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Breaking point

tryingmybest

Registered User
May 22, 2015
644
I'm normally such a very strong and positive person but I'm worried about myself right now, as well as my Mum, who has lived with me as her sole carer for over 4 years. I have written about my situation before and this year has been just dreadful and so far there is no let up. Two hospital stays this year and apart from obviously having vascular dementia, there appears to be no medical reason Mum is like this.

The past 3 weeks especially, Mum is just so aggitated, horrendously so, and I don't know what to do. The GP just says it's a progression of her illness, prescribed an antidepressent Amitriptiline, which she's been on for 12 weeks which hasn't worked. She started a different one yesterday, Mirtazapine, as recommended by the "neighbourhood team" who have recently become involved. However, she was on that 2 years ago and it made her aggressive and she lost her mobility so came off it but they wanted to try it again, (against her GPs recommendation).

She always cries a lot, but for 3 weeks solid, as soon as she wakes is crying, wailing, making horrible grunting noises and continually trying to get out of whichever room she is in. If she's in her bedroom she will bang and crash her frame down the landing to the bathroom, sit down, go back to her bedroom then exactly 4.5 seconds later does the same, yes really!! This happens in the morning and also at bedtime and can happen up to 25/30 times. She cannot be distracted and she doesn't know she's doing it. I lock my bedroom door (or she will keep coming in my room) but she will sometimes get up and keep trying my door for up to 2 hours at a time, which is a cottage style latched door so it's click click click all night/morning. When she's downstairs, she will go from door to door clicking the latches or trying to get out in the garden or front door. All the time she is crying and wailing and trawling her blanket behind her. It's heartbreaking, distressing and every emotion you can imagine. I can't bear to see her.like this and I don't think I can cope anymore.

I just simply cannot believe, in this day and age there is nobody to help or anything that I can give her to help. I'm on my knees and have exhausted all avenues. I still want to continue to care for my Mum until the end at home with me but at the moment I don't know how to.

Everyday I hope she will be less aggitated. I still manage to get her out somewhere everyday and during that time she is like a different person, happy and smiley, but back home its a different story! Even her music dvds do not soothe her anymore. What do I do?
 
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TheBearsMummy

Registered User
Sep 29, 2017
101
East Midlands
Call for an ambulance when she is really worked up, the crew will be used to dealing with this and will either take her to hospital where she can be properly monitored and stabilised before she is sent back home or they will calm her down and leave. If they leave her at home then call them back as soon as she works herself up again.
The time for putting a brave face on and coping behind closed doors has gone and it's time to look after yourself as well as getting proper care for your mum. A break from dealing with this and a calm mum on the right medication might be all you need to get back on an even keel
 

tryingmybest

Registered User
May 22, 2015
644
Call for an ambulance when she is really worked up, the crew will be used to dealing with this and will either take her to hospital where she can be properly monitored and stabilised before she is sent back home or they will calm her down and leave. If they leave her at home then call them back as soon as she works herself up again.
The time for putting a brave face on and coping behind closed doors has gone and it's time to look after yourself as well as getting proper care for your mum. A break from dealing with this and a calm mum on the right medication might be all you need to get back on an even keel
Thanks for your reply, however my experience of 4 hospital admissions at 2 different hospitals where Mums care was appalling, has taught me that a hospital is the last place someone with dementia should be. I hope to never have to repeat that again. There also would be no way inexperienced nor experienced paramedics of dementia would be able to calm Mum down, believe me. It's so difficult as nobody knows what to do. I've been saying to the GP all I want is something to calm Mum but there seems to be nothing available for Vascular Dementia.

Someone once said on here "To lose her in her sleep would break me but to carry on like this will kill me"!! Very true!!
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Just my thoughts

I’m wondering if she has pain of some kind?

Would it be worth trying some paracetamol - check with GP first

I know mum in care home had a paracetamol every 4 hours and it seemed to help her with her non specific agitation
 

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland

tryingmybest

Registered User
May 22, 2015
644
Just my thoughts

I’m wondering if she has pain of some kind?

