Mum advanced dementia but still able to feed herself and walk. Incontinent sometimes, aggressive sometimes, often doesn’t sleep, agitated, uncooperative but can be slowly coaxed, cajoled and encouraged to most things. Dad full time carer, has no life, no friends and little time to himself. I work full time and have a family but spend evenings and weekends with them to keep him going. I think he’s depressed and I feel like I’m watching the pair of them die slowly, one with exhaustion caused by the other. I am frightened of the future. The cost of care is draining us. The only way out of this is death. All a bit grim.
CHC refused. It feels like wading through porridge to get any help. I’ve asked for a carers assessment at the GP but csw on holiday (every time I call) and I wait for the promised call back in vain. I suspect they’ll offer nothing. I don’t feel there is any support out there. I have no time to investigate anything and what I do find is never any use, say we need to self fund or don’t return calls. We are paying £1200 a month on care at the moment. I feel isolated and angry.
Sister…says there …there… there…but too busy to visit this weekend…or next…or next. She is very well off and is taking lots of holidays hence unavailable. I’m not well off and quality of life is poor. I really feel angry with her.
Today I found myself googling when do you die from dementia. I will feel dreadful when she goes but possibly hugely relieved
Vented… not sure I’ll post because I feel ‘what is the point’ about most things nowadays …that or ashamed
Hi Lynda
Please please do not feel ashamed!! If its a small consolation, I googled time span of dementia regarding my lovely husband, who was my soulmate. Seeing him decline and decline broke my heart although he had other complex issues too. He died on the 11th May, and my daughters and myself felt guilty because it was a relief. Miss him dreadfully, the hubby he was. Others at the nursing home he was in say it was a relief when their loved ones passed. Dementia is terminal, and a long goodbye.
Your sister is so unfair. The type of person called a helicopter on the forum. Drop in and out and no help whatsoever.
I’m not going to continue, as others will be a long with supportive advice rest assured.
My heart goes out to you, and please keep posting, as it helps. I wouldn’t have got through without.
Hi Lynda.
Purely on the CHC / NHS Continuing Healthcare side , would you like us to help you through the motions of what can be done
when an application is first rejected ?
Just let us know … and I will gradually do so without too much of an initial bombardment … promise !
As you know already … as we do … not exactly the easiest of services to comprehend.
£ 1,200 per month for care … CHC / NHS Continuing Healthcare is free … even from that perspective alone ?
Carers assessment…
You can approach you LA directly, Some area commission these out to other agencies. They will help you to refer. It’s necessary to wait for a g.p,
Try and join your local carers support group. As with this forum other carers are a great avenue to gain information.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment
How do I get a carer’s assessment?
You should be offered an assessment by the local council adult social services department of the person you are looking after.
If you have not been offered one, you should contact them by phone, in writing or on-line, and ask for an assessment.
If you want to, you can ask for an assessment before you take up your caring role.
Hi Lynda,
Welcome to the forum.
The time is fast approaching when, however much you don’t want to, you and dad are going to have to make the decision for mum to move into residential care. Mum will muddle along until something happens that changes everything, a fall, an illness, dad being ill.
I would strongly recommend that you investigate the homes in your area, it will need to be an Elderly Mentally Infirm Home, which can cope with mum, whatever happens.
Do mum and dad own their home?
Do they have over £46,000 in savings between them? (Yes/No)
Is mum claiming Attendance Allowance?
Is mum claiming exemption from Council Tax on the grounds of “severe mental impairment”?
Do you have Power of Attorney for both your parents.
How old are mum and dad?
When did mum last have a Needs Assessment, and dad a Carers Assessment, from Social Services?
Sorry for all the questions, but once you give us a bit more info, we might be able to make some suggestions to make life a bit easier for you and dad.
Hello Lynda, welcome from me too.
I see you have been asked for a lot of details so that help can be given.
