Trying to stay on top of it all

[elvismad]

As some of you will be aware , my mum is currently in Assisted Living with care on site 24/7. This was suitable up till the last hospital stay in February when mum took a downturn from which she has not recovered. Mum is constantly anxious, frightened and wants 'to go home' . Mum asks to see her mum and is firmly convinced she need to get home to feed her children ( we are 53 & 52). Mum does not always recognise me ( I am there 2 evenings a week (at least) and all day at weekends). Mum always wants to be out and we employ a carer privately to take her to clubs 3 days a week. When mum is in the assisted living she is mostly desperate to leave. She becomes very vocal and verbally aggressive. Yesterday evening the care manager advised me that she had been so concerned at mums level of anxiety that she almost called the GP. I advised her that her was on leave but had left word with his team to contact him via his mobile should the need arise. I also suggested that she should act on her concerns going forward. The staff do their very best to comfort mum but they are clearly not there for1 on 1 care.
Mum is terrified of being on her own and its heart breaking to leave her whenever I visit. Mum also sleeps badly and wanders in and out of other tenant's flats, no doubt searching for company. Admittedly she is not the only one to do this but it distresses other tenants.
My brother and I have POA for both H&W and Finance. A MHT review was conducted at our request and a SW appointed by the team. Mum was started on a very low dose of Resperidone (with our consent) but this has had little effect.
I discovered on Saturday that mum had had an assessment for CHC that A.M. without our knowledge. My brother contacted the SW today to be advised that she had been unaware the assessment had been arranged for that day as she had wanted to be present. We are awaiting sight of that report and also one from the team at the Assisted Living. We are pressing for additional support for mum - likely 1 to 1 care. I don't know if this will result in mum being placed in a nursing home - there is only 1 in our area- or if she will remain at the AL with additional support. Mum is not self funding and I feel that her fate is in the 'lap of the Gods'

 

[Lindy50]

Hi elvismad
It does seem very unprofessional that neither you nor your brother were informed of this CHC visit. Also I certainly know how it feels for your mum's fate to be in bureaucratic hands !
However, it does seem clear that your mum needs more support and I wouldn't give up yet on the idea that this could be provided within AL. The main thing is that she should get the help she needs.
Very poor show from CHC but I hope the outcome helps.
Good luck
Lindy x

 

[elvismad]

Thanks @Lindy50
I am in 2 minds as to where would be best for mum - sometimes I think a care home setting would have more activities to engage / distract her but other times I think she still likes having her own flat. I guess I am concerned that the decision may ultimately be made on the grounds of cost rather than what would actually be best for mum.
My brother is chasing everything up with the SW so hopefully we will get some answers. although he has advised that once the reports go to panel its 4-6 weeks for decision. Poor mum. I wish I could do something to take away her fears

 

[Lindy50]

Hi @elvismad
There is no doubt that cost will come into the decision - but it should not be the deciding factor and there should be a best interests meeting with you and your brother before any plans are made. You have LPA I think you said, so that should give you the right to speak on your mum's behalf.
I dithered a great deal before moving mum from her sheltered housing to a care home. It's a difficult decision but I'm sure you'll know when the time is right.
Good luck
Lindy x

 

[elvismad]

Hi @Lindy50
I was advised yesterday evening by the care manager (a lovely lady) that mum had been distressed to such a degree again that she called the GP. They have asked that mum is monitored over the next couple of days with a view to tweeting medication. I got there early yesterday evening and sat with mum while she had tea and chatted with the other ladies. Then we watered the pot plants in the garden and I took mum to a nearby tapas bar for coffee and cake. She was most happy. Her private carer had taken mum to one of her clubs in the afternoon and said mum had been very happy. It seems so obvious the distress comes from being on her own and came on immediately when I went to leave. I was advised by one of the carers that mums SW is visiting today. My brother will be speaking with SW after her visit. I will let you know of any suggestions she makes.

 

[canary]

Its horrible when they reach this stage @elvismad - I remember it with mum.

When mum is in the assisted living she is mostly desperate to leave.

TBH, I think she is at the stage where she would be be better off in a care home. It doesnt sound to me as though she is really recognising this as her home now and once she settles in a care home she would probably be just as happy - if not more so. The advantage of a care home is that there is always someone around to talk to and to reassure and usually more than one, so that if she fell out with someone, there was someone else to talk to . Mum loved the activities (I never thought she would join in, but she did) and made friends there. I think she was lonely where she was before and loved watching all the comings and goings in the home. the routine suited her and her anxiety levels dropped almost immediately. I could still take her out and she loved her trips, although it always amused me when she confabulated to the carers all these stories about what she had done!

