Just wondering if anyone can offer any words of advice.
My dad has CBD and has recently been in hospital for 6 weeks. He has now been released home for palliative care. He is non-verbal, he has no mobility, he is doubley incontinent and is bedbound. My mum now has carers that come in 4 times a day to help with his personal care as she cannot do it anymore.
Since he came home (a week ago tomorrow) they have had no contact from the District Nurses. Before we went into hospital they came weekly. I will be contacting them today to get this sorted as my dad was discharged with all sorts of medication that we have no clue what it is for, even vials of morphine which he has never had before. When he went into hospital he was only on two sorts of medication and now he has about six lots!
I'll get to the point, he has started to make these awful noises which I would describe as a cross between groaning and shouting. This can go on for hours. He also coughs. This tends to get worse at night and the last few nights he has been so loud my mum just cannot get any sleep. Does anyone have any experience of this and have any idea what we can do. My mum is absolutely exhausted and he has only been home a week. Thanks all.
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I’m so sorry to hear that your dad has CBD. My dad has PSP and they’re both terribly cruel diseases. Unfortunately I can’t advise with respect to the shouting and groaning, but I do know from my own experience in the U.K. that you really need to push the various medical professionals to get you the help you need. I had to write to my dad’s gp demanding a meeting before I finally got any level of support. it is totally all consuming and exhausting and that’s without having to deal with the disease itself. I do hope you get the support and help for both your dad and your mum and yourself.
Gosh your experience sounds so similar to mine. In hindsight, we should have not agreed to the discharge. Main advice is just keep making yourself heard. Email and keep emailing, keep leaving messages even when people dont phone back. I even found people on linkedin that worked for the agency I was trying to talk to, worked out the email and sent emails. My father eventually went to a resthome after 3.5 weeks. I and my mother were exhausted. The carers didnt really work, as you could not time his needs except for morning shower and even then the energy levels were not consistent.
No experience of that directly, but I'm sure there were other posts on this in the past in this forum. I can't seem to find the one I'm vaguely remembering when someone went through a stage, but here's an old one (it does get off topic, but some people enter their experiences):
Sorry to hear you have just been left by the medical World.
My dad also has CBD and my mom is his sole carer. With me helping when I can.
My dad is immobile, we use the hoist to transfer from bed to chair etc. He is double incontinent. He also has the rare form of dementia - courtesy of CBD! (Such an evil disease).
I'm not sure if you are in the UK but we have just been granted funding for continuing health care (CHC). My dad's neuro nurse completed the initial assessment. We went from there.
It means all cares are funded under the NHS. My dad has 4 care calls a day. If my mom requires overnight respite we can now request it.
My dad also attends the local day hospice 3 times a week. The hospice have been a fantastic support. They help get equipment for my dad,
He has physio, speech and language support. They are always in communication with the neuro nurse. It may be worth contacting your local hospice to see how they can help.
Thanks for this. It is so comforting to know we are not the only ones going through this awful situation.
We are currently going through the process of trying to get continuing healthcare and we have an assessment by phone on Thursday. Is there anything we should expect them to ask? Thanks
does he have a palliative care nurse, they are vital at this stage !! District nurses should come within 2 hours of you calling them to administer the drugs, I’ve just been through this , bless you I hope things have been sorted for you
No palliative care at all! I called the District Nurses yesterday and they claim that the hospital had not told them that my dad had been discharged. They are coming out to see him today so we will go from there to see what the next steps are. Thanks.
I was in a similar situation in Spring 2021. My late husband had PSP and was in hospital for 5 / 6 weeks ( that’s a whole other story! ) When he was due to be discharged, my daughter fought to get Fast Track CHC Funding. He was down as End of Life and in danger of falls. She said there was no way I ( I was 75 years old ) could cope with looking after him without constant support at home, where he’d said when verbal, that he wanted to be until the end. Amazingly we got it …. 24 hour care at home! And he went on to live for another 14 months! But the stress of acting as my husband’s advocate ( my daughter and I had activated the Health Power of Attorney ) took its toll badly on both our physical and mental health.
