How will I manage when mum gets worse?

[Emw321]

My mum is 89 and was diagnosed with vascular dementia in November. In some ways we were lucky as an earlier scan due to a fall showed the damage in her brain very clearly. Thinking back to the August i dont knlw why they didnt flag it up then. Our consultant said a demntia link worker would contact me and help us through the first six months. This aint happened. They have huge waiting list and having to recruit. I have been assured i will get six months from time they start but to be honest it too late.
Social work assessed mum and me. The reports arrived and when i read them it was like reading about someone else. But having read many posts on here we are still im the ' good times

 

[Emw321]

Posted that unfinished. Sorry.
I have chronic depression and feel like someone has attached lead weights to my shoulders. But there seems no choice but to plod on. Mum just started getting care workers 15 mins per day to make her lunch but sometimes they cant get in no key box yet. 15 mins. Wow! A d she has no idea who they are or when they come. She wont write things down and removes all my notes. Apparently it costs social work £17 per hour. Not that the careworker gets that. I had to leave my job and now get 66 per week plus universal credit
My mum does not remember that anyone comes to do her meals. I make her dinner and i really struggle to remain calm when she starts getting angry or insults me. Yes its the dementia but i struggle as its depressing and sometimes i almost crawl away. And all i know is it will get worse.
I dont want to cope but i do quite well. My hair is falling out and i eat too much tubbish. A saving grace are my dogs as they make me go for walks. I love my walkd Support to cope is poor. Nobody is prepared for this. But reading other posts has helped me see my feelings are not abnormal. I decided to raise some money for research by running. But am too dam tired. And i would rather raise money for carer support. I am sitting today thinking about how i will manage when mum gets worse. And i dont know as there is no signposted path . But like many i have no choice. I am also trying to ensure my depression doesnt get worse. 2 hours till i visit my wee mum again to make dinner. It is never the same. I hate dementia.

 

[Bunpoots]

Hi @Emw321 . Welcome to the forum. I recognise the feelings you write about and my hair has fallen out in places and I've eaten far too much rubbish - not to mention drank too much wine!!

I've survived as my dad passed away, aged 90, at the end of last year. I'm hoping my hair will grow back (luckily the bald patches are underneath so not too noticeable) and my weight will return to normal. It'll take time...

15 minutes doesn't sound like long for a care visit. My dad got 30 minute visits to start with and that was quickly increased as it became obvious it wasn't enough time. Have you asked SS to revise the care package? SS need to know how it is on the worst days so make sure they understand. We carers need all the help we can get!

I found the early days were some of the hardest. Finding Talking Point was a life saver for me - knowing that others understood and even had suggestions on how to cope made things a little easier.

Keep posting!

 

[Piper2019]

Em I am so sorry you are going through this. I have no sage advice but lots of empathy. I am in the same boat. Depressed and afraid of the future. My self care has also gone out the window and I drink more alcohol than I should just to unwind when I feel like I'm about to lose it.

One thing I can suggest is therapy. I only just started (two times so far, going again tomorrow) so I'm not seeing much improvement yet, but I'm going to keep at it and mentally work on accepting this horrible situations our mother's are in and try to come up with better coping skills.

Know that you are not alone in this. I've learned in the last eight months that many, many of us get overwhelmed when dementia hits a loved one. It sucks so bad! We are not prepared for something like this! But here we are and we have to get through it. Little by little we will learn our way. We have no choice!

It's good you posted and reached out for support. I'm sure others will have good advice. You are definitely not alone.

 

[Emw321]

Hi @Emw321 . Welcome to the forum. I recognise the feelings you write about and my hair has fallen out in places and I've eaten far too much rubbish - not to mention drank too much wine!!

I've survived as my dad passed away, aged 90, at the end of last year. I'm hoping my hair will grow back (luckily the bald patches are underneath so not too noticeable) and my weight will return to normal. It'll take time...

15 minutes doesn't sound like long for a care visit. My dad got 30 minute visits to start with and that was quickly increased as it became obvious it wasn't enough time. Have you asked SS to revise the care package? SS need to know how it is on the worst days so make sure they understand. We carers need all the help we can get!

I found the early days were some of the hardest. Finding Talking Point was a life saver for me - knowing that others understood and even had suggestions on how to cope made things a little easier.

Keep posting!

Thank you for your response. Yes i will have a word with social work and maybe out gp who does not seem to be in the picture. It is good to know that things can get better and i am sorry to hear about your dad xxx

 

[Emw321]

Em I am so sorry you are going through this. I have no sage advice but lots of empathy. I am in the same boat. Depressed and afraid of the future. My self care has also gone out the window and I drink more alcohol than I should just to unwind when I feel like I'm about to lose it.

One thing I can suggest is therapy. I only just started (two times so far, going again tomorrow) so I'm not seeing much improvement yet, but I'm going to keep at it and mentally work on accepting this horrible situations our mother's are in and try to come up with better coping skills.

