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I need some advice - Carers UK Forum

I need some advice

For issues specific to caring for someone with dementia.
Hello I’m new here and I just need a bit of advice please
Maybe not your usual post........I have what I would say is a fairly decent understanding of dementia....both my parents worked in care I’ve been around it my whole life... before having my daughter I too worked in care and have had Close family suffer from dementia.

But I need some help if anyone can please....
Sorry if the explanation is overly long....here goes!

So my aunt and uncle moved about 300 miles from our/their home town to be closer to my cousin and her husband (this was in Feb last year) My aunt is and always has been very close to her mum who did originally live alone but was struggling with cleaning and getting a bit forgetful so it was agreed that she would move with them they bought a bigger house with a bedroom with an en-suite and in July last year once all the work was finished my aunt came to collect her mum.... myself my husband, daughter and my Nan went up to visit them in august... it was a nice visit.
Before we left my aunt asked me if I thought her mum was ok after the move and settling in ok? So I told her seems happy ( she likes living with my aunt) But i had noticed she had got quite a lot more forgetful since we last saw her and was unaware that she was constantly chewing her tongue..I suggested maybe just checking in with dr again and chatting about dementia... I was told very flatly that her mum did not have dementia she was just getting used to her new surrounding... I didn’t want to over step so that was that and we came home
We haven’t been back to visit as we were due to go in April :pinch:
My aunt had been calling my nan a coupling of times a week just catching up and I too would chat with her... there lots of little behaviours that her mum had stared doing she would tell us about saying she didn’t know why she was doing it and her mood had changed she was very short and curt with answers and had decided that she no longer liked my uncle.
So again I mentioned the dr, getting help, and dementia and was again shut down
In February this year my aunts mum suffered a stroke at home and was taken to hospital...she was there for about 3 weeks before going to a rehab centre for about 4 weeks she was unsteady on her feet and lost the sight in one eye from the stroke and she didn’t want to do the physical therapy she point blank refused and stopped feeding herself for a while... and more so her confusion was much much worse things were all the wrong was round to her... during this time my aunt would call me daily sometimes more than once a day to talk which I don’t mind at all she would often ask what I thought but dismissed what said...saying the confusion now was from the stroke and would get better When I asked what drs and professionals were saying she said nothing just that she needed to do the pt
When it was coming to the end of the 4 weeks and there was conversation about discharge my aunt called (still calling daily) very annoyed and offended as the specialist doctor social care nurse along with the therapist had suggested perhaps looking into a care home for her.. my aunt did not want this at all partly because she wanted to looked after her mum herself at home and also because other family members told her she would be out of order putting her in a home she would be fine back at home
So she was assessed For everything from mobility to talking as my aunt and uncles House was assessed
The out come was that.... my aunts mum along with her other illness with her heart her diabetes and issues from the stroke also had advanced dementia.... my aunt was advised that perhaps care at home may difficult for her alone so perhaps a months trial with Carers coming twice daily and for four hours on Saturdays was best and then they would re asses
So she moved home my aunt was still calling daily it was her little escape although I don’t Think she realised after one week my aunt decided she didn’t need the extra help from Carers it was more stressful and she was confident she could look after her mum just fine so she cancelled them I suggested against this. In the next few weeks we chatted daily some days were ok some days harder and I offered any advice I could
She still hated my uncle and now screamed a him calling him names whenever they were in the same room she has hit my aunt quite a few times doesn’t want to eat anything has been hiding odd things (food money and some times faeses) around the house
So understandably things have been difficult for them especially my aunt... when we talk I try my best to give the best advice I can without upsetting her but being honest.... she asks me a lot why is she doing that/this now she didn’t before and I explain as nice but clear as I can
About 2 weeks ago when we spoke my aunt said that she didn’t think She was getting enough help from social services and she would ask for more help when it was time to re asses as her mum was not going into an home despite the struggle ( this for me was quite hard as my aunt was supplied with the extra care she now needed but she didn’t want at the time) I chose not say anything
2days later she had a small TIA at home resulting in a fall and was taken back to hospital where she is still now......
My aunt visits her every day and calls them every morning and evening and call us twice a day to update..... since the TIA she has deteriorated what sounds like a lot to me....
Every time my aunt calls me now she is soo distraught or crying....she’s had a few heated conversations with nursing staff over her mum recent deterioration
Like no longer being able to feed herself.... her view is when she left rehab and came home although shaky and maybe a little messy she was perfectly capable of feeding herself and the reason she no longer can is because the staff decided to feed her... now I’m not there but I do of course have my own opinions (that I try to be very polite about if I do voice them.
Her mum is now double incontinent.... little to no mobility eating very little and calls out a lot through the day and night at all hours.... she’s still in hospital on a ward

