Struggling to cope

[Nikkib123]

Hi I'm new to the group and am just popping by in search of advice.
My mum has been showing signs of nemory problems for a long time but has point blank refused any help or investigation. We have done the medication check route to start the ball rolling which has started the right path, but my Dad is struggling to cope and is now also showing signs of cognitive impairment that are rapidly increasing. I have cancelled my work for a couple of weeks and am meeting with home care companies this week, but what I really need is help with the relentless concerns, anxieties and non stop repetitiveness. How do you all cope?

 

[BluTinks]

Hi Nikki,
What can I say! It’s hell on wheels! Your Dad might just be exhausted? I would personally look at retirement flats to start with as they can live independently to start with. What you have mentioned is extremely difficult especially if you have never dealt with it before. Others will be along very quickly with more help I promise….

 

[leny connery]

Hi I'm new to the group and am just popping by in search of advice.
My mum has been showing signs of nemory problems for a long time but has point blank refused any help or investigation. We have done the medication check route to start the ball rolling which has started the right path, but my Dad is struggling to cope and is now also showing signs of cognitive impairment that are rapidly increasing. I have cancelled my work for a couple of weeks and am meeting with home care companies this week, but what I really need is help with the relentless concerns, anxieties and non stop repetitiveness. How do you all cope?

denial is common in us humans. we are fearful and would rather not know. especially with dementia. I managed to get my husband to be tested and face the demon by saying, if you are not suffering from dementia, we crack a champagne open, if you do have it we can hopefully stave off the decline with medication. (which is not true of course, there is no medicine for this cruel disease). that was 4 years ago. yes, repeated questions, anxieties, and deterioration in cognitive functions. I would have taken all that twice more rather than what is happening now. which is him seeing and believing I am his mum, and at the same time looking for me and grieving thinking that I have left him, his torment and my loss of identity is hard to bear, but what can we do? bear it we must. I cry buckets for him, for me. I talk to friends and family. I read all the other heartbreaks here, and that stop me bottling this up and feeling alone. it helps a little. sending you hugs and love

 

[Chizz]

Hi @leny connery
I really feel for you having read your post.
However, for a PWD to regress in their mind so that they see themselves as they were 30 or more years ago is not too uncommon, and either as a permanent thing, in late stages, or intermittently. If your husband sees himself as he was, say 30 years ago, then to him you look too old to be his wife, and, thus reasonably logically, you must be his mum. If he thinks you are his mum then he thinks where is my wife?
We all know how cruel this illness is.
As they say, if you're going through hell, keep going.
Best wishes to you and a virtual hug.

 

[Chizz]

Hi I'm new to the group and am just popping by in search of advice.
My mum has been showing signs of memory problems for a long time but has point blank refused any help or investigation. We have done the medication check route to start the ball rolling which has started the right path, but my Dad is struggling to cope and is now also showing signs of cognitive impairment that are rapidly increasing. I have cancelled my work for a couple of weeks and am meeting with home care companies this week, but what I really need is help with the relentless concerns, anxieties and non stop repetitiveness. How do you all cope?

Hi @Nikkib123
First of all, welcome to the forum. Hopefully you'll find helpful answers from all the experiences others have had, and there is a wealth of info on the AS website.
V sorry to read your post.
As for your mum and dad, have another go speaking to hers and his GP practice and telling them of your concerns. See if a letter from the GP asking them to attend for well woman/man check up would get them in, when the medics can see what mental condition she/he is in.
Sometimes, some form of distraction or activity where the doing may take the mind off the repetitiveness.
Usually, that phase will pass on to other behaviours! Patience, tolerance and love are all easier to say than practice, I'm sorry to say, but there's no secret magic formula. Sorry to break that news to you.
Try to keep your own inner peace.
Best wishes

 

[I thank you for the years]

I really need is help with the relentless concerns, anxieties and non stop repetitiveness. How do you all cope?

I have two parents with Alzheimer’s who both live separately near me.
My Mum who has no insight into her condition does not display any anxiety but she has absolutely no short term memory and asks a lot of repeated question.
My Dad who has more insight into his condition does display anxiety at times.
In terms of coping it is a case of “Keep calm and carry on”. Try to respond calmly and briefly to the concerns. Long-winded responses which I am prone to give only add to the confusion or raise further concerns. You may find the following link helpful.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

To be able to remain calm and patient it is important to try to get as many breaks away from the situation as possible and also to try to get as much sleep as possible (says she posting at 04.00!🤣).

