Good morning,
My father was diagnosed with Parkinson’s in2021. He has deteriorated rapidly and has spent the past 5 months between hospital and a rehabilitation centre. My parents house has not been fit for his needs for some time but for whatever reason they have not taken on advice to either move or adapt. That is in the past. In early July his consultant recommended a nursing home setting. Neither parent is able to accept this is the only option. We had a multi disciplinary meeting last week and I have spent the past week contacting local homes to try and find a suitable place for Dad to live out whatever time is left with some dignity. We have a social worker who is helping but almost a week on no progress has been made. I did have a lovely home lined up last week until they read his nursing assessment at which point they withdrew their offer. I am really stuck as to what to do. He does not need one to one, but he does need a nursing setting possibly with EMD. He has no behavioural issues he is just very weak and very frail. I feel quite isolated as whilst all the homes I have called are lovely there is clearly a real lack of beds. My Mum keeps rejecting suggestions when the reality is we will just need to look at options available in the end. I appreciate I cannot change the past but they have ignored my suggestions and opinions as to how we could make things better all round. They do not value my opinions on anything yet now expect me to organise this. I really just want to hear from others in a similar situation. Thanks in advance. If I am in the wrong area please redirect me. For information I have tried to get Mum involved with Parkinson’s helpline but she tells me they were no use - a lie as I have called and they were super helpful.
Hi and welcome to the forum @LaColombe. You’ll find everyone here very friendly and I’m sure someone will be along to say hello very soon.
You’re dealing with a very tricky situation and I can only imagine how stressful and frustrating this must feel. It’s not unusual for people to resist leaving the familiarity and comfort of their home and face the fact they aren’t able to cope there anymore. Unfortunately, you’re not the one who needs to be persuaded this might be the best or only solution. Can you get any counselling or advice on this from the nursing homes themselves? It’s something they would be very familiar with. It sounds like you’re familiar with our helpline and I’d encourage you to keep in touch with them, since they will definitely be able to support you on this. Another thing is to do a search in the forum for ‘Nursing home’ to see what others have said in the past. There’s a wealth of information in the forum.
Being a carer is always a physical and emotional challenge and in your case there seems to be some history that gets in the way of your parents trusting your decisions. This makes things even harder. The most important thing, however, is that you meet your own needs. Our page on taking care of yourself is so important: Caring for someone with Parkinson's.
I do hope that there’s some light ahead for you.
Take care 
Janice
Forum Moderation Team
Good evening LaColombe … Sounds a nightmare situation. How about a live in carer ?
Another option is looking for a nursing home outside your immediate area?
Have you googled for experts in the nursing field?
How about your local NHS for suggestions
How about carehome.uk ?
Best of luck.
Steve2?
Hello LaColombe
My apologies if you know this but it is not clear to me what your Dad’s care needs actually are - given this may I ask if you know why the home you had found, withdrew their offer on reading his assessment? I’m assuming that was a nursing home and was wondering if they had decided he did not meet their criteria. Nursing homes is the term often used in a general sense and often used interchangeably with care home. It can cause confusion because there is a difference between a nursing home and a care home. In simple terms a nursing home is where at least part of an individual’s care needs to be administered by a qualified practitioner - a nurse. In a general care home setting an indivual’s care needs can be met by trained general staff. I am wondering if the care home withrew their offer because, in their opinion, your father doesn’t have nursing care needs. I think it is important to understand the difference because it could potentially give you a wider choice of homes. I hope that makes sense to you.
I’m not sure I can offer much help on how you manage the general but complex home situation of your parents and my thinking mirrors the comments made by JaniceP. I think all you can do is keep plugging away pretty much as you are doing. Sometimes you need to drip feed a solution to an issue ie don’'t make a big thing of it but mention it whenever you can; it can take time and patience but usually the individual will accept what you are trying to do and why eventually - hopefully then you would be in a position to help them move forward. I would just add however that however obvious it may seem to you and everyone else, your parents retain the right to make whatever decision they want even if this seems like a bad decision to everyonr else.
Tot
Dear Colombe
This is a complex situation. You do not say how your father’s care needs are funded. If he needs one to one care then many nursing homes particularly the good ones will not take on his care simply because of very low profit margins and issues with staffing levels. You may well get him into a nursing home but the standard of care will not necessarily be at the level you would want for your father.
