h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

This weekend we took my father to a hospice in town. It's a small place, about fifteen beds, mostly cancer patients in the last stages, also some stroke and automobile accident (brain damage mostly) victims. About equally white and non-white.

My father has become even weaker, and doesn't feel my mother and I can take proper care of him any more, so he asked that we check him in there. He's been there a couple of days, and I have some concerns. The biggest being, that they over-drugged him. Today and yesterday he's almost been in a total stupor, hardly capable of speaking or doing anything else. The problem I have with this is, he's supposed to drink lots of water - he got badly dehydrated a while ago when he didn't. But he can't pour himself a glass of water and drink it, in his present condition!

Another problem I have is the food they're giving him. It's OK ... they're giving him pureed food ... but it's not enough! Three small bowls a day ... his total daily food intake is about half of what I eat at a single meal! He can't possibly survive long-term on such meagre rations.

HE doesn't mind since he has no appetite at all ... he has to be spoon-fed and even the little amount of food they give him, seems to be too much for him ... but he *needs nutrition*!!!

I just hope I can manage to speak these concerns to some people there. Apart from that they seem to take goo care of him.

Also he went for his first radiation therapy session today. This is for the brain cancer ... the chemotherapy won't work for that. They've built a new treatment centre in town and we took him there. Well first of all, initially, they told us that he would be taken there nine o' clock this morning. The hospice people (they are working closely together with my dad's oncologist Dr. Malan) SAID that THEY would take him to the treatment centre for his radiation therapy; we (my mom and I) would go there at nine to be with him. So my mom and I got up early to finish preparations to be there in time ... then ... the equipment wasn't ready yet, and they didn't take my dad ... we ended up waiting until two in the afternoon when finally the treatment centre phoned us.

AND ... they said that WE (my mom and I) had to take my dad. We don't have a regular car (ours is currently being repaired after having been in an accident about two months ago), we only have a pickup truck with seats for two. So we had to get my dad in the pickup and I had to ride to the hospital on the back.

There ... the equipment was STILL not ready. We had to wait in the reception area for over half an hour. AND my dad is so weak he can hardly even *sit*. It was torture for him, just sitting there in the wheel chair until they finally were ready to take him in.

He was the very first person to be treated by their new radiation unit. There was even a journalist to take a picture of him and write a story about it.

Sigh. FINALLY they had done with him and returned him to us, we took him back to the hospice and got him back in bed.

We have to do this nine more times over the next two weeks.

Oh, Willem I am so sorry. That sounds an awful ordeal for your poor Dad, and you and your Mom too. I thought things were bad here, but fancy having to take him to the unit yourselves when you had such unsuitable transport.

It is good that it was your Dad's own decision to go in, though it must be hard for you both.

I would certainly talk to someone about the food being offered, but I suspect he couldn't eat more anyway. I suppose they might give him food intravenously, but maybe that is not an option. Talk to them anyway, perhaps they can put your mind at rest or at least explain.

They seem to over drug people here too in hospitals, but our hospices are marvellous, supporting the families as well as the patients.

Take care of yourself and your Mom. I will be thinking of you. You must feel very lonely at the moment, it is a tough thing to have to go through.



Websailor

My mom had to have a feeding tube, the last weeks... She had brain cancer, too, untreatable, and had lost the ability to swallow.

Willem, I'm very sorry to hear this. Can you buy (or ask the hospice to do it) some special food with lots of nutrients (it is called astronaut food here, amongst other things). They could maybe add a few spoonfuls of that to each meal they give him?

I'd speak to them first. I'm sure they know what they're doing and which food portions are appropriate

Very dear Willem

Thank you for sharing these precious moments with us.

E have been thinking of you and wondering how Pa was coping. As usual with his usual fortitude and Faith.

I echo everything which WS has said and expressed to beautifully.

it is wonderful the facilities which are on your doorstep. Even if it does include travelling in a small truck. at least it was a set of wheels and I am sure you enjoyed the breeze in your hair. It would have been a different story if ithad been raining. !1

Ever so much love and courage to you all. You are sharing the ebbing of a life which has been given and lent to you and you are making it so much easier and bearable by your great love and respect for a wonderful Husband and Tather.

With a great deal of love and affection

Christiane
AR80
Tuesday 18/I/2919 8.10 GMT

Hello Everyone and thanks for the comments!

We took my dad to radiation therapy again yesterday and this morning. It's going a bit better now. It's still a bit difficult to get him out of bed and into the wheelchair, out of the wheelchair into the car, and out of the car into another wheelchair. My great concern is that I might hurt him ... I try to be gentle but he's very frail. He currently has a large black bruise on his left arm, probably from being 'handled' by my mom and myself. He also complains of pain in his back and legs, sometimes when we're just lightly (as it feels to us) touching him.

