me of imposing things on her. I also hated the three years when I knew things were very awry, yet could not get her to agree to do anything. It was not only the low level background stress but the fact that we could not have a conversation without some form of dispute. Plus the real possibility each time she did not answer the phone, that she was lying on the floor unable to move.

At the moment there are more pleasant conversations than non. I am now back to being able to have a "How are you phone call" without having to delve into her personal affairs. There are relatively few areas of conflict, and on these as far as I am concerned I have medical and SS confirmation I am taking the right approach so there is no need for a discussion. In the moment, my mum is still my mum, and we can have a good conversation even if she wont remember it.

I dont know how I will feel when my mother loses both her conversation and the feisty spark that makes her who she is. The idea of a decade or more of 300 mile round trips to see someone who might be little more than a shell is not attractive. But neither is the idea that I might simply "warehouse" my mother in a home.

MrsFrederickWentworth Sat 25-May-13 18:05:34

Need, you have described much of our situation accurately.

My mother's underlying constitution must be like an ox.

I love her very dearly and our relationship in the past has been excellent, which is why this is so distressing now.

CMOTDibbler Sat 25-May-13 19:30:30

Need, I guess when the time comes for a home, you could move your mum to one close to you so 10 minute pop ins are possible since at that point she won't be interacting outside the home.

My mum is pretty frail - her spine is crumbling and compressing nerves (and it seems like the surgery didn't work this time), she is very arthritic, and she has type2 diabetes with associated issues. At least she won't be able to wander <weak grin>

As its dementia week, and dhs firm have the Alz Society as one of their charities of the year, they have a thing going on where people can write about their relatives with dementia. He said it was heartbreaking, and he could see in some of them how mum will be.

Needmoresleep Sat 25-May-13 23:03:43

I am very sorry to hear about the surgery not being a success. Especially given how difficult the stay in hospital was.

WynkenBlynkenandNod Sun 26-May-13 14:08:09

CMOT, I'm sorry the surgery hasn't worked. I guess I am lucky with Mum, she's relatively healthy if you ignore the fact she has TIA's. Needmoresleep has summed up a lot if how I feel too.

There was a sandwich moment yesterday. Day 1 of half term and DS woke up and threw up. Repeat a few hours later but after that session Mum's on the phone, had at ordered her Tena Lady, no I hadn't . Logged in and did so whilst cuddling DS then one handedly emailed brother to ask if he could tell her when he rang tomorrow I've ordered her Tena Lady.

No apparently he can't as she's his mother and he doesn't do conversations like that. Well I'd rather not but it was better to persuade her to do that then deal with the devastation using bits of tissue paper was causing before that. Then today I'm in the middle of the allotment minding my own business and he rings. I said I was just talking about him to friend, I've a book on whether he makes it back to UK this year. Weak laughter his end. Asked when I'd be back. I said a time. Was a bit late then was getting texts from DH to say he'd ben ringing. I ended up being half an hour late, just got back, text to say he'd gone out, work emergency . I have PMT and the realisation of how utterly ridiculous it is that he hasn't seen her is dawning on me. I know and have known it is ridiculous but just how ridiculous is sinking in.

bizzey Sun 26-May-13 14:56:25

CMOT... sorry surgery did not work this time ...but I did have wry smile on your comment about the wandering bit smile

Wynken..."he does not do conversations like that "...!!!

I had the same chat with golden boy and balls ffs!

He said he would be too embarressed to talk to dad about "that sort of stuff" it was up to me to explain to dad where the catherter goes and how !!!

And that he has a hydrocyle due to fluid in his balls(scrotum) which is nothing to do with his wee wee!!!!

I think dad is going to have to be catherterised 1x week poss 2 .They have mentioned him doing it ...I said have you seen his hands.he cant even do up his buttons !! Rhumatoid Atheritis)

I will NOT do it !! Let the man have some I will push for a DN to come in ....doubt if dad have ever used a condom in his life so to be fiddling with a catheter ...!!

Getting my head around things better today .

Waiting to be contacted from this friend/buddy thing the AS organise.
He does not want it obviously but I think he will enjoy the company when it starts

Mum now.....well that's a whole new thread grin !!!

WynkenBlynkenandNod Sun 26-May-13 15:04:53

Yes mine is the golden boy, never mind the fact she probably doesn't remember what he looks like. Why is being female seen as having to deal with these things, are we supposed to have some innate knowledge that errant brothers don't have ?

I think Bizzey you are very sensible to push for the DN, better all round. I have said I will not be doing anything physically with Mum. I think you have to be firm fom the start. A friend is having to sleep at her Grandmother's 2 nights this week when she's discharged from hospital. I think this is a big mistake, her Aunt's doing the next two nights but if she's not happy after that what happens then ? But she's recently lost her Mum and I guess there's a limit how much fight you have in you at some point.

topknob Sun 26-May-13 15:13:48

Hi just seen this whilst scrolling through. My mum isn't elderly (59) but she does appears to have Alzheimer's. We went to memory clinic a week ago and waiting for ct scan appt. as she wouldn't cope with an MRI. It is difficult some days but she lives down the road to me so I am always about.

WynkenBlynkenandNod Sun 26-May-13 15:26:23

Welcome Topknob brew Sorry you are here under these circumstances. My Mum had a CT scan back in February. She was really worried about it but it was very quick when she actually got in there. Next stage for us was back to the Memory Clinic for an apointment with a Consultant then onto Aricept which meant regular trips to the Memory Clinic so they can check it's not affecting things like heart rate.

Down here we also get someone fom the Memory Advisory service keeping in regular contact as well.

topknob Sun 26-May-13 15:44:02

The dr did say she would have to go back to the memory clinic for results and she may be suitable for medication which will keep her brain where it is now for longer. Not sure how the ct will go though !

Thank you for the welcome. It is nice to be able to discuss this with people who do know what I am going on about as my do listen however they do not know the process.

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