Totally Confused What to do

[MollyMae23]

My mum fell over four weeks ago breaking a femur. I still can't understand what happened because I was literally only away from her for a few minutes whilst I turned down her bed and she went to the loo but it did.

Now she has been in two hospitals ever since, the first for the immediate treatment of the injury (an op) and then the last two weeks in a rehab hospital even further away.

The family were called into a meeting last Wednesday to discuss what happens next. The general advice was that they were unable to progress properly with physiotherapy because she wasn't confident enough. The hospital therefore advised that because the result of the fall had shortened her leg and the arthritis in the hip on the same side was chronic but inoperable (she is 91 years old) they though she would be safer in a nursing home. This was devastating for us all as we wanted mum to have her last years with family, namely me but we understood what was being said and wanted to ensure we made a decision in her best interests. So off we went prepared to research and assess any nursing home which social services advised us of.

However, social services have now said they want to challenge some of the medical information and are talking about options for her to return home to me. Great I thought until I realised that part of this plan would be for me, (with no assistance as the rest of my family live miles away) turning her every 2 hours during the night and then receiving four care visits throughout the day. This has started to panic me because I do not want to stop her coming home but this plan just isn't sustainable, sleep deprivation is hardly going to help me care for her during the day.

Pondering this I then met a professional dementia carer on the ward who my brother had been chatting with when he last visited. She told me that if dementia patients go into nursing homes it kills them because of the shock. My neighbour also was telling me how she had been thinking about her mum's future as she has an aneurism. She said she would never contemplate putting into a care home.

So I am left racking my brains trying to find a solution. Because of the sever mobility problems mum will have due to the hip and fracture I can't possibly risk being below par when helping her during the day but equally I can't leave her lying in bed all night without regular turns. So, this points to a nursing home, but as she has been getting more and more confused since being in hospital which I guess might improve in familiar surroundings am I subjecting her to accelerated decline and demise.

I am expecting social services to conduct a mental awareness test next week with mum which is likely, in her present state result in the power of attorney I hold to come into play but this is proving to be one of the hardest decisions I have had to make and there doesn't seem to be anyone who can give real advice.

Has anyone else face this sort of decision?

 

[Nebiroth]

First, don't feel guilty about your mum fracturing a hip. Elderly people and espescially women (because of osteoporosis, which affects women much more than men; this is where the bones become thinner and less dense, this happens in everyone as they age, but osteoporosis is a severe form and many people do not know they have it ) can fracture a hip with astonishing ease. It does not even need to be a fall, sometimes the slightest little thing can lead to a fracture, particularly if it is the sort where the vall part of the bone cracks off; fractures can be caused by a simple twisting movement.

Second, do not panic. You are not obliged to carry out any sort of care for your mum that you do not want to or feel you can't do. You just need to make it clear that you are unwilling or unable to turn your mum every two hours, or that you can only do it for part of the day, etc. In that case, the care plan has to take account of that and be adjusted accordingly. However, it is possible that this will increase the pressure for your mum to be in a nursing home as obviously, providing home carers or nursing care to do it might be more expensive or seen as impractical.

Lastly, I am utterly shocked and horrified that a "professional dementia carer" should make such a comment.

It is simply not true. There have been many stories on here where persons with dementia have entered residential or nursing care with success and have had considerable improvements in their health

Unfortunately, some people with dementia are unsettled and this can in turn be distressing for their relatives. Also, keep in mind that some people with dementia who go into nursing homes are of very advanced years and with considerable health problems, and sadly, it is quite likely that they would have passed away anyway.

Also, general anaesthetics, the shock of injury and surgery, being in hospital with a change of routine, place and people will all combine and amplify the symptoms of dementia.

 

[Mun]

I am by no means an expert,but my first reaction,like Nebiroth, on reading what the "professional dementia carer" had said to you,MollyMae,was of shock,disbelief & scaremongering.

 

[AnoviceinN1]

Pressure relief mattresses

I agree with Nebiroth's comments and so I won't add anything with regard to the decision for or against a NH. I would like to add that the NH my MIL was in was turning every two hours in the night until we bought her a specialist pressure relief mattress to help prevent bed sores, which made it unnecessary to turn her so often. We felt that such constant interruption to sleep could not be good for MIL. Sadly, MIL passed away within three days of delivery of the mattress and we donated it to the NH, but hopefully it made her last days more comfortable.
I don't think that there is any way that you can commit to turning her every two hours in the night and care for her during the day (and I think that SS are out of their minds to even suggest this), so would strongly recommend you buy such a mattress, irrespective of whether your mother comes back to live with you or goes to live in a NH.
I hope that your mother feels better soon.

 

[MollyMae23]

Thanks everyone. I did think that the comment was insensitive considering what a hard decision it is to decide on moving the care onto a more professional basis.

Mum does already have one of the specialist relief mattresses so maybe this will resolve the problem when SS arrange a OT visit because I agree with you AnoviceinN1 it's not just disruptive for the person doing the turning but the person being turned also.

