concerns about new care home

[kkerr]

Hello All,
Looking for some advice/personal experience here...

My mom (74 -vascular dementia, rapidly progressing) went into a care home just over a week ago. Great care commission ratings, top 3 in Scotland for dementia care, and personally was impressed with the calmness of both the residents and staff. Originally as a 2 week respite placement with the option of being permanent.

However, issues are coming up. Are these normal, teething issues? Are they things I should be concerned about with regards to Mom staying on? etc.

Issue 1
Since arriving 8 days ago, Mom has had at LEAST 3 falls, the last 2 resulting in her now having x2 black eyes and a ? broken nose! Mom is still very mobile, walking a lot through the care home, etc. She had occasional falls at home, but never did herself any damage. I asked to see the staff records of each fall - very poor documentation, in my opinion "found on floor, near fireplace". At no point has a doctor been called out, as Mom refuses to let anyone examine her (she can be aggressive at times when touched/helped with personal care, etc). I had a long chat with the nurse on duty yesterday - as she was concerned as well. There seems to be some discrepancies between what is being said in handover, what I am being told on the phone, etc. Basically I told her I don't feel that my Mum I safe there, and she sort of shrugged her shoulders. They don't feel they have the staff to watch Mom closely enough to reduce her risk of falls. I am a realist. I know falls happen. I am more concerned about the frequency of falls, the lack of information, and the staff seeming to tell me they are too busy to look after her any better.

Issue 2
I feel as though I am being cut out of her care. Mom has lived at home with me for 3 years, I am her only child and we are very close. In the 7 days she has been in the care home, she has had x2 visits from a dementia specialist nurse, x2 visits from the local GP and x1 visit from a local dementia consultant. Whilst I am EXTREMELY grateful for the input - I am being informed, after the fact, when changes are being made. When I raised the concern of strong pain medication being started (and yes, I am aware this could be leading to the falls!) I was told by the manager, with her hand held up in my face that I "need to let the specialists handle it"!! RAGING. I am a doctor, and I am her daughter - thus I AM one of the specialists. I tried to make it clear that I expected to be included in discussions about changes to medication, etc - but she wasn't really hearing me, and I wasn't being too forceful as I don't want to get off on the wrong foot. Have others experienced this? Where ALL the care seems to be taken over and out of your hands? I still consider myself to be Moms main carer, and just because she is not residing under the same roof with me, that should not change.

Sorry for the long post!! Anyones thoughts? I imagine there will be a meeting about this early in the week, as I refused to sign the contract on Sunday - saying I had concerns about Moms staying as I didn't feel she was safe. I told them, I absolutely want the fentanyl stopped (my Mom went from being on occasional co-codamol tiny dose, to a 24 hour fentanyl patch!! Despite my protesting this was too strong) immediately, and if they cannot get Mom to take medication they could use a co-codamol patch. The nurse said she would get this sorted on Monday.

Am so disappointed. And don't really know where else to turn. This is a "dementia specialist unit" with the highest ratings in practically the country - yet I feel Mom is MUCH worse off than she was when at home.

 

[cragmaid]

Hi, Yes falls happen, I went for about 10 days visiting Mum or being telephoned virtually every day about a new fall....poor Mum looked like she'd lost a 10 round fight.

I suggest you make an appointment to meet with the GP and care manager at the Home to discuss fully the care plan and medication plan put in place at this new home. I do appreciate that you are a Doctor and highly trained, but in this instance you are not Mum's Doctor or even her primary need carer. This sounds harsh I know. You do have a role to play...that of Mum's Watchdog. You need to know what is being done and what is planned before you think about this new home as a mistake. They are also just learning about your Mum's illness and how her reactions to changes in her meds are affecting her.
There is so much you can still do to help and support your Mum...it's just a difficult adjustment for you to make too. Your Mum is lucky she has you there to fight for her.

 

[lin1]

Hello Kerr.
Your mum is lucky having you batting for her.
Yes you are Still and always will be Mum's carer .
Not only do you know your mum best .She is your Mum not theirs.
You also have an added advantage that most of us on here don't
Do staff and Drs involved with your mum know you are a Dr , if not it might be a good idea to let them know.

I agree you should be kept in the loop about medications , treatments etc, I expected nothing less with my mum , though I did encounter a couple of specialists who tried it on with inappropriate meds. Mum was at home btw.
I would speak with the GP and inform them of your concerns and that you wish to be kept informed and consulted about mum's treatment and care.

