My dad is in a really bad way. He's recently been discharged from hospital into a care home. His diagnostic outcomes are not positive,the doctors told us that he will not get better now he has end stage copd and cvd. He also has vascular dementia. It's breaking me seeing how badly he's deteriorated and I'm wondering whether the environment could be making things worse for him. He's in constant pain with his feet, he's not mobile (he also has osteoporosis of the spine), his hand strength is incredibly weak. He's not getting any treatment whatsoever, he's getting care. Atleast when he was in community setting he was getting physio,regular health check ups etc. I'm just so broke and I don't know if there's anything I can or should be doing that I'm not 😔
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JessieGx
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I think it would be wise to make an appointment with the manager of the care home and the allocated Social Worker. Write a list of your concerns and the services that you would like to be involved . There should be a care plan that should be followed to ensure your father is receiving the appropriate care to meet his needs.
You need some proper advice for the care home he is in/ I looked after my dad at home. being married with kids was very hard. He did get the district nurse once a day.
I agree with teddyd you need to know exactly what care he will receive,
You say he is getting no treatment - First is he is in pain, that should be gone, was with my dad - The care home will be payed for caring for your dad, make sure he gets care, go to the care home. Distressing I know, but little else you can do, he also still must have a GP, contact his GP. Good luck
We spoke to the GP in charge of him today...it didn't go well. My partner questioned him about the last 4 times we've been and how his radio was off and his TV was off (two things we'd brought in to help with his stimuli) and the doctor completely lost it and actually got quite angry that we'd brought it up 😐.
If it’s a basic nursing home he’s there to pass. They do what they can. Most are underpaid and understaffed. The things you are desiring will need to be done by family or hired out
Report the doctor for neglect of duty in the lack of care.
Also badger as much as you can the care home , Just cause we are old and (sorry) but approaching end of life does not give them the right of neglect.
This is something that is preying on my kids minds (although I am reasonably quite well) they still worry for me and my wifes advancing ages and my already not too good health.
Fight the devils, and put them back in THEIR Box. No one's life should not matter ever.
A very sad situation indeed Jessie but I dare say the care home are doing their best. They probably have many to look after and are under pressure but I would have expected better from the GP. Things need to be discussed calmly and see what compromises can be made perhaps. Can you dear dad have his tv or radio on for a certain amount of time? Something can be worked out I’m sure.
Thinking of you all and I do empathise somewhat be cause my late mother in law had vascular dementia. Take care xxx
Hi Jessie , my heart goes our to you as I was in exactly the same place you are now with my Mum 3 years ago ,she had a massive cva and copd and developed vascular dementia, she couldn't move at all ,had to be hoisted around .Was at my house fir Sunday Lunch ,we dropped her and dad off at 6pm and by 8pm had a call from dad to say she'd had a stroke. She was in hospital then rehab then eventually a residential care home, the treatment she got was shocking ,no care had her druggedup ,I was hysterical, till I demanded a meeting with the manager, doctor, nurse, and social worker. They changed her class of care to nursing care and I got her moved immediately to a Lovely home we found ,total opposite ,so caring and so good with Mam ,pampered her ,sat with her ,really looked after her, sadly she died 5 month's later ,worst year of my life but I think they can't fight fir themselves so you have to ,don't be afraid to ask for things or consider somewhere else if you don't think your dad is getting the right care ,I hope you manage to sort something out as I know how ravaged you will be feeling over this .Terrible time for you ,sending special thoughts x
What an awful situation to be in. Are you able to visit your father every day, to make sure his radio or TV are turned on?
My Dad had to go and feed my Mum during her last illness. She had had three minor strokes which combined to remove everything except her hearing, and only lasted five weeks after that. I saw the poor care she had in Epsom and compared it to the care the patients I saw in Stirling were receiving, and struggled emotionally. The nurses in Epsom were doing their best, but their resources were very stretched.
It's awful, isn't it? My mum had to go and feed my dad during his last illness (Parkinson's) - a 2-bus journey each way and she did that every single day for about six months, even though her own health wasn't great. Just heartbreaking, all of it.
I'm just so sorry to hear about your father and the appalling reaction you got from his GP, that is shocking, it's all shocking.Is the home far from you?
In Suffolk my lovely sis was put in a 'nursing' home at the hospital's insistence after a massive stroke & 8 weeks in hospital where she had daily physio and speech therapy.
The mostly young carers were kind & did their best but hadn't a clue. Her drinking water was put on a table across the room, nowhere near her working right arm. The call bell was tucked under the mattress on her paralysed side. She was never even raised so she could see out of the window. Was during lockdown so only her husband could visit, one hour daily.
As soon as restrictions lifted I went over for one week in four, seeing her every day for a week, one hour by appointment which I always overstayed.
Within two months we managed to get excellent home carers in place, a hospital bed, an en-suite turned into a wet room for daily shower, a very comfy wheelchair, hoist etc to get her home.
It's my sis pays for it all, fortunately she has another property in her name, the £1500 pa rent just about covers the expenses but a Lasting Power of Attorney has to be in place to access funds. Brother in law is 78, he does his best, this shouldn't be his life now but it is. It's just so very very fortunate they have the means.
You need advice on benefits and the process to get help & services in place in your or your dad's area. Is there any possibility you have space for him in your home? I'm sorry to say I dont think it would be for too long. (I took my father in law in whilst in my 30s, (I thought my life was over, it was hard at times) but he was a lovely man and his last 6 months were with his family who loved him so I'm so happy about that.
