Night times

[Tender Face]

As those who have 'got to know me' here over the last few months will know mum has complained of and been investigated for various unattributed aches and pains over the last 12 months ...

There has always been some element of 'I've had such a bad night' (and yes, I admit, I've always held in the back of my own mind that her alleged problems through the night could be more about being lonely and frightened on her own ..... ) and symptoms mysteriously 'disappear' during daylight hours - especially when company (including me) materialises.....

I'm not saying I have discounted mum's 'complaints' - but having had every part of her body either scanned/probed or both over the last few months ..... I feel I have become somewhat 'complacent' about her gripes. Until today.

I reported to the psycho-geriatrician a while back that mum complained of a 'pressure' in her head - at that point we (professional and medical imbecile) were expecting the CT scan to prove vascular problems - since negated. Psych-ger told me this was a common complaint with many of her patients ... although nothing conclusive medically as to why .....

Mum reported this morning that she had had a 'terrible' night..... the pain in her head and neck were so unbearable she couldn't even cry ..... (at this point she is clutching her stomach in illustration..... ) ... she went on to tell me that when the pain comes she can make dimples in her forehead, her head is so swollen ..... and (her word) 'squishy' - now the pain had gone her forehead was 'back to normal' ......

I'm taking this all in as best I can - thinking what to rearrange tomorrow to get a GP home visit/alert psych-ger... etc etc when she tells me she has written down all that was happening to her in the night..... now given we have just gone through the 'writing Christmas cards' rigmarole - when I have wept buckets seeing that mum can't write her own name properly... I am presented with sheets of paper in her perfect, beautiful handwriting describing her feelings and thoughts through the night..... and worse (or better?) she could tell me .... 'I know I can't always write anymore ... but when the pain comes I can.'

Any ideas?

Sorry to ramble...

Love Karen, x

 

[Lucille]

Hi Karen

Sorry can't offer any solutions to this. Maybe the psych-ger can. I don't understand the writing bit either; how awful for your mum (and you).

Just to let you know am thinking about you both. Let us know how you get on.

 

[Skye]

Dear Karen

What an awful situation. It sounds as if your mother is using emotional blackmail to manipulate you, but on the other hand you can't really ignore it in case there really is something wrong.

Is your mum depressed? That's always worst during the night, as I'm sure you know. If she is able to write so well during her attacks it doesn't sound like any problem with the brain, or even a severe headache ....... I know I couldn't write anything during a migraine attack.

I'm not helping, I know. I've no medical training, and you have to be sure, but bear manipulation in mind as a possibility.

Love,

 

[Nell]

Karen, just wanted you to know I'm thinking of you. Have no idea what could be wrong, but it is obviously 'real' for your Mum. Hope you can get an answer soon. Hugs. Nell

 

[jenniferpa]

Hi Karen

It's a bit of a mystery for certain. One thing that occured to me is to wonder whether it would be a good idea to turn the whole thing around. That is, think about why your mother can't write in normal circumstances. My mother, for example has damage due to a stroke, but other people may have visual distrubances or tremors or something else. It crossed my mind that if her writing difficulties were due, for example to visual problems, perhaps what she is experiencing is real, and increased pressure from this swelling is affecting her optic nerve. On the other hand, these things may not be connected at all. The swelling may be a delusion, the pain may be something like TMJ syndrome and the writing, well I have no idea about the writing. I have to say, though, that having had a child misdiagnosed with a psychosomatic pain condition, I am very unwilling to discount anyones report of pain. Neuraligia can cause excruciating intermittent pain, but I don't know about swelling. Could it be postural? After all, it happens at night, when I suppose, she's lying down.

Just some thoughts

Love
Jennifer

 

[candymostdandy@]

Mum constantly complains of aches and pains. Some days it in her neck, then her arm is swollen, then her legs...

There have been times that I have given her painkillers after she has put on a particularly good "performance", and by some miracle the pain disappears almost immediately, I've even given her sweetner tablets which has done the trick..

