Just appalling - re previous post Crying night after night

[tryingmybest]

I'm glad to hear your mother is nearly ready to come home, hospital is not a good environment for people with dementia (although obviously sometimes necessary). I hope the medication works during the night.

I wouldn't compare respite with a hospital stay though. Respite should be aware of her needs and have time to deal with them. My mother spent 10 days in hospital and the care assistants could not comprehend that she needed help eating and drinking, they just kept noting that she wasn't doing either despite me telling them every time I went in. They also decided she was incontinent, but actually she just needed prompting to go to the loo, and help to get there. Whereas in her care home the carers are entirely on the case with all these things and give her all the help she needs.

Sigh. Same here. 5 times shes been moved and every nurse/doctor/sister I have had to tell again and again about helping feed and prompting with drink and that shes doublely incontinent.

No, what I meant was the way she has been herself in hospital does not bode well for any respite as she cannot be away from me for a minute without getting so distressed and I have hated to see how upset shes been being away from me so I just couldn't do it to her. X

 

[Susan11]

Hi Glad your Mum is on the mend and I do hope the medication works and she will be more peaceful during the night . I wish I could wave a magic wand and make everything ok for you. If only. You are an amazing person . Always remember that.
With best wishes
Susan

 

[tryingmybest]

Hi Glad your Mum is on the mend and I do hope the medication works and she will be more peaceful during the night . I wish I could wave a magic wand and make everything ok for you. If only. You are an amazing person . Always remember that.
With best wishes
Susan

Aww bless you to say so but no, I'm no more amazing than anybody else. We are all just trying to do our best for our loved ones in this terrible situation. Thank you so much for your support Susan. Will keep you updated. Xx

 

[Sirena]

Sigh. Same here. 5 times shes been moved and every nurse/doctor/sister I have had to tell again and again about helping feed and prompting with drink and that shes doublely incontinent.

No, what I meant was the way she has been herself in hospital does not bode well for any respite as she cannot be away from me for a minute without getting so distressed and I have hated to see how upset shes been being away from me so I just couldn't do it to her. X

Oh yes I see. Fingers crossed all goes as well as possible when she's back home.

 

[Susan11]

Aww bless you to say so but no, I'm no more amazing than anybody else. We are all just trying to do our best for our loved ones in this terrible situation. Thank you so much for your support Susan. Will keep you updated. Xx

Ah the word "just " It hides a myriad of skills that you use every day. If you tried to summarise everything you do for your Mum on paper it would fill many sheets I'm sure. Whichever way you look at it she is lucky to have you .
With best wishes
Susan

 

[Kat loves milk tray]

Is there a carers support service in your area? I’m in the East of England and we have a carers support team based within the local authority.
When ny Dad was at home and my mum was caring for him she could access carers support and say for example she had a hospital appointment she could book a carer to come and sit with Dad.
It was free as well, no charge.
My mum did have a carer from a private agency visit Dad once a week to take him out but Dad had to pay for this service which cost ££18 per hour.. it just gave my mum a break .

 

[nita]

After a long chat with the OT who was happy to hear I don't need anything and that I have everything in place for Mum at home and a physio checking her mobility, holding my hand down the corridor, the are happy from their perspective to let her come home. The medical team have said there is no reason for her to be kept in as there's nothing wrong with her apart from her dementia. I'm happy to have her back home but just hope to keep her calm at night and hopefully can do this with the Lorazapan I was given last week and which they've been using in hospital. QUOTE]

I am really concerned you have said this and not asked for further help. Keep in mind how your Mum was at night before she went into hospital. Please request more help such as a sitting service so you can get out. In our area it was provided by a large care agency and was free of charge. Also, what do you do if you need help with Mum if she gets agitated again? Raise these questions and try to get some sort of help put in place if needed. I am worried about you and your Mum when she gets home. Is she over the delirium? Is that what she had at home? I would be questioning the doctor more about possible measures to put in place if the lorazepam doesn't work and a follow-up appointment with the psychiatrist once out in the community.

