New flat put on hold

[redex]

Hi everybody. I've only just joined this forum. My Mum has Parkinsons and dementia and has been living on her own in a sheltered bungalow with carers visiting 4 times a day. Having talked to her social worker, we had applied for her to move into a very sheltered flat with care on site 24/7.

We were just waiting for a flat to become available when on Friday she fell trying to walk from the bedroom to the lounge before the carers got there in the morning. She had actually done this three days earlier as well. I had a call at work to let me know that the carers had rung for an ambulance. The first time, the paramedics just got her up and checked her over and she was OK, but on the Friday I was told they taking her in for an xray as she said her leg hurt. I met her up at the hospital and the xray showed up a fractured hip. She was admitted and told they were going to do a Dynamic Hip Screw on the Saturday.

So they did this operation and physically she is doing as well as can be expected, but it seems to have made the dementia worse. She is very confused about where she is and what is happening and keeps asking when she can go home. I arrived at the hospital tonight and she had been trying to get out of bed and had got her legs tangled up in the side bars of the bed. She is not making much sense at all and seems very frightened. She looks at me like I am doing something terrible to her for making her stay in this place and I and the nurses have to keep trying to explain that she has to stay where she is for now until her leg gets better.

I spoke to the social worker and she said they had a flat available but they had to give it someone else as they don't know how long mum will be in hospital. The doctors have said she will need to go to rehab as well before going home. The social worker said that the next flat should go to mum and I am hoping that it becomes available in the right time frame, ie not too soon that they have to give it away again but before she is ready to come home so that we can move her straight into there as there is no way she can manage now without someone on hand at all times.

I am really not sure what is the best. The geriatrician had suggested a home, but the social worker thought that the very sheltered flat would be better. I really don't know what to do for the best. I have the nurses to contact the geriatrician to see he will see her in the hospital as she had an appointment later this month anyway (which should have been earlier but we had to cancel twice because of the snow). I would like to talk to him and the social worker together to work out what is best for mum.

[charles47]

Welcome to the forum, Redex.

Dementia can often be made worse when someone is in strange surroundings, such as a hospital. There's often at least some recovery when they're back in familiar surroundings but it can still be difficult when moving to a new home and it's not an easy choice when someone needs to move home: do you take their independence away or do you take a chance that they will cope for a little longer?

Tough choice. If it was me - and all other things being equal - I'd take the chance. But that's because the last place I'd want to be is in a residential home. Do you know how your mum would feel if she were able to choose?

[susieq]

Hi Redex

Could be the pain medication your Mum is on after her op is making the dementia worse.

We had exactly the same thing with my Mum after both her knee replacement operations. The first time she was on morphine and the 2nd time on Fentanyl (also an opiate) - she also had a urine infection which was aggravating the dementia. Even after we got her home the extreme confusion continued for at least another 3 months; she was convinced that we had sold her home and put her in a rented flat and kept on about wanting to go home; at one point she became quite paranoid and accused us of all sorts of misdoings. To be honest, even now 18 months after the last op she still has very bad periods which are characterised by nightmares and sleep walking. Although she has got over the part about not being in her own home. She's now experiencing a lot of pain with her hips and is in need of a hip replacement, but won't agree to having another op as she's frightened of the mental after effects.

We have already decided that we will keep Mum in her own home for as long as possible; at the moment she's OK with me visiting every day and being on call 24/7.When it gets to the stage that she is a danger to herself then I will probably move in with her and if that doesn't work out then she's agreed that a residential nursing home would be for the best.

You know your Mum best, so with the help of the geriatrician and your social worker you should be able to come up with a workable solution.

Hope you get it all sorted

((((((((hugs))))))))))

susieq

[rosemary]

Charles and Susie have said it so well.Just wanted to add my support too.
Keep us posted how things develop please.

x x

[pixienubbins]

make sure u r listened to, all u want is what is best for your mum

take care and keep us posted

[redex]

Thanks for messages of support.

An update on Mum. Yesterday she was moved to a community hospital nearer home, which as least makes it easier to visit. The ward sister was talking to me last night and asking how long Mum had been so confused. I explained that until this op she had good days and bad days but only occasionally did she just talk nonsense like she is doing now. 99% of the time you could hold a conversation with her even if she couldn't always remember what she trying to tell you. Now though she is rambling. A couple of days ago about a dog we used to have when I was a child, last night she was asking me about going to bingo. She is just in her own world now.