Would it be worth trying some paracetamol - check with GP first

I know mum in care home had a paracetamol every 4 hours and it seemed to help her with her non specific agitation
No pain and they say she's medically fit but I give her 2 x 500mg paracetamol every 4 hours anyway and have been for some time as someone said on here before that helps with aggitation. I've been doing it for 3 years now but thanks for the suggestion.anyway.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,740
Kent
It sounds like a chronic state of anxiety.

There was a lady in my husband`s care home who continually rattled the front door saying `Let me out`. It was dreadfully upsetting to hear.
Apparently the staff did take her out and as soon as she was out she wanted to go back indoors again.

This lady was eventually prescribed sedation.

there seems to be nothing available for Vascular Dementia.
Do you think this would be considered for you mum @tryingmybest? I know it is frowned upon mainly because it could increase the risk of falls but your mother cannot continue like this. She seems to be in a state of continual agitation which is not fair on either her or you.

When I asked for my husband to be prescribed medication the consultant was concerned it would increase the risk of falls. I said I would prefer that for him if he could gain a level of peace even if it meant he would spend more time asleep.

The pros and cons of medication prescribed to reduce anxiety do need to be weighed against the pros and cons of a relatively peaceful existence compared with chronic anxiety and challenging behaviour.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,228
Yorkshire
hi @tryingmybest
the high level of agitation you describe was one reason why it was better for my dad to be living in a care home where there were staff to watch over him, I simply could not have coped - the agitation didn't go away, his meds were altered a few times too, but the staff learned to see the warning signs and supported him, often by simply having him somewhere quiet - and I recognise your 'even her music doesn't help'; usually his favourite jazz settled dad, but in high anxiety, it didn't get through - even tried the regular paracetomol ... no change
is it time to consider full time care ..... I could then visit dad after having slept at night so dealt with his moods more calmly, and, I'll be honest, I could leave him be if he just was overly anxious, knowing the staff would deal with him kindly
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,640
66
Toronto, Canada
I o think, like @Grannie G, that it may be time to consider medication. It may be either something with a sedative effect or an anti-psychotic. My mother was on anti-psychotics for at least 10 years. They do have to be monitored carefully but they made a world of difference for my mother.
 

myss

Registered User
Jan 14, 2018
439
The past 3 weeks especially, Mum is just so aggitated, horrendously so, and I don't know what to do. The GP just says it's a progression of her illness, prescribed an antidepressent Amitriptiline, which she's been on for 12 weeks which hasn't worked. She started a different one yesterday, Mirtazapine, as recommended by the "neighbourhood team" who have recently become involved. However, she was on that 2 years ago and it made her aggressive and she lost her mobility so came off it but they wanted to try it again, (against her GPs recommendation).
I'm a bit astounded by this - is this neighbourhood team like a memory clinic and have someone who is medically trained to dispense such medication? If they are, were they informed of the reaction your mum had to that medication?
It just seems so weird to give your mum something that previously reacted with her in a negative way and - going by what you've said - it seems to have reacted worst than before. If the GP has been in control of the medication, I would make them aware of this too. It could be that not only is the 'new' medication not ideal for your mum, that it clashes with another medication that your mother's taking.
 
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tryingmybest

Registered User
May 22, 2015
644
It sounds like a chronic state of anxiety.

There was a lady in my husband`s care home who continually rattled the front door saying `Let me out`. It was dreadfully upsetting to hear.
Apparently the staff did take her out and as soon as she was out she wanted to go back indoors again.

This lady was eventually prescribed sedation.



Do you think this would be considered for you mum @tryingmybest? I know it is frowned upon mainly because it could increase the risk of falls but your mother cannot continue like this. She seems to be in a state of continual agitation which is not fair on either her or you.

When I asked for my husband to be prescribed medication the consultant was concerned it would increase the risk of falls. I said I would prefer that for him if he could gain a level of peace even if it meant he would spend more time asleep.

