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Night time problems

Steen

New member
Aug 1, 2020
7
Hello
My Mum (92 with vascular dementia) lives with my husband and myself. She fell and broke her hip approximately 6 weeks ago. This has been pinned and she is recovering remarkably well. After hospital she went to a rehab unit to assess her mobility. Upon her return home to us I was told not to allow her to move around unaided. They left me a rotunda and sensors and all manner of things that beep! All these things are well and good but do not address the problems we now face. I was told my mum would need a downstairs existence (we were in the process of having a stair lift fitted when she fell) and so we converted our living room into a bedroom leaving us without a room in which to relax in the evenings apart from our bedroom which is upstairs. I am waiting fora knee operation and I find it difficult to climb stairs quickly. To protect mum I have been staying downstairs in our dining room which has doors off to the kitchen and upstairs and front room where mum is. My husband is upstairs in our bedroom. Mum has stopped sleeping at night at all I cannot sleep or leave her alone for fear she will fall. This was given to me as a concern by social services and the physios. So for the last four nights I have sat up all night and literally watched over her as she sits on the side of her bed and talks to god. Any discussions with her about going back to bed result in my being told in no uncertain terms that she will do exactly as she pleases. I have explained until I am blue in the face but as we all know this rarely helps. She becomes aggressive and or upset and distressed. So I am trying to grab a couple of hours during the day (not always possible) and trying to work out the best course of action. Mum is adamant she will not go into care and this is not something I would be happy to do, but this situation is no sustainable. I was thinking of looking into night carers and wondered if anyone had any experience of this. Many thanks
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,827
Kent
Hello @Steen Welcome to Dementia Talking Point.

Your mum would not be able to do `exactly as she pleases` without your sacrifice. It is up to you whether or not you are prepared to continue living like this indefinitely.

Personally I feel you are going over and above the call of family loyalty but you are the only one who can decide. There are times when we are all called to make painful decisions.
 

Louise7

Registered User
Mar 25, 2016
2,395
Hello @Steen welcome to the forum and sorry to hear that you are having such a difficult time. It's not clear from your post, but has your mum not been sleeping at night since she returned home, or was she sleeping initially and this is something that has happened more recently? A sudden change in behaviour could be caused by various things but as your mum has recently broken her hip her inability to sleep, coupled with upset, distress and agression, may be pain related and she could be finding it uncomfortable to lay down. Is she on any pain medication at the moment? I'd suggest a chat with the GP to explain what has been happening and see if they will consider some pain relief, or an increase in the current dosage if she is already receiving this, to see if it helps. As you point out, this situation is not sustainable but it's worth ruling out any obvious causes for the sudden change in behaviour, plus the GP may be able to prescribe something to help your mum settle/sleep at night if pain is ruled out. We had a similar situation with mum, she was very agitated/distressed and would not sleep at night following a fall, but pain relief made a huge difference so it's worth considering this.
 

Steen

New member
Aug 1, 2020
7
Hello @Steen Welcome to Dementia Talking Point.

Your mum would not be able to do `exactly as she pleases` without your sacrifice. It is up to you whether or not you are prepared to continue living like this indefinitely.

Personally I feel you are going over and above the call of family loyalty but you are the only one who can decide. There are times when we are all called to make painful decisions.
Thank you for your honest input, sometimes a shot if the truth is what we need to enable us to evaluate matters.
 

Steen

New member
Aug 1, 2020
7
Hello @Steen welcome to the forum and sorry to hear that you are having such a difficult time. It's not clear from your post, but has your mum not been sleeping at night since she returned home, or was she sleeping initially and this is something that has happened more recently? A sudden change in behaviour could be caused by various things but as your mum has recently broken her hip her inability to sleep, coupled with upset, distress and agression, may be pain related and she could be finding it uncomfortable to lay down. Is she on any pain medication at the moment? I'd suggest a chat with the GP to explain what has been happening and see if they will consider some pain relief, or an increase in the current dosage if she is already receiving this, to see if it helps. As you point out, this situation is not sustainable but it's worth ruling out any obvious causes for the sudden change in behaviour, plus the GP may be able to prescribe something to help your mum settle/sleep at night if pain is ruled out. We had a similar situation with mum, she was very agitated/distressed and would not sleep at night following a fall, but pain relief made a huge difference so it's worth considering this.
Hi there. Thank you. Mums sleeping problem has got worse since her fall. She is on pain relief and never says she is in pain - and she would! I think though you are right and a call to her (very good!) GP is the first port of call.
 

