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Coping when its tough

Hi everyone

 

Im wondering how you guys cope as a carer when things are hard? 

 

Pop seems to still be going down more so mentally esp lately and some of the things hes doing/not doing is making things increasingly harder and actually quite distressing. 

For example just today- this morning he went to the drs and as i wasnt feeling to well he said he was alright to go on his own but when he came back with a script he couldnt remember what they were for, what he told the dr, and later could barely remember going to the gp. then tonight i asked if he could wash the dishes up while i done something else, but he literally ran some plates under cold water and shoved them on the sink (not even in the dishrack) and i asked what he was doing he said they were clean (they werent!)  other examples include locking me out of the house or locking himself out, forgetting that hes left his phone outside (sometimes left in the bathroom) and forever repeating himeself.  i have had him assessed for dementia to which i was told 'its just short term memory loss' and he doesnt need any more support then what im giving him becasue he passed the memory test thing the drs do and the brain scan looked alright.  It is making me increasingly distressed both being at home and struggling to leave the house more now. the more upset i get, so does he so i have to try and be ok at least around him. 

 

how does everyone cope? i dont want to give up my carers role, and i have asked for support from both my aunt and mum in knowing what to do next and both of them just brush it off or laugh at the things he does- i do admit it can be quite amusing at times and i cant help but giggle at some things but its not helpful. 

 

 

 

@Darcy @PeppiPatty @Faith-and-Hope @Smc @greenpea  @Dec @Sherry @Sophie1 @Shaz51  and everyone

11 REPLIES 11

Re: Coping when its tough

Try to keep things like dr’s visits on paper @outlander.  Sit down with him ahead of the appointment and talk about it, taking simple notes about what is to be asked, and leaving space for answers to be written in by the dr underneath, or by your Pop in the appointment as the dr answers them.  Sit down for a de-brief when he gets home, when he is more likely to remember anything unclear better than later in the evening or the next day.

 

Use this method for shopping lists, household tasks, and other appointments ..... preparation meeting (without distractions like tv, phone, friends dropping in etc) and de-brief afterwards without distractions, although a drink of water first is a good idea ..... hydration ❣️

 

Mentioning things casually the day before might help too ..... so it’s been gone over three or four times in different ways, because repetition aids memory too.

 

Buy or make him a lanyard to wear around his neck to keep his keys on, and use one yourself while you’re at home so he doesn’t feel like it’s only for him.  If other members of the family m show interest in them, buy or make one for them too, so it becomes a bit of a family culture, if you can.  Insist that the lanyard doesn’t have to be taken off for the keys to be used.  That’s the whole purpose for it.

 

If you want him to do the dishes, run hot soapy water into the sink and put them in there o soak for ten minutes, without saying anything about it until then, then as you leave the room, ask him to run the dish brush over them, rinse (if you do) and put them in the draining basket.  It means he is doing the “real” work, but the hot soapy water has done the real work of making sure the food is lifted off.

 

It will take a bit of thinking about, but at his age it will mean finding stop-gap measures to keep things running smoothly with less stress for both of you.

 

Keep asking for specific help like this here too.  I am sure there are others who can help you as you go along too.

Re: Coping when its tough

Thank you @Faith-and-Hope

Usually a few days before the appointment i will start to meantion it and as it gets closer keep trying to remind him. I write it on the calander thats in his room and also in the dining room as well as reminders. Hes got a notebook that he writes in, i write in and when he goes elsewhere the professionals can write in too (or ill at least give him a piece of paper with the notes on it).
yesterday and also this morning i spoke with him and asked what he wanted to tell the drs and then i also added one extra thing. so 2 specific things to talk about. i dont usually do anymore unless im there as well. He did have a piece of paper with him with the 2 things on it but he said he didnt know where he put it. it was still in the car on the passenger seat.
so tomorrow i will have to ring the gp and ask why hes on the new medications becasue he cant remember what he told the dr, what the medications are for etc. he pretty much just handed me the script and said the dr gave him this.


each time we go shopping we sit and write a list out as well but i keep that with me or at least on my phone so its not forgotten. ive been going shopping on me own lately though because hes been out of breath- another thing ive got to talk to his gp about as i think its abit more then being unfit.

i havent thought of a lanyarn to use for keys as weve got a special hook that seems to be automatic for him to grab his keys and put them back so i havent thought to do much else for that but i carry my keys around now and also have a hidden housekey just in case. ive had to engrave a letter on the housekey because he cant rememember which key to use for the front door. i wont engrave it on the lock though

that is a good idea about running the hot water and soaking them for abit first. at least i know they will pretty much be clean by the time i ask him to give them a wash.
ive gone around to his dvds he owns and had to put a little tag that says 'this side up' as he keeps putting them in upside down and wondering why they dont play too.

what do you mean by stop-gap measures?

Re: Coping when its tough

Stop-gap means filling in the gap @outlander, like filling in a crack between a wall and a door frame with a filler.  My D2, having a disability, means I have to check and recheck what she is doing, and you can think she’s got something under control because she has been doing it well and in a system or routine for ages, and then for some reason she changes it in a way that causes problems.  The stop-gap measure is to just fix up what has gone wrong in the moment, but the proper fix-it is to find out what caused her to make a change to something that was working for her that now isn’t, and go through re-setting the appropriate behaviour.

 

You’re gonna have to be fixing things up around your Pop more and more in the ways you already are, with the spare key, and the “this side up” tags etc.  

 

Whenever you’re stuck for ideas, ask here and we will all help you problem solve as you go Hon.

