I have to learn..I can't bring mum back into my world....

[saskia]

I hope you know what I mean about this.
My mum has mixed dementia. Sectioned earlier this year & now in a care home.
She has settled, of sorts, we have a good few weeks, the last week, not so good with her increased agitation and been in a really foul mood.

But I carry on with trying to engage her. Encouraging her to knit, even though she loses interest after a while. Bringing in a book ( mum was an avid reader) I know she doesn't take it in, but it makes me happier for that brief minute when she picks the book up & reads the blurb, saying it sounds good.
More often than not, I'll find it stacked with the others in the home library.

Taking her out for lunches, to the shops. For a short while she seems to enjoy & then tiredness , sundowning?kicks in & the agitation starts. But for that short while it's like I have my mum back, picking up apples & examining them.

I can't help fussing over her..today my husband actually told me off & to leave her alone. I was cleaning her clothes ( you know dinner stains...I know ' old' mum would hate having stains on her!)
Brushing her hair as she had bed head! Sorting through her drawers making sure she has enough knickers & they are HER knickers...you know what I mean.

Xmas is coming.....all along I have said she is coming to mine for dinner, the home is wonderful but we may have many years of mum not being able to get out. Today she came to mine for a cuppa ( we had been on a drive as such a lovely day)
Within half an hour, I could see she was getting aggy...but I selfishly wanted to have mum in my kitchen like old times...I started showing her new clothes I had bought to see if it would spark an interest. It didn't.

I have to learn, mum has this new smaller world, but I am struggling massively with this.

I know I'm a control freak, I honestly thought mum being in a C H like make everything rosey....oh dear, so not the case!

Thank u for reading, I guess I needed to get that all down.

Sas xx

 

[canary]

I understand sas
As the dementia progresses their world gets smaller and smaller, but it is hard to let go of the "old" mum and relate to the way she now is.
I, personally, dont think there is anything wrong with tidying her up, brushing her hair and sorting through her clothes - I used to do all of those things for my mum, plus I used to give her a manicure. I think, however, you havent yet taken "on board" her reduced abilities. When mum could no longer read I used to bring in the books she loved from her childhood and read to her. Getting her to knit for a while (even if she cant maintain it for long) gives her something to do in the moment. She might like large piece jig-saws (with only a few pieces), or looking at old photos.
It sounds to me as though she is getting to the stage that she wont be able to leave her care home soon, but in the meantime, dont take her out for very long. Mum couldnt cope with long drives, so I used to take her to places that were quite close - a walk along the prom to see the sea and eat an ice cream, a trip to the park to sit in the sun and watch the world go by, the garden centre to see the pretty flowers, or even (or especially) a trip to a cafe for a cup of tea and cake. As soon as she showed signs of getting tired I would take her back to her care home - usually after about 2 hours, but with time this got shorter and shorter, till eventually she couldnt go out at all

I know you want her with you at Christmas, but this is likely to be a time when everything will be busy, noisy and your mum may well just not be able to cope with it all. A whole meal with the family could well be too long for her and with too much going on. Could you bring her back in the afternoon when it will be quieter and she can get the attention that might not be able to be given to her with all the preparations etc for the main meal? As soon as she shows signs of agitation take her back quickly.

 

[Prudence9]

Saskia, my Mum is very gentle and sweet and I find it hard to come to terms with this too.

I chatter at her (and probably drive her mad), thinking I'll get an "old Mum" response - I rarely do these days and so I get frustrated and angry and then guilty because I know I'm expecting too much of her.

I think this is one of the most difficult things to come to terms with, they are drifting away from us and no matter how hard we try we can't keep them here.

Anticipatory grief, it's a killer isn't it.

Just keep on putting one foot in front of the other, we'll enter their world if we can and hopefully bring them some comfort when we do.

Good luck and sending you support xxx

 

[Prudence9]

Canary, thank you, such good, practical advice.

 

[Tin]

Learning all the time and the big lesson for me is that I cannot enter her world. I cannot begin to understand why she does the things she does. I have to leave her be. We still go out each day, but time spent out is getting shorter and shorter and when we get home one thing no longer holds her attention.

It has been a hard decision but I have decided not to accept a Christmas invitation from friends, it will just be too much for mum. We managed at their home last year and I did enjoy myself, but not this year, it will be a quiet one at home for mum and me.

