How do you cope?

[Down]

I'm a newbie to this group. My mum was diagnosed only a few months ago, although we weren't at all surprised at the news. She's deteriorating quite rapidly, although still living on her own and has good mobility. I visit most days and call throughout the day.

I'm just struggling. I'm finding that my tolerance levels are like a rollercoaster. I've just visited her and have come home feeling desperate, sad, angry, and everything else in between. I find myself getting annoyed at her, when I know she can't help it. She's always been a glass half empty kind of person and is getting even worse now. She wears the same clothes day after day. I let her know gently, but she just gets angry with me for mentioning it. I could go on....and on...

Would be good to know I'm not alone in feeling like this.

Sx

 

[Cat27]

Welcome to DTP @Down .
You are definitely not alone. Please keep posting as you’ll get lots of support here.
You may find this factsheet helpful https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Grannie G]

You`re not alone @Down and your user name says it all.

I know most of us here have felt something similar, it`s such a big responsibility when you are caring for a lone parent in their own home.

There is a long running Thread which might help you.

compassionate-communication-with-the-memory-impaired.30801

It`s not a rule book nor is it a solution but I think reading the posts on the Thread will help you see how many of us have needed help and clutched at any straw in the hope we can find ways of managing.

 

[Down]

Welcome to DTP @Down .
You are definitely not alone. Please keep posting as you’ll get lots of support here.

I'm sitting here in floods of tears. It will help though, I'm just missing my mum and trying to get used to this new way of communicating. I appreciate you sharing x

 

[karaokePete]

Hello @Down, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

I have found that taking up physical exercise like fast walking or cycling has helped me to get some 'me' time and get rid of that angst that comes with the caring role. If I didn't get a regular session in on my exercise bike I know I would explode. Something like that may be worth a try for you.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Izzy]

Hi @Down and welcome to the forum.

I'm sorry to hear about your mum's diagnosis. It must be very frightening for both of you. I remember my own feelings when my mum was acting the way you describe and I know it can be totally exhausting. I'm glad you've found the forum and I know you will get a lot of help and support here. You are certainly not alone.

Keep posting!

 

[Glokta]

I’m two years post diagnosis for my mum and I still struggle with compassionate communication. I ricochet between frustration, anger and resentment. I think what you’re feeling is completely normal. What I find helps at the minute is reminding myself that the truth doesn’t matter that much, pointing out things that are wrong or that she hasn’t taken tablets etc don’t help. I’ve started to omit parts of my communication and use distraction a lot more. Telling white lies is really difficult for me, I don’t like lying at all, but it has become essential. I just cannot do them spontaneously, I have to have a think. Going to the loo or playing with the dog gives me a second or two to come up with something. It’s a hugely steep learning curve. Good luck. Xxx

 

[Bikerbeth]

Hi and welcome. My Mum received her diagnosis in January. I visit for 2 days a week and like you I struggle. We have good moments when we both have a laugh and a hug, other times it is like there is no difference from a few years ago but other times so frustrating and my patience goes out the window and we both end up upset. Gradually I am learning compassionate communication but to be honest I am not very good but I keep trying. The one I get so frustrated about is when she turns the rotary airer upside down and the line gets all tangled yet I know that is is not really important as I will eventually untangle it but it is when Mum turns round and says that she did not do it I have to take a deep breath. I suppose I am just trying to say No you are not alone

 

[pumpkin66]

I'm a newbie to this group. My mum was diagnosed only a few months ago, although we weren't at all surprised at the news. She's deteriorating quite rapidly, although still living on her own and has good mobility. I visit most days and call throughout the day.

I'm just struggling. I'm finding that my tolerance levels are like a rollercoaster. I've just visited her and have come home feeling desperate, sad, angry, and everything else in between. I find myself getting annoyed at her, when I know she can't help it. She's always been a glass half empty kind of person and is getting even worse now. She wears the same clothes day after day. I let her know gently, but she just gets angry with me for mentioning it. I could go on....and on...

Would be good to know I'm not alone in feeling like this.

Sx

 

[pumpkin66]

Feel exactly the same, my mum just says the same thing to me over and over again ALL day. I don’t work as I have rheumatoid arthritis, so I’m at home most of the time, I live next door to her. I feel bad for feeling the way I do and I never take it out on her but sometimes I just want to explode

 

[Down]

Thank you so much to everyone who responded to my first, rather emotional post! It’s a relief to know I’m not the only one with such negative feelings sometimes! I’m working on it and I’m sure with this forum I’ll get there.

One thing I’d like help with, what do you do when your mum has been wearing the same clothes for a week! She’s always smart, wears makeup every day, still gets her hair done, not as often but that’s ok. I don’t want to hurt her feelings and don’t know how to bring it up! She’s obviously washing, she looks good but every day she’s in the same outfit.

How do you deal with this??

 

[nae sporran]

Can you sneakily take her clothes away at night and wash them, or buy matching clothes so you can wash them without noticing. I'm lucky that I do the laundry and my partner will wear different things, her daughter buy her clothes and has good taste. Sometimes you have to be a bit inventive or even devious though.

 

[Bunpoots]

Would your mum respond to flattery @Down ?

I’m thinking of something like “You look lovely in that blue outfit. Why don’t you put that on then we can go out for lunch”

With my dad the offer of a visit to the pub at lunchtime for fish and chips to get him out of his mucky clothes and into clean ones (and into the shower if I was very lucky) worked most of the time. I did dad’s laundry. I’d switch the machine on then go out as he’d switch it off again otherwise.

@Nae sporran’s suggestion of identical clothes was also a trick I used with dad. By the end he had 6 pairs of identical trousers. He was much more advanced than your mum sounds by this point though.

You just have to be crafty!