New to this and hoping for some advice…

[Janks]

Hi all, I’ve been caring for my mum for five years since my dad passed away. She doesn’t have a formal diagnosis of dementia at the moment and I wondered how everyone found the process - and to see if anyone has a loved one who is able to mask their symptoms for short periods of time.
My brothers and I see mum daily and have witnessed her deteriorating mentally over the past three years (this year has been particularly bad)
It started with short term memory - repeating what she said over and over, then progressed to losing items, being unable to do things that she used to do like operate the tv, phone, follow recipes etc.
This last year things have really escalated to the point where mum literally spends her whole day losing and looking for things - mainly keys phone purse glasses
She also hides things in bizarre places and I spend most days when I visit searching for things for her. Every strategy we put in place to help her gets undone eg: hooks for keys, lots of sets of keys - she then takes all the keys off the hooks and hides them (hence losing the keys) her reasoning being that anyone going in there could see them and take them (we’re the only people that visit )
She accuses us of going in the house during the night and stealing or hiding things
Has accused distant family members of trying to get hold of her bank details to get hold of her money (she doesn’t really have much )
She’s also accused me of many awful things and said some really nasty hurtful things to me.
We went to the GP collectively (my brothers and I ) who referred mum to the memory team
They went out and did a test which lasted around an hour and she seemed to do ok with it
she has so so many symptoms of dementia that everyone around her (family and friends ) can see
She refuses carers or anything to do with social care
And the mental health team that went in to offer some talking therapy were also dismissed
Mum told us that they are unprofessional and she could get them all sacked… she never elaborates on these statements with reasons though
She’s highly resistant to any care or support from services however she is relying on me and my brothers who all have families and busy lives to find things, sort out daily issues that is all caused by the memory loss and paranoia

We are all on our knees - I guess my question is - does anyone else have experience with masking symptoms to professionals and how did they get over to these professionals the difficulties of the day to day of the person they care for ?

 

[Sulliven]

Hi I'm new to this forum today and this is occurring with my mother in law. She has recently been diagnosed with moderately severe dementia and at present has a carer going in daily to check on her and make her lunch. Unfortunately MIL does not allow carer to do anything and for that half hour each day MIL puts on quite a show that she is coping and there is nothing wrong! Due to this, social worker has said home care is likely now to be removed and MIL is starting to state she wants carers not to come anymore. I just feel that just having someone go in and check on MIL is helping ensure that crisis is less likely to occur and just feel our voice is not being heard when we say all the things that my MIL is doing which are putting her at harm on a daily basis. I sometimes think we are not believed! We are at the point now that we just feel we have to take a step back if the professionals are telling us everything is fine and just see how things pan out! Hard to do that but I think sometimes this may need to be done so others realise the whole situation for themselves. I've no answer for you unfortunately and feel for you but will follow your post and see what others advise.

 

[Janks]

Hi I'm new to this forum today and this is occurring with my mother in law. She has recently been diagnosed with moderately severe dementia and at present has a carer going in daily to check on her and make her lunch. Unfortunately MIL does not allow carer to do anything and for that half hour each day MIL puts on quite a show that she is coping and there is nothing wrong! Due to this, social worker has said home care is likely now to be removed and MIL is starting to state she wants carers not to come anymore. I just feel that just having someone go in and check on MIL is helping ensure that crisis is less likely to occur and just feel our voice is not being heard when we say all the things that my MIL is doing which are putting her at harm on a daily basis. I sometimes think we are not believed! We are at the point now that we just feel we have to take a step back if the professionals are telling us everything is fine and just see how things pan out! Hard to do that but I think sometimes this may need to be done so others realise the whole situation for themselves. I've no answer for you unfortunately and feel for you but will follow your post and see what others advise.

It’s so tough when you know how much they struggle but they can hold it together for that hour or so …! I must admit we have thought the same about stepping back … we got her an alarm pendant thing and she unplugs it because she’s paranoid people are listening in to her - just feel like everything we put in place to keep her safe is very quickly undone … and it’s a disaster waiting to happen … she also forgets to take meds and hides/loses her medication often … but if she gets a sniff someone is coming to visit she’s gets it all out and organises it … it’s really bizarre because she can have the presence of mind to do that but is in a muddle pretty much 24/7
Feel for you x

 

[Sulliven]

It’s so tough when you know how much they struggle but they can hold it together for that hour or so …! I must admit we have thought the same about stepping back … we got her an alarm pendant thing and she unplugs it because she’s paranoid people are listening in to her - just feel like everything we put in place to keep her safe is very quickly undone … and it’s a disaster waiting to happen … she also forgets to take meds and hides/loses her medication often … but if she gets a sniff someone is coming to visit she’s gets it all out and organises it … it’s really bizarre because she can have the presence of mind to do that but is in a muddle pretty much 24/7
Feel for you x

It's so hard and when you think of stepping back it feels like this should not be an option but in some ways it's the only option available! Yes my MIL has a pendant too but does not want to use it as she pressed it accidentally and now does not like to wear it incase she disturbs anyone. However she would wear it out and about thinking it would work away from home even though we said it would not!
If care is removed we do not know what to do regarding medication, we have looked at an alarm dispensing medication unit - it alarms when a tablet is due but I've got to the point of thinking why spend so much money on something when it may not work even for a day! I feel awful saying that but like you, we have put things in place so many times and then things just quickly come undone. I am not even sure my MIl would take her tablet if someone is not overseeing it.
Sorry I cannot offer you any advice but it's good to talk openly with others who are going through similar x

 

[Janks]

Gosh it is helping just talking to someone going through the same thing because it can feel a very lonely place… agree 💯 with the reluctance to spend money on stuff …. We have spent a fortune on key chains to wear around neck - phone cases with purses in so it’s all together… white boards calendars magnifying glasses she can wear … you name it we’ve bought it and it either gets lost or broken … or she forgets the aid is there… only thing that’s been really useful and she’s not really fiddled with is the dementia clock !

 

[special 1]

Hi there. I had the same problem with my husband. Like you the memory clinic got involved and all they do is get that person to answer a few questions, the year, date etc then when they answer all that you are told they are good for their age then that is swept under the carpet. I think half of the special doctors should also get tested. That is how I feel about the N.H.S. It 's like Hallo, just get on with it. 🤷‍♀️

 

[Janks]

Hi there. I had the same problem with my husband. Like you the memory clinic got involved and all they do is get that person to answer a few questions, the year, date etc then when they answer all that you are told they are good for their age then that is swept under the carpet. I think half of the special doctors should also get tested. That is how I feel about the N.H.S. It 's like Hallo, just get on with it. 🤷‍♀️

Oh dear … did you eventually get a diagnosis ? And how long did it take ? … this is the third time we’ve had someone from the memory clinic do one of those tests… in three years … each time she’s way worse than the last … I just don’t get how they can have a full picture of how the patient is struggling in day to day life after a one hour appointment and a tick list 🤔
Everyone who knows mum is noticing significant changes and are concerned