A Welcome Care Pack for New Members

mel

Registered User
Apr 30, 2006
1,656
63
Sheffield
Hi Carolyn
When my dad was alive he didn't tell mum so we've just kept on from that....we've always said "memory problems " too....which of course it is......mums two sisters suffered the same....it never actually occurred to mum that she was suffering the same thing.......
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Hi chrissie52

I have no advice, on Lewy Body Dementia, but know the feeling when you say
we are at a loss.
Sounds like you have done everything that could be done for your mother, easy for me to say and easy for me to say to myself about my mother , but I don’t feel it, it’s so hard to let go and see them like this.

Also like to add welcome to TP to you all chrissie52, Eclair, cobweb , st.clair, thanks for shareing xx
 

Dar Griff

Registered User
Dec 5, 2006
15
48
Caerphilly
First posting tonight.

Haven't looked through the whole set up yet, but the information looks as if it may be useful & helpful.
 

mel

Registered User
Apr 30, 2006
1,656
63
Sheffield
Hi Dar Grif
Glad you found us....you'll get loads of support and information on here....and you'll get a few laughs along the way............
Take care
love
 

Dar Griff

Registered User
Dec 5, 2006
15
48
Caerphilly
new member

I've only joined talking point recently & I'm at a loss to know where to start with looking for information that can help.

My dad has Alzheimer's. Officially diagnosed 3 1/2 years ago. He lives at home with my mam, who's finding it increasingly difficult to cope.

The local PROFESSIONAL organisations seem to be little more than dismissive. We have to wait for a whole range of assessments: sometime in the future: & my dad's doctor recently told my mam that if she was finding things that difficult, she should have him sectioned.

Any offers/pointers would be greatly recieved.

Thanks.

D.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dar Grif

It might be helpful (i.e. you'll get more responses) if you post your situation in a new thread in this forum - I think a lot of people don't remember to check in the "stickies" (well, I don't anyway).

Jennifer
PS Welcome to TP!
 

mich30

Registered User
Dec 16, 2006
3
wirral
hi, have looked at this site few times now, found it both comforting and upsetting to read. registered this morning. i care for my great nan at home who is now in the later stages of dementia, Its just been a kind of hard day, she is sleeping more and more. and is starting to lose intrest in eating and drinking, she has been my world since i was little and im so scared of what she has to come. every day isnt like this i bought her a war time cd of history on the net, and on a good day she sings all the old songs, and it just feels like i have a little bit of my nan back. just think its a brilliant idea to have this talking point and wish i had registered sooner
mich took jennifers advice above about posting new thread here, hope i have done right
 
Last edited:

mel

Registered User
Apr 30, 2006
1,656
63
Sheffield
Hi Mich
i've heard so many people refer to the rollercoaster effect of this disease.....thats so true!Its a very tough ride....some days you feel more able to cope than others. I care for my 82 year old mum (83 next week) and most of the time see very little left of my old mum.Its very sad to see bits of her disappear every day......
All we can do is our best to care for our loved ones and cherish the good times.
You're doing a brilliant job with your nan and registering on this site will help you.I've learned so much from the very caring supportive people on here .
Take care
love Wendy xx
 

mich30

Registered User
Dec 16, 2006
3
wirral
Thanks wendy, i sat reading through a lot of the posts this morning, and i think its lovely how supportive everyone is to each other. and i think this must be a nice place to come to for some honest advice
michelle x
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Hi Mich
Welcome to TP
This is probably the friendliest and most supportive board I have ever posted on. Although we're all in different situations, with some of us caring full-time for parents or spouses, and others (like me) caring, but not on a day to day basis, we're all united (unfortunately) in this awful journey. If you have any specific questions or concerns, or if you simply want to rant, or alternatively, talki about something good that's happened, just post away.

It's interesting what you say about the singing. My Mother, who has had several strokes, has retained her memory for music far better than any other aspect of her life. MY DD, who has studied the way memory works at college tells me that the part of the brain that deals with music is quite separate from most other functions, and that definitely seems to be true in Mummy's case - she may not remember if I'm her daughter or her sister, but she can always find an appropriate song for a given situation. Also, she can remember situations (such as concerts) when music is involved, even though she has almost total short-term memory loss.

