Hi all,
I've not posted before but I have been reading for a few days now. My mum has early-onset Alzheimer's and things are deteriorating faster than ever before. My dad cares for her as well as holding down a job and my sister and I help out as much as we can.
But next week we all have to go back to work, and don't know if we can safely leave her at home during the day. She is on medication to stop seizures which has made her very miserable, and has started saying she just wants to die, which is quite worrying. Has anyone else had a similar situation? We want her to live safely at home for as long as possible but can't be around 24/7.
Any advice would be greatly appreciated!
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Hi sounds like you all have a lot on your plates. I care for my dad as im on a career break kinda, and my sister and my husband work fulltime. My dad was diagnosed with dementia with lewy bodies about a year ago eventhough hes been waiting two years fro a proper diagnosis. the symptoms started before that even. My dad is my mums carer as she has spine probs and gets very depressed.
I don't know if you've had a care assessment for your mum and your dad and yourselves as carers?? everyone should have one as soon as they get a diagnosis, even if help isn't needed straight away. I find it hard to find time just to be able to do the odd courses or voluntary work so I can imagine how difficult it is for you all !
if like me when im not there my mind it totally consumed with what will be happening? will the gas be turned off?..will he have fallen?...
if you are all the same then we are talking about getting help in, and I suppose if your dad has been doing things for your mum theres every likelihood shed find things difficult with dementia even if early dementia like my dad does.
there are sitters that people like age uk can provide.. or charities like crossroads, but ultimately if we are talking physical help you are talking carers from either social services which will we discussed at care assessment in your home , or from private companies if you feel the necessity to pay and chose your help when and how.
My dad probably would accept a carer if my mum would..but shes younger than him and thinks shes keeping my dad independent by letting him do anything. you can imagine how concerned I am. he has tremors and cant perceive 3d or large objects and can drop at any time. My dad would never in his lifetime ever admit hes struggling with things and my mum has subconsciously been covering for him eventhough she doesn't do hardly anything in the house.
there is only so much you can do yourselves. my dad does attend alzheimers activities and they are fab people attend with family carers or friends. Maybe if your mum strikes up an acceptance with a carer or friend they could take her to choir or craft or memory café just to meet others in the same boat .
there are allsorts of alarms that would help your mum lifeline in the house and door or fall or movement alarms. they all sound dramatic but very helpful.
I suppose the first step is getting your mum to accept help other than from family...my mum is totally dependant on family help ie me..now she wont do things with anyone else! I can have two minutes to myself. don't feel you all have to take all the pressure.
whether your mum will accept help a care assessment is a priority even if only to help your dad and yourselves. .they vary in different areas.. and word of advice be straight with them tell them what youd like and don't be initimated by the budget cut nonsense. remember the care act 2014 ..read up on it ..you all have rights..
best wishes..
