Don't know what to do next?!

devongirl

Registered User
May 11, 2015
9
0
This is my first time posting. I have seen some great advice on here and hoping someone may be able to help (fingers crossed). My mums dementia has really taken over our lives over the past couple of weeks and I feel like we are at a crisis point, especially for my Dad who is her full time carer. My mum has become delusional and no longer recognises my dad and has become very violent towards him a few times, punching him so hard she broken his glasses one time. Unfortunately they have had some bad advice from their GP a couple of months ago who told them to stop mums medication straight away as she was getting headaches from it. So things got much worse from there. They also think that she may have a urine infection but her GP wouldn't give antibiotic until they had a urine sample!! Trying to get sample from my mum was like trying to give a cat a bath. So things have escalated. We did managed to get her medication reviewed to calm her down and she is now on antibiotics (we do however keep finding these around the house so who knows how many she has actually taken). She also keeps leaving the house and walking off by herself. We had met with a couple of care homes and a nursing home who have all said they wouldn't be able to take her in. My dad is exhausted and has hit rock bottom and I just don't know what to do or who to turn to. Has anyone else experienced the "no mans land" where aggression and violence means that you are stuck between a rock and a very hard place?
 

looviloo

Registered User
May 3, 2015
463
0
Cheshire
Welcome to TP :). Lots of great advice and support on here!

Firstly, do you have a social worker involved? If not, then it might be time to contact your local social work department and explain the situation.

Other good contacts are Age UK and the Alzheimer's Society. They can also offer a way forward.

It sounds like your dad needs more help in looking after your mum. Have you looked at other Care Homes, ones that might have spaces? The Social Worker might be able to help with that. Perhaps a respite break is needed with a view to long term care.

Sorry, I have the dash out now but just wanted to welcome you - I'll catch up later! Other's will be along with good advice. Good Luck.
 

devongirl

Registered User
May 11, 2015
9
0
Welcome to TP :). Lots of great advice and support on here!

Firstly, do you have a social worker involved? If not, then it might be time to contact your local social work department and explain the situation.

Other good contacts are Age UK and the Alzheimer's Society. They can also offer a way forward.

It sounds like your dad needs more help in looking after your mum. Have you looked at other Care Homes, ones that might have spaces? The Social Worker might be able to help with that. Perhaps a respite break is needed with a view to long term care.

Sorry, I have the dash out now but just wanted to welcome you - I'll catch up later! Other's will be along with good advice. Good Luck.

Thank you for your reply. We have social services involved. They managed to get a waking carer to come in over the last few nights as we were so worried for dads safety. Unfortunately mum has not been happy with "a stranger" in her house. We did ask about respite too just to give us time to sort things out but again all the care homes and nursing homes we spoke to were not prepared to put their residents and staff at risk by bringing in a violent person. I can completely see their point but we are just left in no mans land. Also they have all said to us that she needs to agree to go in which she obviously wont do so we are stuck. Perhaps you are right and more help at home is the way forward. Thanks again for your reply. xxx
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
If she keeps wandering she will be picked up by the police and this can turn out to be a good thing. They write reports every single time which then go to social services and she will become an emergency if they deem her to be in danger to herself or others. She may end up being sectioned and others on TP have found that though upsetting this also has a positive side in getting her the attention and medication she needs.

I found the police to be very sympathetic and helpful over my husband's wanderings so don't hesitate to call them if you have any issues.
 

devongirl

Registered User
May 11, 2015
9
0
If she keeps wandering she will be picked up by the police and this can turn out to be a good thing. They write reports every single time which then go to social services and she will become an emergency if they deem her to be in danger to herself or others. She may end up being sectioned and others on TP have found that though upsetting this also has a positive side in getting her the attention and medication she needs.

I found the police to be very sympathetic and helpful over my husband's wanderings so don't hesitate to call them if you have any issues.

