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Discussion in 'I care for a person with dementia' started by Frankieisblue, Dec 19, 2015.
Thank you jackie
Why is dementia the one illness where family are expected to manage at home with little help? If it were any other illness there would be help easily available. There is help Frankie but I'm afraid you will have to go looking for it. Tell them what you have told us, that you are all at risk with the situation as it is. You deserve a life too!
lots of people say when they are caring for those with dementia 'one day at a time'. i found that helpful. Get some help tomorrow and then see how you all feel xx
Thank you very much
And thank you x
I am a carer with Mental health issues and have found myself close to the edge at times. It's such a constant high stress situation with no let up. In my opinion, the best thing that you can do is follow the other's advice and seek help for you and your mum. With the right support, it's much more bearable on an emotional and a physical level.
I have found some positives in caring for my Dad, the main one for me being that the responsibilities involved have brought me out of the bad place I was in and have given me new found confidence. Whether your dad stays at home with extra support, or goes into a Care home, you might find this is the case for you too. Best of luck with the phone calls.
dear frankie and hvml- hope it is OK to quickly post here, didn't feel it was appropriate to pm you both. The situation is I dad, who is 3 years into a diagnosis of AD (but obviously has been unwell for longer) has been living with my brother who has mental health issues. There were professional carers throughout the day. My brother has very much wanted dad to stay at home . After a series of falls, the onset of double incontinence and a sharp cognitive deterioration he has gone into hospital and last week we were told by all health care professionals involved in his care he cannot go home (it takes 3 to get him off the floor, he resists personal care, he needs 24 hour care, the professional carers only work daytime).
my brother has been devastated as i believe caring gave him a role, social contact with the carers, and company. I am worried his mental health will deteriorate after Dad moves into care (we're waiting on a bed in an EMI). What can I do to support him and facilitate him living alone? (it'll be the first time ever for him, he is 47 yrs old).
Sorry to post here , any advice/ insights you can offer re my role as sister and support would be most appreciated.
Oh Miss Marple what a sad situation you are coping with, I am so sorry xxxx So glad you Dad will get the care that he needs now and of course in the right place your brother will be able to spend as much time with him as he wants to - many homes welcome family to come and spend time with their loved ones and with other residents. My first step would be to make sure that any home your Dad goes to understands the incredibly strong bond that your brother has with your Dad and that he is welcome there at any time (within reason) - homes will often let family and friends have lunch (for a nominal amount) sometimes because it makes their lives easier at busy mealtimes and helps residents eat better. Gone are the days of protected mealtimes (I hope) in care homes as it is the home of the resident.
I would encourage you to support your brother by helping him negotiate with the care home with your brother and encourage him not to think of it as a parting of the ways but as extra hands to help him care for your Dad.
I am sure you have tried all other routes but it would be lovely if your brother could get involved in a local Mind group and also in a local carers group now he will have more time - not only will he gain from it but he will also help others. He will still be a carer (we have lots of carers in our group who have loved ones in homes) and so hopefully he will find it useful and feel needed.
Thinking of you all at this really didfficult time xxxxxxxxxx
I have some experience of the support services in your area as my parents lived nearby before I moved them in July.
You need to speak to the Vale of Glamorgan Contact and Assessment line on 01446 700111 as soon as possible and explain your situation as bluntly as you can. In my experience they are responsive and will talk to you on the phone and then send someone to see you to assess your Dad's needs.
The Memory Team at Barry Hospital are also very good. They will also send someone out and recommend what to do. We used a Care Agency based in Penarth (Crossroads) who are specialist in dementia and were very very good whilst my parents were still in their own home. They were recommended by the Memory Team.
You might already have this info but I wanted to post as I have some local experience. I do hope it's helpful and that you can get the help you, your Mum and Dad need very soon.
Dear Fizzie thanks so much for your thoughtful post. Yes bro thinks it's all over but i will try and work to let him see it is not and he can still have an important involvement. Also he does not even think of himself as a carer because Dad had professional carers during the day, but when I was at home last week I saw some bumf from a carers' group and encouraged him to give it a look.
This is silly, but 3 years ago our mum's cat died (mum died 21 years ago) and he's wanted another one ever since, but he wants a pedigree one and I'm going to help him get one. It's the kind of not too demanding presence I think he'd benefit from.
No need to apologise!
