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I am really worried about my dad's physical and mental health. Scared he may die soon.

(13 Posts)
VivaLeBeaver Sat 15-Oct-11 18:54:32

3 years ago my dad was fit and healthy, only in his early 60s. One weekend he was ten very ill, very suddenly which resulted in an emergency hospital admission and he nearly died. He was in hospital for six months and it was 4 months before they said they thought they knew what was wrong with him.

He's been diagnosed with systemic vasculitis which is very hard to treat successfully. He is on as much treatment as is known about, but I get the impression the condition isn't very well understood. Local hospital have been very good and admitted he is beyond their help and referred him to the national specialism hospital for it. I've no complaints about his treatment, there just isn't a cure.

He has had several relapses over the last 2.5 years that have resulted in hospital admissions. His general trend is downwards.

He's lost most of his hearing. His blood pressure runs at about 200/120 and they can't get it down even with loads of medication. He has terrible constant crushing pain in his head which painkillers don't help with. He has tinnitus which drives him nuts. His legs hurt like a bad muscle ache all the time. His balance isn't very good, he has hardly any energy.

He finds walking difficult, he says its like he hits an invisable forcefield and that he's having to push through soup to walk anywhere. He has a walker and also a electric scooter thing.

He lives on his own though he does have a girlfriend close by and he goes to stay with her when he's feeling worse than normal. After his first hospital admission he could still walk to the local shops and back in about 15 minutes with his walker. Now he says it takes about 90 mins as he has to lean up a wall and rest every few paces. He has to rest 2 or 3 times when going up the stairs.

I'm scared he's going to have a stroke or a heart attack with his BP being so high.

I just spoke to him today and he sounded so depressed. He said his whole life is quite shit. That he doesn't have the energy to do anything even more. He says that the last couple of weeks his appetite has gone and he can't eat. He can't even force himself to eat as he finds it an actual struggle. He says he struggles to even have a cup pf coffee now.

He's only 64 now. He has the lifestyle of a 90 year old so I can understand why he feels so down. I think at first he tried to keep himself busy doing sedentary things such as watching TV, family tree stuff but he's finding that too much now. Its just so fucking unfair.

RobynLou Sat 15-Oct-11 18:58:02

thats sounds awful, especially as he's so young. Is he getting all the help he's entitled to?

VivaLeBeaver Sat 15-Oct-11 19:18:53

He's seeing the consultant at regular intervals and if he feels the need he can ring the consultant's secretary at any time and she will squeeze him in to see him within days so thats really good. He's on all the medication they feel he needs to be on and has had every test under the sun.

He's been given hearing aids which help a bit and has physio which doesn't help.

He doesn't need any social services help as thankfully his partner is happy for him to stay with her when he needs to and he's been there for months now. If they ever split up we'd be in the shit though and would need to sort something out asap. He can't live on his own, not without a lot of help. I'd happily have him here but only have a 3 bed house and we don't have the space.

doughnutty Sat 15-Oct-11 19:26:14

No advice really, just lots of sympathy. I watched my mum go through a similar decline and it is really hard, especially when they were very active and social before. Try to make sure he's still getting visited by friends if he can't get out. He must be feeling down already without getting isolated.

Have a ((hug)). Not much use but it's all I've got. Try to get someone IRL to give you a shoulder too. It's harder to stay upbeat in their company if you have no other outlet for your grief. And it is grief of a sort because they're not the person they were. He will be grieving too, for his old life sad

VivaLeBeaver Sat 15-Oct-11 19:28:52

Thanks.

Do you know nobody comes to see him anymore which I think is totally shit. Especially as he used to work at the cathedral in town and still lives within walking distance. Out of sight, out of mind.

doughnutty Sat 15-Oct-11 19:51:02

Might be worth calling the priest/minister (sorry, not sure of the correct term) to see if they could call round to see him. Presumably, he/she has to do visits to members of the congregation who aren't fit enough to attend services. Though tempted to say you shouldn't have to ask.

They might also be able to rally round some other people to pop in too. There will always be nosy old ladies people willing to do things like this in any church.

It's one of the things that upsets me the most since my mum died, that my dad doesn't get visited the same as most of the visitors were mums friends. Luckily, my DSis is very close by and pops in most days and I try to go in at least a couple of times a week.

pinkyp Sat 15-Oct-11 19:58:46

So sorry to hear about your dad, is there anything you could do to cheer him up. Get him his fave films, is there a group he could go to with people of a similar age/interests.

VivaLeBeaver Sat 15-Oct-11 20:30:58

He says he doesn't feel well enough to go out and do anything/socialise.

I don't really know what else to suggest to him to keep him interested or occupied. He can't enjoy music anymore which he used to and too much reading is a strain. I think there's only so much homes under the hammer a person can take.

Fixture Sun 16-Oct-11 09:39:49

Sorry to hear about your Dad's illness. Is he now in the national specialism hospital? Can you ask for a meeting with his consultant to discuss what they're going to do next?

The cathedral should definitely send visitors. There should be a team of people for this so it doesn't all fall to the vicar - and if there isn't, I'd be asking why not?

VivaLeBeaver Sun 16-Oct-11 10:26:31

I haven't seen his consultant but I think dad is good at asking questions. The consultant admits they don't really know what to do with him, they don't know why he has the lethargy and muscle weakness. They're gradually reducing his steroids and they keep muttering that some of the symptoms could be due to the steroids. But every time the steroids get to a certain level he has another relapse.

My mum [his ex wife] has said to the cathedral clergy that she thinks they ought to be visiting more and it hasn't made any difference.

Fixture Sun 16-Oct-11 10:49:17

How about asking for a second opinion from another consultant? You're entitled to this, and it doesn't mean you don't trust the first consultant it just means someone else may have other experience to add.

Sorry the clergy haven't taken the hint. Your mum may have to spell it out more - "could I arrange for someone to visit X this weekend please?" They may have just taken it as general feedback rather than a specific request.

Footle Sun 16-Oct-11 12:10:15

Message withdrawn at poster's request.

VivaLeBeaver Sun 16-Oct-11 17:40:26

I wouldn't be surprised if he is putting barriers up against people coming to see him. I'll talk to him tomorrow about how much he actually wants visiting, maybe he does prefer it how it is.

He's got quite a few consultants involved in his care. We had the first consultant at the local hospital who consulted two other consultants. The consultant at the specialist hospital is our second opinion who we asked for, he is meant to be the top bloke in the uk in this area. This guy also gets my dad to see people like ent consultants and dermatology consultants for advice about some of the side effects which is good.

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