I know exactly what you mean about the feeling of rejection by a home, it's like an official public statement that our mum's are worse than all those other mum's, that they have been condemned. However, having just been through the same process, I'm so glad now that we were refused by the residential homes i'd chosen,as my mum is now in a dementia unit and she is being so well cared for despite her increasing anxiety. No way would the residents have included her in the other homes, and how dreadful to go through the rejection. Please don't lose hope, you will find the right home and the quality and level of care your mum actually needs. It takes time to get used to the feel of a dementia unit, but just think how truly appalling it would be if the residents were not as calm as they (mostly) are. That level of order is quite something to achieve given their states of mind!
Trying to stay on top of it all
- Thread starter elvismad
- Start date
That's just it @Norfolk Cherry it feels like mum has been condemned
I know the dementia unit is the best option for mum, We just want to get her safe as soon as we can
Thanks @Lindy50
My brother will again be chasing up SS tomorrow as they are doing very little regarding referring suitable hones to brokerage. Is been over 3 months since mums review stated she needed an EMI care placing. The Assisted Living is, as you say, inadequate. Why does it all have to be so hard?
So this weekend was draining. When I got to mums she was in the communal lounge with a carer and had her coat on ready to go out. I can honestly say there was no flicker of recognition from her. As it was gorgeously sunny and warm I took mum over the park on Saturday. We stopped off for hot chocolate ( her now all time favourite) and a chocolate muffin at a park café and she seemed quite awake but very uncommunicative. I prattled on as you do, to fill the silence. I pushed her in her chair to the English garden and admired the roses and commented on the birds bathing in the little water feature. She asked if she thought she was an idiot as she could 'well see the birds'. We went back to the car and on for a drive to the local forest. Mum slept on and off. Back at her AL I painted her nails and she nodded off - I left at 4 (after 5 hours) handing mum over to a new carer who introduced herself and made a fuss of mum.
Sunday was a bit of groundhog day. We went to a different side of the park and sat by the boating lake with snacks and water. There were lots of people about and mum seemed quite entertained but spoke little. I enthused about the colours in the trees, the beauty of the fountain and the warmth of the day without much reaction. We wandered through a 'pop up' market and then back to mine for a light lunch. Mum ate a little and then nodded of on the sofa. She also slept most of the drive home and was quite indignant when she got back. Again I handed her over to the same carer.
Another carer, who knows mum well had advised that the change in time of her Risperedone, to earlier in the day, is not working as again mum was up until 5am. She is on the minimum dose and we really don't want to increase it as we are terrified mum will be even more withdrawn.
I hate not knowing what to do, that I can't fix this, that mum is so lost, that this is no kind of life
Sunday was a bit of groundhog day. We went to a different side of the park and sat by the boating lake with snacks and water. There were lots of people about and mum seemed quite entertained but spoke little. I enthused about the colours in the trees, the beauty of the fountain and the warmth of the day without much reaction. We wandered through a 'pop up' market and then back to mine for a light lunch. Mum ate a little and then nodded of on the sofa. She also slept most of the drive home and was quite indignant when she got back. Again I handed her over to the same carer.
Another carer, who knows mum well had advised that the change in time of her Risperedone, to earlier in the day, is not working as again mum was up until 5am. She is on the minimum dose and we really don't want to increase it as we are terrified mum will be even more withdrawn.
I hate not knowing what to do, that I can't fix this, that mum is so lost, that this is no kind of life
Dear @elvismad I'm so sorry you had such an exhausting weekend and felt your mum was unable to get much pleasure from it. I'd guess she 'got' more than you might think though - just imagine how she might have been if you hadn't taken her out.....
That said, it sounds as though the care home can't come soon enough. Then it would matter much less what time she was asleep or awake, although ironically she might settle into a more regular routine in a home.
I so admire you for all your efforts X
Maybe you could discuss the risperedone dosage and timing with the GP?
Hugs
Lindy xx
That said, it sounds as though the care home can't come soon enough. Then it would matter much less what time she was asleep or awake, although ironically she might settle into a more regular routine in a home.
I so admire you for all your efforts X
Maybe you could discuss the risperedone dosage and timing with the GP?
Hugs
Lindy xx
Thanks for your reply @Lindy50 you always know what to say. I hope mum did get more from the trips out than I could see. The change of timing on her medication only started last week and I believe the GP wants to increase the dosage. I am not happy with that scenario, as I too think mum may well settle once in the correct care home. its all so frustrating and I feel I am losing mum
Still no update via brother regarding the care home. Got round mums last night and, whilst chatting to her carer, discovered a male agency carer was brought in the previous evening to assist with personal care. Whilst I was there another male agency carer arrived and was again assigned to mums floor! Whilst mums carer advised that she kept the male carer out of sight whist attending to mums very personal care, I found myself very disturbed by the fact that he was there at all. I believe that mum would still be aware it wasn't right if a male carer attended to her personal care. Yet another loss of dignity to the cruel disease
Feeling so low and I'm not sure how much longer I can do this. Mum was being fed her breakfast when I arrived today. She had yet another night where she barely slept. She woke up long enough to get in the car and then out the other end at mine and go to the loo. She then feel asleep as I watched Lady & The Tramp. I fed her some lunch scrambled eggs and salmon flakes but waking her was a real issue. She barely stayed awake long enough to swallow.she ate very little. Two small spoons of yogurt and she is asleep again holding my hand. I no longer feel she has any quality of life. This is awful! The worst thing is I really don't want to be around her anymore.