Best wishes x

 

[Nikkib123]

Hi @Nikkib123
First of all, welcome to the forum. Hopefully you'll find helpful answers from all the experiences others have had, and there is a wealth of info on the AS website.
V sorry to read your post.
As for your mum and dad, have another go speaking to hers and his GP practice and telling them of your concerns. See if a letter from the GP asking them to attend for well woman/man check up would get them in, when the medics can see what mental condition she/he is in.
Sometimes, some form of distraction or activity where the doing may take the mind off the repetitiveness.
Usually, that phase will pass on to other behaviours! Patience, tolerance and love are all easier to say than practice, I'm sorry to say, but there's no secret magic formula. Sorry to break that news to you.
Try to keep your own inner peace.
Best wishes

Thanks @

 

[Nikkib123]

Thanks @

Thanks @Chizz
We have got the GP's involved thankfully and there is memory clinic this week for Mum. Unfortunately I have had to do crisis intervention this week as things have reached a hiatus. Dad has also failed the memory test last week at the Dr's and will be referred to memory clinic also.
Unfortunately I live 180 mile's away and my sister lives abroad so it was very hard to see how things have developed so rapidly with my Dad, and how hard the constant repetition is to deal with.
They both want to remain in their home, so now l'm doing what i can to enable their wishes and keep them safe with each other.
Thanks for taking the time to comment and offer kind words 😊

 

[Nikkib123]

@I thank you for the years.

Thank you so much for your reply. That link is indeed very useful, but so so hard to remember in the moment. Not living near my parents certainly makes things a lot harder. I'd love to be round the corner, but my life is 180 miles away and I know enough that moving them to a strange house/location would exasperate things all the more. I will just take solace in popping in here for some friendly support when things feel tough 🙂

 

[try again]

Sort out the admin. Get powers of attorney. Attendance allowance, council tax rebates etc.

Think about some sort of remote monitoring system. Echo shows are good as you can just drop in on them without them having to do anything. Or look at more sophisticated options but you may get help fro social services with these. Alert social services. Are they driving still?

 

[sdmhred]

Could u explain about the echo show please @try again I’ve read about people using them but am not clear what it does! Thanks

 

[leny connery]

Hi @leny connery
I really feel for you having read your post.
However, for a PWD to regress in their mind so that they see themselves as they were 30 or more years ago is not too uncommon, and either as a permanent thing, in late stages, or intermittently. If your husband sees himself as he was, say 30 years ago, then to him you look too old to be his wife, and, thus reasonably logically, you must be his mum. If he thinks you are his mum then he thinks where is my wife?
We all know how cruel this illness is.
As they say, if you're going through hell, keep going.
Best wishes to you and a virtual hug.

thank you. it is him looking for me and leaving me voice messages and trying to call me when I am mum which breaks me and exhausts me volleying the questions. I am happy to be seen as mum. he is unfailingly polite and fond. but I cannot produce his wife in the same room

 

[try again]

I'll try. 😁

There are links and videos that explain how to set it up so I won't do that. I did set up ours , had an echo show for me, mum and sister.

When the drop in facility is enabled to video call someone you just say Alexa drop in mum (eg) and it will connect to mum without her having to do anything. You both need internet. You can then speak and see each other. Sometimes I just left it on while chatting and doing other stuff.
It gives warning to the other person.

I changed mums wake word from Alexa to computer, as I hoped she'd remember that better.
Her end, if she wants to make a call she could just say, computer call xxx in her contact list

The speaker is good and you can hear them across the room. Mum had started to put phone receiver down while wandering to the other side of room which was a nightmare. I was hoping she would then be able to call me if she fell but sadly she was really beyond doing anything with it

Buttons. They can fiddle with them . Volume could be adjusted by me remotely via phone app if it had been turned down. There is a slider to stop video which was switched off once but we could still talk

Video was helpful for a while for explaining TV remote and prompting her to take her tablets from the right section of the dosset box, as she could hold the object up in front of the echo show (until she couldn't).

