Parent with dementia

[Ladywriter1968]

Hi

My dad has dementia, the doctor said he is in the mid stages of this now. He returned home today from hospital. They offered him alternative accom but he wont have it and wanted to go home, he lives alone but does have carers coming in and they have increased his care package now.

I don't know how to even admit in my head that my dad has altzeimers even though I have been told he has it. I am an only child so it makes it harder for me to cope really.

Cause sometimes he talks normally you would not know there was anything wrong until then he forgets and was talking crazy in the hospital.

Has anyone else have parent, spouse, partner etc who is in the mid stages? or did they pass that and now in late stages? I guess I need some support with others in the same situation as me, thats why this message.

How long is it before they go from mid to late stages so I know what to expect?

 

[Izzy]

Hi there. You will find many people on TP who have loved ones and lots of different stages and I know you will feel well supported by them all. There are info leaflets I know about the stages etc and I'm sure someone will be able to get you the link to them more quickly than I will. Take care. Izzy x

 

[Sam Iam]

Welcome to TP Ladywriter 1968,


Dementia is a very individual disease and although we all have similar experiances with our loved ones, no two people or dementia's progress at the same rate, this makes life a bit of a guessing game for us carer's, although I am moving away from doing this and taking each day with Mum as it comes .

We are a family here Ladywriter and I would like to welcome you to the family xxx

 

[Scottie45]

Hi Ladywriter

Welcome to TP,i hope you will find the site useful,i am an only child and my mum has this horrible illness,i take it one day at a time,you will get lots of help here,take care Marian xx

 

[Christin]

I agree with the replies above that TP is a great help and support. Just having the space to type sometimes can make you feel better. Also agree that dementia is an individual thing and I have so many questions but have not found anywhere near all the answers. My FIL lives with us. My husband is really an only child as his sister died when she was only 15. It does fall to us for his care plus the help of a brilliant team of carers who come each morning. Sometimes FIL seems to nosedive and is quite unwell, he seems to be in the final stages and we wonder how he gets though the day and then he is quite well again We don't know if that's usual or just his determination He is 95 now. We say he has duracell batteries We are learning to simply take one day a time. In a way life is easier than it was when he insisted on doing things we thought he shouldn't' ie driving, sawing wood! (don't ask!) Although it is sad that he often justs sits in a little world of his own we at least feel he is safer even if we are changing beds every day. There is no happy medium I think. Sometimes I wonder how much longer we can cope but then I always remind myself that each day might be his last and we have to do everything we can to keep him safe and comfortable and feel loved. Plus the thought that one day it might be me.

 

[oldsoulchild]

hi

hi
i am also an only child looking after my mam. i have no idea what stage she is at because she hasnt been tested but she seems to be getting worse very quickly.
she barely recognises me and never recognises her house or mine, which means she is always upset and asking can she go home yet and thinks that she has to have permission to return to her house. it means we have the same conversation every other minute which in itself is a strain. if my family were involved at least i could take a bit of time out and then deal with her better but....theyre not so i have to do the best i can, i know its a matter of time before she goes into a care home as i wont be able to give her the care she will eventually need. she has just been granted a care package with 3 visits a day. ive not told her yet and she wont be happy about it, but shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.
my advice....take a deep breath and do your best, nobody will ask any more than that.
good luck xx

 

[Helen33]

Hello Ladywriter

I can see that you have been warmly welcomed

I was wondering whether this might be helpful to you?

http://www.alternatecare.net/stages_of_alzheimers.htm

 

[Ladywriter1968]

thanks

Welcome to TP,i hope you will find the site useful,i am an only child and my mum has this horrible illness,i take it one day at a time,you will get lots of help here,take care Marian xx

Not sure how this site works, but thanks, so you only child like me so you know how hard it is then.

 

[Ladywriter1968]

only children with parent with dementia

hi
i am also an only child looking after my mam. i have no idea what stage she is at because she hasnt been tested but she seems to be getting worse very quickly.
she barely recognises me and never recognises her house or mine, which means she is always upset and asking can she go home yet and thinks that she has to have permission to return to her house. it means we have the same conversation every other minute which in itself is a strain. if my family were involved at least i could take a bit of time out and then deal with her better but....theyre not so i have to do the best i can, i know its a matter of time before she goes into a care home as i wont be able to give her the care she will eventually need. she has just been granted a care package with 3 visits a day. ive not told her yet and she wont be happy about it, but shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.
my advice....take a deep breath and do your best, nobody will ask any more than that.
good luck xx

Hi

I would like to reply to everyone on here, but my pc keep freezing up so cant. I dont even know if this one reply will get to you. But you are in same boat as me, my family are not that helpful or around either, plus I dont even live with my father and live further away, but still find myself doing everything amongst trying to live my own life as well. Your Mum should have been assessed by now to be honest, my dad is not as bad as your mum, he is in the mid stages of it. It sounds like your mum is in the later stages of it which is very hard to deal with from what I have read on the internet. I think at some point you may have to place her into care as you wont be able to cope or look after her, it will be to much on you. According to what I read on the internet they need constant 24/7 care when they get to the later stages. I am very sorry for you as I know how hard it is.

