I need help and advice

[dollymum]

Hi there,
I've never written on anything like this before but I am desperate for some advice. I'll try and be as brief as possible so here goes. My mum was diagnosed with Alzheimer's about twenty years ago. My dad was her carer until he died four years ago and I called in after work every day to see them. My brother had always lived at home ( mum and dad relied on him a lot and I feel he never got the opportunity to live his own life). When dad died my brother immediately gave up work and is now her full time carer. I work but go straight down mums after work. On three evenings he goes out, so I'm there til about midnight and on the other evenings I go just to keep him company as he doesn't see another soul all day. My amazing husband is always with me if he's not at work. I have two other brothers who haven't sat a single evening with mum and refused to help even though I have literally begged them. I work four days and look after my beautiful grandchildren two days. I can't explain how hard I find the situation, I work 9 - 5 and get to mums for 5.30, getting back home just after midnight, then I'm up and back to work the next day. I know this situation is affecting my health but what can I do. Anyway, my big big worry is my brother. We used to put mum in for respite for a week about four times a year but she was always getting banned for her violence. The last time we put her in respite we feel her treatment was appalling. We had a phone call to say they had called an ambulance and the paramedics were unable to revive her. We rushed to the home expecting to find her dead but in fact it was that her blood sugar was so low she was almost in a diabetic coma. She was still in the clothes she was wearing the previous day and I don't think she had eaten or this wouldn't have happened. My brother was distraught on the way to the home and now refuses to put her in respite ever again. My mum is totally incontinent, doesn't speak, sits and bangs her head with her hand a lot of the time and other times just cries. It's beyond heartbreaking. She wanders round the house hitting things and most nights won't sleep. Sometimes my brother has to actually carry her upstairs to the bathroom and bed. I've told him if he doesn't look after himself he won't be able to look after her but I feel the situation is becoming desperate. Please please give me some advice.
Mary

 

[LadyA]

Hello, Dollymum and welcome.

Is your mum being reviewed by doctors at all?They may be able to tweak her medication to help with the aggression and agitation. And does your brother have Carers going in to help him with her personal care? If it hasn't already been done, I think the first things would be to get your mum's needs reviewed (a Needs Assessment) and if it hasn't been done, a Carer's Assessment for your brother.

You might like to talk to one of the team on the Dementia Helpline, who are very experienced, and have a lot of knowledge at their fingertips. They can be contacted on: 0300 222 1122 or by email at helpline@alzheimers.org.uk.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

It sounds like a horrendous situation for you and your brother, and has gone on for a very long time. I hope you can get some more help.

 

[Risa]

Hi Dollymum and I am so sorry for your sad situation {{{hugs}}}

How long as it been since your Mum was last seen by the Memory Clinic or a GP? With the level of distress you describe, in your shoes I would ask for her meds to be reviewed urgently. Have you had contact with Social Services? Your brother should have a carer's assessment if he hasn't had one recently and your Mum's needs should be assessed. I can understand your brother not wanting to risk respite again but what about having sitters come to the house so your brother can have a break? In my area SS provide direct payments to carers to help fund sitters so maybe there might be something similar in your area?

I am sorry about the lack of help from your other brothers but if they have always been that way, I think you will have to forget about them and look to SS for more help as it sounds as though you and your brother are at breaking point.

 

[canary]

Hellp dollymum. How distressing for everyone. I really cant see this situation being sustainable for much longer. I agree with everyone else - she needs a medication review to try and ease this anxiety. Are you in contact with the Community Psychiatric Team? If not, speak to the memory clinic or your GP.

BTW, not all care homes are the same. If/when your mum goes into respite again make sure that the place she goes to can cope with "challenging behaviour". Ask them how they deal with the sort of things your mum does and what sort of behaviour they would not be able to deal with.