DM won't go to GP - memory loss progressing fast. Any ideas?

[tiokiko]

DM has had steady memory loss for at least 5y and I am noticing a faster decline. She had some tests about 3y ago but refused any further diagnosis and will absolutely not go to GP about it now.

Her short-term memory is basically non-existent and she's forgetting words, names etc. Food tastes changing drastically compared to what she has always liked. Can't count money or remember PIN etc. Gets lost and disoriented when out. DF got POA a few years ago as he could see how things were going.

Any ideas how we can deal with this? I know we can't force her to go but it seems so hopeless at the moment. It feels as if nothing will happen until there is some major crisis.

How v difficult for you all!

Is your DF ok himself? Not that he should have to cope with this, but it is could if he can, for now.

Would your DM go to see the GP for an 'annual check-up'?
Or for a 'routine blood pressure check'?
Can you dress it up so that she won't find it too threatening and she can keep some semblance of being in control?
Speak to her GP on your own first so you are able to voice your concerns.

Also, contact social services and ask for a referral to the Older People's Team or whatever they might be called where you are. They can arrange for an assessment and have access to OTs, physios, CPNs etc.

A diagnosis of dementia sadly does not change a thing. Even if she does have Alzheimer's which is only one of many forms of dementia, but for which there are some medications that slow down decline , there is no cure. So the diagnosis can be important to access services and support, but sadly does not actually change much about how she is.
I am so sorry. It is horrible to see our parents decline.

Do NOT wait for a crisis - if a crisis occurs ALL control over the situation is taking from you and her. Plan for the worst (get more help in place than you think you need) and then hope for the best.

V bets of luck

Unfortunately this happened with my nan. We could all see what would happen. She refused any test etc. Still lived on her own until she had a fall and was hospitalised. The social services then took the decision away from our family. (And in a way it was such a massive relief not to be the ones to make the decision ) SS said she wasn't safe to be in her home. She went to a care home and really really loved it. And the last 6 months of her life was a pleasure.

Thanks both - really appreciate your comments.

Pacific - DF is OK, they aren't v old (both around 70 - being vague in case identifying) but he's pretty unfit and it's putting a huge emotional strain on him that worries me a lot. We live close by so that's a relief as I can see them and help out when I can.

DF has talked to GP and made appt for DM before xmas but she 100% refused to go. Routine checkups tried too - wouldn't even get flu jab. May see if we can get GP home visit in case that will work but not sure.

DM and I were so close always but as this is progressing she is getting more insular and worried about being away from DF. I have tried talking to her myself but no joy either. Very wary of totally alienating her or making her feel ganged up on as I know any additional stress isn't good.

I know what you mean in terms of dx not changing anything - I worry that we have lost our window where meds would have made a difference in the rate of change. I feel that at least if there was a dx it would be out in the open and that DF would get some support.

123 that's really good to hear about your nan - maybe that will end up being the case with DM in the future but certainly not now. She was so vibrant and fun and creative, it's so horrible to see how she has changed and really heartbreaking that our 2 DDs will never know what their grandma was really like. They aren't aware of the changes yet but I'm sure DD1 will start to pick up on things before too long.

Don't panic about the meds - sadly they don't make a lot of difference. FIL has dementia and went on meds and frankly was worse on them - out and out paranoid.

When I asked a friend who is a geriatrician she told me the meds are only shown to improve cognitive function on tests and then only slightly - the partners of people on the meds couldn't notice any improvement when they were on them in trials. They also don't slow down progression of dementia and can make it worse in the end stages.

FIL still doesn't think he has dementia even though he has been through memory clinic. In all honesty the big advantage of doing it was to make family members see he had a problem and get him to go to a day centre which he hates to give MIL a break, but other than that, there isn't a lot of support.

If you share your worries with GP, a home visit might work. For FIL I rang the GP and told them what was going on and them she was able to bring it up when he went about a different illness. However he loves going to the GP which made it inevitable he would get caught by the GP eventually.

Does she drive? I dobbed FIL into the DVLA which also forced the issue.

Fraid a lot of what we did does look like bullying - going on and on and on about something until FIL eventually gave in but we wanted to avoid a crisis.

Yes, witnessing the decline is horrible.

Speak to her GP and arrange for a routine HV - drs get away with saying 'I was just in the neighbourhood and thought I'd check in on you' (mostly, they do, anyway ).
Maybe you could be present when they visit?

A SS assessment is more of a functional assessment - you know, what can and what can she not do?
Could you dress it up as that your DF needs the help? No you, DearestMum, but dad is struggling and a bit of help would take the load off him??

In some areas Old Age Psychiatry can also do domiciliary assessments, but a referral would have to come from your GP so they need to be a port of call.

Good point about driving/DVLA. Please contact the DVLA if you have any concerns about her driving. It can be done anonymously.

I did the anonymous DVLA thing - you can do it on line.

I think MIL guessed it was me but I claimed innocence and then DH and I (plus his siblings) were able to chorus that if a neighbour had noticed it must be bad.

FIL stomped off the GP, confident she would give him a clean bill of health to the DVLA. He returned chastened when she said that no way would she say he was fit to drive. Licence was duly returned to the DVLA.