 

[Ladywriter1968]

thank you for your help

hi
i am also an only child looking after my mam. i have no idea what stage she is at because she hasnt been tested but she seems to be getting worse very quickly.
she barely recognises me and never recognises her house or mine, which means she is always upset and asking can she go home yet and thinks that she has to have permission to return to her house. it means we have the same conversation every other minute which in itself is a strain. if my family were involved at least i could take a bit of time out and then deal with her better but....theyre not so i have to do the best i can, i know its a matter of time before she goes into a care home as i wont be able to give her the care she will eventually need. she has just been granted a care package with 3 visits a day. ive not told her yet and she wont be happy about it, but shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.
my advice....take a deep breath and do your best, nobody will ask any more than that.
good luck xx

hi, I know how you feel when other members of the family dont help, cause I to an only child and my mother died when I was a child myself so its all on me with dad. The rest of my family if you can call them that, just don't seem to want to get involved. yet are quick enough to criticize though. It is hard and there is no easy solution to it. My dad had a care package before and it didnt work. My dads gas was also disconnected, dads mate did it for me. I think that maybe the gas cooker should be disconnected at your mums place. Which would mean just microwave dinners unfortunately. The thing is, when my dad was diagnosed with dementia, he was offered a care package visit twice a day and then upped to 3 times a day, but it didn't work. The carer being there half hour a time is not enough. Plus dad lived alone as well. I think you should get your Mum diagnosed asap to make it easier on yourself. Then you have the medical back up if she needs to go into care. There are these cognitive tests that she can have done at a clinic or hospital. You would need to arrange it through her doctor though.

 

[parmit]

shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.

 

[parmit]

shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.

We had to do this with my mum when she lived alone. The other thing we had to do was to take all the plugs off the chain in the bath and sinks and put them on a shelf out of her reach, so if she left the taps on there was no flood.

 

[Ladywriter1968]

hello there

shes unsafe now and cant remember how to use her gas cooker and is always just turning the gas on and then wandering around wondering what to do next.

We had to do this with my mum when she lived alone. The other thing we had to do was to take all the plugs off the chain in the bath and sinks and put them on a shelf out of her reach, so if she left the taps on there was no flood.

Gosh thats a lot.

When dad was first diagnosed in Jan he was in and out of hosp, the SW said they would try him with care package at home, I put all these probs to them and all the did was cross me with an answer, it was a bit like quiz time rather then care.

I said things like, he lives alone, and left the gas on.
Answer, well get it disconnected then.
He can not go upstairs to the toilet,
well we will supply commode then.
I said, yeah but it will only be emptied when the carer is there which is twice a day, she said when well anyone who turns up at his house can empty it.
I told her, I live far away.
reply, Yeah but he has his mate near by.
His mate has a sick wife I said.
Them, no response.
what if he falls again.
We will provide panic alarms etc and rails on stairs.
Well he smokes what about that then.
No answer from them.
So they provided him with this crappy care package that didnt work, the carer was awful and would not do nothing and dad slept in his clothing at night on the sofa sitting up. He didnt even go upstairs to bed. She said, we will try it our way first and see if it works.
I said oh well thats ok then, isnt it.
I told her also of my ill health before.
But they already had made their decision and stuff what anyone else felt or what it put them thru.
I just felt that social services simply did not care.

 

[julieann15]

Hi
I had to be blunt with SS. My health was suffering(panic attacks anxiety when the phone rang- ground hog day every Saturday going 25+ plus miles to mum's and trying to sort out the SH!T that is AD)
I sent a very strongly worded email to CPN and asked her to forward it to SS as I could not get SW email. It basically stated we could not sustain the level of help we were giving and were handing over the full responsibility of mum to SS and would ultimately hold SS FULLY responsible if anything happened to her in their care if they deemed her safe to come out of respite and back home again withg a care package. Within 24 hours we had a best interest meeting planned and on mum's report it stated that all of a sudden her "eligibilitary catagory" for residential care was "substantial".

Mum is now happily settled in the care home close to me and the quality of all our lives is so much better.
I hated writing that I was not preapred to care any longer for her but at the end of the day we all knew mum would be better of in care!

Love Julie xx