No idea what to do

[Feistywoman]

Hi, I’m new on here, this is my first post. I’m pretty certain my Mum has dementia, her memory has been poor for a while but the decline in the past year has been remarkable. I’ve discussed this with her and she is aware to a certain extent of what’s going on but refuses to go to the GP as she believes there is nothing can be done and she refuses to take any more medication as she takes tablets for a crumbling spine. Ive tried to reassure her, offered to go with her, discussed that there may be options etc but it’s an emphatic NO. I’ve no idea how to progress, I’m an only child and she has no friends or family left so basically I’m it! She is managing to function regarding getting dressed etc, goes out but gets disoriented in familiar places, not bothering to eat properly although I take her meals several times a week. I’ve put basic things in place like the clock that tells the day etc, I’ve a diary so she knows when I’m coming over but makes up stories that I’ve phoned and said something else has come up on the nights I’m not meant to be there. Her behaviour towards me is getting worse which to be honest I’m struggling with. I’d be so grateful if anyone could offer advice, the memory loss and constant repeating I can cope with but her behaviour is really starting to take its toll and I don’t know how to get help.

 

[Greeeneyes]

Hi Feisty woman, I am new to this forum too. I had the same situation with my sister, but she was in denial. Perhaps if you contact your mum's GP and ask for a visit by the memory specialist nurse. She would probably be more comfortable at home, and I found the nurses very kind, gentle and understanding. Best regards hope all goes well

 

[Amethyst59]

Hello, @Feistywoman ...welcome to Talking Point. I think the memory loss is possibly one of the easier aspects of dementia to deal with ....the character changes are devastating. As for getting help, posting here is a good first step. The members are very friendly and very supportive. Between us, we have a fair amount of experience, though none of us claim to be experts.
What sort of help are you thinking about? Carers calling in, maybe? Or your mother attending a day centre for support and company? Or are you maybe thinking a step or two back from there, and trying to get her to a GP for diagnosis? I know some people have used the strategy of contacting the GP and asking for a ‘well woman’ check and then doing some tests for dementia when the person is in the surgery.
Please do write and ask what specifically you are thinking of.

 

[Feistywoman]

Thank you both so much! I’d really like to get a diagnosis in the first instance, I contacted a local dementia cafe for some help but they said until a diagnosis was made they couldn’t help. They suggested I contact her GP but then said the GP would be duty bound to tell her I’d contacted them. She’s barely civil to me some days and I suspect this may put the tin lid on things and as I’m the only visitor/contact that she has I don’t want her to alienate herself by not speaking to me. She’s incredibly lonely but has never been a ‘joiner’ so I’ve tried and failed to get her to join some local groups. I know that I probably just need to get my big girl pants on and contact the GP but just wondered if any had any other suggestions?

 

[Duggies-girl]

Thank you both so much! I’d really like to get a diagnosis in the first instance, I contacted a local dementia cafe for some help but they said until a diagnosis was made they couldn’t help. They suggested I contact her GP but then said the GP would be duty bound to tell her I’d contacted them. She’s barely civil to me some days and I suspect this may put the tin lid on things and as I’m the only visitor/contact that she has I don’t want her to alienate herself by not speaking to me. She’s incredibly lonely but has never been a ‘joiner’ so I’ve tried and failed to get her to join some local groups. I know that I probably just need to get my big girl pants on and contact the GP but just wondered if any had any other suggestions?

I am not sure that the GP is duty bound to tell her that. I spoke to my dads GP's receptionist about dads driving and nobody told dad about it. Perhaps my dads GP is rather enlightened about dementia. His surgery always phone me about prescriptions, blood tests or anything to do with dad because they know it is a waste of time phoning my dad because he will immediately forget. I do have POA for health and welfare but I have never had to produce it and they don't even know that I have it.

His GP is happy for me to attend all appointments as he probably realises that dad will forget anything he tells him within minutes. His hospital consultants are the same and keep me informed because dad forgets everything.

Phone the GP with your concerns and tell them you wish for it to be kept confidential or write it down for them. They have a duty to your mother as she is their patient but you should be able to voice your concerns without worry of being blamed in any way.

Wait for some other replies in case I am wrong here.

 

[karaokePete]

Hello @Feistywoman, welcome to TP from me too.

Unless you have POA a GP may not discuss their patient with you but they will usually take on board anything that is said to them.

I know some members have had success with noting down all their concerns and producing this to the GP with a request to invite the loved one in for either a check-up or a medications review which the GP can guide round to including some mental health checks. This can work because people will refuse a family member but comply with a request from the doctor.

It's important to get checked and this must start with the GP as things like depression, thyroid issues etc etc can cause dementia like symptoms but be treatable. If dementia is diagnosed then support can be put in place.