The district nurses should be liaising with the GP and the outreach palliative care team … In our case, this was a wonderful nurse from the local hospice who supported us right up to the end. It seems to be a postcode lottery as to how palliative care , leading upto the End of Life stage is provided in England. There should have been support before now about having “ the conversation “ about your Dad’s wishes, including a DNR notice and also putting in the CHC request on the family’s behalf. A specific Care Plan should be drawn up to be constantly reviewed and adjusted and carers looking after End of Life patients, need proper palliative training. This is a big grey area! Involve the PSPA Helpline people as the unpaid carer ( from the family generally ) is very much in danger of burnout. I’m slowly improving, 6 months after my husband’s death.
The only focus now is keeping your Dad feeling safe, calm and comfortable …..and LOVED. This is also true for your Mum and yourself.
Wishing you good luck and let me know if I can be of any further help. Susanne x
Hi, I can totally relate you what you are experiencing. My mum has CBD, went into hospital after contracting Covid back in February, was in there for 2 days to be rehydrated, was released with no follow up. Mum came out of hospital completely immobile, with double incontinence and cognitive issues which has been diagnosed as a rare form of dementia. It was a huge struggle, contending with the social care system as well as adapting to mums decline which was very quick. It was (and is) a very difficult time for my dad. I am only 10 mins down the road so I support. The best advice I can give is to contact your local hospice, if it wasn’t for them I am not sure where we would be. They have been a saviour and we couldn’t have done without them. We have hospice at home support for mum. They have supported by liaising with the district nurse team, the GP and occupation therapy. They also supported a fast track CHC application which was approved. Mum has severe anxiety, delusions and sleep problems but because of the dementia element we can’t rationalise with her. We rely on a hoist to enable mum to have a few hours a day in the lounge in a reclining armchair. We have carers 3 times a days. We have to feed and water mum, her swallow is still there but food is no longer a pleasure. Mum is on various tablets to minimise the distress she was feeling through anxiety and also to support sleep. These have helped dad get a better night sleep as it was very disrupted like what your family is experiencing. I hope this helps a little. I phoned the hospice and explained in detail the situation and they came to assess the situation within a couple of days. These diseases are devastating for all those affected directly or indirectly. My thoughts are with you.
Thanks. We have the local Hospice on hand if it comes to that and my mum gets regular calls from them to check in and see how she is doing which is lovely. We have the District Nurses set up to now visit once a week on a Wednesday and we have carers come in four times a day to do dad's personal care.
Dad is now on a puree diet to minimise the risk of him choking which he has done a few times and has to have thickeners in his drinks. He has lost a lot of weight. He is really susceptible to getting chest infections and in fact he was given antibiotics yesterday as he has another one.
My mum has a visit booked in this morning with an OT but don't think it will make a difference as dad is now bed bound unfortunately.
My dad came out of hospital with double incontinence and we have an assessment this afternoon to see whether we can be provided with the pads for him on prescription as they are quite expensive.
We have a conference call booked in tomorrow for the CHC Assessment and hopefully that gets approved (fingers crossed).
Dad definitely seems to have problems with sleeping during the night and this is just really affecting my mums rest. I am wondering whether there is anything we can ask the Dr for to calm him at night just to give my mum chance to sleep.
Like you, I only live 10-15 minutes down the road.
Its a nightmare we never thought we would be dealing with considering my dad is only 68.
My wife has been diagnosed for CBD since 2017. At this moment she lost all functions and she's only able to eat, look TV and going somewhere for shopping. As husband I nurse her at home with help of local nurse for bathing.
Since last 4 months she started shouting and groaning when she experiences inconvenienty.
She's very sensitive for cold, loud noises, touch on skin, etc. Positine and negative emotions frequently result in crying.
Everyday is a challenge in terms of having normal life, but I make her understand she'll never walk alone.
Champ, my mom had CBD. She was in similar condition for atleast 5 years! We too had 4 nurses - 2 in the day time and 2 at night. She also used to make a groaning noise but buddy please think of it as - he isn't doing it on purpose. Think of the millions of people who have severe pain, etc. One thing I would say is - this disease is better than so many others where the patient has to endure excruciating pain, etc. Seeing one of your nearest ones suffer like that is heartbreaking!!
So, thank Almighty that you can atleast take care of him, afford his treatment, etc. My mom was chair-bound for approx.. 9 years before she succumbed!
I hope God gives you strength to carry on and consider this as a blessing to be able to serve your dad as much as possible at times of his need. Cheers!
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