Where to seek help

[David1963]

My wife has a ‘most probable’, diagnosis of FTD with MND and confirmation of this is a formality in my opinion. MND aspect is causing most noticeable issues with eating and speech but faciculations evident in upper arms and back but not manifesting as a problem so far.
Dementure aspect is causing me the biggest angst as any meaningful conversation or interaction is negligible now. This causes immense frustration for me as my wife struggles to understand most of what I say and spoken word is deteriorating fast. I realise this is awful, frightening etc for my wife but is largely oblivious to how bad things are now.

As we don’t have formal diagnosis then there is apparently no support apart from seeing neurologist every 6 weeks or so but where do I get help and advice day to day?

Sorry but having a low point as a carer

Thanks

[denise]

Hi David

my husband has mnd and ftd. I know its very difficult especially as you will continually get told that everyone has a different mnd and ftd. So it's like banging your head against a brick wall. My husband can understand, doesn't for long, but I can get through. It's hard work I know. I just have to keep repeating myself. My husband has behavioural issues which again is difficult to control.

there is the rare dementia support association, they do a lot of online stuff but I'm not sure I've found it helpful. you can check to see if there is an admiral nurse in your area. This is a dementia nurse, you can make contact through their website. Dementia UK or you could check out altzeimers disease website they have a lot of pamphlets on help. Let's see what else. I found age UK do a lot of work towards dementia care, not specifically ftd but they will give you a safe place for your wife in their daycare centres. Some also do singalong sessions which is also thought to be beneficial.

I hate to say it David but there is not a lot of dementia help. We have a diagnosis but a 4 month wait for assessment. It's really horrendous. I'm in Plymouth and I know help varies location to location with mnd and it would appear to be the same with ftd. Have you contacted your local mnd group? They have been extremely supportive of me.

That's all I can think of at the moment. You can private message me if you like. But yeah I've hit a low point myself.

Hugs to you both
Denise xxxx

[Banned]

Try your GP and explain you are struggling. Raising your voice is often required because as clever as some doctors are, they are not particularly bright.

Try your MP too.

[denise]

You do need to keep complaining because it's the only way you might get some one to listen. The poor woman who smoothered her mother must have been at the end of her teether. All I have been offered is care but we don't need care. I need to know how to manage the situation but no one seems to know. Daycare seemed to be the obvious solution but my problems return when daycare finishes. So it's my fault because I don't want carers. But it doesn't look like I can have day care and careers because I've been given a budget. If that isn't bad enough I have to pay a top up fee towards adult social care but I'm doing the majority of the work/all of the work. No carers payments for me because I've got my state pension which is an added insult. So as I am unhappy and not coping I'm going to have counselling provided. Ok I will try anything but this isn't really the solution. My GP hasn't been of much use if any because they are do not seem able to deal with the Mnd side of things.

There are memory cafés. I haven't been to one yet but it's on my list. I gather this is where you can receive advice from 'professionals' or just the opportunity to meet up with others in the same situation.

I've been awake since 1.30am. another thing I'm not getting much help with. 😕

[DeeH]

denise

Hi

I usually phone the MND nurse who liases with the GP if there is any problems. She has been really good at reading them the riot act, also I have been ok with the GP, for the most part.

I am getting a social work visit the afternoon and I want day respite so I can visit my parents who both have dementia. i will reference the Human Right Act if I have too. And my MP has been good at getting back to me by letter, when I invite him to attend various MND and Dementia meetings at the house of Commons (He is always too busy to attend but getting a letter is nice). He offered help with the level access door but they came and measured on Monday so fingers crossed.

I too do not wish daily carers and well make it plain I am not refusing help just it has to be tailored to my and Thomas' needs.

Sorry you are getting the absolute run around. My Hospice Family support call, just says "That must be hard to hold together" every 10 minutes or so. But once a week it is good to rant.

HI David
David1963

You need to get a Formal diagnosis, phone the Neurologist secretary and say you need a formal diagnosis to access help. Phone every few days if required.

Sometimes you just need to be a pain in their butt.

Both my parents have dementia and I had to phone social work pratically daily, to access help for them.

If you look up Daily Activities of Living and go down the list of all the things you do for your wife. This will help you frame how you ask for assistance.

Carer Burnout is a risk for you.
Ask the GP for a referral to Speech and Languge Therapist (SALT) and a Dietician. We had a phone consultant this mornings and she is sending out some samples of fortifed drinks, which will then be prescribed.