Yesterday they let us in to see the devices they're treating him with. The main thing is a huge radiation unit, very modern, it swivels on a horizontal axis to irradiate him from different angles while he's lying in the same position. They restrain his head with a kind of 'tape'. There are something like twelve different computer screens showing the technicians what's going on. We left the room when the radiation started but we could see what was going on in there on two separate viewing screens.

This is the kind of work my sister is also doing ... she's studying oncology and specifically, radiation therapy. I'll certainly speak with her about all this when I meet her again.

The radiation treatment itself only takes a few minutes. Yesterday and today, they promptly took him in as soon as we got to the centre ... no more waiting.

Apart from that ... I've spoken with the people at the hospice about the food; they insist they're giving him enough; I figure it must be a highly nutritious kind of 'thing' (I don't think they will understand the term 'astronaut food'), so I won't complain ... but I'll watch him anyways to see if he becomes any more emaciated. My mom and I are bringing him occasional bits of extra food ... a small yoghurt, today, and he ate most of it. He still has very little appetite.

He's being visited and inspected by a doctor every day ... either his oncologist Dr. Malan or another, Dr. von Ludwig. She was here today and says he's not doing too badly. He's a bit dehydrated ... but we 'made' him drink some water. If it gets bad, they will give him some intravenous fluids and perhaps food as well.

He's in a state of not really knowing what's going on, not really responding, he can only utter a word or two, softly; in no way can he carry on a conversation. He seems to find it difficult to express his needs to us ... I only hope he's not suffering too badly; at least, a few times when we asked him if he was in pain, he shook his head to say no, and like I said above, he does complain if something we do is hurting him.

Dr. Malan wants to start giving him chemotherapy tomorrow ... frankly, we're in doubt it would do much good ... but then again, it might! He's responded quite well the previous time. Though he looks in very bad shape right now ... it is not impossible that he might recover and at least have a bit more quality time on this planet ...

My sister interned in a nursing home, and she says that if new residents came in who were malnourished, they would give them protein shakes - but also banana juice (that horrible "nectar" stuff with a bit of banana pulp and lots of sugar), simply because it was a good way to get lots of calories into them fast. And also because older people tend to prefer sweet flavours. Perhaps something like that would work if you're bringing him extras

Good luck to all of you

Hi Mala, thanks for the info about your sister's work! We're bringing my dad small cups of yoghurt, he seems to enjoy them, and they're sweet enough ... he doesn't really seem to have much of a sense of taste any more, and no appetite whatsoever. He eats under protest ... he keeps on indicating he's had enough and we need to keep prompting him, 'just one more spoonful' ...

Sigh. He's been for radiation therapy session number five today ...he gets a break over the weekend, and then next week it's another five sessions, and then we'll see.

He's made it into the local newspaper, The Observer, which came out yesterday. The story is on the first page, about this new expensive high-tech cancer treatment center. Then on page two is his photo, with his doctor and one of the radiotherapists who administer the treatment.

The unit with which they treat him, looks very much like this one:

http://en.wikipedia.org/wiki/File:Clinac_2100_C_with_patient.JPG

You can get an idea there of how it 'swivels' to radiate from different sides.

There's no sign yet if any of this is 'working'. My dad still seems to be backsliding. It's nerve-wracking. It's as if he's no longer a parent, he's now our child, he needs help with everything, he can't even turn to lie on his side in bed on his own. He can barely speak any more ... just hoarsely whisper a word, and repeat it a few times because we can't make it out the first time. We can see he's in distress, but he can't tell us properly what's going on. We feel so helpless, we just don't know what to do for him.

This disease is progressively breaking him down, stripping him down. His abilities and faculties are departing from him one by one. It's like he's eroding, every day there's a little less of him left.

But like I said to a nurse at the treatment centre, while there's life, there's hope. People in worse condition than he is, have nevertheless made remarkable recoveries.

So we just go on from day to day. It's so hard to see him like this! He got badly dehydrated again and today they put him on an IV line. Was a bit tricky getting him in and out of the pickup, the wheelchair etc. to transport him to the treatment centre, without disturbing the IV. We *might* get the help of an ambulance next week, so we load him in and out of the vehicle in his wheelchair ... this will make a remarkable difference.

He's also getting blood today. His blood count was way down ... he was anemic, sort of (I still don't know exactly what's wrong there).

I didn't see anyone at the centre with feeding tubes ... frankly, I think it would be great if he can get food through a tube since it's a real ordeal for my mom and I to get food into him 'by spoon'. And then, he's always distressed or agitated or tense afterwards. If these are his last days on this planet (or even if they aren't in fact), we just want to make them as painless and comfortable as possible ...