Jennifer
 

mich30

Registered User
Dec 16, 2006
3
wirral
nan hasnt watched tv for along time, she recognises coronation street theme tune but has no intrest after that. But i really feel that the blitz songs cheer her up, she sings and laughs at me trying to do old time dancing to it. im just so happy that i found something that seems to occupy her time, as she doesnt get out of bed anymore,Dont get me wrong it doesnt work all the time, but if she gets a little pleasure from it sometimes,it makes all the other day to day things seem easier
michelle
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I am feeling that emotional roller coaster again, silly really its just that I have to help mum pull up her trouser up when she go to the loo , or I find her in bed with her trouser half pull down, sleeping more then usual , so hard seeing her like this , so had motivating her , then she pops up says something and those parts of her that I thought had gone is back, and think she going to be ok god I wish that I could find it in my heart to stop feeling to stop crying when I hide in my room on my own . your think after 4 years of caring I would be prepared or be use to seeing parts of her despair and reappear

I shall chariest , those moment now , like last night as I look at my daughter write a Christmas card sitting next to mum , while mum tell her what she wants written in it ,and I sit and look on and translate for mum to my daughter , mum never ask me because I have been so grumpy and stress lately.

Sorry for posting in hear . welcome all new people thank - you for shareing it dose help xx just knowing my mum is not alone in what is happening to her
 
Last edited:

daughter

Registered User
Mar 16, 2005
824
I don't know what to say Margarita except {{hugs}} and I recognise that roller coaster feeling. It is my Dad's NH Christmas party this afternoon and I am both dreading it and looking forward to it. One of my daughter's has not seen Dad since last year and she is bound to see the deterioration - or will he rally today and have one of his good days? Perhaps he will give a few smiles; maybe a small dance with Mum; a few words? I cannot bring myself to even hope for these things, so anything will be a bonus.

Welcome mich30 - you have found a great place here and I'm glad you've found something your Nan enjoys.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Welcome Michelle

Margarita, I don't see any need to say sorry ... in fact your post just made me feel hugely better .... I think it's one of the great strengths of TP that so many people who have been caring for many years share not only their support but their own ups and downs .... helps a blithering novice like me feel, well, slightly less blithering.......

Hazel, do hope the party goes well....

Love, Karen, x
 

willowsue

Registered User
Jan 26, 2007
5
Aberdeenshire
Rollercoaster effect

God knows how many times we have used these words in the last few weeks at the moment our rollercoaster is at rock bottom and we are afraid to hope that we can creep slowly back up a bit at a time - twice in the last five weeks we have been told to expect the worse and twice my mum has pulled through. It is a bit like a spider spinning a web and against all the adversities this terrible illness puts in her way she just keeps on spinning away and climbs back up.
Anyone else gone through the not eating and inability to swallow stage we are at just now ?
 

Clarabella

Registered User
Jan 24, 2007
6
East Sussex
First time poster!

Hi everyone

This is the first time I've left a message on this site - and actually the first time anywhere so forgive me if I'm leaving this message in the wrong place.:confused:

My mum had had memory problems for 18 months - 2 years and finally admitted it to herself last summer and we both went to see the GP together. He referred her to the Memory Clinic who arranged a CT scan which she finally had in October 06. December we were still awaiting the results but she began to feel very unwell resulting in her being rushed in to hospital by ambulance (blue lights and sirens - always wanted to see what that was like rushing through the traffic like that but not with my Mum so ill in the ambulance itself). Her heart was beating way too fast resulting in poor oxygen circulating around her body and her heart was getting tired as the paramedic put it.

Anyway, cutting a long story short they stopped the heart racing and we found she was anaemic, bad urine infection, low blood sugar levels (she is diabetic as well). Basically she had not been looking after herself well but hiding it very well.

So ever since (now 7 weeks) she has been in the local hospital. Her clinical problems have been sorted out to the best they can be but her memory/confusion became very clear to everyone - particularly the nurses on the ward who said she was not safe to go home (with which I totally agreed).

We are now at the stage where her inability to make a decision has been agreed and the decision has been made that she cannot be on her own as she is not safe. However, she is TOTALLY understandably very frightened about going in to residential care. "I cannot stand the thought of being in one room for the rest of my life".

I have a question which I wonder if any of you guys can advise on. As a last ditch attempt to keep her in her own home - has anyone "employed" someone to live with their loved one? If so, any advise on where to start?

I am the only daughter living locally but I work (wish I didn't!) and it is just too unsafe to leave her on her own.

Look forward to hearing from people - don't worry if it isn't to do with my question. Hearing from others in a similar situation to take away the feeling of being on my own would be just so good.:)


Take care all

Clarabella
 

Lila13

Registered User
Feb 24, 2006
1,342
No, we looked into it, but Social Services thought carers coming in 3 times a day would be enough. Of course I don't know if your mother's condition is worse than or similar to my mother's at that stage.

Lila

Clarabella said:
I have a question which I wonder if any of you guys can advise on. As a last ditch attempt to keep her in her own home - has anyone "employed" someone to live with their loved one? If so, any advise on where to start?



Clarabella