 

[nita]

I am really concerned you have said this and not asked for further help. Keep in mind how your Mum was at night before she went into hospital. Please request more help such as a sitting service so you can get out. In our area it was provided by a large care agency and was free of charge. Also, what do you do if you need help with Mum if she gets agitated again? Raise these questions and try to get some sort of help put in place if needed. I am worried about you and your Mum when she gets home. Is she over the delirium? Is that what she had at home? I would be questioning the doctor more about possible measures to put in place if the lorazepam doesn't work and a follow-up appointment with the psychiatrist once out in the community.

 

[tryingmybest]

Is there a carers support service in your area? I’m in the East of England and we have a carers support team based within the local authority.
When ny Dad was at home and my mum was caring for him she could access carers support and say for example she had a hospital appointment she could book a carer to come and sit with Dad.
It was free as well, no charge.
My mum did have a carer from a private agency visit Dad once a week to take him out but Dad had to pay for this service which cost ££18 per hour.. it just gave my mum a break .

Thank you for your response. There appears to be nothing in our area as we are so isolated but Im sure there must be some sort of agency where I could pay for someone to sit with Mum as she is self funding. Im loathe to do so however as I know she would hate it and I dont really want strangers in my home especially as I have lots of animals including dogs so it wouldn't be practical to be honest.

 

[tryingmybest]

I am really concerned you have said this and not asked for further help. Keep in mind how your Mum was at night before she went into hospital. Please request more help such as a sitting service so you can get out. In our area it was provided by a large care agency and was free of charge. Also, what do you do if you need help with Mum if she gets agitated again? Raise these questions and try to get some sort of help put in place if needed. I am worried about you and your Mum when she gets home. Is she over the delirium? Is that what she had at home? I would be questioning the doctor more about possible measures to put in place if the lorazepam doesn't work and a follow-up appointment with the psychiatrist once out in the community.

Ahh thank you for your concern Nita. Mum is now home, I picked her up earlier this afternoon. She's so happy to be back home and was soon escounced in her chair watching and singing along to her favourite music dvd with a banana, cuppa and shortbread. Shes been dozing the past hour. Just wonder what the night will bring I must admit being a bit worried. The psychiatrist has recommended using tbe lorazapam as and when necessary but has also suggested PRN olanzapine but just googling that I dont like the sound of it. As Ive said before there is no help in our area and the Foundation Trust that exists are not taking any referrals in this area as they have no volunteers. All I can do is hope and pray things will be ok.

 

[Susan11]

Ahh thank you for your concern Nita. Mum is now home, I picked her up earlier this afternoon. She's so happy to be back home and was soon escounced in her chair watching and singing along to her favourite music dvd with a banana, cuppa and shortbread. Shes been dozing the past hour. Just wonder what the night will bring I must admit being a bit worried. The psychiatrist has recommended using tbe lorazapam as and when necessary but has also suggested PRN olanzapine but just googling that I dont like the sound of it. As Ive said before there is no help in our area and the Foundation Trust that exists are not taking any referrals in this area as they have no volunteers. All I can do is hope and pray things will be ok.

Glad your Mum is ok. Fingers crossed for this evening . Take care
Susan

 

[nita]

Pleased to hear your Mum is happy - it does lift the heart when they seem contented and not distressed. Hopefully she is over whatever she had and will be more settled now. It is terrible that there are no services in your area. Would you ever think of moving to somewhere less remote? Hope things continue to be good and the nights are peaceful.

 

[Susan11]

Hi I was just wondering how you and your Mum were managing since she came home from hospital. I know you said she was pleased to be home . How have your evenings been? Has your Mum settled and your evenings been better than before. I know it is difficult for you to get help and have a break. And I do really hope things have improved for you . Best wishes
Susan

 

[rosy18]

I was wondering how you were doing and just read through your new thread. My heart goes out to you. I really can empathise with you although I feel very lucky that not being isolated more help was available to Mum and I. At one stage I couldn't even look at anyone without Mum becoming angry with me I had to give her my attention all the time and after a spell in hospital with a bad UTI and the doctor there telling me I couldn't continue on my own I decided to get carers at home. Mum initially hated it and made my life hell I too didn't like the" intrusion" but now would not be without them. I still don't go out very often but just to have someone to discuss Mum with I don't know how I coped for so long on my own.
Just wanted to let you know I'm thinking of you and praying that your situation has eased a little. (((Hugs)))xx

 

[la lucia]

Thank you for your response. There appears to be nothing in our area as we are so isolated but Im sure there must be some sort of agency where I could pay for someone to sit with Mum as she is self funding. Im loathe to do so however as I know she would hate it and I dont really want strangers in my home especially as I have lots of animals including dogs so it wouldn't be practical to be honest.

