Worried and not sure what to do

canary

Registered User
Feb 25, 2014
25,361
0
South coast
If they are self-funded there is nothing to stop them finding another agency. They may have to pay a bit more, but it may be worth it to get a better service
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
If they are self-funded there is nothing to stop them finding another agency. They may have to pay a bit more, but it may be worth it to get a better service
I think it’s just yet another thing for her to have to deal with. She’s worn out. And I don’t think she knows where to start with trying to find somebody else.
 

canary

Registered User
Feb 25, 2014
25,361
0
South coast
I think it’s just yet another thing for her to have to deal with. She’s worn out. And I don’t think she knows where to start with trying to find somebody else.
Yes it's hard constantly having to sort everything out, but if she can do it having the right agency can make life so much easier. When OH needed carers my daughter in law just phoned several agencies up and asked if they could supply what I needed and how much they charged. The agencies sent round someone to assess OH and I just went with my gut feeling. Perhaps I was lucky, but I have found the carers a godsend.

Could you do some of the work and phone agencies up for your mum?
 

SherwoodSue

Registered User
Jun 18, 2022
676
0
Def complain directly to the agency though. In this model you are CUSTOMERS
You don’t need to put up with poor service.
I get she is worn out. Could someone else help by ringing around and getting quotes, a visit to age uk etc ?

This is the bit that makes me really angry. Ok so you were sensible and saved for your old age so no Social Service funding is available. Shouldn’t mean no HELP is available, a bit of hand holding at this stage would help

I once said to a social worker I can’t believe you are just leaving me with a list of agencies. How would I know ?

She replied, they are private financial going concerns , these agencies and I could be prosecuted for harming their business by directing you.

She was a mature lady with an eye on retirement and an exit perhaps.

She looked at me and continued, so I couldn’t tell you not to touch the second on the list with a barge pole for example. And winked!

I was very grateful
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Social Services have been incredibly unhelpful. They put the care contract out to tender and my mum was forced to accept the first offer that was received. And they're absolutely awful. I will see if I can find a list of agencies somehow and start to make contact with them, to try and at least take some of the burden off my mum.

Thank you so much for the replies. They help me to feel a little less helpless.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Dad continues to decline. He can't use the freeway now so has to be hoisted into the chair. Spends most of his time in bed sleeping instead. He forgot who I was when I was speaking to him the other day, which is one of the most awful things I've ever experienced. It's his and my mum's 54th wedding anniversary today. I've tried to make it nice for her but I don't think anything I could do would make up for the fact we seem to be losing him more and more every day.

I just don't understand how four months ago he could walk and seemingly had the vast majority of his faculties intact.... and how he's like a vulnerable child, wears nappies and sleeps for 20 hours per day. My mum needed him to sign a form the other day and he stared at the paper for 10 minutes and eventually said he was frightened to do it because he'd forgotten how. I feel utterly heartbroken.

Not looking for any advice. Just don't know where else to get my thoughts out.

I keep getting angry with myself for letting the ambulance take him to hospital in January. I feel that if he hadn't gone to hospital this mental decline would never have happened to him. How realistic that is I don't know but I'm not feeling very rational at the moment.
 

Collywobbles

Registered User
Feb 27, 2018
357
0
Looking back at your original post, you had absolutely no choice but to call an ambulance, after which a hospital stay was not only inevitable but necessary.

Please try not to beat yourself up. Dementia is at the root of this, not you, nor anything you’ve done.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
Looking back at your original post, you had absolutely no choice but to call an ambulance, after which a hospital stay was not only inevitable but necessary.

Please try not to beat yourself up. Dementia is at the root of this, not you, nor anything you’ve done.

Thank you. That’s very kind of you to say. I’m trying not to beat myself up. It’s just so hard to see him how he is. I just keep thinking that maybe the dementia would never have come to the surface if he’d not had that hospital stay.
 

helpingpeggy

Registered User
Aug 6, 2019
76
0
I wonder if you could ask to speak with your father’s GP to try and get an understanding of what is/has been going on with him to see such a huge change in such a short time. I think it would be worth trying.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
I wonder if you could ask to speak with your father’s GP to try and get an understanding of what is/has been going on with him to see such a huge change in such a short time. I think it would be worth trying.
Unfortunately their GP is being completely unhelpful. He is refusing to come and do a home visit, and my dad has no way of getting to the surgery. The GP just wants to fob him off with anti-depressants. We feel completely stuck.
 

helpingpeggy

Registered User
Aug 6, 2019
76
0
Unfortunately their GP is being completely unhelpful. He is refusing to come and do a home visit, and my dad has no way of getting to the surgery. The GP just wants to fob him off with anti-depressants. We feel completely stuck.
I’d complain to the practice manager and insist on a home visit when you’re also present.
 

Tanera

New member
Jun 9, 2024
6
0
I am just wondering whether your Dad was ever seen by the neurologist? Obviously I don't know him and have no idea but his symptoms are extremely similar to my Mum's who has Parkinson's Disease with Lewy Body Dementia. I am just wondering whether this possibility has been considered at all? I know that a diagnosis doesn't change anything but at least you then know what you're dealing with and they may be able to give more appropriate medication if it did turn out to be this.
 

worrieddaughter81

Registered User
Mar 28, 2024
14
0
I am just wondering whether your Dad was ever seen by the neurologist? Obviously I don't know him and have no idea but his symptoms are extremely similar to my Mum's who has Parkinson's Disease with Lewy Body Dementia. I am just wondering whether this possibility has been considered at all? I know that a diagnosis doesn't change anything but at least you then know what you're dealing with and they may be able to give more appropriate medication if it did turn out to be this.
Hi! Yes he was seen by a neurologist a couple of years ago and PD was ruled out completely. He does have a tremor but it's an essential tremor. Thank you so much for replying. I would dearly love a diagnosis more just for sanity's sake than anything, as both my Mum and I are so utterly confused by what's happened. Waiting for a second appointment with the memory clinic now as his first one was inconclusive and the lady who conducted the tests was very puzzled by some of the results. He doesn't seem to have declined any further over the last 2 weeks but it's very sad to see him how he is. I miss my strong, capable, funny dad.