You can phone your local social work dept and speak to a Duty Social Worker. If that does not help. Phone YOUR GP, say that you are struggling as a sole carer and YOU require help for your mental and physical health.

Like myself and Denise, if you are a sole carer and you get sick, the person you care for will be the responisbility of the Social Work Department.

Although I am not going to abandon my husband, you have to say how at the end of your rope you are. And keep at them. I had to get my parent's local MP involved and my mum Tweeted Nicolca Sturgeon. The social work got the finger out within 24 hours.

Best of luck

Also make sure you are access any financial help you are due, possible local Carer group and Citezin Advice can go through this with you. The MND Association has a helpline.

Keep in touch, I know that this is a bit of an information dump and you are busy, actually caring. But please ask anything.

Someone here will have been here.


Donna

Carer of Husband, diagnosed MND July 2020.

[Banned]

It is red flag after red flag on this forum. Ask for a new GP Denise, one that actually understands.

Frankly, no one seems to give a sh*t.

All I can say is, "Well done Denise and Donna".

Your everlasting love is being recognised as I have witnessed other carers on this forum who will spend eternity in hell, in old money.

Love and cuddles xxxx

[denise]

Graham you are lovely. I just cant wait for you to come home.

No serenade? No music? 😳

Lots of hugs, cuddles and kisses.
😘💕

[DeeH]

Thanks for the support Graham

Social worker suggested Direct Payments to pay for carers so we have more flexablity. Don't know how long that will take.

Dietician sent fortifed drinks which arrived today. Just getting Thomas to sample a few, his appeitte is not great.

[denise]

I have direct payments. Its been paid into an account for me to decide how to use it. I'm going for daycare and then look at our options later. I'm getting charged a top up fee which varies area to area and dependent on your financial status.

[DeeH]

denise

That's good to know.

Is it best to open a seperate account so things are clearer?

Just waiting on the financial assessment which is income based (we are on Universal Credit) so not thinking there wil be any issues.

Fingers crossed


Donna

[denise]

They pay the money into an account so it is separate. Then they bill me. It's like at the start of each week I use my card and they bill me £32. I'm keeping track of everything in my diary. I can see it being an administrative nightmare. I didn't expect to pay as we are being supported by our son and son-in-law for now. So no rent and our electric and gas services have been topped up. I explained that and if and when we do need to start paying I was told they might go after our son for payment. So you can imagine how I feel about that. Hes already supporting his parents in law who are older than us. It makes you feel like telling them to stick it but I know at some stage my ability to cope will be impossible. It just adds to the stress.
😐

[David1963]

Thanks for all the replies and advice, sorry for being slow to respond but things are ‘ busy’ here

[LindaB]

David1963 Hi...when I had my initial 'suspected ' MND diagnosis I was able to access support via a Community Neuro Rehab Team. Their view was it was 'something' neurological.

Area to area may be different...GP should know. Good luck👍🏻

[Banned]

Yes, DP is a good option Donna but the management of the DP falls firmly on you. I have one myself and that is why I developed my comprehensive care app to help me run it.

Barry's fave especially for you powerhouses...

Tina Turner - The Best (Official Music Video) [HD REMASTERED] - YouTube

Love and hugs xxxx

[Shaun wheadon]

Hi all
My wife Tracy 52 years old was diagnosed with MND August last year by the end of November we were noticing changes in her and suspected FTD, spoke to our neurologist at Maidstone Hospital and she referred Tracy to Kings, went and had neuropsychology tests end of January.
On February 9th she should have been having a PEG tube fitted but developed aspirated pneumonia and was admitted to hospital, while in there she pulled on 3 cannulas, a nasal feeding tube and her catheter.
While in hospital we got the test results confirming FTD, the doctors can’t believe how quickly this has progressed.
After meetings with doctors, it has been agreed it is too dangerous to fit the PEG in case she try’s to pull on it.
She is back home now, she does not feel hungry or thirsty, is only eating small amounts.
Felt like my world was ripped apart when we found she had MND and now FTD.
We are just watching her get weaker and weaker.
we have 2 daughters (21 and 27) they seem to have accepted that if she won’t eat or drink enough there is nothing we can do but I can’t !!
she is my wife ‘in sickness and in health’ !!
I should be able to make her better.
We have a great team around us, but everything now is a waiting game, one good day, one bad day. She is now sleeping more.
Want someone to give me timescales but that’s not going to happen.
I’ve lost the woman I married, she is still in there but it’s not the same.
I want normality but have forgotten what normal is.
Taking each day as it comes.
sorry for the ramble.