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My care home guilt - Carers UK Forum

My care home guilt

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Hello everyone. I've only posted once before and your responses helped me a lot. I hope no one minds if I need to get some new troubles down in writing.

Since I last posted mum has become increasingly aggressive (mum has alzheimers). Her dose of respiridone was increased with minimal success if I'm honest and she was taken off respiridone all together as she had a TIA at the end of October.

Since October mum has had various combinations of memantine, lorazapam, diazapam, preglagabin and trazodone with absolutely no success.

Mum's behaviour got steadily worse as in more frequent and for longer periods. Her mental health nurse told me I could not legally keep her locked in the house with me. Mum was never left alone I hasten to add. I was there 24/7. So she was taking off to go to her mum left, right and centre. I was following every time, though on one occasion I lost her and had to call the police. Mum was found about 2 hours later. She thought it was hilarious being brought back in a police car.

On top of the taking off she became more violent and was pushing, shoving and trying to bite me, but more seriously she came at me with a knife which I wrestled off her, but then on Christmas Eve she came at me with a hammer. I have to say I was at fault. I'd been hanging a mirror and got distracted and forgot the hammer wasn't locked away. The upshot was I had to call the police and she was taken to A&E.

Mum has been on a ward since Christmas Eve. They have taken away the memantine as it was not helping and despite the risks they have reinstated respiridone, but it's not working. Mum has almost broken one nursing assistant's wrist, nearly broke a sister's finger, slapped a staff nurse across the face and theatened another nurse assistant with her walking stick. She also went for a visitor for no reason. Mum is trying to kick the ward door and the fire doors in, she's trying to force windows to escape (the ward is on the 1st floor) and guards the ward enterance to see if she can escape when anyone enters or leaves. The nursing staff admit thst mum is stronger than most of them. Security seem to be called almost daily at the moment (an emergency DOLS is in place) and I am called to go in outside of visiting hours to try to calm her. The reality is I don't mind going in, I'm there every day anyway, but I cannot calm her. The most I am able to do is to stick close so the staff do not have to 1 to 1 her.

Quite honestly I am at my wits and. We have had a best interests meeting and all the staff present said mum cannot return home. The social worker has given me a list of homes to visit, but has warned me that given her behaviour even finding an EMI nursing home willing to take mum may be difficult. The mental health nurse responsible for mum in hospital has agreed with me that it might be best to wean mum off all the drugs and to the reintroduce things gradually in case it's one of the medications is making her worse, but she said this would need to be done in a mental health unit and there are no beds available so that won't be happening.

I've been to see some homes and one potential manager is going to assess mum. She seems unphased by the behaviour I've described so that at least is hopeful. The problem lies with me. I feel so guilty doing this. I wish I could bring her home. I miss her being here. Given what has gone in I cannot believe how upset and depressed I feel that she has to go into care. I know a nursing home is needed and I know that they are not all staffed with uncaring people with evil intent yet I feel so distressed that we've come to this point. Mum is continent. She washed herself, though she's not overly keen on showering and can dress without any real problem and she is very vocal. If only her behaviour were not so extreme and unpredictable she could be here with me. I hate this disease.
Hi Amanda

My heart goes out to you so firstly I think ((((hugs)))) are in order.

Guilt is part and parcel of looking after someone with dementia; it's part and parcel of admitting that you can no longer cope alone. But change the word "guilt" to "sad" and somehow it's easier to deal with. In your heart of hearts you know that you can no longer care for your Mum as you want to, it's time for someone else to take up that burden.

When my Mum finally moved into a care home we were able to once again have that Mother/Daughter relationship which was important to both of us - someone else took care of the day to day 'dross' of caring and we were free to enjoy each other's company again. I was lucky, my Mum only became aggressive if she thought I was treating her like a child - which, of course, in a way she was.

I hope that you can find a suitable placement for her soon and that she settles in there quickly - although do expect a fair degree of resistance !
Amanda, you are not the problem, the dementia is. I just don't know how you managed to care for mum for so long. Think about asking your GP to recommend a counsellor for you to deal with your mixed emotions.
Amanda, my 92 y/o MIL with advanced dementia was never violent (though see below), but she was a persistant ''wanderer'. She wandered off - well, set off to find me, I think - from her first care home, and perpetually from her second (where she showed a sign of violence in that she struck out at the care-worker who tried to guide her back indoors again - she was heading for the road), and the outcome is that she has now, this last summer, had to be moved into a secure unit at a third care home.

Like your mum, she has a Deprivation of Liberty (DOLS) on her. It's all desperately sad, but yes, that can be the nature of the disease. Maybe, subconsciously, they are trying to 'escape' back to their 'real lives'.....feeling trapped in the dementia-web??

But my MIL was never even in the slightest as violent as your mum! (Now, she is very, very 'non-agitated' and I am so grateful - she is mildly medicated with diazepam). I agree it's utterly unthinkable you should have care of her any longer.