 

[kkerr]

Thank you Maureen and Lin - all sensible advice (and Maureen - no need to apologise! Words I needed to hear - I often come to TP in order to hear some of the things that I think friends are too cautious to say - only those with experience of this disease, first hand know how to say some things!).

I will ask to meet with the manager during the week and see if we can, together, put a plan in place to try and reduce the incidence of falls. I will then see if I can speak to the GP re the pain medication. All the care home staff know I am a doctor. Throughout Mum's illness it has been both a blessing and a curse. I am NOT a dementia specialist! Sometimes people either don't intervene or suggest because they think I already know it, our own GP (the one Mom had before she moved) has very much taken a back seat I think for this reason. I think friends and family also assume that I will know how to "deal" with this disease because of my training. I don't. In fact I spoke recently to a friend of a colleague who IS a consultant in old age medicine, and SHE is struggling to cope with her mother who also has dementia, and has finally tried a care home.

The other curse of this profession.....like so many here I feel so helpless. My mom went through great lengths to put me through medical school. She always wanted to be a doctor, but was told that it was not a "fit profession for a woman" so she made sure that I got through! Now, with all that help and all my training... I cant even help her. So I probably do seek to remain "in control" of her medical care as much as possible as I feel I owe that to her, at the very least. I feel she must be thinking "why did I put off my retirement and work to put that useless person through medical school, only to wind up in a nursing home"?? At least that is what goes through my head at 02:00.

Will arrange meetings and let you know how it goes. Just off phone with car home, no falls last night, Mom up dressed "looking smart". However did kick one of the male care staff in the nether region last night! She still has good aim.

 

[susy]

Being a Dr and the staff knowing it will have threatened them. They are human beings and as such don't wish to feel they are coming short under your gaze. Ridiculous I know but there it is. You will have done nothing to warrant this I'm sure until things started to happen and you started asking questions. Instead of including you and helping you to help them they have put up a barrier.
There, I've said what you know is happening in reality.

As far as the increase in falls is concerned, the change of environment alone can contribute to that, as can a progression of the disease. Has a UTI been ruled out? Or any other infection. Change of environment with lots of other people can lead to an infection.
The change of medication does seem extreme. I'm so glad you are on to that. I didn't know that you could get cocodamol patches though, so that's something I've learned that could come in handy for the future. Thanks.

My advice would be to move forward, you need somehow to get the home to understand that you feel very vulnerable right now an that you should be encouraged to be part of her care rather than "this dr who is just interfering" you need for both you and your mum to be part of this. That way the most important person in this, your mum, can be cared for and you can relax and enjoy spending time with your mum.

(If it helps, maybe show the care home manager this whole post so they can read how you feel. )

Best of luck to you. I do hope this can be sorted out. I am a nurse (theatre based) I do understand the complexities of these sorts of issues as I have unfortunately seen similar situations in the past. (I was traditionally trained )

 

[kkerr]

Thank you Susy!
A lot of what you say rings true, unfortunately. I do my best to be a daughter first and a doctor second, but when I feel that protective instinct kicking in, I can revert to my comfort zone, which is probably being a doctor first and a daughter second! Less emotional turmoil in being a doctor. We have only been there 8 days, so feel that the "barriers" went up pretty fast! I am sure they are also very accustomed to people admitting loved ones to care homes and NOT being that involved in the medical management as most are probably grateful/relieved for someone to be taking on that role, so my need to be so closely involved is probably a new-ish situation for them. The tipping point for me was when the owner told me "Your Mum is really quite poorly" in a very condescending manner. REALLY??? Well knock me over with a feather! That hadn't occurred to me before. FFS! As in many aspects of healthcare - it is the attitudes rather than the actions that are going to draw the most complaints and the most heat from families and loved ones.

Will attend the meeting on Tuesday with everyones words in my head - to try and work things out. I do still believe they are a good care home. As you said, I have probably put them on the back foot a bit, so will try and take this into consideration.

Thanks again everyone - between your comments and a brisk walk with the dogs - feeling significantly better!

 

[Gigglemore]

Sorry but I would be very upset at the manager's treatment of you - how can the "specialists" possibly have a good overview of your mother after such a short time? But perhaps they decided that her dementia is the magic one where she can clearly and lucidly answer questions, so your presence would have been of no value?? Your own work commitments might have made it impossible for you to attend the appointments (especially the GP visits when there may be no scheduled time) but a phone call to let you know in case you wanted to/could attend would have been common courtesy - especially if you made it clear that you wanted to be involved in your mothers care.

