Friends, Family & Carers Forum

[Faith-and-Hope]

Hearing you, and feeling for you @Razzle .  It took me a while to start up again with a new counsellor’s after we moved to another state, because it has meant going through my story all over again, and I just wasn’t up for it .... but heartbreaking changes are slowly occurring, which is what happens with dementia too, and I knew it was time to seek that sort of support again.  The good ones are out there.

I agree with @outlander, it might be worth starting  with “smaller” more immediate issues when seeking support and see how that goes, just letting the counsellor know that you do have a big back-story, but you are not able to discuss it until you have established a strong trust relationship with a counsellor.  If they are worth their salt, they will u derstand that principle well.

Sending virtual hugs and lots of care ..... ❣️

[outlander]

something to consider at least @Razzle trust is hard but sometimes it is worth trying again

[Razzle]

Thanks @Faith-and-Hope   I know the dementia will get worse and I can’t cope alone, I am going to need support.    Trust is such a huge issue for me, and has been all my life.  And when I lose that trust it takes me a long time to allow myself to trust again.  There’s just too much stuff going on to start that whole process again.   I honestly thought I had one of the good ones, I really don’t know what to do now.

[Faith-and-Hope]

I understand that feeling only too well @Razzle . 

If you can’t (yet) bring yourself to seek out a new counsellor’s for support, are there other ways you can apply some self-care to help take the strain off ?

While my hubby doesn’t have dementia, he does seem to have something called anosognosia - big word for absolutely no insight.  He has hidden eating disordered behaviours that would be quite alarming to most people, and he seems to be able to engage in them one minute, then convince himself it’s not happening ??!!  He also has delusional moments that he doesn’t seem to recognise and won’t discuss even in hindsight .....

While I not only can’t flag down medical help, I have been caught in crossfire, and have had to back right off and stand back, watching him decline while trying to hold the family together around him and his wonky behaviours ..... his analytical brain seems to be working well enough in a business capacity, but his emotional side is right out of whack.

The support I have reached for is stress relief (occasional foot or shoulder massages), getting my problem nails seen to before they are infected and caning, and getting my difficult hair tamed.  This is all stress-reducing around the husband issue.

I take shortcuts with cooking, and occasionally bring in cleaning help with big things like bathrooms and floors, particularly if I have been unwell.

Does any of this sound helpful for you ?

Has anyone suggested Carers Australia to you as a resource ?  They have respite opportunities I believe.  Without a diagnosis in our case, it is hard to engage or explain respite services for our “invisible” problem, so I haven’t checked it out personally, but they have been a support to others on the forums.

[Razzle]

@Faith-and-Hope   I’m sorry to hear what is happening with your husband, it sounds like it would be a huge strain on you.  I had never heard of that condition so I had to google it, it must be terrible for both you and your husband, and your kids.

Self care is something I was working on with my councillor in the last few months.  I can’t stand anyone touching me, a massage voucher as a gift would be my worst nightmare.  I do get my hair done every 8 weeks or so, but I have to psyche myself up in the days before hand - I like my hair when it’s done but I really struggle with the process.  Doing something nice for myself is a mind game, I never feel worthy of it, never feel like I deserve it.  

I used to feel good doing something nice for friends and family, but after years of doing this I now just feel unappreciated and don’t bother anymore.  The best I can do at the moment is I bought a Suduko crossword type book and do one puzzle a day - I have to concentrate on it and it takes my mind off things, it helps to calm the anxiety when it goes off the charts.

[Faith-and-Hope]

Hearing you @Razzle.  

While I don’t suffer from depression and anxiety in general, this situation produces what is called situational depression and anxiety, and there are some days I am completely rattled when he has a temper outburst or does something completely delusional with no comprehension that he has.  Thankfully they tend to be fewer and last for less time, as we have become quite skilled at not rocking his boat, and moving around him.

But I understand the feelings, and times of not being able to be with other people because it’s all too much ..... although I think for me it is gentler than what you are challenged with.

My difficult (and often abusive) extended family situation is much more in the past than present now, but I can relate to how you are feeling about that too.

I had to begin in baby steps to start looking after myself, and in my husband’s family that translates to selfishness, which it is definitely not, so push guilt feelings as far away from you as you can.

Take care of you ❣️

[Razzle]

@Faith-and-Hope   I went to an information session this morning for carers.  There is a new ap to be released soon for carers, today’s session was on the findings from a research group that have been using the ap for a year or so - there were a few members in my community that had taken part in the project.  I didn’t know anything about it until today.  There is a chance to be involved in more research when the ap becomes public, and I think I’d like to give it a go.

I got a reminder text about 1/2hr ago to remind me that I have a hair appointment tomorrow - I’d forgotten all about it.  My first reaction was panic but now I’m in “convincing myself it will be ok” mode.  It’s rediculous to feel like this but it’s something I can’t stop myself from feeling, it’s so frustrating.

[Faith-and-Hope]

I know it is frustrating @Razzle ..... those panic feelings ..... but they are your system trying to o reapond to threat cues, and you are doing the right thing pacifying yourself with reassurance.  Across time that reassurance will start to dull down the panic response as you venture out, and then feel the “reward” of lovely-looking-and-feeling hair ..... try to focus on those feelings a little more each time to help them overwrite the negative ones.  It takes time and practice to invest in self-care and start to feel okay about it.  Go you ..... gently-gently .... 🌷

[Shaz51]

Hearing you, and feeling for you @Razzle .

my mum doesn’t have dementia yet but noticing she is heading down that way xx

she has said she wants to stay in her own home

@Faith-and-Hope, @outlander , @greenpea 

[outlander]

hearing you too @Razzle.


sending love @Faith-and-Hope