Why are carers left with ALL the responsibility and left having to look/ask for everything?

[Alena]

Such very interesting and valuable points made in this thread.

I attended a 2 hour discharge meeting today - exhausting. For the first time I met my husband's social worker. He has seen him once. I had to ask for a copy of the nurse's assessment which was emailed, after reminding, yesterday at 5pm, 40 page document. I was not able to process it sufficiently before the meeting and was shocked about some of the comments. I arrived and there were no hard copies (no my printer is not working!). Fortunately our Alzheimer's support worker was able to to attend virtually, she was and continues to be very valuable. Just before the meeting 2 students approach me asking if it's OK to sit in! Sorry no. My husband has not communicated with his son for 3 years, and does not want to see his brother. In the meeting the social worker tells me that daughter in law contacted social services mid February asking for contact - I had no idea and feel a major headache coming on. I tried to remain composed but did start to cry. However, after all that, I have to say that it became clear the struggles the staff face having to work within the processes and systems in place. I think this is the key. There are so many different agencies involved and they do not speak to each other and carers as well as our loved ones are stuck in the middle. As we are reminded many a time - we all want what is best for . . . . Yes, we know this, but they need to streamline and try to minimise bureaucratic chaos leave carers as if they are in limbo. They and the social worker, despite not having met him before, were kind, supportive and willing to listen. At the end all were agreed that my husband will be going into residential care. So now the next battle is finances.

Well done with everything so far, and I wish you all the best for the next stages.

 

[PalSal]

I think people don't understand
- how much it takes over families lives, splits families and causes trauma far beyond the patient - often without the knowledge of the patient
- memory loss is not just memories. It's how to tie your shoes, what a plate is, where it goes, how to clean your teeth. Everything. Forgetting your grandson's name is just the start of it
- that it is terminal and HOW it is terminal
- different kinds of dementia and how they may present
- cause is not fully known - slightly sick of people assuming my dad was abusing alcohol and that caused it!
- PWD can be confused, violent, happy, sad, depressed, content, bored, impulsive - all the things those without dementia can be, but they may have less control over these feelings and moods than neurotypical adults and they may well not be able to use or learn coping strategies to deal with the negative feelings or impulses
- there is no cure. Things which 'help' do not cure, won't help everyone and may not help anyone for very long e.g. fiddle muffs, dolls
- Learning to do new things is very hard, potentially impossible for those with certain types of dementia. Therefore, rotas, lists, whiteboards, clocks, signs etc - all the things we would usually use to help us cope with the day to day will not work - or not work for very long. My dad used a calendar until he forgot where to put appointments and then what day it was.

How to use a fork....and ultimately how to shallow.