Stroke and Hard Things (so potentially triggery)

[davidgillon]

So, it's a month on since my Dad's stroke, I'm back from another visit, and it's hard.

I'm realising that there is a lot of stuff about stroke that just isn't talked about. A month on and my Dad's situation is all over the place. I think I've seen four different states of consciousness in the 8 visits I managed while I was up there:

• Mostly himself - the general image of stroke. Yes, he's paralysed on one side and his speech is mostly unintelligible (some days are better than others), but he's himself, he's able to interact in a way I recognise, even to make jokes (apparently when our parish priest first visited he introduced my mother as 'She's the Protestant'), and capable of helping and participating in physio. Even at his best his emotions flare-up very easily - and his swearing is his clearest speech of all (my mother is mortified).
• Largely himself, but very unsettled - I didn't see this in the first week post-stroke, but Mam and my sister have seen it a lot. He seems to find it impossible to stay in one position, and has a habit of attempting to dismantle the bed around him, or any tube that's plugged into him - that he's an engineer probably doesn't help. You can get brief periods of interaction out of him, but getting him to eat or drink enough takes the patience of a saint.
• Mostly out of it, and very, very unsettled - like the previous example, but with the bad aspects turned up to 11.
• Asleep to the point of being impossible to wake - for up to 24 hours or more at a time.

The major worry is three of those states make it difficult to get enough food and fluids into him. That caused a major scare when his blood pressure dropped through lack of fluids to the point the doctor couldn't initially find a pulse when she came by to check him, so they're having to do IV fluids fairly frequently and there's been an extended discussion about potentially inserting a tube to feed him through a tube directly into his stomach (I've lost count of the number of times he pulled out naso-gastric feeding tubes, cannulas, etc).

Apparently this is all absolutely within the normal range of behaviours seen in stroke patients - another patient in the four bed ward was similarly out of it, and a family friend says her husband was also similar - but it's not something you really see addressed in media depictions of stroke, whether factual or fictional. How long it will last seems to be a question with no definite answer.

I continue to be amazed at my (75yo) mother, who is at his bedside from 10AM to 6PM every day, often without a break, and is managing a lot of his direct care such as feeding, while my sister is doing all day (and night!) in her deputy head's job, where they're in the middle of being inspected, then spending 6-8PM trying to make sure he eats as much as possible at dinner time. I feel fairly useless by comparison, as I can't manage more than about an hour visiting before my body starts to object and even trying to help feed him is problematic - I can manage the fork or spoon, but my left arm isn't strong enough to handle a plate as well.

The other people who've really impressed me are the health care assistants, with a couple of exceptions the nursing staff as a whole are really good, but the health care assistants, who don't get nearly the kudos of the fully trained nurses, are the ones on the front lines of the patient handling in both the stroke units he's been in, and they're fantastic with the often-difficult patients.

Comments

[jesse_the_k]

Thanks for opening the window into your Father's experience.

Wow, that sounds exceptionally difficult. NG tubes are famously uncomfortable, have they mentioned a g- or GJ tube instead?

I had a similar experience of not being able to lift my arms to help my dying mother. It's *so frustrating*.

Best wishes!

[davidgillon]

Thanks. What they're talking about is a PEG tube - Percutaneous endoscopic gastrostomy, a tube through the abdomen directly into the stomach. I don't know if that's the same as the two you mention.

[calissa]

Welcome back.

I find myself wondering whether these 3 states not talked about are seen as a loss of self that society can't deal with. Would this tally with depictions of and attitudes towards dementia?

It must be very frustrating not to be able to help as much as you would like to.

[davidgillon]

Unfortunately I suspect you're right - society hides it away because it doesn't want to look it in the face.

And yes, it's very frustrating - usually I don't mind the fact I'm disabled, but when it gets in the way of caring for someone you love it's really hard.