 

[elvismad]

Thanks for your reply @canary. I do appreciate your comments concerning company and activities in a care home setting and really do believe that mum would benefit from this. I am settled in myself that such a move would be in mums best interests. I am so worried that her increasing anxiety and subsequent verbal aggression will have her labelled difficult when she is really scared and in desperate need to constant reassurance. The AL SW GP and my brother and I are all pushing for an increased care package. Mum does not recognise her own home so any move to a care home would hopefully not unsettle her too much.

 

[Lindy50]

Thanks for your reply @canary. I do appreciate your comments concerning company and activities in a care home setting and really do believe that mum would benefit from this. I am settled in myself that such a move would be in mums best interests. I am so worried that her increasing anxiety and subsequent verbal aggression will have her labelled difficult when she is really scared and in desperate need to constant reassurance. The AL SW GP and my brother and I are all pushing for an increased care package. Mum does not recognise her own home so any move to a care home would hopefully not unsettle her too much.

I hope you are okay @elvismad and that you get some further help for your mum soon. I was struck by your concern that your mum might be labelled difficult - I may have been lucky but I have met some wonderful carers, both in the community and in mum's two care homes. Most of them would not be doing the work if they did not care about their clients, so there's every hope that your mum will be well cared for.
Wishing you all the best
Lindy xx

 

[canary]

I am so worried that her increasing anxiety and subsequent verbal aggression will have her labelled difficult when she is really scared and in desperate need to constant reassurance.

It probably depends where she goes.
Mum went into a dedicated dementia unit where the staff were trained in dementia. In the first week she lashed out and hit one of the staff and I was horrified and concerned that she might be asked to leave, but the incident was shrugged off as - no harm done and we now know the trigger.
Unfortunately, other people have reported that care homes (even ones that say that they can deal with dementia) wont tolerate anything more than very early dementia symptoms. Its always a good idea to ask any care home what behaviour they wont tolerate and if you are concerned you could ask them how they would deal with certain scenarios

 

[elvismad]

It probably depends where she goes.
Mum went into a dedicated dementia unit where the staff were trained in dementia. In the first week she lashed out and hit one of the staff and I was horrified and concerned that she might be asked to leave, but the incident was shrugged off as - no harm done and we now know the trigger.
Unfortunately, other people have reported that care homes (even ones that say that they can deal with dementia) wont tolerate anything more than very early dementia symptoms. Its always a good idea to ask any care home what behaviour they wont tolerate and if you are concerned you could ask them how they would deal with certain scenarios

My brother will be liaising with care homes with full disclosure of how mum is in the hope that they will be able to take mum and settle her should this option arise. The last thing we would want is multiple moves for mum

 

[elvismad]

I hope you are okay @elvismad and that you get some further help for your mum soon. I was struck by your concern that your mum might be labelled difficult - I may have been lucky but I have met some wonderful carers, both in the community and in mum's two care homes. Most of them would not be doing the work if they did not care about their clients, so there's every hope that your mum will be well cared for.
Wishing you all the best
Lindy xx

The AL team all love mum and strive to do the best by her. They are concermed for her due to get levels of anxiety. My worry is that anyone reading reports of specific behavioral instances may see mum as difficult.

 

[Lindy50]

Hi @elvismad
I understand your fears but if that’s all they see, you won’t want your Mum going there,of course. I think @canary ‘s advice is good, to ask what they can manage, and how.
All the best
Lindy xx

 

[elvismad]

Hi @elvismad
I understand your fears but if that’s all they see, you won’t want your Mum going there,of course. I think @canary ‘s advice is good, to ask what they can manage, and how.
All the best
Lindy xx

Thanks @Lindy50 and @canary
We will defiantly take that approach if we do get the choice of a care home place. So sad as this time last year mum wasn't far enough along on this journey to warrant anything more than assisted living. As painful as it is to watch, we will travel this road together until we reach the final destination.