She has moved to this hospital under the heading of rehab, but she is not capable of retaining anything such as physio exercises and would not be able to do these on her own. The nurses have had to feed her. I don't know whether this was the case at the previous hospital as I was just told she was eating OK, but of course visiting times are not at meal times so I haven't seen for myself. All I could tell her was that before the op she was feeding herself OK.

I haven't made any progress with the geriatrician yet. His secretary is supposed to be ringing me back. I did find out that her confusion was causing concern at the original hospital so they sent her for a CT scan which didn't show anything up.

I asked the sister if the painkillers could be making the dementia worse and she said it was possible. She also has had a catheter since the op, so there is a possibility of a UTI as well. The sister is going to speak to the social worker as they deal with her for a number of patients. She was asking where I thought Mum should live and the truth is I really don't know - I just want what's best for her. The idea of a home seems like giving up on her as she would be in a dementia unit surrounded only by other people with dementia. Until this op, I thought the social worker had the right idea about moving into the very sheltered. Whilst still having her flat she would also have been able to sit in the communal lounge/dining area where they had a weekly communal meal, bingo etc and films on a projector. She could have had more interaction with other people which I think would have been good for her, but now I don't know if thats even any use if she can't hold a conversation.

I can only hope that this is a temporary worsening due to the painkillers or something and that she will improve but by the sound of your experience Susie, this could take some time. There is no way she will be able to move back in to the bungalow. Moving in with me is certainly not an option as for a start off there are steps upto my house which she used to really struggle with before, but now I think she will just be confined to a wheelchair. Before the op the doctor said that the fracture usually meant people losing one level of mobility, ie if walking ok before, use a stick after, if a stick, then use 2 sticks etc. She was already using a frame with difficulty before and the only step down from there is a wheelchair full time.

Sorry if I am rambling on. My head is just full of all sorts of emotions and I am wondering if I had done more about getting her moved earlier this wouldn't have happened, but she only got the official diagnosis of dementia a few months ago and until then the social workers didn't seem to do as much. It wasn't helped by Mum always having a good day when she was being assessed. It seems like as soon she got the diagnosis she went downhill quite quickly. I expected it to be more gradual than this.

Anyway thanks for "listening"

[charles47]

There are many different types of dementia and some are very fast-acting. Others take years to do the damage - there really is no set pattern.

But UTI's are particularly good at upsetting things - a friend of mine is looking after her father and his dementia really takes hold when he gets a UTI. Equally, once the UTI is sorted, he comes down to a more even profile again.

It may be worth asking for a home assessment - to visit home and see if there's any improvement, and see her capabilities there: unfamiliar surroundings, changes of personnel, there are so many opportunities for the unfamiliar in hospital.

[Bluebird]

The others have given very good advice to you Redex, but I just wanted to add my support to you and I hope that between you and the 'powers that be' the right decisions will be made to make your Mum happy and safe.
Bluebird xx

[redex]

Latest update - things are looking up

I had a phone call from the social worker - she has asked the manager of the extra care flats if they can hold on to the flat for a short while to see if mum will be well enough soon enough to move in there and they have agreed. Obviously they need to fill the flat asap to start getting the rent so they can only hold it for a short while. I went to see the flat that is available and other than a quick coat of paint to freshen it up, you could move straight in - it would be perfect. I said I would see how mum is over the next few days and speak to the social worker again to make sure that this will be the best place for her.

I went to see mum at the hospital tonight and she actually seems a lot better. I was able to have a conversation with her which I couldn't do on Monday as she was just rambling. She even had a joke with one of the nurses. The nurse said that she had eaten much better today. They were trying to get her to drink more as she has been dehydrated. So hopefully it is the dehydration that has worsened the dementia and she is now coming back to normal.

I am going to ring the social worker tomorrow and say that we would like to take the flat and get it ready for her to move straight into when she leaves hospital.

[NanaNana]

Well, good luck with it all, Redex. Remember us on here, whenever you need us. Take care now, Fran xx Have you asked the question of the sheltered flat wardens, what happens in the early hours of the morning etc. if your mum needs someone? Is she able to call someone? or what the procedure is? Must give you some peace of mind knowing the answers to these. Sorry, it's just my practical thinking. You know - the 3 o'clock in the morning, where's the district nurse syndrome.