Dad has been diagnosed with Alzheimer's.. support please

[Capricorn8990]

Hi all,

I'm a 28 year old female, currently 17 weeks pregnant with my own home and partner, good job but severe OCD managed through sertraline.

I'm adopted and long story short I am the baby out of the family. My adopted parents are 83 and 84 this year. They are my absolute world. My mum is super active and acts like a 40 year old whereas my dad has a lot of health problems including lung issues (COPD). He was diagnosed with vascular dementia at 78 and on Tuesday just gone we found out that he has Alzheimer's too. This was shown on a brain scan.

We noticed something wasn't quite right, he thought it was September in January and forgot when my birthday was. He is beginning to think that his iPhone is a remote control and when's he's told things he forgets almost instantly.

He's been prescribed medicine which I've collected and he is having the dementia team come to the house. I've applied for POA albeit prematurely but it can take a long time to process and mum and dad agreed to do it now.

What else do I need to prepare for? What can I do to help my mum and dad?

Can people be honest with me about how the disease affects people? I don't want it sugar coated. I am pretty strong but just want to be really informed about what may be coming as I know that sometimes things don't progress really quickly.

Many thanks in advance x

I'm sorry about your Dad's diagnosis. Dementia can be really hard but there is support there. I would really recommend the Dementia UK Admiral Nurse helpline / closer to home clinic. You can book an appointment (phone or zoom)with a specialist nurse who will be able to talk through all of these questions, what support is available, benefits etc. and give you time to talk about your own feelings.

closer to home

Age UK and Alzheimers Society are really good too in helping get forms filled in, letting you know what groups / services are available locally and in understanding dementia. The Alzheimers Society website has some good guides you can order that give really practical advice, the "caring for a person with dementia a practical guide" is a good place to start.

Teepa Snow is another useful person, she has some really helpful videos on YouTube and a website.

If you want to hear from people who are living with dementia Wendy Mitchell has written a couple of books and does a fair amount of talks / podcasts about her experiences.

Oh, one more thought! You can get lots of little aids / adaptations to make things a bit easier and more straightforward for people. Alzheimers Society have a shop section on their website or I like alzproducts.co.uk - things like simple TV remotes or phones, all sorts of reminder aids to help your Dad stay as independent as he can.

You do absolutely right to get the POA sorted now. The solicitors will have to be satisfied that he knows what he is agreeing to so leaving it any longer would be a risk.
I would advise, if possible, to put a carer in place as soon as possible. It’s a lot easier to find someone and then build up their hours gradually, than to look for someone once he needs a lot of support. It will also help him get used to it. Your GP may know of local carers/agencies. Have a look at finances to understand what care options you have or may not have.
It’s really tough and there will be sad days and then you might get days where everything feels fine and manageable. Talking about it helps. So many people understand and have been through similar things but I find it’s just not widely discussed. One thing I have learned though is that it’s different for everyone. Things can be relatively stable for months/years and then change quickly.
For your dad, having a daily routine and keeping hydrated are two small things which can help. And look out for your mum too. I found it really helpful when a doctor friend acknowledged to me that it is completely shit, but people DO manage.

A few things. I'd really suggest looking at the Alzheimers UK site. The difficulty is that the disease is quite individual in how it affects people. But memory loss with Alzheimers tends to happen first. It makes everything more difficult as the person struggles to remember things that used to help them. There's usually a phase where the person finds written reminders and cues helpful - my Mum used to have a checklist on her door and a diary, and there was a long patch where she remembered to use them and write things in them and look at them. We put a financial power of attorney in place and she simplified her affairs as much as possible - one bank account for example, she used to have lots. Something incredibly helpful she did was to formally tell her GP that they were allowed to discuss her care with me and my sister. She woudn't put a health POA in place - fair enough - but doing that meant we could help her.

Physical and mental illnesses are very tough to deal with in dementia but they really need addressing - infections, depression, hearing loss etc can be treated and that makes a big difference. A dossett box from the pharmacist may be available if they have trouble remembering details of medication.

You can just get used to one stage when the person moves on to others. Communication changes a lot and that can be hard to deal with. Repetitive stories and forgetting what you've said to them can still catch me out even though I know it's going to happen - i'm happy that my mum doesn't remember that her boyfriend died, but it's still odd to hear her talking as if he's still alive. Ways of encouraging conversation change as well. Putting people on the spot/under pressure by asking an open question may not work - 'what have you been up to today?' but making a statement to help them remember may work better 'I wonder if you got out shopping this morning' - they may be able to pick up the key words like 'shopping', remember more and can answer more easily. Or bringing up memories not by saying 'do you remember Bournemouth' but by starting the story off 'I was just thinking today about the time in Bournemouth when we rented that beach hut' - will be much more helpful in them being able to join in.