Thank you for replying. We have had a few discussions with social services and they have mentioned a few times that she may need to be sectioned as a last resort. We are hoping that her new medication can calm her down enough that a residential/care home will take her in. We never wanted it to come to this and we all feel awful about the thought of her having to go somewhere else for care but we just can't cope with the situation any more.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
A urine infection and the change of meds can make a massive difference to the way someone acts. It would be worth asking if she can have a low daily dose of antibiotics once this is cleared to stop it happening again - our GP was extremely helpful in understanding that we couldn't get samples and that was why we wanted the daily dose. My Ma didn't have another infection from the time we started the daily dose onwards

however it is obviously vital that she takes the antibiotics. Can your dad not supervise this course of antibiotics ? Hide them in her favourite food - anything to get them into to her to see if it makes a difference which it may well. If she doesn't get the right dosages the infection will not go away and will come back with a vengeance. Phone the District nurses and explain the situation regarding the antibiotics- they may be able to help with intravenous or someone else giving them to her - tell them you are desperate

Welcome to TP sorry I too am dashing out but had to respond as we have been in similar situation . will come back later xx
 

devongirl

Registered User
May 11, 2015
9
0
A urine infection and the change of meds can make a massive difference to the way someone acts. It would be worth asking if she can have a low daily dose of antibiotics once this is cleared to stop it happening again - our GP was extremely helpful in understanding that we couldn't get samples and that was why we wanted the daily dose. My Ma didn't have another infection from the time we started the daily dose onwards

however it is obviously vital that she takes the antibiotics. Can your dad not supervise this course of antibiotics ? Hide them in her favourite food - anything to get them into to her to see if it makes a difference which it may well. If she doesn't get the right dosages the infection will not go away and will come back with a vengeance. Phone the District nurses and explain the situation regarding the antibiotics- they may be able to help with intravenous or someone else giving them to her - tell them you are desperate

Welcome to TP sorry I too am dashing out but had to respond as we have been in similar situation . will come back later xx
Thank you so much for your reply. Not sure how she is doing it but we give her the antibiotic give her a drink check her mouth and then later on find the capsual somewhere e.g one in the toilet?!! She must be hiding it very well in her mouth. But it was my concern that if we don't get rid of the infection then things may get much worse. We have another meeting with social services on Monday about what we can do and perhaps we can get help in who can also give her the meds that she needs. I will ask about the low dose of antibiotics ongoing as well. I think because she won't let anyone help her go to the loo at the moment she is not being cleaned properly which has caused the infection. It's so hard, one thing seems to affect another thing and everything just topples.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
Ahhhhhhhhhhhhh that is really difficult to deal with. Perhaps the district nurse team would be able to advise on the meds - or do you have an admiral nurse
someone suggested their helpline. The info is on this page - not very useful at the weekend but it might be useful to keep to hand anyway
https://www.dementiauk.org/how-we-help/admiral-nursing-direct/

over the weekend it might be worth trying putting them into favourite foods - you might need to crush them - if she is hiding the whole ones she can't do that if they are crushed
just a thought - we did that with my Ma for a while when she couldnt swallow properly
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
It's worth remembering next time antibiotics are prescribed, to ask for them in liquid form. That's assuming she will take it from a spoon. It is usually a thin syrupy consistency, and must be kept in the fridge. Sometimes there has been a plastic syringe included, but I have never needed to use this as my OH is happy to let me offer it to him on a spoon.
 

Kitten71

Registered User
Jul 22, 2013
157
0
East Yorkshire
Hello, I'm sorry to hear you're in such a difficult situation. Are there any care homes near you which have a specialist dementia unit? Social services helped find one for dad when he started to get violent after sepsis and a UTI. He still isn't keen on having his personal care needs taken care of but he's calmer than he's been for months. Have you had a look at the Mental Health Act, as it's possible to section a relative yourself if you considered this an option. It says it's uncommon for family to take that approach but if you are at the end of your tether and not in a position of safety, it might be a way forward to getting the help you need. Social services should help to find a suitable home for you all, even if it's just for respite. It's their job to help provide solutions for you all. Best of luck with it all. My heart goes out to you x
 

devongirl

Registered User
May 11, 2015
9
0
Thank you. Will definitely ask about liquid form that could be the answer. To be fair to mum the capsual are very big so I can see why she is uncomfortable swallowing them but we will have to empty the contents into food in the mean time. She really needs the full course of antibiotics. Thank you for the numbers too, will call on Monday we are desperate for any help advise we can get.
 

fizzie

Registered User
Jul 20, 2011
2,725
0
It's worth remembering next time antibiotics are prescribed, to ask for them in liquid form. That's assuming she will take it from a spoon. It is usually a thin syrupy consistency, and must be kept in the fridge. Sometimes there has been a plastic syringe included, but I have never needed to use this as my OH is happy to let me offer it to him on a spoon.

