Am a rabbit caught in headlights!!

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I feel like a rabbit caught in headlights at the moment and am an emotional wreck

My lovely mum aged 83years young has quite literally gone into a kind of freefall since the beginning of the winter nights last year.

Mum is a widow of 40years and has lived alone in her own home for the last 30 years, as all three of us kids have married and moved on to have our own families

Looking back I can see some things that stood out, but just put it all down to old age etc, however last year things nosedived, Mum who is a retired nurse has always kept herself busy doing charity baking / craftworks / Knitting for shoe box appeals / regular church goer / loved reading mysteries and mags / enjoyed tv game shows / big fan of gardening and home grown vegs/ going to coffee shops with friends etc

Mum started to get frail with arthritis and having falls, so we got her a frame to walk around with for support and handrails everything etc, which to a degree she copes with still, we got her kitted out with the call button necklace with the local council social services for everybody's peace of mind.

First she started to complain of loneliness, then I can't cook because of the arthritis ,so stopped, then the quest for life started to flag, excuses for not going places and alienating friends, she had a fall on the uneven pavements outside that shook her up a bit,everything started stopping, no church, no tv, no reading, no gardening to the point we are at is a big flat zero enthusiasm in anything, just apathy. We had an episode where a smoke alarm battery was running flat and we were a bit too slow changing it, to the point it went of in the early hours of the morning, it did get changed straight away, but then everything became taboo incase it set that damn thing of ( Bless her it did scare her) we found out she was losing a lot of weight due to not cooking or getting meals for herself (yet food in the fridge)so the family all pitched in with meals for her ( she wouldn't use meals on wheels due to there being a leaflet enclosed in the welcome pack for the fire service emergency contact details! then it was Im hot/ Im cold how do I do the heating 24/7, then it was Ive just woken up is it night or day?, then it was who is going to sleep with me?, why do I have to sleep alone? unable to cope with washing clothes or general housework, so we took on laundry and got a cleaner in to help, then the continuous phone calls all hours of the day and night about totally random things.Also as soon as it started to get dark she would go to bed and wander why she is awake all night, Bless her xx

Then she started pressing the call button so she was getting taken to a&e for check ups day after day, the last a&e visit ended with an mri scan on her head showing early signs of dementia. At last we have a name.....
GP surgery sent out an over 75 nurse (we had to ask for this)to assess mum, referred mum to healthy minds for assessing ( which incidentally she passed with flying colours!) we had to get another over 75 nurse out to reassess mum who was more in tune with Dementia, she has since diagnosed partial Alziemers/ vascular dementia / perseverance traits and sundowners.

How do we deal with this?
We trialled a care home recommended by the gp as this was a home the surgery looks after, we ended up bringing mum home after 9 days out of the 14, as she was crying to come home, she was ok for two days then was straight back to how she was before she went in, asking us why we took her out as she loved it.........She can't go back because they only really take bed bound dementia clients.........(we haven't explained that to mum, just said she is on a really long waiting list)

We went and looked at two more care homes and she checked herself into the second one there and then ( it was getting a little bit dark outside - sundowner kicking in) and is still there now, but we have endured tantrums and smiles and all confused attitudes (depending on time of day), as mentioned earlier mum was a nurse and had worked on wards and in drs surgeries since aged 17, so is comfortable answering and correcting drs at all times (old memories to the fore) yet has forgotten how to turn cooker on, use washing machine etc. she still wants to come home and can't understand why not. she doesn't understand dementia as this is the topic she never nursed...

Yesterday she broke my heart by "wanting to go back to her home in Lincoln or wherever it is" she hasn't lived there since she left home to start nursing. Im struggling to come to turns with it all,Do we allow her to come back home and try and do more with her there? she will not have carers in overnight due to the 10pm - 7am rota ( strangers in my home phobia), or do we keep her in the lovely care home where she is? I feel so so bad and guilty for not wanting to take her into my own home, am dealing with my own family too.

I am in touch with the local Alzheimers Society who have sent me links to all sorts and the Bucks Carers have given me some info too, just wading through very deep water at mo and needing a life raft to get above and focus on how best to help mum now.

Family is helping especially my lovely sister in Law, without her we really would be adrift

Any support, suggestions gratefully needed

I Love my Mum, she deserves all the help I can give.

Thanks for reading

Carolyn x
Don't feel guilty - if you bring her home, things will get worse and you will end up having to put her in a nursing home. And it will be bad, whatever you do. You've found her a good home... to be honest, that's the best place for her. otherwise you'll get sucked into 24/7 caring and your family will, too. Really - she's better off where she is. There is no reason for you to feel guilty. Her emotions aren't really pinned to what you knew of her personality. Not any more. Much of it is the illness.

I had a friend who looked after her gran every day for months. Her mum got gran into a nursing home - and pulled her out after three days because she couldn't bear the crying and pleading. Within 2 weeks mum had apologised to daughter, who was back having to care for gran daily. It took another 6 months to get gran a place in a good nursing home.

Really, leave her where she is. She's with people who know how to make her safe and comfortable, even if her illness prevents her from recognising that.
Hi Carolyn
IMHO opinion keep her in the lovely care home.
1. Lovely care homes are rare as hens teeth
2. Dementia (whatever flavour)does not improve or get better. It only deteriorates
3. Each change may bring an improvement fo ra day or 2 but then it's usually 2 or 3 steps back
4. Her NEEDS will increase and trump any WANTS
5. It is sad and heart breaking but her safety comes first over any sentiment or emotion
6. She no longer know where home is
7. She will always love you, and you her, even if she can't express it

Hope this helps
Kr
MrsA
Sadly, I have to agree with Mrs A and BB. Dementia is a terminal condition - if nothing else (eg, fatal stroke, heart attack, pneumonia) doesn't get her, then the dementia will progress until it has killed her conscious mind, and eventually it turns off the circulation and respiratory system.

That is the ghastly brutal truth of it. So, yes, please, don't try and take her out of the care home back to 'normal life' .That ship has sailed....it can't be done.

however confused or distressed she may be, she WILL settle. This WILL become 'home' in that sense, and you have to hang on to that as an article of faith. She just cannot manage 'real life' any more, even with you both giving up your lives for her.

Make the most of what is left, as it will fade. Already, with my poor MIL, her dementia has got SO bad now she is in a wheelchair (she's forgotten how to stand up or walk) (nothing wrong with her legs, only her brain), can't talk (same reason), can barely recognise me, and is doubly incontinent. She is 'barely there' any more - and yet only six months or so ago I was able to get her into my care and take her out for a drive, and have a cream tea......