So now what....

[Smox2016]

My father in law was diagnosed with Alzeimer's Disease this weekend. My partner, and bro/sis in law have had a suspicions for almost a year now and have finally managed to get him to agree to talk to someone. We therefore, aren't surprised by the diagnosis, as devastating as it is. He also has osteoporosis, and since his retirement 4 years ago has become increasingly socially isolated and mentally/physically inactive. A lethal combo for sure.

But now we're in a position where we don't know what to do next. My partner wants to wait for instructions from the doctor and read more, which sounds sensible, but my view is that other than a diagnosis, and hopefully some pills - the NHS aren't going to give us a day-to-day plan of what to do and therefore we should be procatively working to try and address the poor diet, loneliness and lack of ment/phys stimulation. Does anyone have any advice on what we can expect from the NHS and what we should be pushing forward/doing off our own backs to help him?

 

[Beate]

I am afraid no one will present you with anything much, you'll have to be proactive. His GP can refer to Community Health Services like Foot Health, Continence Service or whatever else might be required, but you'll have to ask for it. There are also community health dentists that deal with problem patients including dementia and do house calls.

The NHS will only deal with physical symptoms, not with social care. If you want sitters, carers, a day centre or respite, Adult Social Services is your first point of call. They have a duty of care for vulnerabe adults at risk and should give him a needs assessment and you a carers assessment. You're entitled to one by law. Then they can figure out what help they can give and what it will cost your dad. His finances will have to be assessed to calculate his contribution.

It's also a good idea to contact your local Alzheimer's Society, Carers Centre and Age UK. They can offer practical and emotional support, help filling in forms for Attendance Allowance, LPA etc and also signpost carer groups or activities like Singing for the Brain. There's a lot of support out there but accessing it can be tricky if you don't know where to start, but you can always ask here as well.

 

[Spamar]

I was going to write exactly what Beate has said, with one addition. If you can get him used to going out and socialising at this stage, it will be very useful later. Too many people don't want to go out or have people visiting and it always seems to be a problem later when care is needed. Fortunately OH was used to gardeners, cleaners from long before me, and we had a fairly active social life, so a befriender, or someone to take him for a walk, gave me time to do other things without problem.
Good luck!

 

[HillyBilly]

But now we're in a position where we don't know what to do next. My partner wants to wait for instructions from the doctor and read more, which sounds sensible, but my view is that other than a diagnosis, and hopefully some pills - the NHS aren't going to give us a day-to-day plan of what to do and therefore we should be procatively working to try and address the poor diet, loneliness and lack of ment/phys stimulation. Does anyone have any advice on what we can expect from the NHS and what we should be pushing forward/doing off our own backs to help him?

Expect nothing! Read up on the disease via books, websites etc, look into compassionate communication, seek out local dementia groups, cafes, day care, befrienders. Practical stuff such as LPA if not already done, make sure bills are being paid, get his finances/paperwork in order, check out care homes for the possible future. Have fun!

 

[Pickles53]

Sorry to add to what is probably feeling like a long 'to do' list, but he should also be entitled to a discount in his council tax from date of diagnosis. If he lives alone, discount will be 100%. Look on the council website or call them about the 'SMI disregard' as each council has its own procedure for applying.

 

[Kjn]

Just keep talking here, you'll get the most help, advice and support ...we all fight the battle together .

 

[nicoise]

A slight aside from all the excellent advice you have had here is a small thing, but one which can escalate and have greater implications later.

One key thing for my mum was eating - as in she lost interest in eating by herself, and had also lost the ability to cook for herself. She also developed a seriously sweet tooth, so seemed to live on white chocolate. So we hadn't realised initially but she lost a great deal of weight, and general condition, which made all her physical and mental problems worse. Dehydration and lack of nutrition alongside other ailments meant she was vulnerable to infections, had less strength and stamina to be active, and was more confused and struggled than she needed to.

I don't know how close you family live to FIL, so whether you can work out a system for his meals with deliveries, or having meals with him, can be a great help in nurturing him and staving off some of those problems I've mentioned.

 

[Shedrech]

Hi Robynsmithuk
lots of good thoughts so far
I'd just add - it's great that you want to support your partner and the family, and that you want to be proactive
just be aware that sometimes the in-law is able to react a little more objectively to a diagnosis and the overall situation, and maybe takes a more pragmatic approach to what is to be done - whilst your partner is very much emotionally caught up, dealing with their own and everyone's feelings (I'm not at all suggesting that you are unfeeling) - this can lead to some tension - so unless there is a real need for urgency, maybe take things at your partner's pace and do the research together so that you both have the info you need to support your FIL
then maybe suggest you go further with the admin (if that's your forte) to take that strain, so your partner can concentrate on your FIL's care needs
your partner is going to need much sympathy and emotional support too - it's a challenging situation all round
sorry if this was so obvious it didn't need saying
best wishes to you all

 

[Mannie]

My father in law was diagnosed with Alzeimer's Disease this weekend. My partner, and bro/sis in law have had a suspicions for almost a year now and have finally managed to get him to agree to talk to someone. We therefore, aren't surprised by the diagnosis, as devastating as it is. He also has osteoporosis, and since his retirement 4 years ago has become increasingly socially isolated and mentally/physically inactive. A lethal combo for sure.

But now we're in a position where we don't know what to do next. My partner wants to wait for instructions from the doctor and read more, which sounds sensible, but my view is that other than a diagnosis, and hopefully some pills - the NHS aren't going to give us a day-to-day plan of what to do and therefore we should be procatively working to try and address the poor diet, loneliness and lack of ment/phys stimulation. Does anyone have any advice on what we can expect from the NHS and what we should be pushing forward/doing off our own backs to help him?

What I would say is ...do both....

For poor diet, loneliness and lack of physical and mental stimulation, also general guidance, you can ask his GP to engage social services to make an assessment and provide guidance. They may refer him for a day centre, many , most of them are brilliant.

For learning more about how it will be , going forward, typically the NHS will assign a Community Psychiatric Nurse, and they will typically refer you (his unpaid Carers)for a training course for 6 nights.

This book is highly recommended...
Dementia the one stop guide - June Andrews

I always think it is like having children, you learn as you go along and, it will change every so many months anyway, as his illness progresses. Each time a new issue happens you re-engage GP/social services /CPN

Hope it helps a little to get you started, and just know that his GP should be very helpful and ,if they are not ...then just see another GP in the same practice , you can do that any time without even changing his "official GP"

My own tip is to get a big A4 notebook and make notes daily as you go along..it will come in handy for all sorts of things..eg when you visit GP. cPN, consultant, social services, you need to have a well documented history ...the better organized and prepared for any meetings, then the more success you will have in getting what you feel you need.

You can also use the App called "Jointly" to help your care "team" work together efficiently.

Keep posting..we can help !