 

[marionq]

I have tried when things are calm to ask my husband about his feelings or what seems to be going on in his head. "I don't know" is his honest reply. It isnt fair to dig any deeper because he really doesn't know what is happening. His psychiatrist has a lovely gentle way of talking to him and he will ramble nonsense to her too so it's not just me.

We have to accept the person we knew is changed for good and that is so hard. My daughters are still coming to terms with that. Fortunately my grandchildren still remember granpa playing football with them and boxing and reading them stories. When he falls asleep over Christmas dinner at least they have that.

 

[lilaclady]

I too have had to let go as I wanted everything in the care home to be "just so" - It took me a while but mum as she is now doesn't know/care that she is wearing someone else's clothes. The care home are great but mum wanders from room to room helping herself to things. Mum can no longer read, knit or follow a tv programme - she too gets agitated if she is taken out of the care home and want to return to the familiar. I have had to realise that I can't control how mum is now - she is clean, well fed and safe - she is on the whole content and this has to be my comfort. When she went into the home I bought her all new clothes as nothing she had fitted or was wearable - I had a mental picture of what she would wear with what and how she would like dressing in the new stuff - the reality was /is hugely different from my imagining - she will wear anything that takes her fancy - whether it's hers or someone elses.
She is now having accidents and wetting herself - this I find very upsetting but luckily for mum it doesn't seem to worry her too much - yesterday I was informed that a new male resident and mum have been kissing and she has been sitting on his lap! This is so unlike my mum but this too I have to accept as a part of this dreadful disease and allow the carers to do their best to manage the situation.

 

[DeMartin]

I wanted mum to have a pretty room with her own things around her, nice bed quilt, ornaments etc. Reality, all her possessions are in bin bags, stacked in a corner of her room, her prized (lockable) desk is empty except for the sale catalogues from Saturday papers. It’s her choice, I try never to go in her room, it’s bleak, like a hotel room. But it’s her way

 

[Tin]

I wanted mum to have a pretty room with her own things around her, nice bed quilt, ornaments etc. Reality, all her possessions are in bin bags, stacked in a corner of her room, her prized (lockable) desk is empty except for the sale catalogues from Saturday papers. It’s her choice, I try never to go in her room, it’s bleak, like a hotel room. But it’s her way

I remember adding something like this to my thread a while ago. When mum first moved in with me I gave her my bedroom because it was the largest, overlooking the garden and very sunny and furnished really well. 4 years on and it is just not the same, to me a very sad room, but not to mum, all she seems to notice is the bed.

 

[ndeossa]

Sas, I am so sorry that your interaction with your mum is not what you anticipate. This has to be very hard, I know dementia is a progressive disease but I don't think we are ever ready to see our love ones lose themselves. I hope you that you can find peace and comfort in your own life for unfortunately there is not much you can do for you mum other than visit her and show her love and kindness when you do visit.

 

[Linbrusco]

Saskia my Mum has been in a care home 16 mnths.
First 7/8 mnths we were able to take Mum out to my sisters for a drive who lived closer, out for an icecream, or to a local coffee shop or market.
I would wash Mums hair in her bathroom sink, do a blowave, cut her nails, manicure & polish, make appointments for the hairdresser once a month, take in new clothes, shoes, chocolates etc
Decorate her room, flowers, cards.....

I think all this gave us a semblance of normality, in a life tipped upside down, when it came to our Mum...all the things that she loved or loved to do.

The last 7 months have been the total opposite. Mums dementia has declined considerably, and she is now on an anti psychotic.
All thats left in her room, is a bed, drawers and a chair. All personal possesions, broken, destroyed, lost or thrown in the bin. You could give Mum flowers and she could care less. Same gies with any new clothes or shoes.
I have had to give up washing her hair, and doing it myself. Taking her to the hairdressers which she always loved is a mission. I have had to give up cutting her nails ( only the care staff can manage it) sometimes I can put polish on.
We have only managed to take Mum out 3 times in the past 5 months alone.... anxiety/incontinence issues.... she refuses to use any "strange" toilets. Only in her room at the care home.

The only real thing we have left, is sometimes Mums humour can sneak through. We do what we can to make a joke, to see if we get the same response as old. When we do its magic.
Even Mums conversation is limited to 5 or 6 word sentences.
Christmas Day this year we will not even manage to take Mum out or home..... this is quite upsetting for us all, but if we did we would be doing it for ourselves, not for Mum.