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Oh @elvismad I’m so sorry
Your poor mum and poor you!! Where on Earth is this promised residential care??! You have waited so long
And as to your last sentence - I know that feeling so well. Am screwing myself up as I write to go and see mum. We have barely any conversation, she’s usually shouting/screaming....and as you say, I can’t believe it’s so hard to be with my own dear mum
Sending you hugs xx
Lindy xx
Your poor mum and poor you!! Where on Earth is this promised residential care??! You have waited so long
And as to your last sentence - I know that feeling so well. Am screwing myself up as I write to go and see mum. We have barely any conversation, she’s usually shouting/screaming....and as you say, I can’t believe it’s so hard to be with my own dear mum
Sending you hugs xx
Lindy xx
It
its so true @Lindy50. I am so anxious all of the time. My brother had escalated the care home provision via PALS but the waiting is crushing me. Poor mum I just want her safe.Oh @elvismad I’m so sorry
Your poor mum and poor you!! Where on Earth is this promised residential care??! You have waited so long
And as to your last sentence - I know that feeling so well. Am screwing myself up as I write to go and see mum. We have barely any conversation, she’s usually shouting/screaming....and as you say, I can’t believe it’s so hard to be with my own dear mum
Sending you hugs xx
Lindy xx
PALS have stepped in and we are now kept updated mums care home search. To date 7 homes have been identified in London, only 2 had vacancies that had then been filled once we had visited (They were not actually suitable anyway). In Bournemouth my brother was busy researching care homes and the list was passed to brokerage (another 7) and they added a few of there own. Brokerage have advised that the homes were either full or had advised they could not meet mums needs once they had seen the care plan. My brother is looking at another one today and we have been added to the waiting list of another. I am so sad. I feel that no one wants my mum. Oh how I wish she had been able to save to provide for her own care, but a working class upbringing in war years coupled with low paid employment and a husband with a preference for the horses meant that she lived week to week, just about managing to clothe and feed us and keep a rented roof over our heads. I realise people feel cheated when seeing their PWD's hard earned assets dwindle away covering care costs, but the situation mum is in is also awful. As it stands I have no idea when/if somewhere suitable will be found and little influence over where that will be.
I so feel for you @elvismad
My mum too had to wait for a funded place - I would have moved her far sooner had she had the resources. We had very little choice and in fact mum’s transfer from hospital to nursing home last year was done with next to no consultation with me at all as I was in hospital seriously ill. My husband had tried to arrange meetings with the social worker but she completely ignored him
So different from mums placement in a care home a couple of years previously, when we had a wonderful social worker.
Hoping something is sorted out very soon.
Lindy xx
My mum too had to wait for a funded place - I would have moved her far sooner had she had the resources. We had very little choice and in fact mum’s transfer from hospital to nursing home last year was done with next to no consultation with me at all as I was in hospital seriously ill. My husband had tried to arrange meetings with the social worker but she completely ignored him
So different from mums placement in a care home a couple of years previously, when we had a wonderful social worker.
Hoping something is sorted out very soon.
Lindy xx
Thanks @Lindy50
I feel as though we have failed mum. SS have just advised their weekly budget for mum and it doesn't come close to what the suitable (for her care needs as stated in the care plan) care homes are quoting. Even if we can find a vacancy we will have a battle on our hands to negotiate fees. Meanwhile, I just watch mum drifting further away from me. On the plus side she rarely gets distressed or wants to 'get out ' in that screaming, anxious way she has in the past, but, on the downside, mum doesn't really interact, cannot follow TV or read a book, cannot follow conversation, needs to be encouraged to eat and, when left alone in her AL flat will just fall asleep in her chair. Alone.
I feel as though we have failed mum. SS have just advised their weekly budget for mum and it doesn't come close to what the suitable (for her care needs as stated in the care plan) care homes are quoting. Even if we can find a vacancy we will have a battle on our hands to negotiate fees. Meanwhile, I just watch mum drifting further away from me. On the plus side she rarely gets distressed or wants to 'get out ' in that screaming, anxious way she has in the past, but, on the downside, mum doesn't really interact, cannot follow TV or read a book, cannot follow conversation, needs to be encouraged to eat and, when left alone in her AL flat will just fall asleep in her chair. Alone.
it just goes on and on... Still no closer to obtaining a place for mum. This weekend, my brother witnessed another service user at her AL being rude and frankly bullying towards mum - calling her a stupid woman and physically baring her way in a communal corridor as mum has developed a habit of going into her brothers flat - where mum just sits. Mum was upset but did not retaliate and my brother put her world to rights by telling her he thought she was lovely and with the promise of hot chocolate and cake. The care team at the AL have spoken with the service user .We understand her frustrations and accept that mums actions caused her reaction. It is still not acceptable as mum is so very vulnerable.
