Please help me help my long distance, long term bedbound father

March 6, 2008 10:21 AM

My Dad, now 70, suffered a massive stroke around 2 and a half years ago. He is quadriplegic and his wakefulness is limited. I need help to improve the quality of his life. Lots more info inside

My Dad, now 70, suffered a massive stroke around 2 and a half years ago. He had the stroke on holiday in France and was in a coma for around 3 weeks, he was air ambulanced to the UK during this period. Against all odds he slowly, slowly came round but as expected he was left severely disabled.
At first he couldn’t move anything, gradually he could open his eyes for a while longer each day, then he slowly was able to move his limbs ever so slightly. He was also able to nod and shake his head slightly to indicate yes and no.
Within six months he was able to talk, a lot of the time very difficult to understand but it was a great bonus.
They actually had just retired to Cyprus before this happened, so they went back to Cyprus and my mum now looks after him with two live-in home helps.
The facilities and expertise available in Cyprus are pretty minimal and gradually he has lost much of the ability he had regained after his stroke mostly due to spasticity probably. He does have physio 4 times a week but this is limited to range of motion really. He also has speech therapy once a week.
I dread every day, getting the call, telling me worst. In part this is because I still think there are things that can be done to help him.
At the most basic level I really need some advice on long term care for someone bed bound – he does get out into a wheel chair once a day for around an hour which is all he can handle at the moment. But I worry about his heart, circulation, being laid in bed all day, under stimulated, much of the time he is in a half awake, half asleep type state. I really need to help him as I know he would have done for me, even if it’s just small steps to improving his quality of life.
I've looked on message boards such as strokenet and while they have been some help the majority of strokes seem so much milder.
With me being in the UK though and not in a position to emigrate I could do with some practical advice on how I can help. This could be in the form of resources available on the internet, your own personal knowledge and advice, anything really. I know I’ve covered a broad range of issues here, but really any advice no matter how small is appreciated.
Due to the health system in Cyprus much of this is do-it-yourself, though we can pay for any treatment required.
I feel like everybody has given up on him and we’re just waiting for the inevitable.
I want to give him every chance he can get.
Even more info: He is peg fed, he had a tracheostomy but breaths unaided now, he recently started having epileptic fits, he can communicate still but is becoming less clear. He was able to wipe his face to an extent 9 months after his stroke but this ability has disappeared.

posted by razzman to Health & Fitness (8 answers total)

I get the feeling that this is less about him than it is about you and your mother. Wait -- hear me out. Your father's treatment is being taken care of by your mother. If you don't feel that treatment is adequate, then you need to talk to her about that. If she's willing, then you need a specialist to get involved, someone who can specifically address his current living situation by visiting the house and observing what's going on. We can't do that; we're an internet community. You can do that, to a certain extent, by going there and visiting, but you're not an expert and you're clouded right now by what I think are your issues of guilt. Just listen to yourself here:

I really need to help him as I know he would have done for me, even if it’s just small steps to improving his quality of life.

That's a wonderful sentiment. You want to help. You don't think everything is being done right now that should be. But that's not an issue of you not having enough knowledge -- it's about your relationship with your mother. And it's also about being able to implement whatever information we give you. Parents growing older and having health problems is a brutally difficult situation, and one that many of us have gone through or are going through. But it's about advocating for the patient and it's about stabilizing the relationship with the other family members. I'd suggest that you seek out stroke victim specialists who can go see your father and mother and evaluate the kind of care he's getting, and I'd suggest working on your relationship with your mother so you come to trust that she's able to take care of your father. I'd also suggest that you seek out a therapist or psychologist with whom you can talk about these issues. You'll feel a lot better after.
posted by incessant at 10:51 AM on March 6, 2008

I have known several excellent Cypriot physicians, so don't sell them too short.

There are pharmacological treatments for spasticity, seizures, excessive somnolence, and some of the other things you mention. In addition, he should be on appropriate agents to minimize the risk of stroke recurrence. This kind of thing can't be done remotely; he needs access to a neurologist who is up to date on the latest thinking, and he needs access to the right medications, which if uninsured can be rather expensive.

Good luck.
posted by ikkyu2 at 10:52 AM on March 6, 2008

If I were in your father's place, I'd want something to occupy my mind. Does he have access to a computer? Maybe your mother could download audiobooks from librivox.org for him to listen to.
posted by happyturtle at 11:15 AM on March 6, 2008

As you said, you aren't in the country, so it might make you feel better if you're communicating with him.

Record yourself talking to him in whatever format is easy to him or your mother to play back... cassette seems like the simplest option, but if you have the tools needed, make a CD. Listening to you talk will be easier than holding up a letter or having your mother read it. Bonus: it will make you feel like you personally are doing something, and it will most likely be comforting for your father to hear your voice and know you are thinking of him.

MeMail me if you want to talk more about this: my father died a couple years ago after a long illness, so I understand a bit of what you're going through.
posted by dubold at 12:24 PM on March 6, 2008

that should have been "for him or your mother to play back..."
posted by dubold at 12:25 PM on March 6, 2008

I was thinking about this, or rather along these lines after reading about trapped in syndrome, where you're aware but you're locked out of your body. I'm focusing on mind more then body here.

For me, the number one release would likely be finding a way to communicate and getting online-- which, honestly, isn't as geeky as you might initially think. You've no access to the real world, except for when people take you about, so most of your time is going to be sitting there, doing nothing or watching TV, listening to audio books, music, but all of these are quite passive activities, having the ability to respond would be incredibly important to me.

So what options are there for your dad to do something like this? You mentioned he had some motor control, and that he is capable of speaking clearly enough to be understood (albeit slowly). I'm sure there must be some control method that would fit his abilities. Control of a mouse would be the main goal, X and Y and click. From that you can use an virtual keyboard, and search the web, chat on forums, read books, control your own entertainment. I would think that could be incredibly liberating for him, as well as your mother.

Webcam and VOIP make it simple and cheap/free to keep in contact these-days, so perhaps that's an option if you want to let him know what's going on in your life.
posted by Static Vagabond at 1:08 PM on March 6, 2008

Response by poster: Thanks for the responses.
incessant, i wouldn't completely reject your comments but personally feel this IS more about my dad. I keep getting this nagging feeling that I can help him more, not because I feel guilty but because I can indeed do more! This post was just a part of moving away from just getting a nagging feeling to taking some inital action. I'm pretty sure my mum is doing all she can, but she does have sons and I want to play my part.
ikkyu2, i know there are great neurologists in cyprus, it' just finding them that seems to be difficult!
Happyturtle, audiobooks would be good, he loved to read but at the moment he doesn't have the attention span. In effect he needs something to build up his attention span.
Dubold. I do like the idea of creating audio cds and perhaps I will stretch that to making a fortnightly video diary he can watch and maybe look forward to.
Static Vagabond - i think the ability to control his own entertainment is key but again his attention span is limited, having said that there's some eye movement pointing devices which may fit the bill.
Thanks again for the support and replies, really appreciate it.
posted by razzman at 2:50 PM on March 6, 2008

this is late and you may not be checking this thread anymore, I hope the best for you and your family this is a very hard thing you all are going through. I stopped by to make sure you saw this post from the blue, it won't answer your question but it might be interesting for you.
posted by meeshell at 5:44 PM on March 13, 2008