There are also various add ons like motion detectors that we never really explored but the house could be automated for example to switch on a light when motion was detected. I'm sure others were more technical in there use

Check out some YouTube videos looking for echo show and remote monitoring.

Of course it does other things like you can ask it to play radio etc, set it up as a photoframe .... but the drop in function helped us maintain her independence for about a year before carers were needed and after that still good for communication

 

[PeaceLily54]

Hi @try again, @Nikkib123

I concur - we have also installed an Amazon Alexa device and two strategically placed cameras to monitor movement should mum. wander ut the door, it has worked very well. Able to drop in when we need to especially when mum forgets to put the phone down properly on the receiver or when she is getting agitated.

The other bit of advice I can give you is to get in touch with Social Services asap and talk them about your situation. The journey with my mother started after a second fall (not serious) which put her in hospital. She previously denied anything was wrong with her and it was useless trying to speak to her GP (whom I had to search for and by process of elimination actually found the right one), I wrote a letter to the GP about the explained weight-loss, memory problems and just general health. Although I stated in the letter I fully understand patient confidentiality etc and I did not want any information and was merely giving them a 'heads-up' as a concerned relative for one of their patients. Anyway, GP eventually saw mum but nothing happened, I later discovered he described her as 'pleasantly confused' -there was nothing 'pleasant or confusing' abut her behaviour behind closed doors- as usual mum painted a perfect picture of being in control. After the GP appointment nothing happened for a while until the falls started happening and she was hospitalised. That's when they referred her to the Memory and Falls clinic and for there the road to an actual diagnosis began.

To cut a long-story short fast-forward to today, I have PoA in place and what I have learned is that Social Services is probably where I should have started my enquiries because they can put in place certain measures such as Carers visiting 4/day which is a God-send.

It sounds like your father needs help with Carers for your mother, it is awfully hard work and I really feel for you and him. I still struggle little but the Carers give little respite for me at times.

Hope that helps.
All the best

 

[sdmhred]

Thank you. So my understanding is I could set one of these up in front of mums chair and anyone with the same device can just appear and talk to her without her needing to do anything???

I ask because she used to reliably be able to answer an iPad for FaceTime but now cannot.

I’m usually aro7nd to help but this woild enable the rest of the family to engage with her when they wished and withOut me necessarily being around.

 

[I thank you for the years]

Hi @sdmhred
I have a couple of Amazon Echos at both my parents houses (one in each lounge & one in each bedroom) and generally now “drop in” rather than phone them up. They do not have to do anything, I just appear on the screen. I haven’t extended this to anyone else being able to drop in. My understanding from the following information that to to this you have to set up an Amazon Household which can consist of a maximum 2 adults and 4 children. I immediately wondered how they could establish who was an adult and who was a child. Essentially, children can’t make purchases from Amazon.

https://www.amazon.co.uk/gp/help/customer/display.html?nodeId=GQPPMHS583LV236L

An alternative device which might be helpful but would be more expensive as it has ongoing charges is called My Home Helper.
https://www.myhomehelper.co.uk/home/home.aspx

Best wishes x

 

[try again]

Thank you. So my understanding is I could set one of these up in front of mums chair and anyone with the same device can just appear and talk to her without her needing to do anything???

I ask because she used to reliably be able to answer an iPad for FaceTime but now cannot.

I’m usually aro7nd to help but this woild enable the rest of the family to engage with her when they wished and withOut me necessarily being around.

No, you control who has access. You don't even need to give all her contacts the ability to drop in

 

[PeaceLily54]

Hi. @sdmhred

Sorry about long delay, it's been a busy ol' few months with mum and everything else.

Yes the Alexa has been a great addition to keeping her in check. As other Post on here have mentioned, you do not have to do anything yourself, when you want to dial in you can and just appear on the screen. the Alexa can detect movement and will follow the person around the room -quite a clever device really. Mum is loosing the ability to put the phone down properly on the reciever and countless times I cannot get through so I ask my brother to dial in and ask her to out the phone down properly or failing that I have to ask the Carers when they visit.

I would highly, highly recommend the Alexa if you need a visual. I even use it to play music via Spotify via Alexa which was also a game changer. One bit of advice though is that make sure she doesn't switch it off! .

Good luck.

PeaceLilly54