If you want to take a read of the AS Factsheet about diagnosis you can find it by following this link https://www.alzheimers.org.uk/sites...nloads/factsheet_assessment_and_diagnosis.pdf

Whatever the case, please keep posting now that you have found us as we are all here to support each other.

 

[try again]

I'm in the same boat as you. I have been going with mum to the gp as she is not very mobile and been blurring out my concerns over her memory for a couple of years . I actually emailed them a whole list of observations and last time we went they did a quick test and she failed to answer any of the questions. We are now waiting on an appointment for a scan and memory clinic. So a bit of progress.
If you don't have any power of attorney in place do so now. We had the gp sign as mum doesn't know anyone else and I shall be sending form off on Monday. Advice on here is to get both finance and welfare. My mum was adamant that she did not want the health one. So hopefully in the future she won't regret that (and I will have to remember it was her choice).
It's a horrible place to be seeing someone decline and not be taken seriously. Sadly from other posts on here it seems that is par for the course for this disease at all stages.
Like your mum, mine is not social and is alone most of the time. I am here only visitor (i have a sister who visits but is a fair distance away). I am sure the isolation does her no favours but again it's her choice and I constantly try to convince her to go to her churches fortnightly "over 50's".

 

[Sarasa]

I'm in the same positon as @try again, @Feistywoman (good name btw, it could decribe my mother!). I've had concerns about mum possibly having dementia for a couple of years. None of the family wanted to rock the boat till after mum had her 90th birthday in March, but shortly after that I piggybacked an appointment with her GP and gave him a letter expressing our concerns. He did a mini memory test ordered urine and blood tests and said he'd see her in three months. She did pretty well at the memory test so I could see he thought we were fussing about nothing. Within the month we were back at the GPs as she seemed to have declined further. Again she did pretty well on the mini memory test, but my brother managed to steer the conversation round to mum's paranoia about the neighbours which made the GP agree to send mum to the memory clinic and for a brain scan. That was a bit of a wash out as mum refused to go to the memory clinic and the brain scan came back as only showing signs of normal aging. Things have deteriorated still further so brother and I went to see the GP last Wednesday. I took four pages of notes on all my interactions with mum over the last two months and we arranged to take mum back to see him next Wednesday. I am not hopeful we will get anywhere, but at least mum now says she would go to the memory clinic as a friend her persuaded her it has nothing to do with testing if she has dementia.
I think you will just have to persistant with the GP and firm with your mother.Neither are easy I know. Mum is good at what is called 'hostessing', that is sounding perfectly OK when she is talking to someone like the doctor, which makes it look like we are exaggerating. You also need to lie, so we are not going to the GP on Wednesday to try and get another referal for mum, we are going so the GP can explain in layman's terms to us all what the recent brain scan meant.
As @try again said if you haven't got Power of Attorney do it now. We managed that last year and it has already proved useful.
Good luck with it all.

 

[Sirena]

Experiences with GPs seem to be very variable. I found my mother's GP very helpful and proactive. I don't have health/welfare LPA, but it seemed to make no difference. All the medics from her GP to the memory clinic and other hospital departments were happy to deal with me as next of kin and speak to me on the phone or send me appointment details by email or letter.

So it is definitely worth making an appointment with her GP. You can either go on your own and speak to him/her - he won't be able to discuss your mother but he can listen to your concerns. Or as others suggest you can go to a 'general check up' with her and send a note of your concerns in advance so the GP will be prompted to steer the appointment in the right direction.

I agree it would be a very good idea to get LPA if you can get your mother to agree to do it. I have finance LPA but not health. Not having the latter has not been a problem in the three years I've been managing things for her, but ideally I'd have liked both.

 

[Feistywoman]

Thank you all so very much, it’s sad that so many of us are experiencing this but I’m very grateful for the advice and support, for the first time I feel that I’m not alone in this.

I’m out of favour this weekend, misdemeanour unknown and I’m certainly not asking! She’s angry at me more often than not for something she believes I’ve done/not done. I’ve given it a lot of thought and following your advice I’m definitely going to make an appointment with the GP to voice my concerns. I need to broach PA but unsure how it will go but you’re right, I’ve got to try.

 

[Feistywoman]

Thanks to your great advice I did go to the GP who was great, arranged a ‘medication check’ and phoned me as he has asked if he could speak with me and she agreed, he has referred her to the memory clinic and suggested she gives me LPA which went down like a lead balloon! Again, she’s not speaking with me, probably because I was there Sunday/Monday/Tuesday/Wednesday, my husband went Thursday and my son Friday, I popped in very briefly yesterday as her phone was off the hook, but I suspect she thinks I’m not doing enough. I normally go on a Sunday, put the bins out but today she’s firstly not picking up the phone then when she eventually did she told me not to go. I don’t know if I should just leave it, go over or actually phone and ask what’s wrong....I never know if I’m poking the beast or not?

I’m sorry, I feel I’m constantly taking from the forum and not giving much back but This is a bit new, I do appreciate everything.