A couple of months ago I took her to be checked over by the GP and was found to have some indication in the blood that indeed when she complained of aches and pains it was probably true (I think it was myalgia), and the GP was about to prescribe steroids for her,........while GP tried to explain to mum that she was prescribing steriods for her aches and pains, mum's concern on this particular visit was her "sore lips"...(she thinks it unnecessary to drink water, its a stupid idea and often compains of dry lips)..

after further discussion with the GP it was decided not to prescribe steroids and just to carry on with the pain killers as required, ....

the pains last week were in her neck and back of her head, I've re-adjusted her pillow and she hasn't mentioned it since...

 

[Lila13]

I found massage with something sweet-smelling generally helped.

Mostly it was attention my mother craved, and of course at night she was "all alone" for hours and hours as I refused to sleep in the same room.

Lila

 

[DaisyG]

Just a note to say that II too am thinking of you.



My husband compalins about head and neck pain too..... when in bed...
He 'sometimes' wakes up in pain saying that his head feels like a 'bowl of spaghetti' (is exact words).
His neuro physio (not that we've seen her in months now)... thought it may be a trapped nerve that is pinching when laying down.

Not too sure about the writing as my husband struggles a lot with that now.
if he 'is made' by me, to write a card then the 'words' are all put on one line... generally squished in at the top !!
No caps etc... all lower case.... and very very tiny....


Will think about ideas in the day, and try and get back to you.

Take Care

DaisyG

 

[Lila13]

At one time it seemed to be a different illness every day.

"I think I've got measles". She didn't have a temperature so I asked if she had any spots, she hunted around and found one, I put baby lotion on it and "made it better".

But a lot of the time they were flashbacks to illnesses and accidents long ago.

She managed to get a lot of doctors to do a lot of tests over the last few years, and to get an awful lot of repeat prescriptions without check-ups too.

Lila

 

[Tender Face]

Thank you all for your thoughts.....

Relayed messages to the Psych-Ger and Memory Team this morning - waiting on return calls...... got an appointment with GP this afternoon.....

Of course, I'm concerned but I have to say my hubby read the posts last night and picked up on Skye's comment..... and challenged me as to why I might delude myself the emotional blackmail she has metred out to me all my life should stop now......????

So here I am, the day dedicated to mum once again - (who is as excited about going to the doctors as if we were going for tea with the Queen)...... my son let down on his promised 'first day of school holiday outing' .... part of me even daring to think that this better HAD be something ... then hating myself for even thinking that way.....

Sorry ... will up-date you later - and hopefully in a less cynical frame of mind....

Karen, x

 

[Tender Face]

Where does this leave me?

GP has diagnosed the pain problem as the already known osteo-athritis combined with muscle spasm (known high anxiety levels for many years) and suspects being able to make 'dimples in her forehead' to be hallucinatory...... postural, yup, massage as a treatment, yup ..... chasing up the MATS team re Aricept.... ahead of him on that one....... (not decrying mum's wonderful, patient GP - but this afternoon, it actually helped me to see his own patience stretched with her.... he reassured her that she has had every possible scan and investigation - including the vascular scans even I had forgotten about amidst the 'fog' of so many hospital appointments).......

Sudden ability to inexplicably write? GP as incredulous as me......

Well mum persevered, as she does, realising GP has discounted anything of 'new seriousness' .... 'Well, actually it's in my throat ... my back ...... my stomach' .... then - she sprung on me and him how she is concerned about her hair going thinner.......?????

My first reactions as I come back here to share what I can is that my mother is so grasping for attention I am not doing enough.... but what more can I do? I am doing my best to support her remaining independent in her own home - at the expense of my marriage and more importantly my child ..... when I suggested I went and called for her prescription before the chemist closed tonight (just more painkillers) she told me 'Not to bother - you can do it tomorrow' and I confess I practcially screamed at her .... 'I'm NOT at your beck and call ... tomorrow my car is in the garage, I've got workmen coming to the house.....' and I do have other things to attend to beside you expecting me to drop everything at whim..... as nicely as I could I told her I couldn't guarantee what time I'd get to the chemist tomorrow - response 'Well I don't really need them anyway. It's not as if I'm going to take them.'

