Dear all, I don’t find it easy to share online, but I’m feeling a bit lost and alone so giving it a go. My dad has non-fluent primary progressive aphasia - a rare dementia which primarily affects language. He has no speech now, and communicating is limited to thumbs up and down (though this is now going as takes such effort). He also has an atypical Parkinsonism. He is very weak, his swallow has been deteriorating for some time but rate of deterioration is now increasing rapidly. I saw him today having not been over since Thursday last week (a long time for me) and was shocked at home much weight he had lost since then - cheeks were hollow and jawbone protruding. He spends most of the day with his eyes closed, but not necessarily sleeping. He is still cognitively there and can follow what I say to him well and can signal a response. He lives at home with my mum who is 86 and has Alzheimer’s. We are lucky to have a good CHC package including waking nights, and they pay privately for day time care. Both the CHC and day time are delivered by an agency. My dad is not happy with the carers, and I also feel they aren’t right. It’s worse at the moment because I broke my ankle ten days ago and so cannot do much of the physical care for him that I had been doing when there (on the other hand I can sit with him and hold his hand which I know is a lot). I’m thinking perhaps he needs actual nursing care now rather than a carer. I’m not sure how to go about finding that, or if it would be better. My brother is also very involved and helpful, but I am the one with LPA for our parents (my brother has his own mental health challenges). I also have two children with high needs. Though it’s really hard sometimes with my parents, especially as my mother is struggling, and can get angry and distressed, and can’t remember what my dad can and can’t do / eat etc. I do love being with them, and I want as much time with my dad as I can. And at the same time it also exhausts me. I’m not sure what I’m saying really, just it’s feeling hard and I’m worried for my dad. If anyone has had nursing care for a loved one at home I’d love to hear about it. Thanks all, and take care
CHC if awarded is supposed to cover ALL care needs, whether at home or in a nursing home, so I don’t understand why you are having to pay extra?
Have you asked for a review as his condition has worsened.
Is it worth looking into Hospices? It does not sound as if the present situation is viable? I agree with @bowlingbun it is so hard to get CHC but I thought it covered all of the costs?
Sorry you are going through this and your mother sounds very demanding too with regard to the Dementia. They really need 24/7 care to keep them safe?
Thank you both. Re CHC he is due a review soon. I think there is a good case now to make that he needs more as feeding takes all his waking time - and so not possible to do in the hours that he was awarded. I have arranged palliative care visit for Monday and will discuss with nurse then.
I’m going to write about what happened with CHC here in case it’s helpful to others, if not of interest skip this para! Dad was awarded CHC through fast track about 3 months ago- his palliative care nurse made the application, he was very poorly with a chest infection at the time (for which he is at high risk), we didn’t expect him to keep going as long as he has (he is very tough). It was very confusing and stressful initially - the agency we had been using tried to charge a ‘top up’ fee for the CHC hours - I was pretty sure this wasn’t right but took a while to understand and in the end they agreed to cover hours for the rate CHC had awarded (I simply said my parents would not pay anything towards hours which were funded by CHC). This and some other issues led to me changing agency. I also received advice from CHC which I knew to be incorrect - that they did ask family members to step in, that they only had so much budget and needed to spread hours out amongst different people and other things which are clearly against the National Framework for CHC. And generally communication with CHC was terrible, we weren’t formally notified of the award for ages and I had no idea what was going on. Palliative care nurse and social worker were good but also could not get clear information from CHC. CHC was undergoing a big change at this point and things did get better once they were through that, but it was a very stressful time trying to make sense of it all and to fight for what I knew dad was entitled to. Worrying about additional costs being charged was the pits, and being told things I knew to be against the Framework by CHC staff was so upsetting, and wasting time on long phone calls while they said it was more than frustrating. I simply didn’t have energy to complain formally. If anyone has similar experiences I have read the Framework carefully and can share particularly helpful sections. I also had helpful advice from BEACON: https://beaconchc.co.uk.
