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dementia progressing very quickly

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Brucie

Registered User
Jan 31, 2004
12,413
near London
does anyone else get envious when they see other people out with their mums (or dads)
...or wives or husbands.... or anyone of the same gender of any age who is still able to be out and about.

Yes, it is only natural.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Candi

Don't apologise, we all have days like that.

Of course you're angry, and envious of people able to go out and enjoy a morning shopping with their mums.

I hope you manage to find a nice place for your mum, where you'll be able to visit her without the stress of worrying about her. It'll be so much better for your dad too when he knows she's settled.

Let us know how you get on.

Love and hugs,
 

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Grannie G

Volunteer Moderator
Apr 3, 2006
71,762
Kent
Dear candi, don`t apologise.

On bad days, we are all in our own grief. On better days, we see the whole picture.

Searching for good care homes for the age range they `normally` cater for is painful enough.

For a younger person, well I just can`t imagine what you`re going through.

Take care and keep posting. At least you know our concern for you.
 

scarlett

Registered User
May 31, 2007
22
Derby
candi, i'm so sorry about your mums diagnosis. my mum aged 60 now was diagnosed with dementia ?cause age 56. I am also a nurse , ironically enough i am manager of a nursing home, and i completely understand your feelings of needing to be the strong one and others expectations of you. My mum was a single parent and i have no other family except my husband (married 3 years) and son 18 from previous marriage. I worry about burdening my husband when it particularly gets to me and i should be looking after my son not the other way round. Also i think it can be especially difficult being a nurse because you might expect understanding from your collegues but some have commented 'they'd never put their mum in a home' etc but my mum sometimes takes 3 staff to toilet her because she doesnt know she is incontinent.
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
[QUOTE=scarlett] Also i think it can be especially difficult being a nurse because you might expect understanding from your collegues but some have commented 'they'd never put their mum in a home' etc but my mum sometimes takes 3 staff to toilet her because she doesnt know she is incontinent.[/QUOTE]

I recognise this sort of comment Scarlett. When I was teaching Child care workers, many said they would never put their own children into child care. Because I was (fortunately :) ) in the position of being their teacher, I would say to them:

1 If you think the care you offer is not good enough for your own children, then I daresay it is not good enough for other people's children. ;)
2 You cannot ever say what you would or would not do until you are actually in that position. We can only theorise about it until it is reality for ourselves. So do not be hasty to judge others until you have "walked a mile in their shoes".

As you probably cannot say these things to your colleagues, I want you to know that they are nevertheless true. People are so hasty to judge the acts of others but rarely take the time to truly understand why things have to be done.

I am a keen advocate of good quality care and I'm sure your experiences with your own Mum will make you an even better Nursing Home Manager than you were before!

Ignore your ignorant colleagues and KNOW you are doing what has to be done for your beloved Mum.
 

scarlett

Registered User
May 31, 2007
22
Derby
thanks nell. it wasnt really that they meant homes are so bad (i think) but usually it is more along lines of "well i looked after my parents at home when they were ill until they died" the inference being that everyone should do that. I know it stems from ignorance of the realities of caring for someone with dementia. i worked very part time from mums diagnosis until 6 months ago so i could spend time with her that i could never get back. this had huge financial impact. first care home was 35 miles away but i took her out or home with me 3 days a week. i bathed her at home because she wouldnt trust the staff, Had to stop when she forgot how to get out! You have to find humour where you can or youd go mad- picture me 5ft 1 trying to explain to/ assist mum to get out by 'now kneel up no let go of tap thats it no dont need soap now, etc' for half an hour! but yes its right 'if it doesnt kill you it makes you stronger!'
 

candi

Registered User
May 6, 2007
32
norwich norfolk
hi i have had the same thing from collegues at work mostly telling me they wouldnt put their family in the assessment ward my mum is in.! that assessment ward has just about saved us the staff are wonderful and the care is very good. we have been told yesterday theat mums illness has progressed very quickly and she may only have a few weeks left. we are meeting next week to discuss if mum could stay at the assessment ward until the end as we are so happy with her care there. we had a fight on our hands to get her back there after her trip to the acute hospital they wanted her to stay with them until they had all the results but by putting our case over ( she was more settled there, she had company,(she was stuck in a single room in hospital) she was eating and drinking and walking. since she had beenin hospital a week she had been stuck in bed she was moved back to the assessment ward within four hours which has made my dad much happier.
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Scarlett,
I do have an amazing picture of (little!) you and your dear Mum struggling with that bath tub!! :D Thank goodness you can see the funny side too. As you so sensibly say, what doesn't kill us, makes us stronger!!

Dear Candi,
I am so sorry for you that your dear Mum has such a short time left. I sincerely hope your wishes are granted and she is allowed to see out her days in the assessment ward. It doesn't sound too much to ask, in my opinion. And makes it just a little easier for you to bear if you know she is content.

Thinking of you both.
 

candi

Registered User
May 6, 2007
32
norwich norfolk
hi everyone just a quick update on my mum, at the moment she is still in the assessment ward but the doctors have now decided she does not need EMI nursing care and could be considered for a nursing home so we looked at one in the village where my dad ( and before hospital) my mum lives, which we all like they have been to assess her and said yes they could look after all her needs which is good news especially for my dad as it will feel like she is 'coming home' at last but we have to wait till monday for the funding panel to sit, fingers, toes and everything else crossed. as she has such a short time left it would be good to get her settled as this will be her fourth move since january ( when she became ill). we have a DNR order now and as started on a new thread we have decided to refuse a peg feed and allow her to live out her final days in peace. will let you know how we get on with the funding panel.
love candi x
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Candi

I'm glad you are going to be able to bring your mum back to her home village. It will be so much nicer for your dad to have her near. I'm sure the funding panel will be understanding.

