Early Onset & PIP

[feinn]

I wondered if anyone here has experience of the PIP assessment process? My wife was diagnosed at 58 with Alzheimers, after an initial MCI diagnosis in 2016. Her memory issues continue to worsen and there is increasing confusion.
Anything to do with a technology is beyond her, emails, websites. We had a bad day recently when she wanted to order something on Amazon and realised she simply couldn't navigate it. Short term memory is terrible with things lost after only minutes.
For example we are downsizing but viewing houses is difficult as by the time we get back to the car she has forgotten what we saw and why we are there.
She stopped working in 2015 and I quit in July 2018 to be with her.
Luckily we had been savers and had rainy day money. However, we are burning through our savings and I worry about the future. My son tells me to apply for PIP and a carers allowance but the assessment seems to be purely about physical impacts.
My wife is a youthful looking 59, slim and fit. She likes to go for long walks so we spend a lot of time walking and until you spend a little time with her you wouldn't spot the issue. I don't want to humiliate her by contradicting answers she may give in the assessment. For example she'll say she still cooks and she occasionally does but if you don't want it undercooked or burnt, and the gas left on afterwards we do it together. And it is simple meals now when once she created marvellous dishes. No matter that she'll have forgotten I said that when we leave, I find negative feelings stick.
Does anyone know if there is any understanding of and allowance for alzheimers sufferers in the assessment process?
Thanks

 

[Cat27]

Welcome to DTP @feinn

I filled the form in on my Dad’s behalf & said exactly what was going on. I also added a note to say that if asked, Dad would say he was absolutely fine & that I was a nasty liar.

 

[canary]

I would say to get someone to help you fill it in as it is easy to underestimate their abilities, or think that certain things dont count and if you dont get it - appeal.

 

[feinn]

Thank you all for the advice. I appreciate it.

 

[LynneMcV]

Hi @feinn, my husband was diagnosed at 58 and had no physical issues at that time at all.

We went through the PIP assessment and he received the highest rate for both parts of the PIP assessment.

On the mobility section, although he scored 0 in the 'moving around' section (quite rightly so, as he could literally walk for miles) - he actually scored maximum points under the 'planning a journey ' criteria because he simply could not plan a journey.

That, coupled with all the daily living issues he faced as a result of the disease affecting his brain functions, meant he received the full rate for both sections of PIP.

I filled out the form describing how on things are on the worst of days. I also repeated things where necessary as the pages get split up for assessment so I wanted to make sure that whoever was reading a particular page would have the full facts and not assume that they had read them on a different page.

If unsure, I have heard that groups like Age UK or Carers' Support are great at helping to fill in these forms.

 

[Canadian Joanne]

Not to do with this sort of assessment, but when my mother was seeing the consultant, I used to sit slightly behind her so I could shake or nod my head regarding her answers. She wasn't aware of this and it helped get the points across.

 

[feinn]

Hi @feinn, my husband was diagnosed at 58 and had no physical issues at that time at all.

We went through the PIP assessment and he received the highest rate for both parts of the PIP assessment.

On the mobility section, although he scored 0 in the 'moving around' section (quite rightly so, as he could literally walk for miles) - he actually scored maximum points under the 'planning a journey ' criteria because he simply could not plan a journey.

That, coupled with all the daily living issues he faced as a result of the disease affecting his brain functions, meant he received the full rate for both sections of PIP.

I filled out the form describing how on things are on the worst of days. I also repeated things where necessary as the pages get split up for assessment so I wanted to make sure that whoever was reading a particular page would have the full facts and not assume that they had read them on a different page.

If unsure, I have heard that groups like Age UK or Carers' Support are great at helping to fill in these forms.

Thank you. I guess in part my reluctance to apply is also about admitting how far down the road we are. But I'll follow your advice and make the issues we face clear.

 

[Helly68]

With PIP, be clear that your wife needs prompting and supervision for all household tasks, as you describe with cooking.
Although there is an emphasis on the physical with PIP, even if you could walk for miles, if you have no idea where you are going, for example, or risk stepping out into traffic,then you need help getting out and about. I am about to move form DLA to PIP myself. Waiting for the forms - they take ages....