Stay calm and polite in all your conversations with the home, any staff and all advisors especially that flipping GP (I'd record any conversations with him to use in the future).
I was always quietly assertive and polite in conversations with the nurse & managers at sister's home but was still threatened with being barred.
In two months not one shower, food & water put where she couldn't reach, toothbrush always dry, tv & radio always off. This was rated 'Good.
Try calling the helpline, they used to have benefits advisors. You could try speaking with Age UK for advice or Citizens Advice in his area.
Hi Jessie. My friend is in a similar situation with his dad - heart wrenching- so we have all been looking for an alternative placement. The best we have found is the Barchester group. Might be worth searching to see if there is one where you are and if it would be more suitable.
So sorry that you and your family are in this situation. I hope some of the good advice you've been given here will help you get to a better place. xxx
is he funded, if so demand a meeting with the social worker. Have that meeting with the manager she will or should want to help you get everything in place to make your dad comfortable and properly cared for. If possible get a best interest meeting set up. He should have a care plan that covers all his needs. As for staff being under paid or short staffed that is no excuse for poor care. I’ve managed residential care homes in the past and often cared for residents at “end of life”. Very rarely do they get moved to nursing care as the community nurses go into care homes daily if necessary. As for the GP make a compliant to the practice manager to begin with, no satisfaction take it further. Hope that helps good luck and wishing your dad well. If you feel the home cannot meet his needs then look for another but go there to get a feel, if you are asked to make an appointment to see around the place, give it a miss, we never restricted times for family to come and check us out. Good luck xx
Perhaps tell gp u want dad referring for palliative care to give him+ Yr family the support you need.usually hospice gets involvedd&they provide many services which can help.perhaps look into other care homes that encourage mobility and exercise when necessary.ask for dad to go yo communal lounge+ dining are so he is among people x
Thankyou so much for all your advice. My mum went to visit him today but he was fast asleep I did speak to the social worker today and outlined all my concerns she said she would raise it with her senior manager. I will also be trying for a meeting with the manager unfortunately I have a stress induced vocal condition and at times have complete lack of voice so this will be difficult but I won't stop fighting for what my dad needs. We picked us his post today and found a letter from the hospital for the vascular team,I rang them and let them know the situation I found out the GP should have contacted them to give an evidential report of why my dad in his opinion is not suitable for treatment so I'm holding onto that just now. It hasn't even done and the receptionist stated this isn't the first time she's encouraged something like this either!
Hi Jessie, I've read all the helpful and supportive replies. This is such a good forum to offload and share concerns. I'm a hospital volunteer on an elderly and dementia ward. What I do best is just "being there" and showing my face, letting the patient know that someone is with them, someone is focusing on them. So family and friends can be doing helpful. But good volunteers are gold dust. You might ask the care home if there are any on their books. My trump card is a Bluetooth speaker and a Spotify premium account. This enables me to play a patients favourite singer or piece of music. Music can transform the area where the patient is. I know many patients are enabled to recall song lyrics on hearing a long remembered song. But more than anything, just being there, showing a caring face, and listening .... showing the patient that you are listening ... That's so important. So gestures and expressions are good too. It's not always about words. Just being there is often enough to make a difference. ❤️
That moved me so much, Greenthorn - tears still in my eyes for your caring approach to people who have so little stimulation in their lives. Thanks for all you do.
Thanks Ergendl, it's taken me over 70 years to find what I'm good at. I think I'm a cross between Stan Laurel and Danny Kaye. I'm always looking for a fun side of things but I've also been with patients who are 'end of life'. Not all like music, but those that do get real comfort and energy from it. I really appreciate your kind comments.
Well done Greenthorn - I can only think being visited and music played will be a pleasant change from hospital routine.
I also believe playing a patients favourite song/music can relax and also, listening could also bring/nudge memories of lyrics maybe otherwise long forgotten.
I use music a lot when unwell - You Tube have free music from the 60s to classical, my fav's - Makes a difference,
Yes Ern, it does break the routine. Sometimes I find a family member just sitting by the bed. When I visit I often target a family member as my experience is that they cannot wait to tell stories of their loved one's, even off-loading their own troubles. And guess what, sometimes that loved one enjoys listening to that conversation with daughter or son. With music and a decent Bluetooth speaker I can transform a bay of 4 patients. I've had 3 ladies sing Rule Britannia together, whilst lying or sitting in bed, one of them being the mother of Catherine Tate ("Am I bothered") the comedian. I occasionally write up stories of my hospital visits. Thanks for commenting.
You are very welcome to give our Clinical Team a call if you wish, they can advise you on questions to ask regarding your fathers care plan in regards to his COPD and answer any questions you may have. Contact us on 0300 222 5800 We are here Mon- Fri 9.15-5pm
So update.My dad's blood pressure was insanely low yesterday and his resting heart rate was double what it should of been, they've got him on another round of doxycycline and steroids to determine if it's infection based or whether it's his COPD. The carehome have advised me to make a complaint against the doctor so I do think that's something I'll pursue as he's seemingly known for not being the most compassionate if you dare to disagree or even voice a difference of opinion on the situation. They're pushing me to sign the DNR, I've fallen out with my sibling over it and that's gone and made things much more stressful (e.g I think its selfish of us to not sign it and my sibling thinks it's selfish of us TO sign it) I'm just a walking ball of stress right now but reading your guys comments reminds me that I'm not alone x
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