oh that is brill - we were never offered that even when they knew we were struggling thanks for that info
 

devongirl

Registered User
May 11, 2015
9
0
Hello, I'm sorry to hear you're in such a difficult situation. Are there any care homes near you which have a specialist dementia unit? Social services helped find one for dad when he started to get violent after sepsis and a UTI. He still isn't keen on having his personal care needs taken care of but he's calmer than he's been for months. Have you had a look at the Mental Health Act, as it's possible to section a relative yourself if you considered this an option. It says it's uncommon for family to take that approach but if you are at the end of your tether and not in a position of safety, it might be a way forward to getting the help you need. Social services should help to find a suitable home for you all, even if it's just for respite. It's their job to help provide solutions for you all. Best of luck with it all. My heart goes out to you x

Thank you for your reply. We have a couple of really lovely dementia homes close by which would be perfect. One is unfortunately full with a waiting list the other we had an assessment from the manager who said with the obvious anger/aggression and agitation that mum is displaying it's not safe for other residents to have her there. I understand her position. I have also phoned several care homes, even a nursing home for people with mental health issues and they have said the same thing. They think she is a potential danger to staff and residents. We are in a strange no mans land. I'm hoping that our meeting with social services on Monday can help us. A couple of people have mentioned the mental health act and sectioning her it will be a tough decision to make :(
 

Kitten71

Registered User
Jul 22, 2013
157
0
East Yorkshire
Thank you for your reply. We have a couple of really lovely dementia homes close by which would be perfect. One is unfortunately full with a waiting list the other we had an assessment from the manager who said with the obvious anger/aggression and agitation that mum is displaying it's not safe for other residents to have her there. I understand her position. I have also phoned several care homes, even a nursing home for people with mental health issues and they have said the same thing. They think she is a potential danger to staff and residents. We are in a strange no mans land. I'm hoping that our meeting with social services on Monday can help us. A couple of people have mentioned the mental health act and sectioning her it will be a tough decision to make :(

Everyone is failing you. It's not fair. It's incredible to think these care homes just take placid elderly folk when aggression is such a common issue in dementia. We only really had one choice of where to re home dad as one place wasn't assessing at that time and the other was too far away so we got lumbered with the one with a 'requires improvement' CQC report! :eek: The CQC are there at the moment so everything is wonderful, but that's a whole other story! I totally understand where you're coming from with the sectioning issue. It's a terribly tough decision and I suppose you have to decided whether it's in your mum's best interests or not. My dad was under section 2 of the act and whilst he was in hospital he was sedated for much of the time, for everyone's safety, including his own. He was throwing furniture around and ripped the curtains (and their rail) from the wall and one day got my relative in a headlock, holding a clump of her hair. No one wants to see their loved ones doing that. He ended up in a room containing his bed and nothing else and was not allowed his glasses or his teeth. He had 24 hour security keeping an eye on him too. Whilst I know all this sounds pretty grim (it was), I just wanted you to know that there is light at the end of the tunnel. He was treated for some pretty nasty infections and was slowly weaned off the sedatives and although it's not all plain sailing now, we are a million times better now than we were three months ago. Somebody just has to help you, you shouldn't have to cope with a difficult situation alone. Why not ring the Alzheimer's Society helpline and ask them to help you form a few questions and set an agenda for your meeting with social services? I did that and it was extremely helpful :)
 

devongirl

Registered User
May 11, 2015
9
0
Everyone is failing you. It's not fair. It's incredible to think these care homes just take placid elderly folk when aggression is such a common issue in dementia. We only really had one choice of where to re home dad as one place wasn't assessing at that time and the other was too far away so we got lumbered with the one with a 'requires improvement' CQC report! :eek: The CQC are there at the moment so everything is wonderful, but that's a whole other story! I totally understand where you're coming from with the sectioning issue. It's a terribly tough decision and I suppose you have to decided whether it's in your mum's best interests or not. My dad was under section 2 of the act and whilst he was in hospital he was sedated for much of the time, for everyone's safety, including his own. He was throwing furniture around and ripped the curtains (and their rail) from the wall and one day got my relative in a headlock, holding a clump of her hair. No one wants to see their loved ones doing that. He ended up in a room containing his bed and nothing else and was not allowed his glasses or his teeth. He had 24 hour security keeping an eye on him too. Whilst I know all this sounds pretty grim (it was), I just wanted you to know that there is light at the end of the tunnel. He was treated for some pretty nasty infections and was slowly weaned off the sedatives and although it's not all plain sailing now, we are a million times better now than we were three months ago. Somebody just has to help you, you shouldn't have to cope with a difficult situation alone. Why not ring the Alzheimer's Society helpline and ask them to help you form a few questions and set an agenda for your meeting with social services? I did that and it was extremely helpful :)

