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In need of guidance - Carers UK Forum

In need of guidance

For issues specific to caring for someone with dementia.
Hi, I’m in desperate need of some help. We lost my mum 6months ago to cancer & since then my dad has fallen apart. It seems that my mum sheltered us from dads dwindling memory & over the last 6months it’s driven us to breaking point.
He’s had a memory test & seen an elderly psychiatrist who has said he has thinning & shrinkage of his brain. Dad refuses to see anything wrong & becomes verbally aggressive. He hides money then phones me screaming that someone has stolen it, he hides phone chargers & says they’ve been stolen. He’s been found wandering confused in the area & says he can’t remember going out.
Everyday he says he’s bored but refuses to go out without me. Gets aggressive if I can’t take him to an appointment. It’s a fight to get him to go out anywhere without me (he will take the dog to the park on occasions which is just across the road), we make sure that he knows how proud we are he does something independently but it doesn’t last. He expects me to be with him 24hours a day & says he can’t be on his own. I get up to 20 phone calls a day & he always wants to ask me something urgent which he can’t remember. Doesn’t look after himself eg showering/cooking (lives off ready meals or doesn’t eat).

I’m at breaking point. The pressure he puts on me is immense, my family life is suffering, I’ve given up work so now money is an issue, I’m clashing with dad every day & I can’t cope. We’ve had social services involved but they’ve now closed the case because dad said there’s nothing wrong with him & refuses all help. I need help desperately and I don’t know where to turn, dad doesn’t want anyone else except me. Can anyone guide me in the right direction please?
Dr has not diagnosed dementia & said she’d follow it up. I don’t know what to do.
Welcome to the forum.

I would suggest that you start by trying to get a proper diagnosis from the doctor. Do you have Power of Attorney for dad?

If not, and the doctor is reluctant to talk to you, keep a diary. If you have a mobile phone, record dad when he's being horrible. Many forum members have found this to be a good way of showing the doctor what is going on.
Clearly, something is seriously wrong.

How far away do you live?
The solution to the phone calls is to put the answerphone on, so that you and your family get some peace.
Social Services are wrong to close the case, many of us here have found them less than helpful! However, dad is a "vulnerable adult" and they have a duty of care. Whether they pay for his care, and how, depends on a few things.

How old is dad?
Does he own, or rent his home?
Does he have over £23,000 in savings? (Yes/No)

The answers will help us make the most appropriate suggestions. Sadly, dad is only going to get worse, rather than better, as he gets older. You cannot sacrifice your life and family to care for him. Your role needs to change from hands on care provider, to care "manager" making sure he has the care he NEEDS, which may be different from what he wants.

Other forum members will be along who have faced similar problems.
Hiya. Yes I have POA already. Dr was reluctant at the time to officially diagnose as he was having tests for pain so thought medication may have been a factor of memory loss. He’s on standard meds for heart now & steroids for pain & things are worse. Previous to this he was on tramadol & then MST painkillers long term prior to having his hip replaced.

I have been keeping a diary as to when he kicks off & about what. I’ve tried turning my phone off but he then phones my brothers crying that I’m not answering, or he goes round neighbours telling them I’ve gone on holiday (I wish). At the appt with the psychiatrist I tried giving the Dr a full picture & he kicked off, telling me never to go back & he was leaving the Drs & walking home.

I live half hour away from him. Have had calls at 4am in the morning saying he’s fallen. The majority are fake, only 1 he has actually fallen & injured himself. He has received treatment for his injury & visited hospital. A lot of the time he does it for attention.

He’s 77, rents his home & has no savings. I know he is grieving for my mother - they were married 57 years - so that is a factor. He says he’s bored so I suggested community groups ... went for 20 mins to one said they were weird & came home 🤦‍♀️ He’s been advised by the Dr not to drive so he doesn’t have a car, but is kicking off about wanting to take it out. Today I found money in a notebook after he had told me he spent money (I knew he hadn’t as my brother paid for everything on their last trip out & he goes no where without one of us).

I feel so awful & hate how things are. I feel so claustrophobic & the main thing I want is for dad to have the care he needs, which I can’t give him 🥺
Dump any feelings of guilt, because none of this is your fault. This is far more than grief. (I'm a widow).

There is a term used on the forum that I don't like at all, but can't think of anything better. "Elderly Toddler", where the carer takes the role of The Parent.

You cannot carry on as you are. I suspect your husband has been telling you this very firmly already?! It is totally unacceptable for you to keep being called out, especially at night. You must put your answerphone on, especially at night. If dad ends up crying to your brother, then your brother needs to deal with it, or put his own on.

Maybe it's time for you and your husband and your brother to have a Family Conference and decide how to deal with this.
Dad could have a personal alarm, so that if he was genuinely ill, he could summon help, any time of the day or night. Social Services can arrange this.
Long term though, he needs either a lot more support from Social Services, who would pay for almost all of it as dad has no savings, sheltered housing, or residential care. Very SAD, but that is the best way of him getting the care and attention he needs.

A formal diagnosis of dementia would enable dad to receive Attendance Allowance, and you, Carers Allowance. You could claim without a diagnosis, as it really depends on the support dad needs.
I feel like my mum would think bad of me for not caring for him (she cared for her mother & father). He is like a toddler though, he expects to come absolutely everywhere with me. I do allocate days to take him shopping & out for lunch but not everyday like he wants.
Funnily enough yes, our relationship has been very strained recently! He is very good but sometimes he gets really frustrated as you can imagine, when dads phoning 20 times a day.
We have discussed an alarm but we have all thought dad would misuse it for attention. I agree with them if he’s genuinely injured/ill etc but I know he’d press it just to get us all round there. We have also discussed sheltered housing & residential care but I just don’t know what’s best.
I am waiting to hear from the psychiatrist about his next appointment when I will email her before hand to let her know exactly what’s been going on to try & make sure there is no repeat of last time.

Dad already has DLA for long term heart disease, & carers allowance I am unable to claim as I am a student (final year). I did have a part time job but gave that up last year after I was having continuous threats to kill himself from my dad - something I don’t think any child of any age should have to hear their parent say. I potentially could claim direct payments where dad would be my “employer” but I’m not sure how I feel about it.
It would be better if dad had direct payments, which you could manage, but get someone else to visit him regularly, so you can reclaim your life.