My Mother has had Dementia for 10 years she is now late stages, she is 70. I am her main carer and have moved in to live with her 10 months ago because she could not manage alone anymore. I have been managing my best (with the help of a carer I get 47 hours help a week)however the past few months my Mum's night meds had just stopped working and she is awake most nights screaming and shouting. The last few weeks with the lack of sleep have been unbearable and having a 4 month old also to look after I am struggling to say the least. 2 weeks ago Mum had a water infection and took i turn for the worse completley hallucinating, I thought the shouting and screaming and hallucinations may go after the infection cleared but she is just the same. I asked the Doctor to give me something strong to help her sleep at night and to calm her down but nothing seems to work - she is on Diazepan 10mg, Donepezil 10mg, Zopliclone 7.5, and now Lorezepan 0.5mg the week of the infection I had the out of hours doctor out every night but there was nothing they could do my predicament was if they took mum to hospital she would not have been cared for on the ward properly they could not look after her (the doctor agreed adn told me to try keep her home), after weeks of not sleeping I gave in last Friday and they had a bed available on the Old persons mental health ward (I was assured she would be assessed and her medication sorted out) however by the sunday I removed her from the Ward as all they done was just drug her up to calm her -she couldnt speak most of the time i visited and I witnessed the 1 member of staff 'snapping' at my Mother and 'snatching the curtain off her, my mums carer also witnessed tablets being shoved in my mums mouth whilst she was sedated. So even though I needed my mum to be in hospital to be assessed I just could not leave her there with what I saw. Now I am left in the situation that I am still struggling at home and things are getting worse by the day, she is now basically shouting all day long abd banging smashing things, refusing to take her meds, she wont allow me or the carer to wash or shower her and she is now messing herself and tonight she thought the chair was the toilet and walked it all through the house (so I have spent have the night bleaching everything), and the worse is the no sleep it is now 3.30am and another night of no sleep she is still shouting I have had to come up to bed now and leave her downstairs shouting (garanteed by the time she falls to sleep at maybe 6 or 7 am the baby will then wake up). I have found a home for respite with a bed available they are coming to assess my mum tomorrow and they said they could possibly take her friday (I hope so), im about to have a breakdown and just wondered how long this screaming and shouting will last? I just want her calm again and sleeping but nothing is working and i dont know what to to?
Im about to have a breakdown
- Thread starter Maria'sDaughter
- Start date
Your first duty is to your little baby which means looking after yourself too. This illness has taken your Mum already and you have clearly done your very best. Don't allow Mum' s illness to destroy you too. As you will see from other entries onTP carers suffer from guilt because they are confronted with the impossible every day and are constantly seeking whatever will make their loved one whole again. It is not going to happen. When you are rested and can be objective you will be able to view things better. This is going to mean some respite for you and your Mum. Try not to solve everything by yourself - we are just ordinary mortals.
I will think about you and your wee one and send you my best wishes.
I will think about you and your wee one and send you my best wishes.
let's get this into perspective
You are an absolute star - you moved in to look after your mother ten months ago since then you've coped with the last two trimesters of pregnancy, childbirth, a new baby, a decline in your mother's health and you are still cleaning up and caring night and day after day and night.
I hope and pray that the respite comes through on Friday. You deserve it and so does your little one.
a big hug from
eomr
You are an absolute star - you moved in to look after your mother ten months ago since then you've coped with the last two trimesters of pregnancy, childbirth, a new baby, a decline in your mother's health and you are still cleaning up and caring night and day after day and night.
I hope and pray that the respite comes through on Friday. You deserve it and so does your little one.
a big hug from
eomr
Hi Maria'sDaughter. I understand what you are going through including about having to clean up mess which has been walked through the house. That has happened in our house so many times. I invested in a carpet washer. They are pretty good and it has helped a lot. I agree that the baby's interests should come first. Could your mum not go into a home? Hugs.x.
Wow Maria's Daughter you've got so much going on! More than any one person could cope with and for so long. I really hope the assessment goes well and your mum is able to go into respite care on Friday. In the meantime, please take care of yourself and your baby - try and rest whenever you can and seek help from your doctor or social services. Is there any other family or trusted friend who can help out, either with your mum or the baby for an hour or two? Those first few months with a new baby are challenging enough without dementia thrown into the mix so please ask for and take all the help you can. Sending you big hugs.
Florrie x
Florrie x
I do feel for you. You have selflessly given yourself to your mum. I agree the care in the hospital was well below what you should expect and I can certainly see why you removed her. In my experience care homes are much better at caring. I would advise you to get on to social services first thing on Monday morning and ask for some respite care urgently and I would honestly look to make that permanent. Carer breakdown is serious and you have a baby to look after, that is exhausting enough without all the added extra you are having to do. I wish you good luck and hope that social services find a fabulous place for your mum.
What a terrible time you are having. You have been an absolute star caring for your mum for for so long. However your own physical and emotional well being must be your priority now, not just for your sake but your young baby who will be totally dependent on you for years to come.
