New to Forum and Getting Desperate

[sweetmole]

Hello Everyone
Can you believe I have been trying to post on this website since September and have had no breathing space to write a decent post. So here goes. I'm probably going to cry as I write. Sorry.

Mum was diagnosed with early stage dementia a year ago. Fronto temporal (I think) the type that affects your social skills.

I have seen a rapid decline in the past year. The screams, the bashing things at home, the aggression, touching children when we go out, grabbing peoples arms at supermarkets, and so on. Today she nearly tripped up a child at the hospital waiting room by sticking her foot out! I apologized again and said sorry mum has dementia. Luckily he smiled and understood.

I live with my Dad, Mum and Brother.YES you would think having three people around would share the load but, all has been dumped on me.

In Oct my mum suffered a ruptured gallbladder. Ended up in intensive care for 4 days fully sedated. Her Consultant did say she may take a step down again in her dementia because of the anasthesia . Sure enough she displayed more extreme symptoms.

I feel as if I am having a complete breakdown. My family were very selfish and left me to get on with things at the hospital. At hospital no one cares about dementia patients, YOUNG patients, my mum is 66. I had to ensure she got breakfast,lunch and dinner. Bathed her, took her toilet. My dad and brother turned up for an hour each evening. That's all the support I got from my family. I was disgusted to the core. People say oh its men you just have to get on with it. Really, really, really??? That's how men are? Where did that come from. As I am 'unemployed' in my dad and brother's view, everything is my job.

Most recently she had extreme diarrhea, every two hours I helped her in the bathroom for a week. Finally I took her to the hospital. I was cracking up, no sleep. Really, suicide looks like a great option or that clinic in Switzerland! I'm not kidding.

OK, so I do not know how to get my dad to understand her brain doesn't work the same anymore, that she now needs professional help. He is not accepting her situation and it hurts me when he starts calling her nasty names and says she is driving him crazy.I get that she is driving us all crazy. We are all slowly going mad.

My mum is still mobile, can cook, wants to be active and go out and socialize (don't even ask about her friends they have all disappeared into the woodwork).

But hearing my dad tonight just say put her into a home, this is our bad luck, we have no money. We will have no choice but to sell our home just made me so angry and hacked off.

I know there must be some solutions, I have no clue. Should I look into care at home, a day centre, a care home. Really I can't take it. I am supposed to be looking for a job. My high flying career is down the drain. Has been for past few years looking after mum and not knowing what was wrong with her.

Please if anyone has had time to read this and you have advice please help me. I don't understand where to go first.

Thank you,xxx

 

[piedwarbler]

Hi Sweetmole

Welcome to TP. You sound at the very end of your tether and no wonder. How on earth have you been holding things together for so long? And with negligible support from your family.

Firstly I do not see why you should have to sell your family home to pay for care. I had to sell my mum's house, but she was the sole occupier. If you and your dad and brother live in the house, you shouldn't have to sell it.

What you need is a Social Services assessment. You can ring them and ask for one. Or, ring your local Alzheimer's adviser, and they should be able to explain what support is around in your area. There's a link on this site to help you find your local branch.

You say you are feeling desperate. I hope that coming on here will help you feel that there is someone who understands. Have you been to your GP and explained how bad you feel?

Sending you warm wishes x

 

[jan.s]

Hi Sweetmole.

It made me so sad to read your post and how you are struggling with your mum alone. First things first, I am sending you a big hug to try to make you feel a little better.

As I read it, I can see that your mum is very lucky to have you to stand her corner; it seems neither your Dad nor brother have much understanding of mum's condition. She is behaving in an "unacceptable" way, not through choice and she probably hates it too.

Pied has given you good advice and I would urge you to phone Social Services for help with your Mum. I would also go to the GP to explain how you feel and what is happening to your Mum.

It is amazing, so many people understand, and when you think you're alone ... here we all are! TP is brilliant; you will find lots of support and people are not judgemental - you can say it like it is.

Keep posting, there is so much experience on here.

LOve Jan xx

 

[Shash7677]

Hi sweetmole and welcome to TP.

The first thing I want to say is, if your dad is on the mortgage there is now at your house will have to be sold to pay for mums car should she ever go into a care home.