Know that you are not alone in this. I've learned in the last eight months that many, many of us get overwhelmed when dementia hits a loved one. It sucks so bad! We are not prepared for something like this! But here we are and we have to get through it. Little by little we will learn our way. We have no choice!

It's good you posted and reached out for support. I'm sure others will have good advice. You are definitely not alone.

Thank you xx

 

[Piper2019]

Thank you xx

Hey Em, how are you doing today?

I managed to get out for a sunrise walk this morning and it helped me clear my head a bit, so wanted to suggest that to you also. It helps the depression to just get out of your head for a bit... I hope that made sense.

 

[MaNaAk]

Posted that unfinished. Sorry.
I have chronic depression and feel like someone has attached lead weights to my shoulders. But there seems no choice but to plod on. Mum just started getting care workers 15 mins per day to make her lunch but sometimes they cant get in no key box yet. 15 mins. Wow! A d she has no idea who they are or when they come. She wont write things down and removes all my notes. Apparently it costs social work £17 per hour. Not that the careworker gets that. I had to leave my job and now get 66 per week plus universal credit
My mum does not remember that anyone comes to do her meals. I make her dinner and i really struggle to remain calm when she starts getting angry or insults me. Yes its the dementia but i struggle as its depressing and sometimes i almost crawl away. And all i know is it will get worse.
I dont want to cope but i do quite well. My hair is falling out and i eat too much tubbish. A saving grace are my dogs as they make me go for walks. I love my walkd Support to cope is poor. Nobody is prepared for this. But reading other posts has helped me see my feelings are not abnormal. I decided to raise some money for research by running. But am too dam tired. And i would rather raise money for carer support. I am sitting today thinking about how i will manage when mum gets worse. And i dont know as there is no signposted path . But like many i have no choice. I am also trying to ensure my depression doesnt get worse. 2 hours till i visit my wee mum again to make dinner. It is never the same. I hate dementia.

Dear Emw,

Welcome! For years ago I was at your stage with my dad who was diagnosed with Alzheimers. I worried about how I would cope, get dad to the doctors for a diagnosis, money, care home and so on I would get to sleep well wake up in the early hours and not get back to sleep. When dad was diagnosed felt grief and dad felt depressed. I cared for him through mild, moderate and severe Alzheimers and eventually he had to go into a home because he was falling, getting aggressive with the carers, wandering and deciding not to eat all his meals eventhough he is diabetic.

I got through all this and so will you and looking back I am proud of what I have done and my late mother would have proud too. Dad said that I have probably saved his life and one of the saddest things he said to me was that he wanted me to remember the person that he was (this was difficult to hear) so I know he would have been proud of me as well and when his dementia was mild he actually thanked me.

You need to contact adult social care at your local authority and ask for a dementia support worker. You will need to get the carers to stay a bit longer eventually which is where I really wish that when I hear that Barbara Windsor is getting carers six days a week for no doubt long periods I feel jealous because like you I had to think about finances. My local dementia support worker did wonders for me including sending out dementia nurses.

Good luck

MaNaAk

 

[Emw321]

Dear Emw,

Welcome! For years ago I was at your stage with my dad who was diagnosed with Alzheimers. I worried about how I would cope, get dad to the doctors for a diagnosis, money, care home and so on I would get to sleep well wake up in the early hours and not get back to sleep. When dad was diagnosed felt grief and dad felt depressed. I cared for him through mild, moderate and severe Alzheimers and eventually he had to go into a home because he was falling, getting aggressive with the carers, wandering and deciding not to eat all his meals eventhough he is diabetic.

I got through all this and so will you and looking back I am proud of what I have done and my late mother would have proud too. Dad said that I have probably saved his life and one of the saddest things he said to me was that he wanted me to remember the person that he was (this was difficult to hear) so I know he would have been proud of me as well and when his dementia was mild he actually thanked me.

You need to contact adult social care at your local authority and ask for a dementia support worker. You will need to get the carers to stay a bit longer eventually which is where I really wish that when I hear that Barbara Windsor is getting carers six days a week for no doubt long periods I feel jealous because like you I had to think about finances. My local dementia support worker did wonders for me including sending out dementia nurses.

Good luck

MaNaAk

Thank you for all your advice. We are on waiting list for dementia link worker who is meant to help us through first 6 months lol but they said a few months to wait yet. Yes i remember the consultant saying we would get a community nurse. I will get back to them and ask. X

 

[MaNaAk]

Thank you for all your advice. We are on waiting list for dementia link worker who is meant to help us through first 6 months lol but they said a few months to wait yet. Yes i remember the consultant saying we would get a community nurse. I will get back to them and ask. X

Dear Emw321,

Have you registered as a carer with your GP? Once you do this they could put you in touch with your local Carers Forum. They can give you advice about care agencies (because I think your going to need one) and other help in your area. They could also put you in touch with your local Alzheimers Society (although you could be put in touch with your local branch through through the GP).

Please keep in touch because I think what you've just told us is ridiculous!

MaNaAk