 

[Sirena]

Hello again, I am glad you have got the wheels turning, great to have the GP onside.

I don't know how advanced your mother's dementia is, but I wonder if she could articulate 'what is wrong' if you ask - it may be a general feeling of things not being right and you are the one there so you get the grief. So if you ask it may as you say 'poke the beast' because she can't express what is wrong. Or she may just be feeling quite scared about what is happening to her. What happens if you go round and act as if everything is fine, and jolly her along, would she respond well to that or would you get a flea in your ear?

 

[Canadian Joanne]

About the PoA, what about approaching it from the angle that if no one is chosen & appointed by her, the 'government' may step in later on and not do what she wants? There are people who feel/ fear the 'government' (or council, depending on your circumstances, in Canada we usually refer to the government) will take over everything.

I didn't do this with my mother but I had the forms out for several weeks and each day I would say "We'll have to get to this some time". Eventually, she signed like a lamb - one of the few things she did like a lamb, I must add.

 

[looviloo]

We have problems with my dad accepting a POA. I think that in his mind it seemed like an acceptance he couldn't cope for himself, even though I tried to reassure him we might never use it. I spent a long time telling him it would make my life easier, but what swung it in the end was knowing that my OH's parents had signed their POA. So maybe emphasise that you know people who have already done this, and that it's a completely normal thing to do these days? Everybody does it, even you'll be signing a POA one day etc etc?

 

[RDF52]

I sympathise entirely . Mum has had several strokes in the last seven years and has deteriorated mentally in the last year . So much so that we feel she has some form of dementia . The situation is exacerbated by her deafness . She refuses to consider assessment as she caught sight of a letter with the ‘D’ word and went hysterical. However , the GP is aware of this and asked her a few memory questions which she failed . As for LPA , she refuses to consider this -I think we may be past this stage sadly . We are at a loss . We love Mum but her loving , caring nature has changed to a difficult and demanding and very hurtful one .
She lives with my sister and I try to give respite especially at night but I am guilt wracked with my change of feelings and lack of patience with Mum. I have already been down this road with mother in law a year ago and it put a strain our marriage . I feel sick with anxiety st the thought of what is yet to come .

 

[try again]

I sort of engineered a situation where my mum needed to do phone banking and of course they needed her security information. She couldn't provide this. I knew it and they kept telling me i couldn't prompt her and she was unable to read what i wrote.
she agreed it was a shambles, though luckily she could remember this and so agreed to give me financial poa.
she did not agree to the health as she did not want to be euthanasied (I did tell her not to tempt me ). so if something happens health wise in the future i have made a note not to beat myself up about it, though hopefully as next of kin i would be consulted anyway.

goodness knows why i need to go through this rigmarole to alleviate myself of the guilt when she blames me for everything anyway.

 

[Feistywoman]

Brilliant advice, thank you all. Basically, if I’m not there every day then she imagines that I’ve said I’d be there and says that she’s had to wait in. My poor mum sent me my birthday card this week which was addressed to me, then my husband before she scored that out and put it back to me. I can’t even begin to image how frightening all this must be for her

 

[Onmyown]

Thank you both so much! I’d really like to get a diagnosis in the first instance, I contacted a local dementia cafe for some help but they said until a diagnosis was made they couldn’t help. They suggested I contact her GP but then said the GP would be duty bound to tell her I’d contacted them. She’s barely civil to me some days and I suspect this may put the tin lid on things and as I’m the only visitor/contact that she has I don’t want her to alienate herself by not speaking to me. She’s incredibly lonely but has never been a ‘joiner’ so I’ve tried and failed to get her to join some local groups. I know that I probably just need to get my big girl pants on and contact the GP but just wondered if any had any other suggestions?

So sorry to hear that about your mum me too am living with her and yes it's her behaviour and I too am coping alone like your mum she was never a people person but was very independent but lonely. I cannot understand this cafe surely they are there to help people when I first rang the als association here in Ireland they said the same that if there is no diagnosis they couldn't help so I rang back the next day and complained and told them her story and they listened? Yes I would definitely speak to gp re a house call. Like you my mum tells lies about me and is very very abusive if I leave to have a break.

 

[LHS]

I have learned with my mum who has Alzheimer's to go with the flow on most things now. Her personality has changed and she can be belligerent, in denial, challenging etc. For example, she completely refuses to take any medication because all medicine is 'poison'. She knows she has memory issues but is still mainly in denial about how much her condition has worsened and associated problems. I used to argue or try to reason with her. I even got details of a local drug trial in the hope that it could delay her worsening symptoms. Then I realised she was never going to change her viewpoint and I also didn't want to always be seeming negative when I go round to see her and always talking about her condition. I now just try to do nice things with mum that we both enjoy.

 

[karaokePete]

Hello and welcome to you too @LHS.

I look forward to seeing more of your posts on the forum.