Secondly, since your mums diagnosis have you been allocated a social worker, psychiatrist or community psychiatric nurse? If you don't have a psychiatric nurse my best advice to you, and this is what I had to do for my mum, is get in touch with your local Community Mental Health Team for older people and ask to speak to the duty psychiatric nurse. Explain the whole situation to them, the fact that mum is deteriorating, the fact that her behaviour is becoming more and more erratic, you have no help and that your dad just does not understand anything about your mums condition. See if someone can come out and see your mum and speak to your dad, it may be that he is in denial, he realises the severity of the situation but doesn't want to admit to what is happening. It so difficult when people have been together for so many years, they don't want to accept that they are losing the one they married BUT there is a line in the vows which says 'in sickness and in health' well this is where he needs to start stepping up. My dad couldn't accept mums illness, it took for her to start hitting everyone and try strangling me to make him realise enough was enough. It's not a 'man thing' it's called denial and whoever is saying its a 'man thing' needs to realise this too.

Right now for you my lovely. Pop yourself to the GP, have a chat and explain everything that is going on. They may be able to help where mums concerned, make a few calls or give you some pointers as to who to speak to etc etc. you can't deal with it all alone and if you feel comfortable talking to the doc then I would. Just so they have an idea of what is going on.

If definitely ring the CMHT, ours were fab where mum was concerned. They sent a community psyche nurse and a social worker out within a few hours of my calling. It may not blown so quickly everywhere but they should be able to help. Personally I wouldn't put the phone down until they agree to come and see you and mum. They can also maybe help dad and brother realise that this isn't just going to to away, your mums issues need dealing with and her illness need dealing with head on. Your dads head bing in the sand and him being nasty and narky aren't going to help.

Keep posting and let us know what happens.

Sharon

Ps I forgot to say mum was diagnosed at 66 and is now 67.

 

[sweetmole]

Thank you from my heart

Dear All
Thank you so much for these pointers. I just cannot tell you how my tears of desperation are feelings like tears of some joy to know what to do. I have been so drained that I cannot use my head. Can you believe I have an undergrad in Chemical Engineering and a Masters from a world class American university and I can't use my brain! I have been unable to think clearly at all. I'm normally so good at sorting things out, fixing problems, finding solutions, researching what is out there.

So your advice is just so great to have. When my dad said put her into a care home , it was like she was an animal. Oh just take her to the flippin' vet and all will be sorted.

Last week when mum was in hospital I asked my brother to help her with breakfast. The bus he takes to work passes the hospital! The catering staff say to my mum do you want breakfast, she says NO and off they go. A diabetic patient with dementia. I pleaded with my brother. He did not help. You know what for the first time I picked up my bag and coat and walked out of the hospital room. I went to stay with a friend for 4 days. I let them get on with it. It broke my heart but I did not go to the hospital. I had to make a stand.

Tomorrow I will re-read all the suggestions and start the ball rolling next week.

She has a Consultant for Elder People Services and that's it. No one told me about Social Service Assessments or nurses or anything. She is on Aricept.

 

[sweetmole]

Mortgage Question

Hi sweetmole and welcome to TP.

The first thing I want to say is, if your dad is on the mortgage there is now at your house will have to be sold to pay for mums car should she ever go into a care home.

Secondly, since your mums diagnosis have you been allocated a social worker, psychiatrist or community psychiatric nurse? If you don't have a psychiatric nurse my best advice to you, and this is what I had to do for my mum, is get in touch with your local Community Mental Health Team for older people and ask to speak to the duty psychiatric nurse. Explain the whole situation to them, the fact that mum is deteriorating, the fact that her behaviour is becoming more and more erratic, you have no help and that your dad just does not understand anything about your mums condition. See if someone can come out and see your mum and speak to your dad, it may be that he is in denial, he realises the severity of the situation but doesn't want to admit to what is happening. It so difficult when people have been together for so many years, they don't want to accept that they are losing the one they married BUT there is a line in the vows which says 'in sickness and in health' well this is where he needs to start stepping up. My dad couldn't accept mums illness, it took for her to start hitting everyone and try strangling me to make him realise enough was enough. It's not a 'man thing' it's called denial and whoever is saying its a 'man thing' needs to realise this too.

Right now for you my lovely. Pop yourself to the GP, have a chat and explain everything that is going on. They may be able to help where mums concerned, make a few calls or give you some pointers as to who to speak to etc etc. you can't deal with it all alone and if you feel comfortable talking to the doc then I would. Just so they have an idea of what is going on.

If definitely ring the CMHT, ours were fab where mum was concerned. They sent a community psyche nurse and a social worker out within a few hours of my calling. It may not blown so quickly everywhere but they should be able to help. Personally I wouldn't put the phone down until they agree to come and see you and mum. They can also maybe help dad and brother realise that this isn't just going to to away, your mums issues need dealing with and her illness need dealing with head on. Your dads head bing in the sand and him being nasty and narky aren't going to help.