Spare a thought for my mom. With him out of the house she's certainly feeling very alone now, especially at nights. This is very, very hard on her. At least, the people of her church are helping out ... they're preparing meals for her; they give her so much food, she can eat for two days of each 'meal'! It's a great help; I know my mom, she never really liked making food, and it's a 'schlepp' for her to now make meals for herself alone.

Willem,

The reversal of roles, child to parent is particularly hard to cope with. Had some experience of that and it is difficult.

I do hope things improve. I will come back this evening and write a bit more but I have to go now.

Take care

Websailor

Very dear Willem,

Thank you so much for your details about your darling Pa. It must be extremely hard on him. Can your sister not come down and in some way assure him that in order to improve one must let the radiation therapy do it's job.

I trained as a radiographer from 1947-1949 when I qualified. I found the "therapy" oart of it traunatuc, so can imagine what it just be for you and your Ma to have to share it with him.

The only consoling part of it is that you are sharing it with him, so continue with your courage and Faith,

Loving thoughts and prayers with you as always.

I had a look at the Xray machine, Of course when I was doing my X ray therapy course it had oly been in existence since 1917 when Marie and her husband Pierre Curie had first started developing it. Now of course it is much more sophisticated.

With much affection to you all

Christiane and Keith.

Friday 22nd January 2010 17.15 GMT

Willem,

I found the article and photo in the Observer. Thank you. It seems that two things would make a difference to all of you - proper transport for your Dad (you wouldn't be allowed to move him like that here) and IV feeding. It is not nice but it would be a lot less stressful for all concerned. Of course you want to make him as comfortable and stress free as possible.

Your Mom must be feeling it dreadfully, and food for herself is probably the last thing on her mind, but you both have to eat if you are to support your Dad. Seeing him frail and vulnerable must be agony, I have had some of that and I feel for you I really do.It seems as if the role reversal comes to all of us at some time, unless a parent goes suddenly without prior illness.

Take care, and can you give a special hug from me to your Mom please

Websailor

Oh Willem; this must be so difficult for all concerned

I do hope your Papa has some comfort from being in the Hospice; the staff there are trained to cope with folk who are really not well, loss of appetite is very common & i would think they know how to handle that. The radio/chemotherapy itself can sometimes cause nausea; so maybe eating less is his body's way of dealing with it?

If he seems to enjoy the yoghurt; i would think it's a nice thing to bring him some; maybe in different fruit flavours each day, so he has a 'special treat' to look forward to?

I think the main thing is: he knows you & Mum are 'there for him' , whatever the outcome. If the worst happens, you will have to try & be very strong for Mum of course; which will be extremely hard on you. The only parallel i can give is when P's beloved doggie went at Christmas; he is distraught, i am also, but he'd known her for 12 times as long.It was a fairly long & slow process; but she seemed at peace when she passed on.

He's gone to Norway to see his son, then Germany to see his Mum, who is 94 & had two serious cancer ops in one week recently.

It's very good that your Church is supportive; they can be of enormous help in times like these.

to Papa, do let him know the online world (who are real people) are thinking of him & wishing him well.

And *please* take care of *yourself* also.



zdt

When I was four or so, I was in hospital with a serious case of pneumonia. One of the few things I remember about that was that my mother would bring me my favourite yoghurt, hazelnut flavour, so I'd eat. That worked then, so I hope it works for your father, too!

Hello! Thanks again for the comments everybody!

Christiane AR80, at the moment, it is very difficult to reassure my dad about anything. He doesn't seem to understand much of what we're saying. And he doesn't really have a say in it either. When it's time for radiotherapy, we just bundle him in the wheelchair and then in the pickup and take him and so forth, he's quite helpless to resist. In fact this is what makes me so sad ... this helplessness of his. Even though what we do, is to *help* him ... it's horrible that he might perhaps not like it but cannot do anything against it. I mean we're his loved ones, and he's too weak to defend himself against us ... if you can make sense of that. But I mean ... we cart him around, we re-arrange his position on the bed, we give him food, we insist that certain procedures be done, like putting in IV lines ... and if any of this is against his will, he just has no choice but to submit to it ... he can't even speak to protest. And we don't know if anything we're doing is causing him pain or discomfort ... we try not to, but we sometimes see him showing some faint signs of distress ... they're all he can manage.

He reminds me of the nightmares I have of being totally paralysed, unable to do anything, and I try to speak, I try to move, and nothing happens ... I try to scream at the top of my voice, but it's only in my mind, I can get no sound out.