I know you are doing your best finding a care home that will take her, but DO pleaseY remember it's NOT actually your responsibility! You are perfectly free to 'walk away' and let SS sort things out, and you may have to do this if you cannot find, quickly, a care home to take her to get her out of hospital. (Presumably in hospital she really has to be under heavy sedation, hence the talk of mental wards.....)

It is all desperately sad, but it is the nature of the disease. Do not feel guilty, though I'm sure you will anyway - we all do. In the end, the point comes when all we can do is pray for a speedy release for them from the torment of their continued existence. Dementia is, indeed, a vile disease, but it is NOT our fault, and not the fault of its victims either.

I hope that once your mum is out of hospital and 'settled' in a good, secure care home where staff can deal firmly but compassionately with her ,that her anger will leave her, and she can 'quieten' into a calmer and less troubled soul.

Wishing you as well as possible at grim times - Jenny
Hi Amanda
The problem lies with me. I feel so guilty doing this. I wish I could bring her home. I miss her being here. Given what has gone in I cannot believe how upset and depressed I feel that she has to go into care.
Yes, definitely change the word "guilty " to "sad".
It is a very very sad situation but it is not of your making. You have done everything possible and it is not your fault the horrid disease has developed this way. You need to keep yourself safe to be able to oversee her future care, wherever that maybe. It's also not your fault that the system doesn't have suitable bed for her. How angry would you be if she had a broken hip for example but was told 'sorry we can't treat her as there's no bed' Would you feel guilty in that situation? No I think not.

If anything try turning some of the sadness into 'angry action' and also realise it is like a bereavment, a loss of how you hoped things might be. So be kind to yourself and allow yourself to feel shock, anger, grief and even moments of happiness. You are probably exhausted and try to rest and perhaps even visit the doctor to see what he can offer, even mild medication to help for a short while
Sending huge hugs ((((hugs))))
Hi Amanda
One of our forum friends, the lovely Elaine helped me to redefine the word guilt to sad. It really does help. Sometimes it's still a struggle not to let the guilt monster get to me, but I keep telling myself that my husbands dementia isn't my fault anymore than his. I really hope I'm doing my very best for him, and now, if I need to take an extra day away, I tell myself it's sad that I'm emotionally exhausted and need more time for other things, sad that it's come to it, but not guilty. Do try, it's worth it for your own well being. ((( Lots hugs)))
Hi Amanda, Nothing to add to what has been said already but just sending ((hugs)). My mum also was getting increasingly violent (yet nothing to that degree) and a nursing home was the only option. I do agree that the cocktail of drugs may not be helping matters. Let us hope that a suitable nursing home can be found. Your mum will be unaware of much of this; it is you who needs the help at the moment.

I do think that all of us whose loved ones finish their days in nursing homes carry a certain degree of guilt / sadness. However, if those loved ones were in their right minds, they certainly would not wish that upon us.

Sending you strength to get through this impossible time, Anne x
Hi Amanda, I do so empathise with you and also understand your mixed emotions. I had a degree in guilty feelings! I had an all too similar experience with my then mother in law who was violent. To cut a very long story short, she had to be admitted to a Secure EMI Unit, and this was via 2 nursing homes who could not cope/control her violent outbursts. I had suffered her violent outbursts for years, but no one believed me until she attacked a member of staff and a member of the public visiting the home. Dementia does not improve; sadly it gets steadily worse and will rob you of your life too if you allow it to. It is not the fault of your mum, yourself, or anyone else, it is the dementia. The relief I felt when she was finally admitted to the EMI registered home was so enormous, I even felt guilty about feeling relieved. Do take care of yourself. Kindest regards and good wishes. Anne
Although, yes, dementia doesn't improve, it does seem to go through 'stages'....and it could well be that as it takes increasing hold the aggression will fade away and the fight will 'go out of her'.

From what I've seen of my SIL's mother, in the end, the dementia will take over the brain so much that the patient can only lie, inert, in bed, until they are totally 'unresponsive', and then, finally, the 'life support' systems of the brain will shut down as well, and the paitient will die.

I've certainly seen my own MIL become 'uninterested' in trying to 'escape', and now she is very 'quiescent. She finds it harder to stand up, and is much slower in walking, and so on, and the net effect is that she is far more 'gentle' so to speak.

So I hope something similar happens to your mum as the dementia progresses.

It's all so, so sad.
Thank you everyone you are all very kind and it's a really good point that I should try to feel sadness, but not guilt.

Mum's violence continues. Today she assaulted another patient. The poor lady who was attacked is 93. The care home search has been halted for now as the mental health nurse says there is no home which will accept her with her current presentation. They have increased the dosage of respiridone and have put her down on the waiting list for a mental health unit bed. It's so sad.