I feel I missed so much of my children's young lives due to caring for my dad who was terribly ill for the last two years of his life (not dementia), followed by his twin brother who immediately took poorly after my father died and declined over the next 4 years. Looking back I feel quite bitter at not being able to fully enjoy this precious time with my children and having to send them to crèche and nursery so early to fit in with my caring roles. Do not make the same mistake! The time has come to put yourself and your baby first.
I feel I missed so much of my children's young lives due to caring for my dad who was terribly ill for the last two years of his life (not dementia), followed by his twin brother who immediately took poorly after my father died and declined over the next 4 years. Looking back I feel quite bitter at not being able to fully enjoy this precious time with my children and having to send them to crèche and nursery so early to fit in with my caring roles. Do not make the same mistake! The time has come to put yourself and your baby first.
How terrible for you. Sometimes though medication is the only answer. I presume they had her on an anti-physchotic in the hospital and, while you hated seeing your Mum drugged up, you clearly can't look after her the way she is either and a home may well have to medicate her to cope as well. Sometimes it the lesser of 2 evils.
My Mum was put on these in order for her to be able to stay in her supported living and really it was that or a mental assessment ward because at the time she was very agitated and shouting and banging and disturbing the other residents. So I know how hard it can be to see them drugged up but what is the choice faced with a highly distressed sufferer? Now she has moved to nursing care and is off the meds and is relatively calm. So it can be a phase that they go through.
I hope you get sorted. I can't imagine how you are coping.
My Mum was put on these in order for her to be able to stay in her supported living and really it was that or a mental assessment ward because at the time she was very agitated and shouting and banging and disturbing the other residents. So I know how hard it can be to see them drugged up but what is the choice faced with a highly distressed sufferer? Now she has moved to nursing care and is off the meds and is relatively calm. So it can be a phase that they go through.
I hope you get sorted. I can't imagine how you are coping.
thank you for all your kind words. My Mum went into respite so I have managed to get a little rest. She is only in until tomorrow morning then back to it all again. Meeting with the consultant on wednesday, I think it is best she go to be assessed again certainly if she hasnt calmed down, I just feel so bad. Thank you for all your support and kind words
Hiya,
Just a thought...
Does your mum finally fall asleep around the same time each morning? If so, it could be worth discussing with the consultant whether you can change the timing of the medication to see if she goes to sleep earlier. In addition ask the consultant about giving the medication covertly. Stick it in her food, or if it is available in liquid form, then in a drink. Another thing to ask about is the Aricept. It sent my mother into orbit. Shouting screaming, thumping folks, you name it. She had hallucinations too. They changed her on to respiridone and memantine (ebixa) patches. She was a different person, happy smiling sweet lady. Better than she'd been ore-dementia! LOL. It just goes to show that not all drugs as suitable for everyone, so it is worth asking the consultant. Sometimes you just have to stop and start over again.
I am disturbed by someone telling you to keep mum at home because THEY couldn't cope with her. Please don't be walked over...it is emotional blackmail. They have numerous staff and it is better for you to watch her single handedly. That's before you take into consideration the baby! Yes it might be better for her to be at home, but I would want some compensation. I would talk hygiene, especially with a baby, so where is the cleaners? Quite easy for them to arrange. Did they get you a commode? Pads? Wipes? You just don't know where your mum is touching, especially if her hygiene is getting worse. Remember, they will suck the energy our of you BUT as long as I is cheaper than residential care, they should make funds available to get you the extra help.
As to assessment, you don't need a hospital for this, they can do this in day care, which you might prefer. It would give you a few hours to yourself too.
Please also talk to the care home where she has been for respite. Tell them you want the truth. Their observations, suggestions, things that worked/didn't work. They can be very helpful and might inform your visit to the consultant on Wednesday.
Fiona
Just a thought...
Does your mum finally fall asleep around the same time each morning? If so, it could be worth discussing with the consultant whether you can change the timing of the medication to see if she goes to sleep earlier. In addition ask the consultant about giving the medication covertly. Stick it in her food, or if it is available in liquid form, then in a drink. Another thing to ask about is the Aricept. It sent my mother into orbit. Shouting screaming, thumping folks, you name it. She had hallucinations too. They changed her on to respiridone and memantine (ebixa) patches. She was a different person, happy smiling sweet lady. Better than she'd been ore-dementia! LOL. It just goes to show that not all drugs as suitable for everyone, so it is worth asking the consultant. Sometimes you just have to stop and start over again.
I am disturbed by someone telling you to keep mum at home because THEY couldn't cope with her. Please don't be walked over...it is emotional blackmail. They have numerous staff and it is better for you to watch her single handedly. That's before you take into consideration the baby! Yes it might be better for her to be at home, but I would want some compensation. I would talk hygiene, especially with a baby, so where is the cleaners? Quite easy for them to arrange. Did they get you a commode? Pads? Wipes? You just don't know where your mum is touching, especially if her hygiene is getting worse. Remember, they will suck the energy our of you BUT as long as I is cheaper than residential care, they should make funds available to get you the extra help.
As to assessment, you don't need a hospital for this, they can do this in day care, which you might prefer. It would give you a few hours to yourself too.
Please also talk to the care home where she has been for respite. Tell them you want the truth. Their observations, suggestions, things that worked/didn't work. They can be very helpful and might inform your visit to the consultant on Wednesday.