 

Part of my hubby’s wonkiness has been short term memory issues, but he is masking it fairly well.  One of his stop-gap measures was to buy three of the things that he often misplaced, being keys. wallet and sunglasses (and glasses) .....and he has done it with a lot of other things in the house as well .....  so when he can’t find what he has done with one, he pulls out another one, and puts the spare back away when he finds the lost one again.  He’s doing that for himself, but you are the one doing it for your Pop.

Re: Coping when its tough

thank you @Faith-and-Hope Heart

yes that makes sense, thanks for explaining that and for your help. i really do appreciate it.

I also have to check pop alot too even just poking my head into his room or if hes out the front just making sure hes alright.
Its like i have a child in the house, i feel bad for sometimes treating him like one like reminding him to have a shower, or brush his teeth etc. i try to give him as much independence as possible but its becoming less and less im actually able to do that.

routines another good one too, i generally have routines for meal times and more the night time like dinner, shower, teeth and medications all at certainish times pr at least try to stick close to those.

i think ill get some spare sunglasses and things to just in case. he usually has them though as hes got glaucoma so needs his sunnies anytime hes outside or in brighter lights but no harm in having a spare or 2.


thank you, yes i think im going to need ideas as i go along or i notice other things. if i go out ive got a paper on the table that says where i am or at least that ive gone out and what time im expected back so he can refferr to that.

Re: Coping when its tough

Hi @outlander 

 

I have read all of this thread and understand - I never had the care of my parents or grandparents but I do remember when my Dad had lost his short term memory and his vision it was tough - because I didn't have to care for him when I did see him I reminded him of things in his past that he remembered clearly and he enjoyed this though other members of the family wanted me to stop - I let Dad know I loved him and didn't focus on his disabilities - 

 

So I can't really help you with what you have written about how difficult it is with your Pop - it seems you are doing a fantastic job and just need some support - I can do that - @Faith-and-Hope  has given you some really good ideas and it will make a difference to your life and your Pop's life if you can keep things going and he still feels useful even if you do have to wash the dishes again

 

I did have the care of my son though - I could not continue when he started adolescence and had to go into foster care but he was always part of my life and it was a terrible strain and I understand what strain can do to us when someone we love becomes unpredictable and we can't imagine what they will do next and yet go ahead and do the unexpected which causes trouble and grief - I really understand that

 

Of course you don't want to give up on him - and I can tell you won't - you need some support and your mother and aunt laughing about it doesn't help you at all - does it?

 

It's really difficult for us when someone we love loses the plot - you need someone who cares and the forum will - I will - not a lot I can add about an elderly person but with someone you love - yes - I can

 

Sending my best thoughts 

 

Dec

Re: Coping when its tough

thank you for your understanding @Dec
it is tough no matter who your caring for Heart

Re: Coping when its tough

You are right @outlander 

 

Seeing someone you love going downhill when they have lost the plot is really hard - I guess it doesn't matter who it is or even how much filial envolvement we have it is still painful and also - I think - we feel it so much but your Pop - is he aware? - which is not for you to answer - about how emotional and mental fragile he is? 

 

I remember my Gran - I was a teenager and she started to lean over and eat out of my plate and I refused to sit next to her and my brother had to - and she hated the TV and sat with her back to it - and I could go on - and like your Pop she forgot what she had just said and repeated herself and it was so awkward we never brought friends home

 

It wasn't my responsibility - my mother had that load - but it was often scary and I know I need not go into any more details but I think - for you - being so young - you are working uphill learning about this side of life early and you love your Pop and want people to understand how it is for you - and then your Mum and your aunty laugh about it.

 

To other people it can be - it is - funny. But for you it's not - it's serious - it's your work and at your age I know you are missing out on things young people usually do and this has a negative affect now

 

But it won't always - time does change things - I know other people your age seem shallow to you - and I think that is normal - you have skipped a large part of what might be a more normal life for someone your age but you are a valuable person who is adding a lot to life. You have an important job and I think you are pretty lonely doing it

 

I see you are writing in the Carers' Forum here and I hope you are finding support there - but it would be great if you had a group locally - other people who are in caring roles. It would be hard for you to get to them I assume - with total care of your Pop who seems worse than he was a year or more back

 

Are you still able to do your horse wrangling? I haven't been in the forums much over the summer and sticking to just a few - I am okay in the summer - it's getting wintery and this time of year begins the hard yards of my life so I will be around more

 

I will try and keep up with your stories - it might be really hard to live them but they are interesting - reading how other people manage their lives under some kind of duress is worth writing about

 

Dec

 

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Re: Coping when its tough

thank you @Dec this threads on the carers side. i do have some wonderful people on this side but yes you are right abit of support offline would be good too.

im not so much embarrassed of my pop at least but some of his traits can be quite embarassing to be around for those who dont know him or his circumstances sort of thing. its ok hes taken things that are mine out of the fridge even though they have been half eaten and forgotten it was mine. no biggie but i do get what you mean with these sorts of things.

it is quite hard when i was trying really hard to get that support for not really me more for pop and i needed help with some things, hearing them laugh about it was quite hard. it was abit of the wrong place and the wrong time sort of thing, had i of been talking in general terms it mgihtve been better but i was so flustered and really needed one of them to give me a hand.

yeah im still doing the horses but not as much now. its a quiet time of the year.

i find it weird going to groups. like its really forced and i dont know how to intereact. if i start talking to people normally even on the streets im ok but when im in an organised group setting its like my brain goes dead and doesnt know how to act. ive tried it a few times with groups before and they were all the same. starting to think its better im jsut on my own.

Re: Coping when its tough

@outlander  my sister , how are you going xoxo

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