Trying to get the best for dad.

[Cecilea]

My dad has dementia is in a care home and is well cared for pretty much of the time and I am impressed with the care standards but there are issues when he is sick .The family tend to notice more quickly when something is wrong and ask for the GP to visit but he is always called ONLY when the person in charge feels it is appropriate.On more than one occasion this has resulted in emergency admission once with serious complications.

Three weeks ago my dad was diagnosed with a chest infection and my mother discussed his swallowing problems with me and I suggested that she might discuss this with the GP and the staff and ask for a swallowing assessment and ask them to use thickener for his fluids .She agreed to do this but could not get to see the GPand could not find the appropriate staff member.I visited dad on the following day(Saturday) and he looked unwell and carers reported coughing on swallowing fluids.I asked to see the person in charge and explained that he had some swallowing issues and that a product to thicken his fluids would help until he improved.I was met with the age old response "We cannot call the GP until Monday".I explained that we had purchased the product over the counter as it is not on prescription but they said could not use it with out the GP writing it up.I asked for a GP call out but it was refused so I said I will call him myself .I explained the issue and the on-call GP visit was arranged and he agreed to write up the product on a PRN basis.It was 4pm.Later that evening at 10. 30 pm my mother phoned to say that on arrival at the care home the GP was turned away by the person I has spoken to saying the visit was unnecessary. I was devastated and furious!

My father has swallowing issues which are plain and clear to the trained eye.He has been assessed by the speech and language team in the past and the home know this .

Three weeks later he is better after antibiotics and is waiting for the speech and language team to assess him again but still no thickener product is available for his fluids.Two days ago he went off his feet and was admitted to hospital where they noted the swallowing problem again and used the thickener product as on previous occasions.

My mother says that the product is still not available for use by the home even now that he is home again.The nurse at the hospital agreed to inform the home of their use of the product suggesting that they continue it PRN.

I have had to negotiate so many things for dads care and some staff seem to want to make a fight out of it every time !I work in a nursing dementia care home myself and have always prided myself on listening to family and being as open as possible about taking their concerns on board .Most of the time family are right and they carry a knowledge and love of their relative that we will never fully comprehend and we must respect this.

Why should dad have to wait three weeks for such a simple thing?

Why are families treated like criminals?They have least support when the family member is at home being cared for 24hrs a day in many cases and are blamed for being stressed by it.We did this for as long as we could until we were exhausted.

Why cant health professionals be listened to when they recognize problems with a relatives care ?

I cant do this anymore my energy is running out and I cannot face the staff there any more.

I finally understand the reason why families stop coming to visit their loved ones .They just cant take it anymore.You either succumb to what the staff decide or you complain or you just stay away.

What am I going to do ?

[madwife2002, BSN, RN]

I am sorry what is happening to your dad but I do not think we cannot offer this kind of advice on here. I am going to remove it to staff review forum, where we can discuss it and we will get back to you

[madwife2002, BSN, RN]

I have moved thread back to forum but I ask posters to please just offer support to the OP and no medical advice-Thank you

[dthfytr, ADN, LPN, RN, EMT-B, EMT-I]

After watching my father dwindle away from cancer, then my mother from alzhiemers, I know how hard it is. My siblings presured me to care for them at home, but fortunately we were in an area where we could always find a facility to give the level of care they needed. My siblings still don't talk to me, and I understand that they were feeling helpless and took it out on me. I couldn't abandon my family and career to try to provide the months of 24/7 care my parents needed, but I know they were always in a facility that could. I hope you and your family can work this out for Dad, because his condition is hard enough to deal with and you shouldn't have to worry about him getting good care. Via con Dios.

[Cecilea]

It was not a rhetorical question requesting medical advice.I know what dad needs.It just needs to be done .

Personal support and stories of nurses in similar situations would be good.I will get whats required but it is like getting blood from a stone at times! Very frustrating.I hate complaining and want to maintain good relations.

[Cecilea]

Thanks dthfytr.....family very good to me, have an abundance of siblings most very supportive.Brother has agreed to support me in chatting issues through with the home and to tackle sticky situations together rather than me alone.

[dthfytr, ADN, LPN, RN, EMT-B, EMT-I]

The staff asked that we give support and not medical advice. I tried to be subtle. Find a facility that can give him the care he needs to your satisfaction. That's personal advice, not medical, so hopefully it wont disappear.

[Redhead28]

Perhaps you can set up an appointment with the DON and explain your concerns. Also some support groups for caregivers of dementia patients. Good luck.