I hope the move goes well.

Love,
 

candi

Registered User
May 6, 2007
32
norwich norfolk
hi another update probaly the best one yet. have spoken to social worker and he has spoken to someone on the funding panel and full funding has been agreed and mum can go to the nursing home we chose (in her home village) on tuesday. it just needs to be 'rubber stamp' by the panel on monday. so glad we are able to get her 'home' as it were. helps to relieve some of the guilt and memory of the january night when she was taken to the psychatric hospital. i hope she settles in i am glad that she is going there but some sadness knowing this will be her last home.
thank you everyone for all your help and support over the last few months. will let you know how she settles in.
love candi x
 

JMW

Registered User
Jun 14, 2007
19
Hi Candi

Hi Candi,

Yes my mother's illness progressed rather quickly and it was such a shock. It think that's why it took me a while to accept it fully. She is now in a nursing home and being well looked after. I only joined today and already feel that a weight has been lifted from my shoulders. It is also frightening that so many people are affected by this disease but also a comfort as people know what you are going thru. I like yourself read these pages for a while but now am glad that i registered. Hope things are going better.

JMW
 

annesharlie

Registered User
Apr 10, 2007
80
Vancouver Island, Canada
Candi
I do hope your mom settles in smoothly, and that she is happy in spirits and pain free for the time she has left. Now with her back in her home town, hopefully friends will be able to drop by easily.

A
 

babyface

Registered User
Apr 30, 2007
16
Nottingham
sorry its so long...

Hi Candi,

I joined a while ago but havent posted as everytime i try,my mind goes blank & i cant put everything into words.Youre situation sounded very much like mine.My mum is 71 but had me late on,im 35.
My mum has been getting more & more absent minded over the years. I moved away from leeds to nottingham 7 yrs ago when i got married.Mum lived on her own after separating from dad when i was a child.They stayed good friends & dad would see her everyday.They would come & visit me about every 2 months & mum loved spending time with her grandkids who are 5 & 3.I would say over the past year i have noticed things happening everytime ive seen mum,so last october i spoke to dad & asked him to speak to the doctor & get a medical assesment.My mum was waiting to go to the memory clinic when things started to get worse.I last saw mum at xmas & she seemed very confused,crying a lot & calling me mum? In january dad went to see mum but the house door was opened,her dog was in the middle of the road & mum was in the poring rain in a blouse soaking wet.When she saw dad she tried running away.Eventually dad got her & the dog back in.That seemed to be the time when things started to get really bad.Dad had to move in to care for her & look after the dog as she couldnt do anything around the house,she refused to get a bath & wandered throughout the night.Dad had asked the social services if they could send somebody to help,but they didnt.Two months later Dad couldnt cope on his own & mum was place in a care home.One week later he got a call to say mum was been taken to a mental hospital as they couldnt look after her there.She was sectioned.When i visited i could not beleive this was my mum.How could this happen? she knew who i was at xmas...she could talk to me...now she was a walking zombie! Mum can no longer talk,& just wanders the coridors all day & night.She is also incontinent now.My oldest daughter cant understand where her grandma has gone,they were so close.Its 4 months since she arrived at the hospital & the doctors still havent decided what happens now...sorry its so long.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,762
Kent
Dear babyface,

I`m glad you finally been able to post. I`d like to welcome you to TP and am so sorry you are so distressed about your mother`s seemingly rapid deterioration.

There doesn`t seem to be any explanation for the rate of decline in different people. Some decline very slowly, some in fits and starts, with plateaux in between, and some go downhill very quickly.

It seems even before your mum was admitted for assessment, your dad found her impossible to cope with. Then the care home couldn`t help and now she is causing concern in hospital. All this time, she has been moved to different places, causing even more confusion.

My mother lost all her communication skills in the care home, and became incontinent. She too wandered along the corridors all the time. On day, I arrived to visit her and found her strapped to a chair.

I really don`t know what to say to you. It really is a dreadful illness, and so hard to live with.

I hope you get some comfort from this forum, where so many are going through the same agony. It won`t help your mum, but I hope in some ways it will help you.

Take care

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Babyface

Well done for plucking up courage to post. Stay with us, we're a friendly lot!

I'm so sorry to hear of your problems. Your mum seems to have gone downhill incredibly quickly. It certainly sounds as if she needs to be in hospital at the moment, if a nursing home can't cope with her.

I hope thay manage to come up with some answers for you, not knowing the cause makes it harder to bear, somehow.

Keep posting, and let us know how how things progress.

Love,
 

candi

Registered User
May 6, 2007
32
norwich norfolk
hi babyface welcome to TP glad you were able to post at last. your story sounds very similar to mine my dad was unable to cope and kept a lot of the problems from us she would go outside in the dark in the rain looking for dad and then be frightened when she found him, she was also sectioned for her own safety, it's been a long road since christmas when my mum was like yours not ok but you could have a conversion with her and i took her shopping to buy presents. Because of her rapid decline ( in three months became doubly incontient, unable to eat and drink unable to walk without two carers and unable to talk, did not recongize us which is the most upsetting thing) she has had lots of tests done EEG CT MRI bloods etc first we were told depression then dementia probaly picks disease but now after all the tests including a lumber punture she has probaly CJD ( there is usually one in a millon cases per year in the UK, but the neurologist told us it is much more on the increase, probaly due to better testing) which has a rapid onset dementia and very poor prognosis usually 6- 12 months. yesterday we moved her into a nursing home back in her home village so far (fingers crossed) she seemed settled had lots of vistors from the village even though she is not able to respond to them it was lovely for us as a family to think so many people are thinking of her. please let me know how you get on with your mum. love candi
 
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