I also see that it’s been suggested that you may need to start thinking about looking at Care Homes. This is always a tough thing to do but I’m sure you will be helped with that if the decision has to be made. As a start to that process there is a useful site where a post code search can be done to see what’s available in your area and you can find that with the following link. I can’t vouch for the reviews but know it certainly gives a comprehensive list of what’s available in my own area
Another thing that may be useful is Admiral Nurses as I’m told that their dementia service can be good. They don’t operate in my area but if you want to check for availability in your area it may be worth a try. Just follow this link to their site Admiral Nurse Dementia Helpline - Dementia UK
Thank you. I’m exhausted but will read this tomorrow and reply. It’s nice just to speak with others who understand
CHC help might be good when I have the energy to tackle a fight. They have over £46000 in savings I think (I’m not involved in their financial affairs yet although I have LPOA) It may be less but he put all their savings in mum’s name as she didn’t pay tax. That sounds a lot. Not knowing how long this is going to last and what we will need financially is very stressful. A care home would whistle though that in a year or two I imagine.
Carers assessment for her…I have no idea if this has been done. We’ve struggled to get various people to come and I don’t think anyone has formally done this. I know I sound vague but dad is her main carer and isn’t always that clear because he’s exhausted. Most visitors sympathise but tell us to buy in more care.
I meant a carers health and well-being check for me! I was told by our local Carer group to organise one as I was sounding low. I said I didn’t have time but then recognised that I was nearly bursting into tears every time someone mentioned the situation and thought maybe I could talk to someone. But they haven’t contacted me back.
The continence nurse turned up without warning when dad wasn’t dressed or up and said mum could only have items once a survey had been completed demonstrating consistent incontinence. As Dad was undressed and mum was rampaging at the visit and he felt overwhelmed by completing an assessment he gave up on that. I think I need to take control of some things.
I’m rambling now 
Yesterday I started writing this post but was interrupted numerous times. Emergency dash to buy more bedding, get another waterproof mattress cover and Mum now being treated for a urine infection. I also did a nice lunch to cheer dad up. Today is mine. (I think…)
__
CHC help might be good when I have the energy to tackle a fight.
Given your present caring situation , how long before that alternative becomes paramount … could even be tomorrow ?
We all know that one’s caring role can become intolerable virtually overnight … with no hope of improvement as our caree’s
condition worsens … a very sad fact of life from our position as both a carer and relation.
As I read it , outside help needed … the sooner , the better … for all concerned , including your own health and well being.
Nearest admiral nurses location is 30 miles away sadly.
Am I alone in feeling hesitant in reaching out for help. My experience so far has been that we reach breaking point…contact GP or adult care team and then get passed from pillar to post. I can’t keep track of how many teams, who is who, different names, rapid response, crisis, support network, adult care, mental health, community mental health, CPN, carers support, carers support worker… I no longer know who is part of a charity or who is council or NHS and each seems keen to refer us to another team and the end result seems to be that people fail to ring back or arrive when expected…then when they do they make suggestions which are unhelpful or just tell us to consider nursing homes. I think a nursing home would solve it for them.
Mum will go downhill rapidly and be very distressed. Dad would feel guilty and depressed. Finances would be a big concern.
Having said that it is on my list of things to do in my holiday …investigate homes.
My previous response was before I read this.
I agree with this 
Actually I think I need to start a diary which logs everything. It all seems so chaotic and I don’t have answers quickly. That might help me
Several on this forum would agree with that , Lydia.
AGE UK … might be to your advantage to make contact … at least they are on the front line.
Your situation will probably be meat and drink to them.
When one is " Drowning " , one tends to look at all possible alternatives ?
Definitely start a “diary”.
I would suggest a ring binder with dividers, one for Doctor, hospital consultant, social services.
On the front of each divider write down their name, address, and telephone number. Also their rank, i.e. student nurse, ward sister, district nurse.
Record the date and time of each call, who you spoke to and what was agreed. If they gabble their name or don’t give their surname, ask them to repeat it, I now say “don’t you have a surname” if they only give a first name.
I agree with the ring binder folder…you would be amazed how many times I have had to cross reference back to it for info…Keep everything.