 

[LynneMcV]

Thank you. I guess in part my reluctance to apply is also about admitting how far down the road we are...

I completely understand, it is a big shock when we start to see the situation more clearly.

To be honest, I was a bit indignant when I was urged to apply for PIP on behalf of my husband. I'd never heard of it, and we'd never applied for benefits of any kind before in our lives.

It was only a few weeks after diagnosis and at the first meeting (memory cafe) we'd attended, run by Alzheimer's Society. We'd gone along more for the social side of things, but as new members the advisers came and sat with us, introduced themselves and provided all manner of fact sheets and info on different services - as well as recommending we apply for PIP.

To be honest both of us felt it was far too early for that and my husband even told them he would feel a fraud if he were to apply for it.

You see, we were managing the situation quite well by ourselves, without the outside help.

I had always been the one to do the cooking, plan the shopping, do the laundry and gardening and generally do DIY and fix things around the house. Because of this, neither of us had really taken on board just how much things had changed. It was only when I took a step back and removed myself from the picture that we started to see the true picture.

Yes, my husband could make himself a cuppa, a cup-a-soup, make a sandwich, find snacks in the fridge or cupboards - but he could no longer heat things up in the microwave or use the oven/hob without someone overseeing the situation. While the food was in the cupboard for him, he wouldn't have been able to draw up a shopping list or carry out a weekly shop at the supermarket by himself.

Yes, he could get a bus from A-B on a well used route - but should anything interfere with that journey, such as a diversion or moved bus stop due to roadworks, he could not work out what to do without help. He could read information signs and directions - but he could not process what that information meant.

Yes, he could shower himself without a problem, but I had to get a temperature lock fitted to the shower to make sure he didn't scald himself and support rails to help him in and out of the bath.

This was just looking at the tip of the iceberg. Once we stopped asking ourselves if we were managing (yes) and started asking ourselves if my husband could manage these and other things on his own (no) - the harsh reality hit us both.

Even then, when we put the paperwork in, we thought that my husband would only qualify for the lower rate of PIP. We hadn't bargained on how long it would take to process the application, and by the time he was actually assessed (at home) five months down the line, he had definitely crossed over into the higher rate category of PIP (which was then backdated five months to the date of application).

Hopefully the turn-around times are better these days. PIP made a big difference to his enjoyment and independence. We used it to help fund social activities, day trips, holidays, clubs and various adaptations around the home to make things easier as things progressed. He deserved every bit of happiness and relief it provided him

 

[tss502]

Hi,

We applied for, and received, PIP for my OH, with young-onset alzheimers. He was diagnosed at 55, but was physically fit and active and spent hours walking and cycling. We did get the enhanced rate, which surprised me somewhat.

I filled in the forms on his behalf and I think the key is to be honest about what your OH can't manage. The assessor came out to see him at home. This was a bit of a strange part of the process, as I'd arranged for them to come at a time when I could nip home from work and be with him to assist in answering any questions - as I knew he would probably just say he was fine. However, when I arrived home I discovered the assessor had already been earlier that morning. They had changed the time of the appointment but didn't appear to have informed us! I wondered at the time if they were trying to catch us out so that they could see him without me being present, and presumably deem him ineligible.

However, that's not what happened. I did ring up the office and complained, and also chased them to follow up the Doctor's report which is part of the assessment. Very shortly afterwards we received the letter telling us he qualified at the enhanced rate.

PIP helped enormously with social activities for him, and keeping him engaged in the community. It also opened the door to other benefits such as the Council Tax disregard, and carer's cinema and theatre cards.

 

[nellbelles]

Our PIP has currently been suspended (after 4+ years) because my husband has just moved to a care home but it should be restored because he is self-funding and should carry through until he gets his state pension.

Hello @Sarahdun PIP once awarded continues past pension age, unless health issues improve or as you mention you are no longer self funding