Keep posting and let us know what happens.

Sharon

Ps I forgot to say mum was diagnosed at 66 and is now 67.

Hello Sharon, sorry could you repeat the stuff about names on mortgages? Both my parents names are on the Land Registry. So what does that mean regarding paying for care?

 

[jenniferpa]

I think perhaps Sharon left out a not there (easy to do, I do it myself).

If your father remains in the family home (and it doesn't matter what might on the mortgage or land registry) the house does not need to be sold to pay for care: it's considered a disregarded asset.

 

[BrightSide]

I feel for you sweetmole. I learned almost everything I know about the long, sad journey of dementia from this forum. Just keep asking. Someone here will give you the answers. It will never get easier, but you will begin to cope and the brain mush will dissipate...you will think clearly again. Hang in there. I hope your family suddenly wake up to the angel that you are and give you the support you need. X

 

[BrightSide]

...my mother lives in the family home and it is disregarded. We are in the middle of a funding assessment, in Scotland....dad has 23,000 in an isa and he should get full funding.

 

[Shash7677]

Hi again.

You could always give the consultant a ring too. The more doors you bang on.......! Hooraying can work and you normally get further with these people the more of a nuisance you make of yourself.

Collect your thoughts, sit down with a cuppa tomorrow and make a list of all the things you want to do over the next few days. All the calls you want to make etc etc. sorry if I sound patronising I don't mean to, just take a note of everything that they say with dates and times, then if they don't do as they've said you can go back and say 'on Monday 29th December I spoke to X who told me this would happen, it hasn't, why not!' Always have lots of ammo that way they can't wriggle out if anything. I sound like such a sceptic don't I, SS etc aren't all that bad, ours were great but from reading posts by others on her, some SS need an enormous kick up the aris to get them moving.

The reason you can't think straight is because there is emotions involved, this is your mum, your family. We are all here to hp where we can whether it be giving advice, lending an ear or just being a support to you.

Take care
Sharon

 

[minniemouse01]

Hello Sweetmole, you poor thing ! You will always get support here. From a practical point of view, if you live in the UK, there are benefits available to your mum and yourself as her carer. Attendance Allowance for mum, and Carers Allowance for yourself. You would not be required to sign on at the Jobcentre and be pressured to look for work. Your local Carers Centre or Citizens Advice can help with the process.

If you are not in the UK, I do hope there is some sort of financial support for you.

I realise that these matters will be furthest from your mind at the moment, you need help from your Dad and Brother.

I do wish you well, others on this forum who have much more experience than me will keep you in the right direction.

take care

M x

 

[chris53]

Hello sweetmole, I wanted to send you a hug as many of our wise ones here have given you sound advice and I cannot add much more
As i have only just read your post,and the replies to it, would like to say here you are not alone, support and understanding is here day or night, so please do keep posting, and a very warm welcome to Talking Point.
Chris x

 

[sweetmole]

Thank you Thank you

Really, I don't take anyone's advice as patronising.

Sharon I love your step by step process. It gives me a framework. I need to be spoonfed until the fog begins to lift and I start making progress and getting the right help and support.

Loving all the hugs. Loving this forum. They told me in September to join, some helpful people. I joined but just felt such despair and no time to post.

XXXXXXXXXXXXXXXXXXXXXXXXX

 

[Shash7677]

Hehe just read the 1st paragraph of my 1st post and it makes no sense! Not sure if I was tired or if it is because I use my phone to go on TP! I'm blaming the phone but you know what they say 'garbage in garbage out!' ;-)

Thanks Jennifer for trying to dicipher it.

What I meant is what others have now said. If dad is on the mortgage, name on land registry paperwork then no, the house would not have to be used to pay for mums care should she have to go into a home. Others have confirmed this too now but just wanted to clarify what I was trying to write.

Note to self, when tired read post before posting! I'm such an **** at times lol.

Take care
Sharon

 

[Izzy]

Good morning Sweetmole. I'm sorry but I've only just found your thread. I'm so sorry things are so bad for you. I can only agree with everything others have said. You urgently need to get a Social Work assessment for your mum - and a carer's assessment for yourself.