I have a old fashioned Filofax which I carry with me at all times that lists all her medical ailments, any operations she has had and when she was diagnosed with each problem. Also stuff like when she gave up smoking , her weight and height…all of which they ask when she is admitted to hospital
I found as well you do get referred to a lot of services that are no use what’s so ever ( I’m sure they would suit some people) but when we where offered a charity befriending service it seemed like a brilliant idea until they explained that they didn’t do “dementia” and couldn’t help with toilet duties and since my mum is blind and has Parkinson’s dementia there was no way I could leave the house for a break so I declined.
It is difficult because on the one hand your screaming out for help but on the other your butting your head against a wall with what’s out there…
Welcome indeed , to the harsh reality of CarerLand , Linda.
One link you will probably use already … the leading charity for Parkinsons Disease :
Yes! Exactly this
Raising expectations only to dash them is worse than getting nothing
"Am I alone in feeling hesitant in reaching out for help. My experience so far has been that we reach breaking point…contact GP or adult care team and then get passed from pillar to post. I can’t keep track of how many teams, who is who, different names, rapid response, crisis, support network, adult care, mental health, community mental health, CPN, carers support, carers support worker… I no longer know who is part of a charity or who is council or NHS and each seems keen to refer us to another team and the end result seems to be that people fail to ring back or arrive when expected…then when they do they make suggestions which are unhelpful or just tell us to consider nursing homes. I think a nursing home would solve it for them.
Mum will go downhill rapidly and be very distressed. Dad would feel guilty and depressed. Finances would be a big concern.
Having said that it is on my list of things to do in my holiday …investigate homes."
Reading this with interest and genuine concern, for what that’s worth. The problems we are both facing is manifold. A lack of coordinated resources and focussed help. The overwhelming sense or hint here and there that those purporting to offer help are simply pushing you and me and others onto other people, passing the buck no less. The great difficulty of knowing what financial aid is available in these dire and often very grim and severely stressful situations, the stress of having to aggressively and actively pursue all any help, like the proverbial desperate man grasping at any straw, when we don’t want to get out of bed ever again and are very probably sick to the pit of our stomachs with stress, have a massive stress lump in our throats and are on the verge of tears, and feel like we are going loopy, too. Equally, the stress of people who have worked hard all their lives and have some savings having to spend all of that on a few years of care, not knowing what happens after, or the other side, a person such as myself who has struggled with long term health conditions including depression and twenty years of chronic fatigue syndrome, not knowing what help might be available or if I have to pay (or we have to pay) for care with our meagre resources.
First off, I now have accepted there is a problem, it’s not very nice, it’s quite stressful and it’s unlikely to get any better. Secondly, I have gently but firmly hassled, begged and cajoled my Drs and the ambulance workers who have come to give me help and advice and anything practical. Thirdly, I also accept that stress will come but try not to get angry at things out of my control. Acceptance has to be a key here. Fourthly, I have accepted that my pattern of living is for the time being on a completely ad-hoc and moment-by-moment basis. As of now I’m typing this at half 5 in the morning because I slept exhausted throughout half the day. Not ideal, but at least I got some badly needed sleep. Fifthly, I love my mum and I told her yesterday I loved her and she said she loved me. I remember what the core of this world should be about, love and care and practical concern for others, even though many of us are surrounded by seas of apathy, disinterest and even malice, sometimes even from our own families and ‘friends’. And finally, and not least, I pray for help. The other night I was so severely stressed and ill with worry I was beside myself. I’ve never felt such stress. Today, I feel better. Not great, but better.
I wish you well, and pray you get some concerted and practical help. Don’t give up. Keep asking. Beg if you have to. Don’t even worry about the money situation. These things can and do work out to the advantage of all.
God bless.
Cerinthe
I am now getting my mum into respite for a month with a view to getting her into permanent residential care.
I was simply honest with my Dr, he got an emergency team out 4 times a day, still coming, until she is placed there.
I pray you get some concrete help along these lines.