Hi,

I'm amazed that no-one has suggested the Community Mental Health Team. Google for your local team and try and make an urgent appointment for a home visit. Most CMHTs let you self-refer but if not get the GP to make an urgent referral.

Meanwhile, assemble everything, keep notes, maybe a daily diary, and be prepared to make your case. It's common to have agitation problems with dementia and these can be addressed with the right medication. They may send a psychiatric nurse first to assess your mum.

My mum is on Mirtazipine after hellish nights waking up half hourly throughout the night. This is NOT a sleep problem. The Mirtazipine works well but it doesn't work for everyone. Solutions take trial and error and patience. (And a supportive team).

My mum used to push all the furniture against the windows, bulldog clip the curtains, you name it. I never thought it would be solved.

She sleeps like a baby now. I hope you get some help.

 

[Susan11]

Hi Just a note to say Hello, I'm thinking of you and hope all is well.
Best wishes
Susan

 

[tryingmybest]

UPDATE........Thank you for your recent messages and I'm sorry not to have updated again before now, but since Mum came back out of hospital life has been hell to be honest!! I don't know where to turn or what to do to help Mum.

After the initial euphoroia of being home last thursday, Mum became extremely sleepy and difficult, refusing tablets/food/drink and wouldn't let me take her to the toilet nor go to bed and became quite aggressive. I gave her 1/2 1mg of lorazapam and managed to get her to bed. She slept all night and first thing, I managed to rouse her for her tablets and a drink of water, but had terrible trouble trying to get her through to the toilet to clean her up and put her in fresh pullups as she could hardly walk. I then put her back to bed and for the rest of the day she refused drink or food as she would open her eyes for a few seconds then fall asleep again. This went on for 22 hours in total and so I called 111 who said she should go back into hospital as a failed discharge, but also agreed with me, a hospital admittance would not be good for her and as they had previously been unable to find anything wrong, there was little point so she wasn't readmitted. She rallied round a little in the evening and drank 1/2 cupa of tea and a 1/4 sandwich. She then becane quite anxious and regained her strength enough to repeatedly bang up and down the landing on her frame sobbing and wailing half the night. I did not give her another lorazapam and eventually she settled and went back to sleep in the early hours.

Strangely enough, I had a late night call from a gp from the surgery asking how Mum was as she had seen Mum had been admitted. This was the gp who had told me not to give Mum the lorazapam and had prescribed mementine when I understood that was for Alzheimers or mixed dementia and shouldn't be given to someone with just vascular? She kept trying to tell me it was ok and to give it to her and that she didn't think Mum had vascular dementia (despite having the recent hospital ct scan and notes in front of her - I despair)! She also told me a dementia nurse was soon to be appointed to the surgery so I would now get some support but I've since found out from the practise manager that was incorrect, it's just a one off workshop!

The following day I managed to get Mum up and showered her and get her downstairs but all she ate was a bit of banana. I took her temperature and blood pressure several times and as they were low, I called 111 for advice. They sent the oncall doctor out who couldn't find anything wrong (and typically by which time her tempetature and BP was ok). She advised not to use Lorazapam nor give Mum the BP tablets she had been prescribed.

The following day Mum was again very quiet and refused food/drink and tablets. That night was again, very disruptive and upsetting with her crying and screaming she wanted to die and throwing her frame about.

The following day, I had a call from the Crisis Response Team who the gp had contacted and they came at lunchtime to see Mum and I. They were there about 1.5 hours and whilst very nice and friendly, didnt seem to think there was anything they could do. They suggested Risperidone or Memantine and again, I confirmed Mum had Vascular dementia not Alzheimers but they seemed to think they can be used for either which I find very worrying as clearly they can't. They said they would speak to a consultant and get back to me.