Rosettastone57

Registered User
Oct 27, 2016
1,354
Hello
My Mum (92 with vascular dementia) lives with my husband and myself. She fell and broke her hip approximately 6 weeks ago. This has been pinned and she is recovering remarkably well. After hospital she went to a rehab unit to assess her mobility. Upon her return home to us I was told not to allow her to move around unaided. They left me a rotunda and sensors and all manner of things that beep! All these things are well and good but do not address the problems we now face. I was told my mum would need a downstairs existence (we were in the process of having a stair lift fitted when she fell) and so we converted our living room into a bedroom leaving us without a room in which to relax in the evenings apart from our bedroom which is upstairs. I am waiting fora knee operation and I find it difficult to climb stairs quickly. To protect mum I have been staying downstairs in our dining room which has doors off to the kitchen and upstairs and front room where mum is. My husband is upstairs in our bedroom. Mum has stopped sleeping at night at all I cannot sleep or leave her alone for fear she will fall. This was given to me as a concern by social services and the physios. So for the last four nights I have sat up all night and literally watched over her as she sits on the side of her bed and talks to god. Any discussions with her about going back to bed result in my being told in no uncertain terms that she will do exactly as she pleases. I have explained until I am blue in the face but as we all know this rarely helps. She becomes aggressive and or upset and distressed. So I am trying to grab a couple of hours during the day (not always possible) and trying to work out the best course of action. Mum is adamant she will not go into care and this is not something I would be happy to do, but this situation is no sustainable. I was thinking of looking into night carers and wondered if anyone had any experience of this. Many thanks
The care agency my mother in law used had night time carers on an adhoc basis which was £250 a night. That was in 2018 and it was more at weekends and if the carer was constantly disturbed. However there comes a point where the person with dementia's needs outweigh what they want to happen . Personally I think you have now reached that point. It's a difficult decision, but I think your mum would benefit from 24/7 supervision in a care home setting
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,774
Nottinghamshire
Hello @Steen and welcome from me too,

I agree that it’s probably time to consider moving your mum into a carehome where she’ll be looked after by people who are trained for the job and get to go home at the end of a shift. You can’t carry on with no sleep and I know, from personal experience, how disabling knee problems are as I had serious problems with my knees while I was caring for my dad.

Your mum isn’t the only person who deserves consideration - you and your husband need a better quality of life than you have at the moment. Can you carry on like this without becoming ill?
 

Steen

New member
Aug 1, 2020
7
The care agency my mother in law used had night time carers on an adhoc basis which was £250 a night. That was in 2018 and it was more at weekends and if the carer was constantly disturbed. However there comes a point where the person with dementia's needs outweigh what they want to happen . Personally I think you have now reached that point. It's a difficult decision, but I think your mum would benefit from 24/7 supervision in a care home setting
 

Steen

New member
Aug 1, 2020
7
Hi there thank you. Wow that's certainly a lot of money. I agree with your view that their needs eventually out weigh their desires, I had hoped we would have longer - its too soon for both of us. However, I am very grateful for your input and agree that the situation does need to be reconsidered.
 

Steen

New member
Aug 1, 2020
7
Hello @Steen and welcome from me too,

I agree that it’s probably time to consider moving your mum into a carehome where she’ll be looked after by people who are trained for the job and get to go home at the end of a shift. You can’t carry on with no sleep and I know, from personal experience, how disabling knee problems are as I had serious problems with my knees while I was caring for my dad.

Your mum isn’t the only person who deserves consideration - you and your husband need a better quality of life than you have at the moment. Can you carry on like this without becoming ill?
 

Steen

New member
Aug 1, 2020
7
Thank you for your measured response. I think we are all guilty of not putting ourselves first - or even second! As for my husband he is wonderful, but we all have our limits and on reflection the carehome may be the only fair, safe and sensible option for all concerned. Chris
 

Spanielgirl

New member
Jan 10, 2019
9
Thank you for your measured response. I think we are all guilty of not putting ourselves first - or even second! As for my husband he is wonderful, but we all have our limits and on reflection the carehome may be the only fair, safe and sensible option for all concerned. Chris
 

Spanielgirl

New member
Jan 10, 2019
9
Hello, I’m sorry to hear of the dreadful dilemma that you are faced with, but can I just say don’t be too hasty with making the Care Home decision, where there’s a will there’s a way ! I’ve been on this great big roller coaster ride for 8 yrs, both parents with Alzheimer’s, Father no longer with us. I made the decision that he went into a local Care Home. Social Services were involved as Mother being a vulnerable person was at risk ( he ticked every box for domestic abuse in their 66 yr marriage, that we could never proof ). Despite SS knowing this and insisting that he returned home and me saying no way as we couldn’t cope with one let alone two with Alzheimer’s , I made the ultimate decision and he went into a home.. It was a big and very expensive eye opener, fortunately his savings covered his care. Nearing his death I decided to put Mother into the same home to be near him and give us some Rest bite care. It didn’t work out as I’d hoped, her needs were not met and she did not see him frequently, within a week she looked a shadow of her former self and so I hastily brought her home to the place and faces familiar to her. She will never leave her home again. As a family and with carers coming in, we work tirelessly to fight the challenges of this dreadful disease that has no dignity. I’m no longer the greatest fan of any professional, there is no expert or text people that can tell you how to ride this big roller coaster, it takes guts , determination and a lot of common sense.
 

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