Post away and hope you find the advice you need xx
That's a great idea Miss Marple - with the cat and the carers you may well be on the road to helping your Bro but do encourage him to spend time with your Dad as well - probs won't need much encouragement lol
Thank you so much
That is great advice xxxx
Bless you !!
I totally understand!
I totally understand where you are coming from. I 'get it'. The feelings of fear and frustration is so apparent and probably many of us 'get it' too. Today I managed yet another push/pull angry violent man. He could hardly breathe through his anger as he threw the laptop and hurled the vacuum into the air whilst yelling full in my face. I put my arm up to stop something coming at my face-turned out to be him and the movement sent him flying. I feel so very very scared at times and very very sorry at others. It was my respite this afternoon where I was going out with a pal for a Christmas meal. This angry outburst happened just a short time before, so I could not put on the special dress I had bought for the occasion nor put on the make-up or be the 'happy, distracted' woman I wanted to be. Instead I threw on my jeans and a T.Shirt and left the madness for a few hours, but of course, I had to return, back to the unsafe environment I live within. When another walks through the door, my LO becomes someone different, though the paid carer who came to sit with him whilst I was on respite today, said 'what's going on?' He said that he could 'feel anger' coming from my LO. My poor husband becomes someone to fear and its hard to hate the disease and not the man because the disease and the man somehow merge. He is now calm and very very quiet...and I don't even trust this. I do have help: the respite etc but no-one is ever here to see nor witness these unbelievable outbursts which leaves us both emotional cripples.
I know I probably haven't helped, but have no idea how to start a new thread and felt like you would understand as I understand your frustration. Guess that's all we can do is to let each other know that we understand...and then there's Christmas!
This is a hard journey...
Hi Frankie, There is an Alzheimers Society Dementia Cafe in Bethel Baptist Church, Llantwit Major on 5th January 2pm - 4pm. Go along and chat to the support worker and other people in a similar position from your area. It is great to talk to people who really understand what you are going through and find out about local help.
Hello Frankie, hope you are ok. I have been thinking about you over the holidays. Love quilty
My OH was diagnosed with Alzheimers just over three years ago. I have cared and supported him alone ever since. He has always enjoyed alcohol and has continued to drink despite the Doctor's advice not to. The Doctor said his regular drinking would accelerate his dementia. He refuses to acknowledge he has dementia and says there is nothing wrong with him. His birthday is on Christmas Day so he was drinking plenty of lager, he knocked two pints over during the evening, one it the kitchen and one all over the lounge carpet. I told him off, I had quite a stressful day coping with early morning visit from neighbours, helping OH to open gifts and cooking dinner, all without help. I was tired by the evening hence the argument, and he threatened me with violence. This is the second time in a couple of months he has threatened me, and I felt afraid, particularly as he had been drinking. We sleep in seperate rooms thank goodness and when I went to bed on Christmas night I barricaded myself in my room, just in case. He has been in a strange mood again today, very argumentative and confrontational and seems to be harbouring some nasty thoughts. I am very very depressed at the best of times, but feel that this Christmas is bringing things to a head, I am still feeling upset and afraid, he is drinking lager again, sometimes he moves on to whisky. I have managed to hide the whisky for now, if he discovers that I have, I feel for my life. my stomach is churning as I am writing this, as I have no one I can turn to for help, we have no family. I am at the end of my tether, and I feel that I can't go on, I have had suicidal thoughts in the past. My GP just offered anti depressants when I went to him. I have no support, we are together 24/7. and basically he is driving me insane. I suppose an unhappy marriage to begin with doesnt help, my life is one big disaster from beginning to end with no light at the end of the tunnel, I feel in a very dark place, I am going to barricade myself in again tonight. Sorry for this depressing post folks, I have had to share my thoughts and feelings with anyone who may be there.
Sweetie first I'm sending you a big hug.
Second if he kicks off again ring 999.
You need to stay safe. Keep posting here. We understand.
Just to say no-one should have to put up with this - dementia or no dementia. I agree with Cat. Phone 999 if he is violent or even threatening violence.
You have sought help and have not been given the help you need. That's not your fault. You should phone the Samaritans and tell them just what you have told us. They exist to give help to people who are having the kind of (perfectly understandable) feelings that you are having.
Do keep posting. There will be others who have had to deal with this kind of problem. No-one on TP will be depressed by your post. They will understand how you feel.