I've probably panicked too soon because of the comments made by the dementia carer so thank you all for your reassurance that this was a totally unprofessional way to talk to a relative of a hospital patient.

I think social services are keen to settle mum back home because of the shortage of places in nursing homes so I guess they would have to find a solution because they will be pressured by the hospital for their bed to be freed.

 

[CJW]

Going in to a care home is not a death sentence. It is true that the first six week adaptation period can be tricky but most people do settle. My mother once settled was much happier than at home. She relaxed and enjoyed the company. Remember that you have to consider both her and your own wellbeing. I find that now I am not struggling with all the practicalities of trying to care for her we both enjoy our time together more.
It is not an easy decision but Im sure you will get it right. perhaps go and visit nursing homes. if you find a place you know she will like and where she will be well cared for it will make things easier.

 

[Lindy50]

I just want to endorse all the comments already made, and most especially to reiterate that the 'professional dementia carer's' remark to you was not only insensitive, it was completely inaccurate.

You have a hard decision to make, but you are gathering all the relevant information, and as CJW says, I am sure you will get it right. I hope you have a helpful OT visit if one is arranged....as you say, that may help to clarify the situation.

Above all, do take into account your own health and stamina, in coming to a realistic decision about what you can do, and what is best for mum.

Good luck

Lindy xx

 

[Pickles53]

As others have said, there are many people who actually improve once they have settled. (Fingers crossed that my mum will soon be one of them, though she only moved a week ago.) A truly professional dementia carer would know that no two cases are the same and you cannot generalise in this way.

I strongly doubt also that any professional live-in carer would accept being on duty 24 hrs a day which is what the SS' idea amounts to!! They are being completely unreasonable; remember they have the legal duty of care and have to find a solution.

 

[Jessbow]

i think that 'pro' was well out of order- like you say, its possible there is a shortage of space in nursing homes, but even so...............! Not a good thing to say.Really not true.

My mum was too unwell to come home- i'd have loved her too but had to accept that it wouldn't happen - she was awarded full CHC funding and a place was sought.

Mum was a loner, almost reclusive in her later years. Prefered to be at home to being taken out, hated day centres etc etc.

Much to my suprise ( and I must say I was pleased) once in the nursing home ( which we presented as a place ''better than hospital until you are a bit better'' ) She came out of her self a bit, prefered to sit with other people than sitting in her room, wanted to eat in the dining room with others.

I think the company of others made her last few months better- even if it was only watching.

 

[MollyMae23]

My honest thanks to you all. I think that the sudden shock of the fall and an emergency operation which was something I would never have wanted mum to go through at her age totally disorientated me. It has been getting harder to care for mum with her advancing age and cognition decline but I guess because I was caring for her all the time I never really saw it as much as I do now. And as Nebiroth said when fighting not only Alzheimer's but also the ageing process the odds are stacked against a carer keeping all harms away.

I am so glad I posted here because your comments have helped me focus again and take a more proactive instead of reactive stance. Although I have two brothers I have been the main carer for mum for 4 years because they live a long way from her. They have visited but probably never really got an idea of how mum was even though I have tried to keep them updated. Since her accident I have not been able to fully share my thoughts and fears because they also need to come to terms, in fact they probably have a harder road because they haven't been so immersed in the information and advice I have been gathering whilst caring for her. This is why the support you have all shown on this thread has been invaluable to me. My brothers try to understand how I am feeling but they do not really understand the guilt and stress I feel about letting mum down. Actually in many ways I have entered a sort of bereavement period because although I keep thinking when we get her out of the hospital environment her cognitive ability will improve, really I know that the fall, operation and hospital stay will leave her in a much worse position than she was before.

So heartfelt thanks to you all I feel much more able to deal with hospital staff, social services and so called professional dementia carers and start working to find the best way to go forward for both mum's and my best interests.

 

[Pete R]

MollyMae23,

I am in a very similar position to you and echo what others have already said.

A word of warning with regard to SW's from my recent experience. Once the hospital have determined that your Mum is fit for discharge they will issue Section 5 notice. This puts lots of pressure on SW's to get your Mum out and they may sometimes go for the easy option for them and not the best for you and your Mum.

Following a fall at home my Mom had been lying in a hospital bed for 5 weeks with constipation and a continuing UTI. I got a call from SW saying she would be discharged home the next day with 4 visits a day. Huge row and it did not happen. I later found out a Section 5 had been done and SW was unable to find any home that would take my Mom in her condition.

Several weeks more in another hospital to clear the UTI and she is now in a NH which I have to say she is not happy with. Yet! She wants to come home and if it was at all possible I would make it happen. The 4 visits a day, that is the maximum the state can provide, I could more than likely cope with but as you have already accepted the nights would be impossible.

Obviously if you or your Mums finances allows for someone to be paid to look after her at night then that is an option I have considered but have so far managed to keep my heart from going down that route.

It is a horrible time to go through but please do not feel pressured by the so called experts. You know what is right for your Mom however whatever decision you make will not be easy.

Good Luck