Yes, it did shock me that no one will help. Surely not everyone with dementia will willing accept the help that they need? Over the past couple of days she has also managed to run out the house a lot and my dad has had to go and find her. Unfortunately it seems my dad can no longer cope on his own with her so someone else has to be with them 24 hours a day. Social services are coming first thing Monday morning and I pray that they can do something. I feel that at the moment their only option will be to section her unless by some miracle they can find a home that we help us. :(:(:(
 

devongirl

Registered User
May 11, 2015
9
0
Hello, I'm sorry to hear you're in such a difficult situation. Are there any care homes near you which have a specialist dementia unit? Social services helped find one for dad when he started to get violent after sepsis and a UTI. He still isn't keen on having his personal care needs taken care of but he's calmer than he's been for months. Have you had a look at the Mental Health Act, as it's possible to section a relative yourself if you considered this an option. It says it's uncommon for family to take that approach but if you are at the end of your tether and not in a position of safety, it might be a way forward to getting the help you need. Social services should help to find a suitable home for you all, even if it's just for respite. It's their job to help provide solutions for you all. Best of luck with it all. My heart goes out to you x
Thank you.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi devongirl
I have so much sympathy for your situation - wish I could actually help!
I, too, don't understand how there can't be a place available for your mum somewhere.
My dad is on the dementia floor of his care home and though he is usually lovely and the staff have really taken to him, he has blow ups when he is incredibly challenging (paramedics out, police out) - I truly thought at one point he would be sectioned (I know now from members here that this would not be as devastating as I previously feared). But the staff at the home have been fantastic in supporting him, calling in the CPN etc immediately. They now know him so well that they mostly can step in with tactics and meds to prevent him blowing his top. And this is after being 'warned' at the assessment that they have a policy of moving out residents if they can't meet their needs - I know now that they work hard NOT to have that happen.
So there are homes out there where your mum would be supported. I really hope the SS sort out one urgently. They must surely put your dad's welfare as equal priority. Thank goodness you can stand up for them both and make their situation clear !
very best wishes
 

devongirl

Registered User
May 11, 2015
9
0
Hi devongirl
I have so much sympathy for your situation - wish I could actually help!
I, too, don't understand how there can't be a place available for your mum somewhere.
My dad is on the dementia floor of his care home and though he is usually lovely and the staff have really taken to him, he has blow ups when he is incredibly challenging (paramedics out, police out) - I truly thought at one point he would be sectioned (I know now from members here that this would not be as devastating as I previously feared). But the staff at the home have been fantastic in supporting him, calling in the CPN etc immediately. They now know him so well that they mostly can step in with tactics and meds to prevent him blowing his top. And this is after being 'warned' at the assessment that they have a policy of moving out residents if they can't meet their needs - I know now that they work hard NOT to have that happen.
So there are homes out there where your mum would be supported. I really hope the SS sort out one urgently. They must surely put your dad's welfare as equal priority. Thank goodness you can stand up for them both and make their situation clear !
very best wishes

Thank you for replying. I am praying that our meeting with social services tomorrow can help. We are all exhausted physically and emotionally. Its so hard to try and be there for Mum and Dad as well as our own families. The guilt is becoming unbearable. If Im with mum and dad I feel bad for not being at home with my son (who is 8) and my partner but then if I am home then I feel bad for my dad. My sisters and I all work full time as well so we cant be there all the time. :confused:
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Morning Devongirl
your family members are being pulled in so many different directions at once!
Please, in the meeting tomorrow, make that absolutely clear - SS need to appreciate that you can all do just so much and if the current situation is allowed to continue you will all have to withdraw your support as you must continue with your own lives, especially when children are involved. (Yes, I know your family won't actually just walk away - but in a crisis in your own lives what choice would you have)
It seems that SS are relying on your family to cope when there is evidence that professionals won't - which is untenable.
Maybe take copies of your posts here and bullet points of your concerns and actions you want taken - I used to because I didn't want to leave meetings feeling I'd left something out of the discussion.
It may be that they will surprise you and the meeting is about what they can do for your mum - I so hope so
You are all doing a fantastic job of supporting your parents.
very best wishes for tomorrow