Dementia diagnosis

sulphate

Dad is 83 and today has had a diagnosis of dementia confirmed by a memory clinic. This has not come as a surprise to Mum and I. He will be put on medication but I am concerned about the future.

Can anyone offer any practical advice on what should be done now, there is a wealth of information online but I’d still like some personal experiences.

I am very worried about what the future holds after seeing my husband’s late grandmother decline and die due to dementia, I know how awful it is. In terms of family help, dad is not bad enough to need care yet but it just me and my mum. My mum still works and helps with childcare for me as we have a nearly 3 year old but I am expecting that will change in the near future. I currently work part time so I am either working or looking after my son but we are also expecting another baby in March so I will have even less time, i am worried about how much help I will be able to offer.

Just looking for some reassurance/ comments

Thanks

gettingtheresometime

I can’t offer any practical advice unfortunately but I’d look at alternatives for childcare - did you intend returning to work ?

Would you qualify for free childcare?

I’d also have a heart to heart with your mum - she needs to be honest with you about how she’s coping with things, not just now but as time progresses

elsien

If he hasn't already done so, and is still well enough, your dad should think about making a power of attorney for both finances and welfare. Having a dementia diagnosis doesn't rule that out but you would need to check he has capacity to do so at the moment.

Also look up information on Care Act assessments on your local authority website. That'll be mum's route for extra support for both your dad and for herself if and when she needs it.

Bear this lot in mind for someone to talk to.
https://www.alzheimers.org.uk/info/20012/helpline?_ga=2.133243662.184363289.1515534204-965208092.1445678019

And most importantly, (and hardest at times) you and mum don't feel guilty about taking time for yourselves when you need to. You're no use to your dad if you're running yourselves into the ground. So find out about services now, check out local carers groups, respite etc. Because it's better to know what's out there now than trying to find things when you're struggling.

leylie

Sorry to hear your news and can understand your worries.
Did the Memory Clinic give you any contact details for local support? - normally under the 'umbrella' of Dementia UK or Alzheimer's society. Support will vary from area to area so it's good to make contact with your local group.

I don't have direct experience of living with someone with dementia but in my work (supporting people with sight loss) I have met a number of people affected by dementia.

You say he isn't so bad that he needs extra care at the moment - which is good. Do remember that everyone is different so your Dad may not develop the same way as your husband's Grandma.

One bit of very practical advice I would give is to keep a sort of diary of what he struggles with. This only needs to be for one week every month or 2. This will be very helpful when it comes time for applying for support - whether it's about finding a way of doing something or a bit of equipment e.g. a different type of clock if he struggles with telling the time; applying for financial benefits; or (eventually) getting a care assessment. For financial and care support it's all about 'risk'. Age UK are another good support organisation who will have a lot of advice about support in your area - and when it comes to applying for benefits I would recommend using one of their trained volunteers to complete the forms.

Good Luck

Savvy_Sue

elsien wrote: »

So find out about services now, check out local carers groups, respite etc. Because it's better to know what's out there now than trying to find things when you're struggling.

This. And encourage your mum to start using services now, even if Dad doesn't need them, so that when he DOES need them it will be maybe sort of familiar.

Dementia Friends do a quick training course which someone ran at work for us. That was very helpful.

badmemory

Definitely agree with working out what he struggles with. I have a friend whose mother would eat anything in the fridge, anything at all, which unfortunately on one occasion included raw chicken giblets. Luckily, whilst it might turn our stomachs, she suffered no ill effects.

markdebby

My advice is to enjoy the time you have together now. If he goes on medication it might give him more quality time.
Iv worked all my working life with Dementia clients if you want to ask any questions pm me. Sylvia

hazyjo

It's tough, I know. As elsien says - Power of Attorney! That's really important as the longer you wait, the harder it will be as their health/mental stability declines.


Another thing - don't delay. It's often left to late to get people the necessary care they need as people are in denial and wait until something serious happens before admitting they need full time professional care. Be as practical as you all can.


It may seem like an odd one, but try to find humour. My closest friend at work is going through it with his mum (Alzheimers) and so did someone else in his room with his mum. He tells me lots and sometimes you don't know an appropriate reaction, but he says the humour helps. Things he'll find in the bin, or the fact his mum got cross when the microwave plate disappeared, blaming everyone else. Silly things really that if you didn't laugh, you'd cry.


Jx

Out,_Vile_Jelly

Dementia is an odd thing; it ebbs and flows and sufferers can have very lucid days interspersed with being distressingly confused.

As advised, you need to look at the practicalities of finances, and also have a frank conversation with your mum about how exhausting it is to be a full time carer. At some point she will need professional help so that needs to be acknowledged.

On the personal side, take the opportunity to spend as much time with your Dad as possible. If there are any old family albums now is the time to go through them with him and make a note of everything he recalls. You could also consider recording him talking about what he remembers from being a child in the War, his first job, his hobbies, meeting your Mum etc. The older memories stay vivid longer and are "safer" territory; it would also be nice for the grandkids to have a memento of his voice.

I can have an 80% normal conversation with my elderly relative who has dementia; there's just no point asking about anything that happened last week. That part of the brain just doesn't work anymore and pushing them to try and recall increases confusion and agitation.

onlyroz

It is true that all sufferers progress differently and you shouldn't make any assumptions about how badly he will be affected at this stage. Practical advice: yes to Power of Attorney (both health and financial) while he still has capacity. Also take steps to mitigate short term memory problems. For example, layout his daily medication in a set place. Write today's plans in a list on the fridge. Ensure that basic stuff like washing and changing clothes is carried out - these are the things that are often forgotten. Remove responsibility for things like ensuring the doors are locked or the cat is fed. And most importantly try not to get frustrated. This is the hardest thing - particularly if conversations become circular, or small things are forgotten. Also ensure that all things like attendance allowance are claimed, and check whether any respite or support groups are available.

Butch1985

I'm going through the same thing with my grandfather as well, he was diagnosed over a year ago. We started to notice changes in his routines and personality. For example he started going to the pub after decades of not being near one, it's multiple times a day now but he very rarely has more than a couple of pints.


He would get annoyed and frustrated at being told what he can and can't do which is understandable but we just worry about him. Physically he is in great shape for a man in his 80's though so he wants to keep active.


He goes to a class every week where they do activities which he enjoys and hopefully an extra day per week will be sorted soon.


The problem is he isn't taking his medication regularly, I know as I have seen the blister pack and it's more than half full. My Nanny (his wife) has tried to give him the tablets but oftentimes he flat out refuses (change in personality, sometimes comes across aggressive). He can't remember what day it is and is constantly mis-placing things i.e. keys, phone, wallet etc.


We were at the memory clinic recently and it was suggested (not for the 1st time) that carers visit the house twice a day to give Granda his medication and to see how he is. Nanny wouldn't hear of it at all, she simply refuses to allow them in. I think it must be a pride thing but it's so frustrating for me & Mum who are the only others able to help in anyway.


Only advice I can give is to accept whatever help is offered i.e. carers visits and make sure he's taking his medication. Unfortunately it's a progressive illness and it's more about managing it as opposed to curing it