I can only add my own hugs as no new advice to give. x

 

[Whirlwind]

Good advice on TP

Hi just wanted to send good wishes and support, during Sept and October I was suddenly plunged into the situation of my mother (not dementia related) going into hospital not expected to come out again(she passed away 26th Oct) and she had cared for Dad 24/7, of course I needed to find him a care home. I was juggling looking after mum, visiting Dad, dealing with all the practical stuff making sure he had clothes and stuff in the care home and washing and treats for Mum and at the same time dealing with power of attorney registration, social services assessments, capacity and best interests meetings. fighting for support from memory clinic and CPNs who had no clue. I know what you mean about emotional fog it is disabling and the suggestion about lists worked for me. Every morning i wrote down what i needed to do, i stillhave to this as the nightmare continues for me as Dad is now in hospital and it looks like i will have to go through finding him another home as he is so much worse now after admission
to acute hospital after falling in the care home. Please don't hesitate getting in touch with social services, Dad's social worker was great, taking me through things step by step and giving me the facts about the financial aspects arranging for me to meet the finance officer for advice which was great. Not sure where you live but rules are different in England from Wales where I live.

You will find the strength to get the help you need, you just need to get some space to see the wood for the trees, hopefully TP is what you need, it helped me a lot, you know it won't help your mum if you go under, you are the most important person in this scenario holding it all together. Take care of yourself first.

 

[sweetmole]

Hehe just read the 1st paragraph of my 1st post and it makes no sense! Not sure if I was tired or if it is because I use my phone to go on TP! I'm blaming the phone but you know what they say 'garbage in garbage out!' ;-)

Thanks Jennifer for trying to dicipher it.

What I meant is what others have now said. If dad is on the mortgage, name on land registry paperwork then no, the house would not have to be used to pay for mums care should she have to go into a home. Others have confirmed this too now but just wanted to clarify what I was trying to write.

Note to self, when tired read post before posting! I'm such an **** at times lol.

Take care
Sharon

LOL thanks for making me laugh. Its the best therapy. One day on this forum and I am able to find a bit of perspective.

From some stories I can see my mum is not the worst case scenario(sorry don't mean to be offend other carers) and I do think with a lot of the suggestions there are solutions. For me the complete lack of empathy and support from my dad and brother were crushing me.

 

[sweetmole]

Good morning Sweetmole. I'm sorry but I've only just found your thread. I'm so sorry things are so bad for you. I can only agree with everything others have said. You urgently need to get a Social Work assessment for your mum - and a carer's assessment for yourself.

I can only add my own hugs as no new advice to give. x

Ahhhh sweet.Thank you

 

[Michaelaspeek]

I think perhaps Sharon left out a not there (easy to do, I do it myself).

If your father remains in the family home (and it doesn't matter what might on the mortgage or land registry) the house does not need to be sold to pay for care: it's considered a disregarded asset.

Are you sure Jenniferpa
I have lived with my mum for 15 years and own by law a quater of the house. The Financial assessor said that when mum dies (lovely words!) some of the house sale will have to pay for her CH?

He mentioned up to 4 thousand a year til she dies

kind wishes
Mickie

 

[sweetmole]

Hi just wanted to send good wishes and support, during Sept and October I was suddenly plunged into the situation of my mother (not dementia related) going into hospital not expected to come out again(she passed away 26th Oct) and she had cared for Dad 24/7, of course I needed to find him a care home. I was juggling looking after mum, visiting Dad, dealing with all the practical stuff making sure he had clothes and stuff in the care home and washing and treats for Mum and at the same time dealing with power of attorney registration, social services assessments, capacity and best interests meetings. fighting for support from memory clinic and CPNs who had no clue. I know what you mean about emotional fog it is disabling and the suggestion about lists worked for me. Every morning i wrote down what i needed to do, i stillhave to this as the nightmare continues for me as Dad is now in hospital and it looks like i will have to go through finding him another home as he is so much worse now after admission
to acute hospital after falling in the care home. Please don't hesitate getting in touch with social services, Dad's social worker was great, taking me through things step by step and giving me the facts about the financial aspects arranging for me to meet the finance officer for advice which was great. Not sure where you live but rules are different in England from Wales where I live.

You will find the strength to get the help you need, you just need to get some space to see the wood for the trees, hopefully TP is what you need, it helped me a lot, you know it won't help your mum if you go under, you are the most important person in this scenario holding it all together. Take care of yourself first.

First of all I am very sorry to hear about your mother. My thoughts are with you.

Ahhhh, thank you. I cannot believe the only place I have been appreciated for my efforts is on this forum from people I do not know. No one has thanked me. No one. Not one of my mum's 6 brothers or sisters. Not my dad and not my brother.

I have a question, what are capacity and best interest meetings? And CPN stands for what? Sorry just learning all the new acronyms lol.