Care home staff come and go, and ultimately you are the one constant in your mother's live who has to deal with the fallout of any treatment or lack of treatment.

Having said all that - I guess you do need to be conciliatory as you really do want the placement to work and good relationships with the staff are so important for your own peace of mind. Good luck - I hope letting off steam on TP will help you to keep a friendly smile on your face on Tuesday.

 

[susy]

How did Tuesday go?

 

[kkerr]

Horrible to sum it up. Care home saying that cannot "cope" with Mom (this coming from an EMI unit who won a care commission award last year for dementia care!) and options I was given 1) dementia unit hospital admission to try and "stabilise" her; 2) take her home; 3) find another care home. I opted for the hospital admission, as I didn't want her to stay there any longer, but need time to consider my options. Angry, disappointed, fed-up - don't even begin to describe how I am feeling. I am trying to remain positive that maybe the admission can help improve Mom's quality of life, but she wont be going back to that care home, so starting the process all over again, and now completely unsure of what to look for. Am hoping that further down the line, the staff/consultant at the ward can help me on this.

 

[jaymor]

My husband entered a nursing home just over two years ago. He was fully mobile and he had only been there a week when I got a call to sY he was on his way to hospital with a cut to the bridge of his nose. They said they would ring me on his return.

I was heartbroken when I saw him, a cut across his nose that had been stiched and two black, purple and a slightly green tinged eyes. No one knew how it had happened. His 1:1 had gone into his en-suite for a tissue and found him sitting on the bed with blood running down his face.

I was very upset and like you, thought they were not looking after him even with 1:1 care. Two days later I was sitting in his room with him and as he walked around the foot of his bed he bent down to mess with the metal brake on one of the wheels and his nose and glasses missed the foot of the bed by millimetres. If he had been just that bit closer he would have caught his glasses and they would have dug into his nose and caused the same wound. These things happen in seconds and even though I was quite close to him I would have had no chance of preventing the accident.

He was a fiddler and messed with everything. He removed all the stands from the back of his picture frames and quite regularly bent down to touch the brakes on the bed. After about a month the need to be curious about his new surroundings stopped and we had no other falls or problems.

Falls will happen but hopefully your Mum will be more settled and less anxious and not have anymore problems.

She is a very lucky lady to have you batting for her.

Jay

 

[susy]

I'm sorry it has gone badly. Is your mum in hospital now or is there a bit of a wait for a bed?
I do hope that you find somewhere else that suits your mum and you better. To be honest it's all about the individuals. You can go somewhere that looks shabby but the care can be superb. That is what I hope for you and do you know what, that's what I hope for for me when my time comes.
Do keep us posted to how she gets on. I think any other healthcare professional can learn a lot from this thread.

 

[Adcat]

Just read this. It's frightful. Please do keep us updated and take care.

 

[ShareCare]

Hi,
Really sorry you are having this experience!
My view, and you may not like it, is that your search for a suitable care facility is not over...
I think this because, to my mind, the conduct of the care home is unprofessional.
My reasons for saying this are:
Your "Mum can get aggressive when it comes to personal care."
A relative has PICKs disease. First care home said they had a dementia unit...even had a sign. The staff got into a battle every time it came to removing trousers. Management talked a great story.
Second care home somehow managed to achieve the removal of trousers without any confrontation.
If someone tried to remove my trousers I'd probably kick off. There would have to be a very good reason for it. The second care home achieved the goal in an acceptable way.
The Manager's "hand in my face" I would see as a sign of frustration. Speaks volumes.
If the same frustration is all there is to try to manage the trousers scenario...it probably should end with a well aimed kick which is not how professionals would handle it. QED, they have demonstrated they are unprofessional.
It seems the Management want to provide a great service and they haven't the trained staff with which to achieve this. It seems their training is inadequate too.
Sorry if this is bad news!




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[ShareCare]

Hi,
Just read the rest of this thread and realise my post is preceded by new events.
In my relative's scenario it was following the involvent of a specialist from the local psychiatric hospital that an appropriately-qualified care hone was found. Hopefully, you will get the help you need now in finding Mum a great place that'll look after her properly, professionally and the way she deserves.
My fingers are crossed for you both!




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