It helped push the issue along, esp with MIL as well who thought 'he was OK for short distances'

God point re DVLA, hadn't thought of that - DM can drive but hasn't for at least 10 years and I don't think there's any chance she would ever attempt that, so I'm not at all concerned there.

That's reassuring re meds - kind of what I thought too but makes me feel a wee bit better that we haven't totally blown it.

GP very aware of the situation and v kind etc. Think will push for home visit - they are away on holiday soonish so maybe after that. She just will not accept that there is a problem (although clearly knows that there is and as ex-nurse is very aware of the prognosis ).

I've tried in terms of concern for DF and also from my POV in case of any hereditary issues - thought that might be a clincher as she is such a caring DM but no go.

Lack of insight is a really common symptom of cognitive decline and well recognises.
In some ways it can be kinder if she is not aware of what she's lost/is losing
It is such a cruel condition.

Actually I have another question - is there any counselling available for family members? Firstly for DF for support but also for me - I feel like I am really grieving for my DM as it feels like I've lost her.

Worried that is offensive/upsetting to those whose DMs have died so apologies if so, but I really feel so sad about things at the moment and as very few people know how things are with DM it's all pretty much inside me (obv with support from DH).

What support for families are available will vary locally.
Here (Scotland) there is post-diagnosis support from CPN (community psychiatric nurses).

Have a look at Age UK and Alzheimer's UK websites - they might be able to point you in the right direction.

Yes, it is exactly like grieving. Just for a person who is still living and breathing.
My gran was a wonderful, v lively, vivacious, clever woman who ran her own business and was a power to reckon with. She died a couple of years ago, aged 101, and the last, say, 5 years of her live she was really only a husk. There was nothing left of the person she once was. I cried more than once during her decline, but when she died (and since then) I have been totally dry-eyed. I had done my grieving for her well before she died.

I think you are wise to be seeking support for yourself/your DF

Oh, and of course she will need a physical check-up and some blood tests done too.

Thanks Pacific really appreciate this.

We are in Scotland too, DF and I went to Alz Scot locally a few yrs ago but they weren't v helpful to be honest. Gave us some leaflets for drop-in sessions for DM and DF in church halls locally but nothing more.

TBH if (when) DM gets to the stage that she willingly goes to a drop-in session I'll know all is lost - it's the polar opposite of what she would choose to do in normal life.

I might make an appt with my own GP to suss out any support for me but assume it's going to be a long time to wait. Prob also need to open up to my friends more as I have been reluctant to break DMs confidence, if that doesn't sound daft. Have told a couple a little bit but not really how bad things are now.

This is available all over Scotland and you can self-refer and it's free
It's phone counselling but actually works v well and is very time-efficient as you don't have to travel anywhere for your session.

That's really helpful - thanks so much. Will take a proper look later but sounds good.

Prob no good for DF as DM very aware/suspicious of phone calls (as she thinks we are ganging up on her) so it's usually difficult for him to talk without concern for being overheard. Thank goodness for email - he is v IT literate and uses the internet for everything.

When this happened to me I managed to call the surgery she was with and the doctor came out to her. I had to speak to them first. I also called the adult social services team who pointed me in the right direction as they like that family are trying to help! Do give them a call first, they can come and see her and sign post you to support

My sympathies - my mum was under 70 when her dementia first became really noticeable, and she's only 74 now. She has no insight at all, and even having been told she has dementia doesn't think anything is wrong. I can't lie, its been very hard, but the worst was before she had a diagnosis.

I don't think there is any counselling generally - your dad could access a carers group if there is one locally, but my dad really didn't like them (he's a bit older than mum and very frail physically). Its the ladies of the Elderly Parents board that have kept me together in the last 7 years.

And yes, its like my mum is dead. She has no idea who I am, who her grandchildren are, who her husband is. She has very little language left, so you can't talk to her and she has no interest in looking at things or being around people. The worst thing is is that no one wants to talk about this, and it can be very lonely when people are talking about all the things their parents do for them and so on.

tio, ask your GP about 'Beating the Blues' - it's an online program aimed at people with low mood and anxiety but actually quite good as a general life tune-up IYKWIM.
If your DF is quite IT literate that might just be the ticket for him.
He does need to get contact details from his GP and they have to provide him with a username and password; he cannot get in by himself (and it is not available in all health boards just yet, I don't think. Might be wrong).
Anyway, worth an ask.

Yes to carer's groups. He could go once and see whether it is for him or not.

Ah CMOT that sounds exactly like our situation (except that DF isn't frail - BTW you helped me (I think) v much re his prostate dx a few years ago - all OK now).

I totally understand what you mean about other people's parents - doing things with them or with grandkids. Totally crap that this has happened just as DM and DF should be out enjoying life - they have both retired, have a little disposable income and should be travelling and living it up. The thought of what lies ahead for us all is pretty daunting, as is the the effect it's likely to have on our DDs who are still just little.

One of the things I have learned on this journey Tio, is that my ds (we first noticed mums issues when he was a year old) only gets one childhood, and that comes first. I can't magic up grandparents to go out for fun days, or to buy him presents, but we don't go there for Christmas (we tried, it was grim him and me), we visit for a max of 3 hours, and at 10, I fully acknowledge to him that its not going to be fun but we have to do it and then we will get Starbucks on the way home and he can do x.