My husband is cared for at home 24/7 and has been for the last four years. At the. beginning of this year the complex care he required from a specialist agency fell below an acceptable level.
After investigating other care agencies , we found only one that could provide the expertise and good professional management required.
I was also given a list of nursing homes that would take funded patients. The only one that could provide a level of care for his complex needs refused to take him. All the others were substandard, some failing.
I would take advice from an experienced Parkinson’s specialist nurse and also familiarise yourself with the CQC reports for the various homes. It is worth reading through them as some may have been downgraded for relatively trivial issues, whilst others may have serious issues such as coercive control with those who have dementia.
Additionally investigate the training in place for end of life care. Marie Curie training is recommended not just as a one off but regularly, at least annually. Also training for dealing with dementia and challenging behaviour, not to mention physio, group therapies etc if this is relevant
At the moment the care system is in crisis as is the NHS, particularly when dealing with chronic conditions where there is no defined pathway.
Adult social care has a funding crisis with many social workers choosing to work with agencies due to pressure of work.
Yes this is really depressing, but it is possible to navigate through the system with the right information. Ideally you will find someone to advocate for you, hopefully your social worker with expertise from yr Parkinson’s nurse.
I truly understand your frustration on many levels. It is unfortunate your parents will not have the insight and understanding to make an informed decision, this is not unusual.
I hope this information has not bamboozled you too much and you will be able to find a solution soon
Much love to you
I am sorry Colombo just reread yr letter and yr father does not need one to one care but I suspect frail after spending so long in hospital.
My husband was in hospital for six months and improved significantly after discharge.
Unfortunately now four years later his care is being transferred to a specialist consultant from our local hospice.
These last four years seem to have been on ongoing battle to get him the best care and funding. I have dealt with many of the issues you are now facing and hope I have been of some help.
Thanks so much for all the replies. I’ve been offered a place in a nursing home really close to my mother’s home but she won’t even consider it. I’ve a meeting with Dads consultant today and am hoping he can persuade her that our choices are now very limited and she’s got to be open minded. Will report back.
It’s good news re the nursing home place. I hope you with the consultant’s support, can help your parents understand that it is the best option. I wish you luck.
Tot
Hello LaColombe … You don’t say whether it is BOTH your parent’s wishes to keep Dad at home. Is your Dad able to understand their situation? Is your Mum his sole carer?
Best wishes
Steve2
Quick update. We have been offered a place - to clarify we are self funding. The home can meet Dad’s current and future needs. It is ideally located within 1 mile of where Mum lives. I have had contact with the manager who I really gelled with. Mum will have to accept this situation. I have a referral to see a geriatric specialist as I think she really needs help. Fingers crossed I can get Dad in soon so we can address the next phase of life. All of this could have been so much less complicated but I think it is just best for now to try and look forwards rather than reflecting on options dismissed by my parents. I realise Dad is not getting better but I am confident a personal space with social interaction will be beneficial in providing him with some dignity and care in whatever time he has left. Thanks for all the advice and support. You are all wonderful.
Glad it worked out LaColombe.
Best wishes
Steve2
A wonderfully clear and helpful reply. My husband, 67, has rapidly escalating Parkinsons dementia, as well as Parkinsons with dyskinesias (uncontrollable writhing) drooling and diabetes type 1. He’s in hospital. He has been assessed as no medical capacity as he no longer understands how and when to calculate and self administer appropriate insulin jabs and diet. Next of kin are not obliged to be a carer nor provide medical intervention. (Not that the diabetes nurses let on he is supposed to self administer
when they knew for 9 long months that I was trying to do it in the face of him playing awkward and stuffing himself with the wrong foods) Social services took over and it has been deemed most practical and economical he goes into a nursing home. The hospital discharge social worker has to send a report to local nursing homes to accept him or not. Apparently my husbands combined conditions are far too complex for many nursing homes. Yet all his hospital outpatients clinics stayed deathly silent about additional help they could have offered in the last 18 months until I was stuck at home 247 365 unable to leave him for fear he’d abuse his medication or food or damage the house. Hospital discharge social workers do try and imply a patient is fit for discharge and when can you take them home. The answer is never. No nay never no more. Fit for release only means the hospital cannot cure chronic conditions and the patient is as (un) fit as they ever will be. Don’t fall for the emotional blackmail. The hospital and Social services will do their best to take your desired area into account. You loved one is an adult and not your responsibility. Social services have ultimate responsibility