It is true that CHC funding should cover all assessed need - the issue is getting agreement on what those needs are. Dad has what is considered a very generous CHC package - he has 12 hour waking night care (the main reason he got this is that he is at risk of aspiration at night as he can’t clear saliva from his mouth, he is also unable to reposition himself in bed, needs his pad changed, and needs pain medication at night), and then he has 2 hours 45 minutes of ‘double-up’ care (2 carers) in the day. They have allowed us to combine this into one longer visit rather than 3 separate visits. This care is to help him wash and dress and to feed him (and the idea was that three visits could cover washing and meals). There is definitely a case to make at review that the day-time hours are no longer sufficient as it takes all the time dad is awake to get some food into him at the moment, but as far as CHC was concerned, if dad is in his recliner, and not at risk - he can no longer stand unaided so less risk of falling - then he does not need CHC care for those hours. What has been very difficult and I can’t find a way to have taken into consideration, is that he is categorically not safe if left alone with my mum as she will try to feed him all sorts of foods he can’t eat with a high risk of him choking, she might try and take him to the toilet, and if she did manage that without a fall, would be likely to leave him there and forget where he was. She can also get very angry with him as she forgets that he can’t speak so is upset that he is ‘ignoring her’. But, the CHC funding will not take account of mum’s Alzheimer’s or the impact this has on dad. A nursing home would in many ways be the obvious answer - and it is possible/likely that CHC funding would cover that. But, dad has always indicated he wants to stay home and stay with mum, and they do have the savings to pay for private care for the hours CHC doesn’t cover. I was also hopeful that a couples carer would be able to help my mum with her medications, but mum has refused any assistance and the carer hasn’t made any inroads (that’s another story - how to get my mum the support she needs).
Dad does have the possibility of going to a hospice for respite care (if he went I expect he would be unlikely to return home). It is a hospice he knows a bit as he went a few times to a day centre there. I have wondered about it. It isn’t what he wants, and it would be awful for mum, they have been married 55 years, lived in the same house all that time, and while she gets very upset and angry with him they still love each other dearly.
If I can find a way to get the right care for him at home that is what I’d like to do, but I have found it so hard to find that - he has had some wonderful carers from the previous agency, but the agency scheduling was inconsistent, they couldn’t guarantee we would get the carers that worked best with dad and there were simply too many different carers - it wasn’t possible for me to communicate dad’s changing needs and I was run ragged trying to keep up with it all.
I appreciate the comment about viability - I’m not good at admitting when I’ve done all I can do. I’m not sure we’re quite there yet, but perhaps soon. I’ve also done a lot of thinking about how I’ve always been scared of my mum, she is very demanding, especially of me, and finds it easy to show her displeasure - Alzheimer’s has made this worse. She is also wonderful and I know thinks the world of me, I’m trying to learn how to stand up for myself better and be less scared of disappointing her.
@KitKat103 I do feel for you - it is obvious that you love and want the best for both of your parents. I do worry though that your father is at risk at home? Is there anyway that a live in carer could be employed? I realise that the cost would be horrendous and it is very difficult to judge how long ‘end of life care’ would be needed for.
Thank you @Alison_1970 - they do have a live-in carer, and I do think he isn’t at risk of immediate danger at home, its more that the carer, though nice, isn’t right for my dad or his needs, and I was thinking maybe a qualified nurse is what is needed now - at least for some hours. I feel like they are paying a huge amount for the live-in carer and it’s not meeting need. I’m also well aware that this is the normal progression of the disease - he will get to the point where he can’t swallow at all, and also that no-one is going to care for him as I would because they don’t know him. Ive had lots of conversations with the agency about the care and they understand and are responsive to my concerns, but they don’t have someone else they think suitable available till December, and I don’t know that he will still be alive then. I’ll talk to palliative care nurse Monday, follow up on CHC review date and take it from there. It’s been very helpful just to write it all down.
Your parents are very lucky to have you. I do agree that maybe nursing care the only viable option. Can only send cyber hugs. I agree writing things down and working through ‘step by step’ is a good way forward.
@KitKat103 my Auntie had dementia and my uncle had mobility issues, she got too hard for him to manage. They moved into the same care/ nursing home. Had seperate rooms - she was in the dementia section but spent time together each day, both getting the support they needed. Just a thought.
Your parents have a live in carer they are paying for when dad is entitled to all the care he needs free of charge via CHC?! Something is seriously wrong here. Talk to the Carers UK helpline or Google “Care to be different” and look at the Grogan case.