Fiona
You have done so well but there does come a point where you can do no more as a human being, you have your baby which is a full time job in itself and mum sounds like she needs 24 hour care. My mum fell apart when my dad became doubly incontinent, he would go everywhere, strip off, play with it etc etc and it was just too much.....he went in for respite with the aim of it becoming permanent and has settled. Mum has come off her bp medication and has her life back, we visit dad regularly but accept he could just not get the care he needed at home as he was roaming around, climbing through windows and alsorts....I hope you get things sorted, settled, it is sooo hard......
It sounds very much like it's time for her to be in residential care permanently and that you spend some time focussed on your baby. You can't do it all, and you aren't expected to do it all. Try not to get guilt ridden by it, but your mum needs alot more care than one can provide at home by the sounds of things.
Think about your baby first, and the impact of all this shouting and screaming on your innocent little bub. You've done an amazing job of trying to keep mum at home for so long now, but now it's time to prioritise your baby and your own mental health. You need to be there for your child for many many years to come, you can't sacrifice your own health for your mum to stay at home when she is clearly unhappy and unsettled at home. Sometimes, you have to make the best call in a bad situation.
Think about your baby first, and the impact of all this shouting and screaming on your innocent little bub. You've done an amazing job of trying to keep mum at home for so long now, but now it's time to prioritise your baby and your own mental health. You need to be there for your child for many many years to come, you can't sacrifice your own health for your mum to stay at home when she is clearly unhappy and unsettled at home. Sometimes, you have to make the best call in a bad situation.
Hi Fifimo,
thank you I found this quite helpful. Mum falls asleep all different time so Im not sure that giving her the tablets at different times will work, plus now the last week she has difficulty taking any tablets at all and has refused the last 2 days. She came out of the Respite home yesterday they were wonderful, I did ask them and they said I should try and get my Mum back in for assessment and to have her medication sorted, they said she upset all the other residents and was pulling all the decorations down. Apparently I am stuck as to where the assessments take place I asked and was told only the same Hospital I removed her from and it is difficult to get a bed there. As sonn as mum came home she started the ranting and shouting again and I called the Social worker and she managed to get Mum a bed there last night (I have since last week made a formal complaint). I have a meeting with the consultant in the morning and im going to ask for the ebixa patch (I didnt know they do anything in patch form) she had been having terrible trouble taking tablets lately that she is now just refusing. When you mentioned cleaners, will the Social services pay for cleaners? As it is I basically dont stop cleaning, bleaching and sanitising everything I must admit I am a little OCD about it anyway, since giving birth I am neurotic about sanitation but Mums accidents are making things harder. And no I was not offered any comodes, wipes, ect? I will mention it at the meeting in the morning. It seems if you do not ask they are not forthcoming with the information.
Thank you for your reply
Hi, I was told my Mum could not be assessed in the day centre as there were no places for her (Mum is still on a waiting list). She is in Hospital now and meeting witht he consultant tomorrow ?
thank you for your reply
If you don't ask you don't get. Your mum might be entitled to a home help especially if she is messing all over the house. Lay it on thick about risk to the baby as you don't know where she has touched etc. it is cheaper for them to do this than the alternative cost which is residential care!
Don't give up. Keep pressing for the things you and your mum need. Oh and don't take your mum home this time until they have sorted her meds out. Just so you know, what tends to happen in these places is they start someone on medication and in the beginning it can look like they are heavily sedated, but that is like a starting point and they then alter the dose or if they notice bad side effects they might stop and try something else. An assessment can take 6 weeks to complete. I know it is not the most pleasant of places but sometimes they are the best place for the person to be in at that time. I am not excusing them, you did the right thing in mining. Maybe next time they will think twice about how they treat her!
Fiona
Don't give up. Keep pressing for the things you and your mum need. Oh and don't take your mum home this time until they have sorted her meds out. Just so you know, what tends to happen in these places is they start someone on medication and in the beginning it can look like they are heavily sedated, but that is like a starting point and they then alter the dose or if they notice bad side effects they might stop and try something else. An assessment can take 6 weeks to complete. I know it is not the most pleasant of places but sometimes they are the best place for the person to be in at that time. I am not excusing them, you did the right thing in mining. Maybe next time they will think twice about how they treat her!
Fiona
I agree with Fifimo - let your mum stay there no matter how hard it is. There are just some situations where you can do no more and hopefully you see that now. We all want to protect our Mums. With mine now in a nursing home, and not happy there, I just have to try and emotionally detach from her and I tell myself I did all I could.
It's so lucky you got another place. Sometimes the only way of getting meds sorted is to be to be under observation 24/7. But what about dropping in casually at different times and keep making them aware of any ill-treatment. There's no excuse for them snapping or snatching. If they think you are keeping a watchful eye they'll be more likely to treat her well.
It's so lucky you got another place. Sometimes the only way of getting meds sorted is to be to be under observation 24/7. But what about dropping in casually at different times and keep making them aware of any ill-treatment. There's no excuse for them snapping or snatching. If they think you are keeping a watchful eye they'll be more likely to treat her well.