 

[elvismad]

Just a short update. Mums SW advised that her CHC was going to panel on Monday - we have yet to hear further. I took mum to a dementia friendly screening yesterday afternoon. She lasted all of 30 minutes and demanded to leave. she is calm with 1:1 attention but engages in lttle. Lately it is hard to get her attention as her gaze seems to be fixed elsewhere. She told me yesterday that, whilst she had enjoyed living with me ( she does not live with me), she wanted to go home to her mum . I told her I would take her tomorrow. I didn't know what else to say. She also told me she felt useless and that she could look after herself but no one would let her. So very heart breaking. She later asked one of the lady carers at her assisted living if she was her husband. I advised the care manager of all of this but left feeling completely bereft. Is this the Risperedone?

 

[elvismad]

Still no news from Panel re CHC or whether mum will be moved to Care home setting or if additional hours will be added to her existing care package at the home. Mum sustained a bruise to her face at the corner of her eye on Thursday night/ Friday morning but (unsurprisingly) no one knows how it happened. The GP checked mum over Friday evening ( I was present) and was satisfied it was minor. Mum remains fretful and very tired lately. She dozed off several times in the car on Saturday and also in her wheelchair as we were 'looking' round the shops. She also fell asleep several times on Sunday when with me at my flat. She still does not sleep well at night at her Assisted living. Mum tells me she is 'not staying here' when I leave and gets quite tearful. I find it all very hard to bear and have resorted to sneaking off to avoid the situation. Mum often asks for me when I am right there with her, calls me by my brothers name or thinks I am her mum. Her latest fixation is that she has to get home for the kids ( we are 53 & 52). I feel drained.

 

[elvismad]

Had quite a lovely visit with mum last night. Her assisted living had organised a BBQ and, by all accounts, mum had enjoyed the afternoon. When I got there she was in her flat with a carer making her a drink and we sat and chatted and she seemed very happy and calm. She was tired from the days events and nodded off briefly while I painted her nails. I asked if she wanted me to read to her and she mumbled that she would love that, so I read snippets of a book on the 50's and 60's detailing peoples memories of those times. Mum feel into a deeper sleep as I read to her so I snuck out. I didn't like to leave without saying goodbye but had mum woken up she would have believed I had just arrived. Calmest I have seen her in a long time.

 

[elvismad]

So...things are moving on for mum. Mum's MH SW has just advised my brother that it has been agreed that mum needs residential care. I am relieved in one way, as her needs could not be fully met at her assisted living, but saddened in another, as I would not have wished this on her. We are awaiting details on the level of Council funding (as mum is not self funding) and are trying identify homes both near me or alternatively near my brother that could best provide for mums needs.
Having seen many posts here on the subject, we are taking the advise of fellow TP members and will be presenting the un airbrushed picture of mum when discussing her needs with any prospective homes and asking how they would deal with her behaviours . My brother is liaising with SW to ensure that mum is funded for dementia care and we are prepared to fight her corner.

 

[Lindy50]

So...things are moving on for mum. Mum's MH SW has just advised my brother that it has been agreed that mum needs residential care. I am relieved in one way, as her needs could not be fully met at her assisted living, but saddened in another, as I would not have wished this on her. We are awaiting details on the level of Council funding (as mum is not self funding) and are trying identify homes both near me or alternatively near my brother that could best provide for mums needs.
Having seen many posts here on the subject, we are taking the advise of fellow TP members and will be presenting the un airbrushed picture of mum when discussing her needs with any prospective homes and asking how they would deal with her behaviours . My brother is liaising with SW to ensure that mum is funded for dementia care and we are prepared to fight her corner.

@elvismad this is very good news I hope you are able to find an appropriate place for Mum soon. Hopefully you will have many more visits such as you had last Thursday when your Mum settles down in her new environment
It will be the start of a new era, never easy but hopefully very much for the best.
Hope all goes well.
Lindy xx

 

[elvismad]

@elvismad this is very good news I hope you are able to find an appropriate place for Mum soon. Hopefully you will have many more visits such as you had last Thursday when your Mum settles down in her new environment
It will be the start of a new era, never easy but hopefully very much for the best.
Hope all goes well.
Lindy xx

Thanks Lindy,

 

[Amy in the US]

Oh, @elvismad, I'm so sorry, this is not easy. This wretched disease is always changing and we just about think we have things managed and then it all goes pear shaped on us.

I do hope you can find the right place for your mum.

I'm very familiar with the anxiety and the need for constant company and companionship to feel secure. I was hesitant to move my mother from assisted living to memory care (dementia ward), but she was not at all upset by the move, settled quickly, and I immediately saw it was better for her. I hope you have a good experience also.