He *is* not paralysed though ... he *can* get out some small sounds, grunts ... he can nod or shake his head, very minimally ... he can wave goodbye to visitors with his hand ... but what he can do is so very, very little, and seems to demand such effort from him!

That's very interesting about you actially having learned about radiation therapy! I'm sure there's been some major advancements since then. The machine they have is like I said an ultra-high-tech sort of thing, and they have a great many viewing screens which supposedly show the technicians a heck of a lot of different things that are all going on.

Websailor, I'm so glad you found that article and photo online! I didn't even know the Observer had an online version. Shows how sophisticated we South Africans are becoming ... it's only a small paper based around my home town. I knew the Beeld (a national newspaper) was online, but not this one! Did you perhaps translate the article again?

What do you mean, in Britain you would not be allowed to transport someone like that? What part of it would be illegal?

Terri, actually his appetite seems to be better now! He's now eating all of his main meals (soft porridge and pureed meals), as well as the little snacks my mom and I bring him. They consist of yoghurt, jelly (American 'jello'), and custard. And today a friend brought a delicious sort of blended 'smoothie' of banana, yoghurt and honey, of which he ate half, after lunch! Another friend brings him equally delicious finely-mashed papaya (paw-paw).

Terri, this is very hard for my mom and me. My parents celebrated their 40th wedding anniversary just this December; they've known each other a few years longer than that. I've been very close to my dad for my whole life, which would be 38 years this March. I've been really, really close to him all that time ... he's 'raised' me in a way very few fathers raise their kids. He started reading poetry to me when I was just a little baby, unable to walk or speak. He encouraged me with everything I was interested in. As a librarian, he brought me the most wonderful books about dinosaurs and other animals from when I was only four or five ... and bought me books too, read them to me, and by the age of five he'd taught me how to read them myself. He's been supportive of me with my search for knowledge and didn't object to the many weird and wayward paths I took. He's encouraged me with my art, and worked with me, artistically, for most of my life. We've been attending art classes together for many years now here in Polokwane. When my mental health problems started, he's been there for me, and has been a source of advice and guidance that I don't know how I'd do without. He stood by me even when I did, or said, or thought, things that were quite scandalous for 'respectable, upstanding and conservative' society. Without him 'backing me up', I don't know how I could, in my own confusion and uncertainty, have had the courage to come forward and stand up for 'my' principles against that of the 'mainstream'. There are many things about me he never understood, but it never changed the fact that I was his son, and that he was proud of me, and I even prouder of him. When he finally retired from his job just over a year ago, we thought that we would have time to do much, much more together ... art and writing, mainly. I've helped *him* as well with many things he did. And now ... he's actually leaving a lot of things still undone. He still has unfinished business here on Earth ... I *so* don't want him to go away now!

Anyways Terri, all the best for your time without P. It seems a bit crummy to me, him leaving you alone like that ... I can understand he wants to see his mom - and my best wishes for her, also! My dad is only 65 ...

Malabarista, I've never even heard of hazelnut yoghurt! Over here the flavours are mainly raspberry, strawberry, banana and vanilla ... not much else!

Very dear willem,

You really have had the most wonderful relationship with your Pa. It is great that you can talk and write about it. I hope that you tell him as well when you are together, !! I know you have had a special relationship but I do not think it does any harm to repeat and acknowledge it to the person concerned. !!

glad he is showing a little more enjoymnet in being alive. that is good. ~so keep him the good work.

with much affection

Christiane
AR80
Sunday 24th January 2010 5.20 GMT

He seems like a wonderful man & so are you, i would guess you inherited a lot of good stuff fromhim; both nature & nurture....try & take comfot from that, you are a very caring, compassionate person. As to the mental health issues; hmm; i don't personally know many folk who don't have so-called 'normal mainstream' personalities; good, 'cos non-mainstreamers are so much more interesting in my view!

Very pleased to hear he seems to be eating better now.Ja; it's awful when folk (or animals) can't communicate if they wish you to certain things. Humanoids can in some countries make a "living will" stating their wishes in the event of this; but if none exists, all you can do is *your* best in *your* view to help; please don't torment yourself over this.

I would imagine he's on fairly high dose painkiller/sedation meds; so more than likely, he won't actually realise much of what's happening.

Certainly when i was last in hospital, they gave me all sorts of stuff intravenously; which i didn't know about (and would probably said NO to!); but i had no 'next of kin'; P had to be officially approved as such; difficult since we aren't married.