To be honest I wouldn't try to know everything about the disease, it will get here soon enough.

A lot of people with alzheimers are hard to help because they forget how much they forget/ get confused and don't ghink they need help. They think you are making a fuss about nothing/trying to convince the world they are mad. My mum is a case study on that. Doesn't know how the heating got turned off/phone got unplugged/that rancid meat came to be in the fridge. As she doesn't remember it must be someone else who has the problem so solutions get rejected as she doesn't accept she needs them.

Don’t argue with him about his view of the world, or even present logic as to why what he’s telling you couldn’t possibly happen. He won’t believe you and its just upsetting for both of you. But at the same time, don’t baby him, treat him as an adult with valid opinions.

Some people with dementia can lose their inhibitions and say what they think, or they can start feeling that, since they can’t find someone, you must have stolen it. As hard as it seems, remember this is the disease, not them. Easy for a carer to do, much more difficult across the emtional bond of daughter/father

Something not someone

Is there a will in place ?

I agree with getting help in now, under the guise of a cleaner or nurse !, even a gardener too, dropping in. Then you can build up as/when required. My parents refused this when they didn't need it, but now they do, my mum can't cope with anyone new coming in - it's been her and dad for so long.

Also, again from our experience, try to get your dad out somewhere once or twice a week to give your mum a break and to normalise him being away from home with other people. My mum was out a lot pre-dementia, but slowly gave everything up because the bookclub people 'went on and on', the talks at coffee club 'didn't make sense' etc. I wish we had introduced some kind of supported visit (day club or whatever) then because she now won't go anywhere without my dad.

The progression of the disease is different for everyone. My mum (8 years in?) Is acutely aware of her difficulties and how different she is now from the capable, social person she was. She hates my dad being out of her sight, or talking on the phone, and he can't bear to see her distressed, so their lives are becoming more and more tiny and claustrophobic. His mobility is suffering because he never has the chance to stride out anywahere, and he has the same circular conversations day in, day out.

It is heartbreaking on all sides. Awful disease. Love and strength to you all, OP.

I’m so sorry to hear about your dad’s diagnosis.

I’m the same age as you and my dad was diagnosed aged 83 in September 2020.

Alzheimer’s affects everyone so differently it’s really hard to say how things will progress. For us, my mum became an “official” carer after his diagnosis and although he had carers come four times per day, as he deteriorated the strain on mum was unreal. I would suggest getting him used to having care now as it may be unsettling for him down the line. Try and encourage good hygiene and manageable daily routines so he has some form of structure. You’ve done well to start sorting POA as better to have in place before you need it. Definitely start badgering the social to come and do an assessment to see if he is eligible for any home aids. We had lots of support from Age UK.

Ultimately the strain on my mum was too much and dad went into a care home. We were all devastated but his safety had to come first.

We are struggling with this at the moment.

Unfortunately the memory clinic won’t even help as DF (age 72) drinks.
The level of assistance he suddenly needs in the last couple of months has really ramped up and we are now having to tell him to get changed so we can put his filthy clothes in the wash or he just wears the same thing every day. We were already doing his cleaning and shopping but he is getting messier and dirtier so will organise a cleaner a couple of times a week too. He is calling repeatedly several times a week but if we miss calls and quickly phone back he doesn’t know what he wanted, he has gone out a few times after having a drink in the evening and, luckily, been brought home by people who know him.

We know he will need to go into a home very soon as our daily visits just aren’t enough but he doesn’t know that he can’t look after himself so we know he won’t agree. He has a dog which he manages to look after and microwaves himself food and thinks he’s fine! Thankfully POA was sorted hastily last year after a trip over whilst walking the dog meant he had an overnight in hospital. He really wasn’t bad last year, just a bit forgetful.

Both DGMs had Alzheimer’s. It’s a very cruel disease

Dad is almost 80 and has for the last year or so starting repeating himself, or forgetting that he's already said something, or asks us the same questions on a very frequent basis.

He's been living alone for over 16 years, has just one or two friends, no visits from them however. He drives to get a daily newspaper, completes household chores and then spends the rest of his time completing the Times cryptic crossword each day and reading. (He doesn't watch the TV, never listens to the radio and doesn't play music anymore - in fact, I feel his interest in most things he used to enjoy have faded away. He goes shopping on a weekly basis although I've noticed this can go from 7 - 10 days depending on how much he's been eating. Yesterday he mentioned he had to have his brakes checked, more expensive than he thought but I mentioned that his car was a little old and he replied that it was about 7 years old and he paid 6k for it - hubby later confirmed that it was 2004 and he paid less than 2k. These sort of things. Dad has always been incredibly astute, a financially-minded business man. Sadly, these instances are happening more frequently and we are very concerned.

