Gravely concerned about my dad - recently diagnosed with Advanced HIV

[MindykinZ]

Hi all, I have signed up to this forum in the hope you may be able to give me some advice.

Two weeks ago my dad was diagnosed with advanced HIV. This was a huge shock to me, but one that shaken my dad to the core. He hasn't been a well man for a very long time. Around 16 years ago my dad was diagnosed with a very aggressive cancer of the oesophagus. He was taken into hospital and operation took place in which he had half of his stomach and oesophagus removed. In turn this meant that my dad has always had a small appetite and has suffered with pain caused by the scar tissue that was left from the operation. Over the years i have watched my dad slowly deteriorate and become very thin and weak. During the first 6 years whilst in remission unfortunately, my dad was then diagnosed with Hep C. My mum helped him through his treatment for this. It was a long process and caused my dad to be very sick but my mum was there every step of the way. Once his treatment was completed we were ecstatic to hear it had been successful, and my parents finally had something to look forward to and could start looking to the future.

My mum passed away in 2009 and since then, it seems my dad has been on a downward spiral. He became severely depressed and his appetite soon became non-existent. I took it upon myself to be there for him and try to show him that there are things to look forward to in life and he started picking up new hobbies and interests. He has never had a good appetite since his operation and it has left him with pain when eating but he enjoys his food and would eat little and often. Weighing in at around 60kg might not sound healthy but to my dad after what he had been through the doctor was happy with this.

The past 6 months I have watched my dad become painfully thin.  He has taken himself to and from the doctors countless times because he had problems with his mouth, it became very dry and started to split (very painful), he could no longer taste food and it was coated all over in a sticky residue. Amongst other things his skin started to become irritated and cracked and extremely dry. When i came to visit him 3 weeks ago, he still had no answer for his rapid weight loss and what was happening inside his mouth. I knew I had to take it into my own hands and wrote to his doctor of 16 years and asked at what point they will take my dad's condition seriously, being a six foot man weighing 45kg didn't seem to ring any alarm bells.  Finally he agreed that something needed to be done and reluctantly admitted him to hospital. A week later after two blood transfusions, blood tests and drips, my dad was given the heartbreaking news, that he was advanced HIV positive with a CD4 count of only 29, his specialist also explained that in her expert opinion it is likely that he had contracted HIV 10+ years ago.

At this point I saw my dad shut down. He is angry and confused at his doctors/specialists for not seeing this sooner having shown all symptoms for some time and that it should have been picked up when being diagnosed with Hep C. Unfortunately; his anger seems to be overshadowing his want/need to get better. He has a really positive specialist, she had explained to him that with treatment he could have a good quality of life, get back up to 60kg and have at least 10 years+.

My dad has become very vacant, they had to release him from hospital because the risk of infection within the hospital meant that it wasn't safe for him to be there. Whilst in there he already contracted shingles (which has since cleared up) Since being at home my dad has not eaten. I have tried everything to try and entice him to eat; he is not even considering the Fortijuice drinks just to get some calories in him at least. He tells me he is not hungry, even though I can hear that he is starving. He went into hospital at 46kg, came out at 45kg. After 5 days at home we had to meet his specialist and she weighed him and he was 42kg. I am gravely concerned about this, but don't know what to do. He is severely malnourished and will not consider eating anything.

Unfortunately I live two hours from him and I don't have any other help from anyone when looking after him. I have had to go home but call him at least twice a day, but each time i ask about food, he becomes increasingly aggressive and just ignores my requests/advice and that of the specialist. It is breaking my heart not being able to be there with him and if I knew it would make a difference I would speak to work and ensure that I could be there; but when I am he pushes me away and ignores me. He is taking his HIV treatment, but I am not sure what good this is when he isn't taking any nutrition. Once more since starting his medication for HIV has been getting severe diarrhoea and doesn’t have the energy to get himself to and from the toilet in time.

Can anyone suggest any advice? Should i get in touch with social services? I believe he needs round the clock care at the moment but we are being told that the hospital is not where he should be. I am seriously lost and need some help.

[mecch]

I think you should be looking for any and all support that is possible.  Social worker.  Daily home visit of nurse or health aide.  Or a clinic that will admit him.

If I understand it, you are the only link between him and any/all health care providers? 

Sounds like he needs daily nurse/aide visits while he is home. If he can't/won't eat for a few more days, than he needs long visits of home care, 8 or 16 hours...  Or he needs to be in a hospital or clinic. 

I have never heard of someone sick being sent home because a hospital is too "unhealthy" for the person. Where do you live?

Ask him if he has decided to die. Even if he says "no", try to discuss how he wants to die - "if that might happen", in a hospital or in a special hospice. Do you have hospices where you live?  Its not always obvious for someone who is very sick, but wants to die at home, or in hospice, not hospital.  What I mean, sorry to be so dark, is that your father could easily get so sick he will end up back in hospital in a critical state soon enough unless his health and daily behaviour changes soon.

Your dad might not be capable of decisions, thinking straight. Can you discuss that possibility with his doctor? If he is considered unable to care for himself, what next?