The pros and cons of medication prescribed to reduce anxiety do need to be weighed against the pros and cons of a relatively peaceful existence compared with chronic anxiety and challenging behaviour.
It is dreadfully distressing for me as well as Mum. I don't really want her drugged up and off her legs in bed all day as she enjoys going out every afternoon or in the evenings and still has mobility. What life would it be fo us both then if she was like that? We've never been offered anything other than what I've said and they just say theres nothing that can be done to help so I suppose I just have to like it and lump it?
 

tryingmybest

Registered User
May 22, 2015
644
hi @tryingmybest
the high level of agitation you describe was one reason why it was better for my dad to be living in a care home where there were staff to watch over him, I simply could not have coped - the agitation didn't go away, his meds were altered a few times too, but the staff learned to see the warning signs and supported him, often by simply having him somewhere quiet - and I recognise your 'even her music doesn't help'; usually his favourite jazz settled dad, but in high anxiety, it didn't get through - even tried the regular paracetomol ... no change
is it time to consider full time care ..... I could then visit dad after having slept at night so dealt with his moods more calmly, and, I'll be honest, I could leave him be if he just was overly anxious, knowing the staff would deal with him kindly
But I don't understand what a care home could do that I can't?. She has a lovely home and garden here with me, I do her hair, nails, massages, take her out every day or evening to a variety of different things and she certainly wouldn't get all that in a care home. I appreciate what you say but all I want is something to keep Mum calm and I can't understand why it seens I'm asking the impossible.
 

tryingmybest

Registered User
May 22, 2015
644
I o think, like @Grannie G, that it may be time to consider medication. It may be either something with a sedative effect or an anti-psychotic. My mother was on anti-psychotics for at least 10 years. They do have to be monitored carefully but they made a world of difference for my mother.
But I just get told by the GP and Neighbourhood Team that there isn't anything to help with Vascular Dementia?
 

tryingmybest

Registered User
May 22, 2015
644
I'm a bit astounded by this - is this neighbourhood team like a memory clinic and have someone who is medically trained to dispense such medication? If they are, were they informed of the reaction your mum had to that medication?
It just seems so weird to give your mum something that previously reacted with her in a negative way and - going by what you've said - it seems to have reacted worst than before. If the GP has been in control of the medication, I would make them aware of this too. It could be that not only is the 'new' medication not ideal for your mum, that it clashes with another medication that your mother's taking.
The Neighbourhoid Team are a head to toe team for the elderly and after I contacted the Crisis Mental Health Team I was put onto them. They did know about her response to it before and I also contacted the GP to inform him. It seems theres always conflict between the hospital when Mums been discharged and what the GP says so I dont know which way is up anymore to be honest!!
 

