After respite..the reality hits...

[Soobee]

Hi gigi,

The key word that jumps out at me is resentment. I find when resentment creeps in it is time for change. I can't speak from experience in terms of a partner but I did leave a job I loved because I had grown to resent my boss so much over a period of years. It was the right decision for me although it caused enough heartache at the time.

You know you have to make the decision yourself but please note that not one of us on TP has said that you should keep things as they are.

Personally I would not look after my own husband in the situation you describe and I love him more than anything. I would still love him but strongly feel that it would be too much for me to cope with emotionally and probably physically too.

Big hugs and hope that you get the time and space you need to work through your thoughts and come to a plan of action. xx

 

[gigi]

I've tortured myself for a long time with the question 'what if the roles were reversed and Ken was my carer?'

Well Tina, I know the answer to that from where I am. Eric would not have coped and I'd be in care.

(I'm out in the kitchen making tea, by the way..!) But waiting for the klank of the zimmer or the shout to ask when I'm coming back.

I feel as though I'm sneaking around in my own house..telling lies..and always smoothing things over..but never getting to grips with the reality of the situation. I don't want to live like this..it goes against the grain with me.

Tonight I've noticed that Eric's lower lip is very red and swollen on the left hand side. His left eye is also very swollen , half closed,and he doesn't want me to touch it. It doesn't look like infection. He says none of it hurts but it doesn't feel right.

He still has an awful cough.

I'm going to ring the GP tomorrow and ask for a visit.

Again I'm thanking you all. When L comes tomorrow I'll make sure she reads this thread.

xx

 

[gigi]

Personally I would not look after my own husband in the situation you describe and I love him more than anything. I would still love him but strongly feel that it would be too much for me to cope with emotionally and probably physically too.

Soobee..big thanks.

I left a job that I loved 2 years ago to care for Eric. I don't regret that decision..it was right at the time.

But now...it's all changing. And I'm struggling with these changes.

xx

 

[Helen33]

I'm sure none of this makes sense to anyone else

It makes sense to me Tina and therefore I suppose it will make sense to a lot of people.

Love

 

[muse]

Hi Gigi

All this sounds so familiar. My husband's illness is not as far advanced as Eric's, but he's deteriorated rapidly since Christmas.

I too sometimes ask myself what the situation would be like if the roles were reversed, and I'm sure he would not have stayed around this long (he was depressed for many years before diagnosis but refused help and was difficult to live with - with reversed roles he would have left at that point, as he did his first marriage).

I'm working on regaining some life of my own, slowly, painfully learning that, actually, my life counts too (not to mention my 20-year old son's). And, partly because of all the experiences I've read about here, I'm clinging desperately to my job. It keeps me connected to the outside world and is one area where I'm "good enough". To be honest, the way I feel now, if my husband went into respite and didn't recognise me on my return, but seemed comfortable and settled where he was, I'd be quite happy to just leave him there. Maybe it would do us both a favour. I'm not a natural carer, and can't really give him what he needs (mainly because he won't accept from me that he needs it). But trying to cope with my job and his needs is wearing me out. I need to find a solution before I crack up.

I wish you all the strength you need to reach the right decision for both of you.

Big hug - Kathy

 

[gigi]

Kathy, hang onto that job and your sense of worth. I hope you find a solution soon.

Eric's lip is less swollen today so I didn't phone the doctor. His mobility seems to be worse, but then he's spent the day in his chair sleeping most of the time. He's wide awake now!

The Senior from the Dementia Team failed to turn up.. Well, at least in preparation for her visit I'd written a list of pros and cons which will be handy for the review meeting on Monday with the SW and herself who didn't turn up today.

At least I got half an hour in the garden today while Eric was asleep. Stayed at the front so I could check him through the window...

I'm grateful to all of you who have given your thoughts and replies and support.

Love xx

 

[Skye]

The Senior from the Dementia Team failed to turn up..

That is so infuriating! I've kept checking to see how you got on, but didn't expect that.

At least you've had a better day, and Eric is a bit better. I hope Monday's meeting goes ahead.

Love,

 

[Helen33]

Hi Gigi,

I can't believe that she just didn't turn up without phoning!! Wasn't it a lovely day today and I'm glad you had some time outside - me too

Love

 

[Grannie G]

It`s so disappointing. I hope this person is mortified when she realizes how she`s let you down gigi.

 

[DeborahBlythe]

Oh, Gigi, I'm so sorry that the lady did not turn up. I guess with it being Friday, she may simply have forgotten, especially as she would have been tying up the ends of work scheduled in her work hours. She may simply have overrun with scheduled stuff.. I bet she will be mortified when she remembers.

How are you and Eric today?

 

[gigi]

I'm sure the lady in question will kick herself, it's not like her to not keep an appointment, and she was going to use her own time, so I can't complain.

How are you and Eric today?

Thanks for asking, Deborah! (But you'll wish you hadn't...)

After an evening of what can only have been sundowning with a vengeance, we've slept well..although we've been up since just after 5 thismorning.

For the first time last night Eric was rude and defiant with one of our regular carers..so far they've only seen the nice polite Eric. Eric made racist comments, mimicked his accent was generally unpleasant..in fact nasty is a better word. The carer, bless him, took it in his stride but was visibly shocked at Eric's attitude. He was very apologetic as he had to leave Eric only half ready for bed sitting back in the lounge..demanding more cigarettes.
I backed off too and left him to it. When I went back later he allowed me to finish getting him ready for bed and tuck him in.