Yesterday, again Mum was quiet and complaining of headaches and refused food but drank a little. I took her out in the afternoon to the river for a coffee and cake as it was a lovely day but she kept falling asleep, then asked to go home. Last night she just kept crying and wailing. I didn't get any sleep at all and then around 5am she struggled out of bed and had explosive diarrhoea. Where does it come from? Shes not eating!

In desperation after her again seeming very unwell and tearful, I spoke to a gp and got an appointment for this afternoon. Previously, I have not liked this particular chap before but I think he could see how upset and at the end of my tether I am and he was very kind. He noted from the discharge notes Mums vitamin D levels were low, which could be why she's so very tired, so prescribed a once weekly high dose. He also suggested Amitriptaline to lift Mums mood, which also when given at night, should help her to sleep. However since getting it home I see it shouldn't be given if the patient has a tyroid problem so I haven't given it to Mum tonight and will check tomorrow with him. He had not, as yet got notes from the Crisis Team but said he will be questioning the logic of prescribing Mum Alzheimers drugs abd was not at all happy. He said to make another appointment in a month but overall seemed to think all this is a decline in Mums dementia.

I don't know how to go on should the situation not improve. I can't bear to see Mum so distressed and constantly crying and saying she wants to die and my being unable to calm her. I can't take much more of the upsetting and sleepless nights. All in all it's a never ending nightmare and I'm powerless to do anything about it. My poor Mum.

 

[Amy in the US]

Oh, that's so terrible. I am sorry for what you're both going through. I agree you can't go on like this much longer.

One thought about the explosive diarrhea, when she hasn't been eating. I wonder if she could be severely constipated and what happened was overflow diarrhea. Maybe they checked for that in hospital, maybe not, but I have read about it on TP. Constipation could cause behavior changes.

I also wonder if there could be something like a blood pressure issue and/or hospital induced delirium.

I don't feel any of this is terribly helpful. I am sorry. I hope you will keep posting, and that someone else will have better suggestions for you.

 

[tryingmybest]

Oh, that's so terrible. I am sorry for what you're both going through. I agree you can't go on like this much longer.

One thought about the explosive diarrhea, when she hasn't been eating. I wonder if she could be severely constipated and what happened was overflow diarrhea. Maybe they checked for that in hospital, maybe not, but I have read about it on TP. Constipation could cause behavior changes.

I also wonder if there could be something like a blood pressure issue and/or hospital induced delirium.

I don't feel any of this is terribly helpful. I am sorry. I hope you will keep posting, and that someone else will have better suggestions for you.

Thank you for your thoughts. I'm wondering if her recent headaches and diarrhoea are due to side effects of coming off Meptid as the doctor said not to give her that anymore? I sadly think however, as the doctor suggested yesterday, this is just the new norm, with Mum having slipped further into this horrid disease. I think I just need to get my head round this fact and get a grip and not keep crying and hoping someone can do domething to help her, as they clearly can't. All I can do is pray for strength and just keep on trying my best to make Mum as comfortable as I can. I'm thinking as she's now sleeping so much and hardly eating anything now, this may well be the end stage?

 

[Susan11]

Thank you for your thoughts. I'm wondering if her recent headaches and diarrhoea are due to side effects of coming off Meptid as the doctor said not to give her that anymore? I sadly think however, as the doctor suggested yesterday, this is just the new norm, with Mum having slipped further into this horrid disease. I think I just need to get my head round this fact and get a grip and not keep crying and hoping someone can do domething to help her, as they clearly can't. All I can do is pray for strength and just keep on trying my best to make Mum as comfortable as I can. I'm thinking as she's now sleeping so much and hardly eating anything now, this may well be the end stage?

Hi I read your message earlier and wanted to respond to you to show support and that I am thinking of you but i really didn't know what to say that would help you. You are having such a difficult time. I'm sure you will find the strength to help your Mum through this difficult time . You have shown such strength so far. There seems to be a lot of confusion over which drugs she should take which can't be helping you. It might be worth contacting the sympathetic Dr again as he may have more information now. I hope you get some peace tonight . Susan