And this is where I need help

The last few days have been difficult for myself and my Nan who is 82 as my aunt is calling 3 maybe 4 times daily very annoyed or crying...which again is fine we are here to sport her.... she sounds exhausted, but the conversations for us are difficult
My aunt has told me 2 days in a row that the doctor has told her he thinks it would be in her mums best interest to be discharged into a care facility.... the 1st day she told me she was in bits and is still no Keen on the idea of a home..... we spoke for a while and I explained it was perhaps for the best....... she would be given the care she needs and she could still visit daily.... before hanging up she told me she would see what her mum was like tomorrow maybe she’d be brighter and she’d talk to the dr again then

I really don’t know what to do.... my aunt is not unintelligent at all but she does not want to accept that her mum is ill and that she isn’t going to get any better... we have lots of the same conversations with me trying to say things in different ways but things always end the same
She still wants her mum home and has asked for another home assessment....
today she called me again in bits telling me that the dr has told her that her mum would need round the clock care if she were to come home she would need help with everything from Carers so again they suggested it would be better for my aunt and her to look into a suitable home
My aunt was so very upset by this..... again
She was also told that she should prepare as With all of her issues she may only be here for another 12 weeks...I don’t know for sure not being there but sadly I think maybe this may have been mentioned to my before now and sadly unaccepted
We had lots and lots of variations of the conversations we have already had.... I try to explain as I’m sure the drs are that she isn’t going to get better as horrible as it is unfortunately it’s the truth.....
Our conversation ended today with my aunt tell me she was going to call the social worker and get her advice and go see her mum in the afternoon a talk to the dr, and she still wants a home assessment this week ....... I’m finding it really difficult..... my aunt has always been in some state of Denial about her mum being unwell especially with dementia.... but her reluctance to accept the she really is very unwell, and needs full time professional care Is worrying me
I know it’s not What she wants to hear no one does and I know this was not what she saw happening after moving
Every day she seems to be so surprised after being told Again that her mum needs full time care its like she still didn’t see it coming at all.... she can’t cope with this situation or accept it and that makes me so worried ... because I know this won’t get any better and I don’t know how she will cope when the time does come I’m worried she won’t accept it
And I feel ( I could of course be wrong) that it will sooner than 12 weeks going by her recent deterioration ... I don’t know what to do
At the moment my daughter is unable to travel and my name could not travel alone
I want to help my aunt t
Any advice???
Sorry this was soooo long just wanted to fully explain
And probably not like other posts
Hi Andi,
I hope you got some sleep after typing your post in the early hours.

Unfortunately, I don't think there is anything else you can do. Your Aunt and her Mum have a range of professionals involved and supporting them.

If your Aunt is adamant to have her Mum back home, then Fast track continuing health care funding would be possible as your Aunt's Mum needs end of life care. This funding would pay for her Mum to have care at home or in a nursing home.

I honestly agree with you and think she would be better with her Mum in a nursing home/hospice so she can focus on visiting and spending time with her, without getting bogged down with all the care etc. However, it needs to be her choice (although the professionals might yet make a best interest decision and decide her Mum needs to be cared for in a nursing home.) You can't do more than you are doing, and it sounds like you are doing plenty - it can't be easy receiving all these anguished phone calls several times a day. She is lucky to have you at the end of the phone.

Melly1
Thank you for your reply melly....
I went to visit my aunt early this week and after a lot of tears and talking, her mum moves into the closest nursing home to my aunts house that we could find that had space etc.....

Although my aunt is still hoping that her mums condition may improve, this is definitely a step in the right direction.

Andi
Andi,
I'm now going to make what sounds like a horrible suggestion.
Google "Signs of Dying".
We all know that as we get older, things don't work as well as they used to, as part of the natural ageing process, but there is almost no discussion about how the body slowly shuts down. It's often a long gradual process.
When my mum was very ill and no one would explain anything, I was so worried that I asked Google, and found some good, gentle explanations about the process of dying. Mum lived another couple of years after that, but I could see and understand what was happening.

Aunt clearly struggles to accept how ill her mum is, so you need to tread carefully, but maybe drip feed information to her. If she is in pieces with mum in hospital, she is certainly in no state to care for someone totally bedridden.

Keep saying it's what her mum NEEDS although not what anyone WANTS.

There needs to be some thought about funeral directors and costs, but aunt is in no state to do that either. Does Nan have much money? Funerals can be expensive, so you need to ask around for prices, so that when the time comes, there isn't any panic. (My husband died suddenly from a massive heart attack, dreadful).
Once nan is in a home, you need to talk to the home manager about supporting aunt, and some decision making.
Did nan own or rent her house?
Was aunt living with her?
My mam made me promise never to put her in a home, a promise I intended to keep. But, as previously said, it becomes about what they need, not what they, or anyone else, wants.
If it’s any consolation, mam was extremely well looked after in the care home & although not at the same stage, we witnessed every day how they cared for all the residents, no matter what stage they were at.
I hope things go as well as they can & take care of yourself
X