At least someone else has witnessed the other side of things.

And another day begins for all of us..I hope it's a peaceful one

It's extremely foggy here thismorning

Love xx

 

[Grannie G]

I`m so sorry this happened gigi.
Illness or not it must have been deeply embarrassing for you and unpleasant to witness.
I too hope today is peaceful for you.
Love xx

 

[Izzy]

Oh Gigi what a time you're having. What a shame about the carer but in some way good because so
done else has witnessed this behaviour. It's an awful day here - heavy rain and misty -same as yesterday. Hope things, including weather, improve a bit for you today.

 

[dillydaydream]

And another day begins!

Dear Gigi - I just had to reply to this as this is just how I felt ten minutes ago when Mum woke (much later than usual)- my heart sank, pulse rate increased and I thought - here we go again! No real reason for dismay - just the thought of two long days without day centres lie ahead. Some days are not so bad but we seem just to be wishing our lives away, just surviving the day. Let's hope everybody has a relatively calm day today!
Carolyn x

 

[DeborahBlythe]

.

Eric made racist comments, mimicked his accent was generally unpleasant..in fact nasty is a better word.
Love xx

Oh heck, Gigi, that's hard. A couple of things occur to me. Once or twice my mum would 'forget herself' and make personal comments about carers or residents who were overweight. And she commented once on a 'tubby little man who kept running around' the home. (She meant the lady manager ) Her normal pre-dementia self would never have done or said anything so outrageous.

I used to wonder if she felt more than usually 'disinhibited' because she was on a mild morphine patch which was always more noticeable in its effects at the point of the week when the old patch was changed for a new one, and therefore, I assume stronger. Has Eric had any unusual change of meds recently?

Also I suppose the skittishness that my mum displayed and the outburst from Eric, however unpleasant, are a sort of attempt to show the world that they can still express an opinion, make a judgement on the world, however offensive we know that judgment to be. Fears of people who are somehow 'different' can be more easily coped with in the minds of people with dementia, I suspect than fears about everything else that is happening to them.

This is no consolation really because I don't believe that it will be possible to 'change' Eric's behaviour any more than it is possible to halt the progress of dementia, however at least it might be possible to see one reason why the outbursts happen.

The AS factsheet on Unusual Behaviour suggests distracting the person and trying to change the subject. http://www.alzheimers.org.uk/factsheet/525

I'd like to think that pointing out that the carer is a trusted and respected helper would be of use but the factsheet says 'Don't argue'.
Sorry to hear your news and hope that today is less embarrassing for you. Could be foggy here too or it could just be my windows need cleaning.
x

 

[gigi]

Hello Carolyn,

this is just how I felt ten minutes ago when Mum woke (much later than usual)- my heart sank, pulse rate increased and I thought - here we go again!

How well I know that feeling, it's not a good way to start the day, is it? At least we can take comfort in knowing that others experience the same feelings of anxiety at the start of another day!

Deborah..there's been no change in medication. I'm pretty sure this is all part of the "disinhibition" that goes with the territory. I'm just hoping that thismorning's carer is a) not foreign and b) not fat..(Eric too has an obsession about fat people, which isn't new, but he generally manages to hold his tongue..)

Could be foggy here too or it could just be my windows need cleaning.

...

Love xx

 

[ChristineR62]

Dear gigi

I think dementia sends political correctness and plain good manners flying out of the window! A few visits ago, I was with Mum in one of the lounges at the home; there were other residents there, and one them had a carer sitting with her. I heard the carer say something to the lady about "That's <Mum's name>'s daughter", to which the response was, "She's a big lump!"

Now, I'm no skinny slip of a thing and I'd be the first to admit it; I'm about 5'7" - and that may be horizontally as well as vertically, as I haven't been intimately acquainted with a tape measure for some time! - so I'm not going to blend in that easily with the wallpaper.

I am sure that the dementia made the lady say what she did - without the dementia, she may well have thought the same thing, and may well have whispered it to a companion, but I doubt that she would have said something that I could hear.

Gigi, I have no doubt that without the dementia, Eric would never have done that - it's yet another unpleasant facet of this horrible disease - but that doesn't make it any easier to deal with, I know.

Love
Christine
xxx

 

[BeckyJan]

Hello Gigi:
I am sorry you have to face the day with apprehension! The sun is shining here so maybe you can have some time outside for a break!

David's quite regular comments about carers or other visitiors is 'she's fat!! I either ignore, smile at the 'recipient' or say to him 'you are not so skinny yourself!'. Mind you just at the start of this he told our eldest daughter she was fat when she was wearing her size 10 wedding dress

Perhaps a showing of Sound of Music will help

Love

 

[gigi]

The sun is shining here so maybe you can have some time outside for a break!

I might if the fog lifts, Jan.. It's still quite dark and damp and chilly here

Perhaps a showing of Sound of Music will help

any more bright ideas?

My little friend the blackbird has just dropped in for his breakfast...

Love xx

 

[DeborahBlythe]

My little friend the blackbird has just dropped in for his breakfast...

Love xx

Oh thank goodness for the blackbird. Impossible to remain completely out of sorts when a blackbird presents itself, I find, at least in my case.

I have just bought a half price bird feeder thingy.. a tall spike from which you can hang individual feeders, fix a birdbath and a little tray. Trouble is it needs to go 16 inches into the soil to be stable and I can't work out how to achieve this.. I bet your bird-feeding arrangements are all ship shape and stable.
x