Rosettastone57

Registered User
Oct 27, 2016
1,345
But I don't understand what a care home could do that I can't?. She has a lovely home and garden here with me, I do her hair, nails, massages, take her out every day or evening to a variety of different things and she certainly wouldn't get all that in a care home. I appreciate what you say but all I want is something to keep Mum calm and I can't understand why it seens I'm asking the impossible.
What can a care home do that you can't? Give you time off. Give you rest and time to refresh yourself . My mother-in-law had mixed dementia a mixture of Alzheimer's and vascular dementia and because of a high risk of falls she was not prescribed any medication because it would have made the falls possibility worse. The care home my mother-in-law was in had a full range of activities took residents out and there were enough staff to distract her so it she did not get agitated
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,640
66
Toronto, Canada
But I just get told by the GP and Neighbourhood Team that there isn't anything to help with Vascular Dementia?
These medications would not affect the disease, but but I think simply ameliorate the anxiety, agitation and disturbed moods. At the least, perhaps a mild sedative could be tried - something to be administered only when needed, perhaps. I feel that all avenues should be explored. If a drug doesn't work, it's easy to stop it. But if you don't try, you'll never know.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,228
Yorkshire
as Rosettastone57 implies
I was responding to your opening
I'm normally such a very strong and positive person but I'm worried about myself right now, as well as my Mum, who has lived with me as her sole carer for over 4 years. I have written about my situation before and this year has been just dreadful and so far there is no let up. Two hospital stays this year and apart from obviously having vascular dementia, there appears to be no medical reason Mum is like this
and that your mum's agitation is most present when you are at home
I appreciate you give your all to making your mum's life as good as it can be ..... and sadly, with extreme anxiety, there seems to be nothing that can completely take it away; at least that's how it seemed to be for my dad, nothing I could do or any combination of meds could combat his anxiety: it was heart-breaking - so, no it's doubtful anyone could do any more than you do - it's just that you sound worn down by how much you do
you have a right to a life of your own, and certainly to look after your own health and welfare - if a permanent placement isn't something you will contemplate, maybe try a spell of respite for you to have a break, or day care so you are not the one always with your mum
sedation seems like a potential answer but has a massive effect on mobility and the ability to respond which makes eg personal care physically difficult for both - dad had lorazepam as a prn and it subdued him, certainly, if administered at the right time and sadly was 'better' for him overall than the times of extreme agitation, but wasn't something I would have wanted to deal with on my own
I hope the medics find something to help your mum, it sounds as though thay are trying
 
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doodle1

Registered User
May 11, 2012
248
Is your mum on citalopram ? Great anti depressant often prescribed for anxiety and early at age dementia. Both my parents were on it . And I know anti psychotics gave a bad rep but try Risperadone . In a tiny dose .was life changing for my mum. Quality of life improved hugely. .hope this helps xx
 

tryingmybest

Registered User
May 22, 2015
644
These medications would not affect the disease, but but I think simply ameliorate the anxiety, agitation and disturbed moods. At the least, perhaps a mild sedative could be tried - something to be administered only when needed, perhaps. I feel that all avenues should be explored. If a drug doesn't work, it's easy to stop it. But if you don't try, you'll never know.
What medications do you mean though? Mums tried Amitriptiline but it made no difference and has just started Mirtazapine. They havent offered anything else other than one doctor suggested half a Lorazapam tablet but then another doctor said no as did the hospital.
 

tryingmybest

Registered User
May 22, 2015
644
as Rosettastone57 implies
I was responding to your opening

and that your mum's agitation is most present when you are at home
I appreciate you give your all to making your mum's life as good as it can be ..... and sadly, with extreme anxiety, there seems to be nothing that can completely take it away; at least that's how it seemed to be for my dad, nothing I could do or any combination of meds could combat his anxiety: it was heart-breaking - so, no it's doubtful anyone could do any more than you do - it's just that you sound worn down by how much you do
you have a right to a life of your own, and certainly to look after your own health and welfare - if a permanent placement isn't something you will contemplate, maybe try a spell of respite for you to have a break, or day care so you are not the one always with your mum
sedation seems like a potential answer but has a massive effect on mobility and the ability to respond which makes eg personal care physically difficult for both - dad had lorazepam as a prn and it subdued him, certainly, if administered at the right time and sadly was 'better' for him overall than the times of extreme agitation, but wasn't something I would have wanted to deal with on my own
I hope the medics find something to help your mum, it sounds as though thay are trying
Yes it is totally heartbreaking. Lorazapam was suggested by one doctor but then another said no as did the hospital. So many conflicting views! Like you, I certainly could not manage on my own if Mum went off her legs.

I did look into respite but they would only consider taking Mum for 2 weeks not a couple of days and aside from the fact it was £1200 I think per week, Mum would hate it and I just wouldn't do it to her. I have heard so many stories where the pwd comes back in a more confused and unsettled state too and I wouldn't relax knowing she was there. She can't speak so finds it hard to mix with people too and even if there was daycare in this area (30 miles nearest, we live very remote) she wouldn't go! I do have 2 hours off every friday when my boyfriend has a half day off work and comes and sits with Mum although half the time I don't take it and take them both out instead!!