We are still trying to identify suitable care homes but so many are advising they cannot meet her needs - the main issues being the 'walking with purpose' and the 'aggression' - aggression is something we have not witnessed since mum started on the Risperidone as she sleeps a lot now (albeit not always through the night).
We have SS coming to reassess her needs next week as we do not feel the current care plan , drawn up in the summer, accurately reflects mum as she is now. My brother is liaising with SS daily and researches care homes constantly in a bid to find somewhere mum can call home. We all acknowledge that the AL is not the place for her. Despite all this the AL care team are marvellous and do everything they can to make the situation as good as can be.
We are still trying to identify suitable care homes but so many are advising they cannot meet her needs - the main issues being the 'walking with purpose' and the 'aggression' - aggression is something we have not witnessed since mum started on the Risperidone as she sleeps a lot now (albeit not always through the night).
We have SS coming to reassess her needs next week as we do not feel the current care plan , drawn up in the summer, accurately reflects mum as she is now. My brother is liaising with SS daily and researches care homes constantly in a bid to find somewhere mum can call home. We all acknowledge that the AL is not the place for her. Despite all this the AL care team are marvellous and do everything they can to make the situation as good as can be.
Oh @elvismad
This has been such a terribly long wait for you and your mum and brother
I do hope the reassessment next week produces some action - perhaps if your mum's needs are described differently by SS your brother may have more luck in finding a placement?
This is all so unfair on all of you
((((Hugs))))
Lindy xx
This has been such a terribly long wait for you and your mum and brother
I do hope the reassessment next week produces some action - perhaps if your mum's needs are described differently by SS your brother may have more luck in finding a placement?
This is all so unfair on all of you
((((Hugs))))
Lindy xx
Saturday was not too bad. I took mum for a haircut with her lady that has been looking after her hair for years. Mum was cold, she didn't know anyone, it was noisy, why was she waiting? We managed to jolly her along and the haircut looked fab - mum particularly liked the hairdryer. Warmed her up no end! I can't see us managing this for much longer.
Awful visit on Sunday. I arrived 11am at the assisted living to find mum in her flat in silence (no music/tv). There was a half eaten banana, a finished bowl of cereal, a cold mug of tea and an untouched glass of juice. Checking the log I saw breakfast had been given at 8.30am. Mum had been left unchecked for 2.5 hours with absolutely no stimulation. Her clothes were dirty( from spilled milk as she ate her cereal or hot tea???) so I changed her. There was no one about to challenge about this. Instead I wrote it all down in the daily log in her flat and raised it later with the manager who simply apologised.
We went out in the car intending to go to a local shopping arcade. I stupidly thought mum would enjoy seeing all things Christmassy. 10 minutes into the journey - again something mum used to enjoy - and she wanted to go home. So back we went. I helped and encouraged her to have her lunch in the dining room and spent most of the afternoon walking with her in the corridors for 5 minutes, then sitting in her flat because she was tired , and repeat. I'm afraid i started to lose my patience.
I left at 4 when one of the main carers came with a colleague to take over.
Oh the joys of staff shortages, agency staff that have had no handover. A difficult position for all, but mostly mum who was unsettled all day... and me... who spent most of the evening despairing as to when mum will finally be in surroundings commensurate with her escalating needs and dwindling faculties.
Awful visit on Sunday. I arrived 11am at the assisted living to find mum in her flat in silence (no music/tv). There was a half eaten banana, a finished bowl of cereal, a cold mug of tea and an untouched glass of juice. Checking the log I saw breakfast had been given at 8.30am. Mum had been left unchecked for 2.5 hours with absolutely no stimulation. Her clothes were dirty( from spilled milk as she ate her cereal or hot tea???) so I changed her. There was no one about to challenge about this. Instead I wrote it all down in the daily log in her flat and raised it later with the manager who simply apologised.
We went out in the car intending to go to a local shopping arcade. I stupidly thought mum would enjoy seeing all things Christmassy. 10 minutes into the journey - again something mum used to enjoy - and she wanted to go home. So back we went. I helped and encouraged her to have her lunch in the dining room and spent most of the afternoon walking with her in the corridors for 5 minutes, then sitting in her flat because she was tired , and repeat. I'm afraid i started to lose my patience.
I left at 4 when one of the main carers came with a colleague to take over.
Oh the joys of staff shortages, agency staff that have had no handover. A difficult position for all, but mostly mum who was unsettled all day... and me... who spent most of the evening despairing as to when mum will finally be in surroundings commensurate with her escalating needs and dwindling faculties.
