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Symptoms and venting (sorry)

Quiet-nobody

New member
May 24, 2022
1
0
Hi,
At the start of covid my dad was diagnosed with terminal leukemia and alzheimers, and I became his carer.
Over these 2 years he seems to get worse every day e.g. Speech starting to slurr, struggling to use a knife and fork.
But what worries me most is he keeps his right hand clenched really tight to the point where when I tell him to open his hand and excersise it, his knuckles are painful.
Also I've noticed if he is left alone, watching TV or something, I will often return to see him in a sleep like state but with his eyes open just staring at something. As if he is fully in a world of his own or complete cognitive shut down, he often won't notice me return and if I talk to him it will startle him back to normal.
Are these common symptoms, does anyone else experience this?


I never used to get upset but for the last few months I cry daily.
I lost my mum to cancer a few years ago and I hate watching dad slowly dying also with nothing I can do to stop it..
His personality has changed quite a lot and things he has liked and done for years have changed now, it's like he's a different person.

Over the last few years life has changed massively, in February 2020 I was engaged, had just left a good job that took years to get too, had sold my property in the UK and was in the process of moving abroad, now all that is gone, and I'm full time carer and slowly running out of savings. What do other carers do to take their mind off things (non social), do you also get upset for no reason?
 
Last edited:

DreamsAreReal

Registered User
Oct 17, 2015
366
0
Hello and welcome @Quiet-nobody

What an awful time you and Dad are having, no wonder you’re crying! If your dad just had Leukaemia it would be hard enough, but at least it wouldn’t have robbed him of his personality and deprived him of everything he used to enjoy doing. Dementia is the worst.

Are you getting any help? Have you had a needs assessment for Dad and a carer’s assessment for you? You sound like you’re in desperate need of support. Also, are you living with Dad? I didn’t live with my Mum, so I had my own home to retreat to when it got too painful. Are you both getting any benefits you’re entitled to?

You can phone the Alzheimer’s Society helpline and ask them about any of this. They’re very good, they can point you in the right direction. 0333 150 3456
 

LouiseW

Registered User
Oct 18, 2021
33
0
Hi
Massive hugs from me you really are up against it and I'm sure you are not crying for no reason but because your cup is now full and overflowing.

If you have not already done so now is the time to get yourself some support, all of us leave it too long before we do !

Speaking from personal experience once you seek out help things get so much better and you can't understand how you managed for so long without it.

Good luck xxxxxxxx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,215
0
Yorkshire
hello @Quiet-nobody
a warm welcome to DTP

sorry to read of your dad's double diagnosis, that's a lot to deal with after losing your mum too

tbh I didn't like typing your username, quiet you may be but you are not 'nobody' ... you are an amazing person to have set aside so much to be carer for your dad ... no need ever to apologise for posting what's on your mind, that's exactly what DTP is here for

the symptoms you describe I do recognise ... my dad used to go into a world of his own, I guess he just needed to shut out the world, the sensory overload was too much for him to process ... the hand tension is a concern, check with your dad's GP as there are aids to help, in fact ask for a review of meds too ... while you are speaking with them, talk about your own feelings and how much this has affected you, your health and welfare are important

please get some support as already suggested, you can't provide all the care on your own ... contact your Local Authority Adult Services for an assessment of your dad's care needs and a carer's assessment for you ... if your dad has funds, then you can put these in place yourself eg home care visits, day care, respite



you set aside a massive part of your own life (I understand, I stopped working to care for dad, however I had paid off my mortgage and had a pension I could draw on after a year but still I lost a lot of savings) ... may I be blunt, it was too much, you have a right to a life of your own ... maybe it's time to consider a move for your dad to residential care so you can become family again and you can begin to build your own life
 

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