Hi everyone,
Hoping for some pointers from the knowledgeable people here.
My husband has PD and I am his carer. He’d been doing pretty well with it but unfortunately got sepsis and has been pretty poorly in hospital for about 8 weeks now. He has gone from being reasonably independent with a little support from me, to being unable to walk for more than a few steps, doubly incontinent and, although much more coherent than he has been, he is still hallucinating off and on.
The hospital now want to discharge him and are pressing me quite hard on this. The discharge plan seems to be one phone call from the OT which doesn’t seem quite right to me. However, we have no downstairs bathroom and he will not be able to manage the stairs. I am in the process of clearing a downstairs room for a bedroom, and I am told we are not being offered a hospital bed “because he can stand”. Therefore I need to buy a bed, fast.
Realistically he is going to spend a lot of time in bed and needs to be comfortable and safe. If I am going to have to buy a bed I would rather get an adjustable hospital bed now. Also, without a downstairs bathroom it’s going to have to be bed baths until I can get a builder in to put in a bathroom, so I want a raiseable bed so I don’t mess up my back. I know they’re quite expensive, but speed of delivery is going to be the selling point here. I haven’t a clue because I haven’t had to think about adapting the house up to now and I’m going to have to do it rather fast.
Hello Catherine I agree with you, the discharge seems to be a bit lacking to say the least. Given what you say of your home situation, unless they see your husband’s current health problems as temporary (ie he is expected to regain his pre admission health which seems a little unlikely and even if it does it won’t be fast) it would be unusual for a discharge plan to be put in place without a home visit by an occupational therapist. Is a package of care being put in place to help you or are effectively you on your own.
Also putting a bathroom downstairs is not a little job and where will your husband be as and when work does start - the noise, brick dust and general disruption may not be something he can live with. Again you’re talking as if you have to sort it all out yourself.
I know the hospital are pushing you but I really do think you need to find out exactly what the discharge plan is and don’t be bounced into a quick decision. It may be helpful to call the helpline first and see what they say.
Please let me know how you get on. If you still want to go ahead I will give you a few pointers
Tot
The NHS has community stores which issue beds this is run by the council and NHS you need to care plan and tell them your needs they also provide hoists if required and wheel chairs. Do not agree until his care needs are provided , it may be short time loan . You have the strong hand in this you will be surprised whats available just sitting in the stores. Good luck !!!
Query his discharge plan Is this an unsafe discharge??. Insist on an OT assessment before discharge. It is very difficult to deal with someone who is incontinent without a hospital bed you will end up hurting your back.
It sounds as if the sepsis has caused delirium - has he been assessed for this and what was the outcome. Does the discharge plan include visits from carers. Has he been referred to intermediate care in the community (ICC) for 6 weeks - this will include visits from OT, physio, continence team and community nurses.
Hospitals are under intense pressure to free up beds, frequently allowing vulnerable patients home too soon. The result is too often readmission after a few days. The truth is this too often affects the elderly who have chronic conditions.
I am sorry if it feels as if I am bombarding you with what needs to be done especially when you will have been through the trauma and distress of a prolonged hospital stay and your husband’s delirium. Unfortunately it is a steep learning curve that the best interests of patients are too often compromised by the pressure put on clinical staff by management desperate to free up beds.
I sincerely hope you will manage to get the help you obviously need and his transfer home will be managed smoothly without you feeling overwhelmed by his care needs
Thank you Tot and others for your sage words. I’m sorry I haven’t replied sooner. Wanted to give you an update once things were clearer which has taken a little while. It has been an intensely stressful experience. I think I will start a new thread specifically on hospital discharge as my experience may be of use to others.
I think that is an excellent idea Catherine when you have the energy to do so, personal experience is so valuable. Hope you now have the right help and support available to both you and your husband so that he can be discharged home safely.
My best wishes to you both.
Tot