Ja, i also think it's a bit crummy him going off on his own on holiday; but he's supported me financially for a year....*Plus* i have a puppy!Hopefully that may helphim with the loss of his own doggy; this is a Golden Retriever, totally different to Edda....i think he will fall in love with her once he returns & puppy training is well under way!



zdt

Willem, to reply to your question to me first- I m sure we would not be allowed as laymen/women to manhandle and transport such a sick patient, and lifting has to be done by nurses in twos, or you have to be shown precisely how to lift so you don't do yourself any harm.

I found the newspaper article here:

http://www.observer.co.za/stories/multimiljoen-sentrum-bring-verligting-vi

and managed to get an automated translation which though somewhat garbled as automated ones often are, I managed to understand the gist of it.

I am glad it sounds as if your Dad is managing to eat a little better, which is good. I understand your feelings about what you are doing, but you are truly doing your best for him and I am sure he knows that.

You know, you are SO VERY lucky to have had such a wonderful relationship with your Dad for so many years. There will be many people here who will envy that, but of course that will make it much harder to let go if the time comes.

I agree wholeheartedly with other comments about telling your Dad, now, how you feel, how much you love and appreciate him. That's if you can do it without getting upset. Whatever else he is not registering he will hear, of that I am sure. You will feel so much better if you can just do that.

Your Dad is the same age as me, and I have been married for about the same length of time so it isn't difficult to imagine how you must both feel. He has so much more living to do, but unfortunately if the time comes there is nothing you can do except your best, and if he must go, hopefully he will go with as much dignity as possible in these circumstances.

Thinking of you always, love to your Mom. Don't forget to find an opportunity to tell him what you have told us.

Websailor

I wish I had more time with my Dad as well Willem. Aside from the cancer, which took my Dad's life in 2006, he was in good health. It seems such a shame, because he'd spent several years devoted to taking care of my Mom, and we never got to travel to exotic locations together or such things that seniors do with their families. Still, I am glad of the many wonderful memories of my childhood. And like your Dad, mine supported me very much through my mental illness. I have found that my friends and family have really stepped up to the plate and supported me too since Dad passed. I am hoping still that your Dad's treatment may be effective. And I'm sure your Dad understands that you have to make tough decisions about his care. Sending many hugs your way. Ellen

Hi again folks! Websailor, thanks for putting that link here - there's my dad!

I've always told my dad I love him. I've told him I'm proud of him, and he's said it to me as well. Before he became so bad that he could not speak, he said to me, he wished he could 'bless' me like Isaac blessed his son Jacob, or other Biblical figures blessed their children - and the blessings took real effect. I told him I am already blessed!

Actually he can still speak ... but it's very infrequent. Yesterday, he managed two entire sentences ... the first one was, 'Jy kan maar praat' ('Go ahead, speak'); then later, 'Hoe laat is dit?' ('What's the time?') and this morning he managed, 'Wat is verkeerd met my?' ('What is wrong with me?'). But then ... that's it! After each of those utterances, he was incapable of getting *anything* else out, despite our promptings, and despite appearing to strive mightily. It really seems, his body is not obeying the intentions of his mind ... that, *or*, there's something wrong with his mind so he doesn't even have the intention, or will, to say anything ... how could we know? There's not a doctor that can tell us!

I don't think they're giving him heavy sedatives or pain killers. My mom is closely monitoring everything they're giving him. He does get a sleeping pill at nine in the evening, but that ought not affect him for most of the day. Currently we're not giving him pain killers apart from a morphine 'patch' on his shoulder. That ought not to interfere too much with his faculties.

At least from tomorrow we might have better transportation. Today, a man came with a mini-van, from a home for debilitated old people. He helped us get my dad in (he now has two bags - an IV bag and a catheter bag - that have to be 'managed' as well during the shiftings) and out as well. Tomorrow he will come with a 'ramp' with which we can roll my dad into the van in his wheelchair. I hope that will work.

Here I don't know of any laws about how very sick people must be transported. There's a real shortage of things like ambulances, and also, trained people who know how to do the lifting. I've watched the two radiotherapists who move my dad around at the cancer treatment centre; they know how to do what they do. But basically, without their help, I have to lift my dad on my own ... there's very little my mom can do. I am fairly strong though, I lift weights, and my dad at 120 lbs or so bodyweight right now, is not very heavy. But he's uncooperative ... and presently, his limbs are 'stiff' while his torso is limp. It's awkward lifting him without help, and like I said, I'm afraid I'm not gentle enough with him ... he starts moaning and groaning as soon as I touch him. But now, I have Solly (the van driver) to help me lift and shift him, while my Mom tries to keep the bags and the tubes out of the way.

JEllen, I'm glad your friends and family helped you cope. I would appreciate the stories of anyone here, telling of the loss of people very close to them, and how they managed to grieve and cope ...