If anyone were to mention anything to him about this, he's immediately on the offensive and is starting to become slightly agressive; says that there's nothing wrong with his memory. If I were to say about going to see a doctor... well.. let's just say, I daren't!!

We've mentioned to him so many times about living with us but he doesn't want to. He's absolutely extremely stubborn, until he says he has no choice but to.

When we visit him we know he still looks after his personal hygiene, still wears a shirt and tie each day, has his particular routine of household chores such as hoovering, washing, cooking dinner (meat/veg etc - though no longer on a daily basis as he once did); and usually does a little in his garden - mowing lawns or digging over the veggie garden, weather permitting.

I don't know, however, whether he is suffering some general memory loss due to old age or whether it's the start of something more serious. Do I have a quiet word with his doctor? I don't want to upset Dad and mention these episodes to him which he'll only deny (when I have done, he's just said that he simply forgot or wasn't paying attention to what I was saying.. as an excuse). I can understand he may be in denial, fearful of the possible lack of control he may have now and in the future, but what can I do at this stage? We're too far away (5 hours) with difficult work commitments to visit him regularly hence having him live with us but he's refused every suggestion because 'What am I going to do with my things? I like everything how it is - it suits me!' and.. "I don't want to live where you live - why can't you live near me?!' (We've told him so many times that this is financially and practically impossible for us.. but he doesn't seem to understand.)

The only other family member aware of this situation is my aunt and whilst she recognises something is 'off' with her brother, she then just wants to chat about her grand-children for the next hour or more.

Any advice please - feeling a little helpless.

Hmm @GoinSouth - from your description you're seeing changes but actually not seeing anything that suggests your dad can't carry on. It may be that it's exactly because he knows it's impossible for you to live near him that he suggests it. I think you're probably right that he fears what is to come, and perhaps he does the crossword every day as a kind of personal test of how he's doing as well as a mental exercise. Tbh if he's still able to do the cryptic crossword he's got a lot of mental flexibility (my mum stopped being able to do that years ago).

All in all, I would try to relax. The future will happen when it happens. The deep familiarity of his own area, shopkeepers that know him, neighbours who say hello and may even be keeping a quiet eye, are not to be given up lightly. You could if you like make sure that someone local like a neighbour and his GP have your contact number, and you could ask his permission to do that. But a diagnosis may not achieve much.

The alzheimers society website has a little table contrasting alzheimers memory loss with normal age related memory loss

The medicine may well slow down the illnesses progression, so enjoy spending time with your Dad over the next year or so. Patients present differently, but Alzheimer's Uk can provide lots of advice and support. He should be linked to a mental health nurse - they can help in finding support for you and your mum. Your Dad will be fine in his world - his family will need support. Local churches often host Alzheimer's social groups during the week which can just give you and your dad some fun social time with other people in the same boat.

Don't be hard on yourself. It can be very frustrating when you're asked the same question over and over again, so if you snap at him, don't beat yourself up. He'll have forgotten. Be there for your mum and make her take breaks and go out with her friends or shopping or whatever it is she enjoys. The TV is a great distraction and kept my dad happy and quiet and safe for a while.

Good luck.

@PermanentTemporary

Hmm *@GoinSouth* - from your description you're seeing changes but actually not seeing anything that suggests your dad can't carry on. It may be that it's exactly because he knows it's impossible for you to live near him that he suggests it. I think you're probably right that he fears what is to come, and perhaps he does the crossword every day as a kind of personal test of how he's doing as well as a mental exercise. Tbh if he's still able to do the cryptic crossword he's got a lot of mental flexibility (my mum stopped being able to do that years ago).

All in all, I would try to relax. The future will happen when it happens. The deep familiarity of his own area, shopkeepers that know him, neighbours who say hello and may even be keeping a quiet eye, are not to be given up lightly. You could if you like make sure that someone local like a neighbour and his GP have your contact number, and you could ask his permission to do that. But a diagnosis may not achieve much.

Thank you.

I think if he suddenly stopped getting his newspaper each day then I would be concerned. It's really the own reason why he has to go out each day otherwise apart from the 'weekly shop;, he would never leave his home. He lives in an rural area, just one neighbour and although I've never discussed my concerns with them, I do have their number and I'm sure if they noticed any unusual behaviour or example, the curtains haven't been drawn back by a certain time in the morning etc., then they might raise an alarm. But you're right, he does have his own routine, familiarity, which obviously comforts him.

We will just keep on as we are but obviously remain aware of any other changes . I wish we lived much much closer but sadly our circumstances simply don't allow that. I wish he would come with us but he won't and no point keep asking him. He may at some point when he's ready.