AAAAAAAAgggggggggghhhhhhhhhh!

What I have been reminded of by posting this thread (for which thanks again to all who contributed) is that my relationship with mum has not - almost ever - been idyllic .... that much as I love her and will do all I can for her I have to recognise she is (and always was pre-dementia) an 'emotionally selfish' woman ..... who never did put her needs before me even as a child ....

Phrases like 'reality check' and 'finding balance' are at the forefront of my thinking just now..... I can feel yet more New Year resolutions coming on...

Sorry, that was a right old ramble.....

Love and thanks again, Karen, x

 

[Skye]

Oh Karen, you poor thing. It's so hard to stand up to emotional blackmail, especially from a mum. They know all the strings to pull!

But you must stand up to her. Your marriage and your son (and your own health) must be your priority.

Do you think your mum is angling to come and live with you? If so you must make it clear that it's not on the cards. Don't mention marriage, she'd probably be quite happy for it to fail so she could have your full-time attention, but stress the effect it's having on your son.

You must be firm with her. (Hard, I know), but you have to get it sorted while she can still understand what she is doing. You have to decide what time you are prepared to give her, and then tell her calmly and quietly that your son is missing out and you have to give him more time.

Tell her if she wants more attention she'll have to get carers in.

Have you had a carer's assessment yourself? You're entitled to it, you know, and you may get Crossroads for your mum because your health is suffering, and that would remove some of your mum's focus from you.

It's going be really hard for you, but it will be worth it: you and your mum will both be more relaxed.

Do I sound terribly hard? I'm not. But I know what damage a manipulative mum can do, and it really does improve the relationship to set the guidelines.

Lots of love, Karen. Take care of yourself, your son needs you.

 

[jenniferpa]

Double ditto what Skye said, particularly about the carer's assessment.

Take care

Jennifer

 

[Lucille]

Hi Karen

I second what Skye has said. I can really empathise with you as I know how much you're doing and, we are all the same at times and it's easy to keep running, like a hamster in the wheel: trying to catch on to other responsibilities as they fly past - in this case your son and your husband!!! I always feel incredibly guilty when I don't see mum, but geography dictates it. Perhaps your mum is swinging it a bit as she knows you do everything you can for her. (I am lucky in that mum and I have always got on and have a strong relationship; however, that's not to say it hasn't been tested over the past 18 months!! )

As I mentioned in my post the other day about adapting, I did really enjoy the sit down on the sofa with the glass of wine! Chin up, lass. Perhaps it's about time you cut yourself some slack.

I can recommend Marquis de Grinon, a yummy smooth red, £5.99 from Tesco!

 

[Margarita]

If anything like my mother she never understand your commitments to your family, and always make you feel guilty , no matter how you put it in words , there be a time in your future with your mother , that you won’t react and feel so guilty , when you get on with your family , because your understand where all this that feel like blackmail is all just part of the dementia, she don’t really mean it , and don’t that just make me feel guilty that mum can’t do that anymore.


Because they jump a stage in a blank of an eye, since mum had a bump on the head, I find my mother can not describe where the pain is coming from , she says her arms. Before the bang on head , my mother use to complains of pain running down her side of her leg, then it trun out that she has arthritis on the knee.

Because of the disease , I feel that , mum does not really know where the pain is coming from , when I had sciatica, I was told that the pain is not in my foot even if I feel it there , it come from the brain nerves travelling down the leg . so it make me wonder with dementia / AZ would they not be more confused anxious , with all that is happen in there brain . where the pain was coming from .

So they pain is real to them, just like our is , but find it hard to communicate it to us and make us feel guilty because we hate seeing them like that , its hard to let go and get on with your life and still you mother does not undertand makeing you feel guilty , I have been there , it passes beacuse they go on to another stage and you look back and say all I could of done was my best and I did , I could feel guilty , but I know I done my best . It sounds like you are Tender Face xx


may be of no help typeing the above , but just wanted to share