Is it me ?

[kevpo]

Hi everyone. Who else on this Forum can relate to the absolute frustration of all the hollow promises, signposting, lack of follow through by so many of the professional agencies assigned to help those suffering this terrible disease and the carers dedicated to looking after their loved one ?
The despair I feel after completing my 4th Carers Assessment in 10 months, and being given loads of reassurance over the phone how much help I will have coming my way. 8 weeks later and still waiting!
My wife is in the stages of Severe Alzheimer's that presents so many challenges, and although there's no shortages of advice lines and printed materials I find there is a lack of real, hands on support available. Or is it me ?

 

[karaokePete]

No, it's not you.

Whilst things may vary from one region to another, I can tell you that in my area the system is simply broken.

The last time I was sent a variety of booklets I put them straight into the recycling bin as I have stopped wasting my time with the people in the Health & Social Care system and all their empty words.

 

[SAP]

@kevpo , sadly it is not just you. Most of us have been let down by services in one way or another. They don’t seem to understand the one thing carers need is reliable respite so they can get a break, not a booklet or a sign post. I used to work as a carers advice and support worker and it used to frustrate the hell out of me. However, what I can say is that you will get some sound advice and support on here for others who have walked the path before you.

 

[Kevinl]

Back in the day (and I've been posting about my wife and mum for over 10 years now) I can't complain, I once asked the question do male carers get treated better than female carers, maybe in the older age group men aren't perceived by the mainly female social care team?
But as said by karaoke Pete it must vary by area, I think the help I was offered was pretty good, more than I needed but I am a man who can cook and clean, work a washing machine and all that domestic stuff.
It is tough but it's tough when it all ends too. K

 

[special 1]

Hi there, it is certainly not you. My Husband was in the hospital 2 month ago and we were told he would get a care package but that would take a couple of weeks as he would need 2 people to look after him and there was none in our area at the moment. They gave us a sara steedy and a riser for the bed. That arrived 2 days before he got out of hospital . Still waiting for help.!!!!!!!!!!!!!!!! HELP

 

[canary]

Hi there, it is certainly not you. My Husband was in the hospital 2 month ago and we were told he would get a care package but that would take a couple of weeks as he would need 2 people to look after him and there was none in our area at the moment. They gave us a sara steedy and a riser for the bed. That arrived 2 days before he got out of hospital . Still waiting for help.!!!!!!!!!!!!!!!! HELP

Keep on at Social Services - its the squeaky wheel that gets the oil

 

[Calon Lan]

Hi @kevpo,

It is definitely not just you. I can relate to your frustration and despair at serious deficiencies in the system.

I was looking after my mum with mixed Alzheimer’s and vascular dementia at her home when I first reached out for help from social services. I was sent round in circles for nearly a year. A qualified social worker was never assigned to my mother’s case. The person who was assigned had very little understanding of dementia. Commitments were made which were never met, emails and phone calls were not answered. Inaccurate documentation was repeatedly sent out to me and my siblings, despite me repeatedly correcting it. My mother’s case was closed at one point with no rationale at all. In the end I had to say I was withdrawing my care and support and leaving my mother alone to get an appropriate response.

I hope that you and your wife get some effective help and support very soon.