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The "I'm neither happy nor unhappy today" thread


Alfa2Evora

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although the above will seems daunting to you both it all sounds very hopeful so far, as my father in law suffered a major stroke 18 months ago which has left him unable to walk unaided, can barely speak and has lost the use of his right arm, after 18 months of various hopsitals, rehab uniits and care homes he has kinda got to where he is and that has gone from an incredibly fit motivated busy person, much of his time away from us was under covid restrictions so either we couldnt see him or only one named person could and so although i built a downstair toilet and wet room for him for his return and had a stair lift installed we were not ready for how disabled he actually was. To top it all my oldest nephew (just turned 40) also suffered a stroke in his eye.

keep ya chin up bud trust me it could of been much worse

 

AB 

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Today was very much a day of mixed emotions.

When I went into the ward, Jennifer was lying there, eyes tightly closed but quietly singing along in part to some of the tracks coming over the sound system. I announced my arrival to her as usual, but got no response in return. I kept talking to her and stroking her forehead but there was not even a glimmer of recognition. After about 10 minutes, she stopped singing, and fell fast asleep if the snoring is anything to go by. I sat the whole hour talking and caressing without a single interaction or connection with her consciousness.

I came away feeling very deflated and dispirited, having gone in full of hope and optimism following the progress in the previous 72 hours. I know it's not going to be an overnight fix no matter how much I'm willing it to be so, and that there are going to be a lot of peaks and troughs along the way but it still knocks the wind out of your sails when a day like today comes along.

Perhaps it's just me being selfish, wanting her to 'be there' so we can have some communication, which on reflection might heighten her frustration and agitation at not being able respond to me as she wants to, or perhaps more correctly at my inability to understand and respond to her as she expects me to, and so maybe a period of complete withdrawal like today might actually be more beneficial to her by keeping her in a state of calm and tranquility.

Anyway, fingers crossed for tomorrow's visit.

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Hope your visit is better tomorrow, also you can discuss how she is progressing with the staff. In my experience most will have some time to explain progress or lack of and concerns you may have.

Wishing you and Jennifer all the best.

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This is the time of most frustration. A stroke is an injury to the brain much like a closed head injury or concussion, yet from the inside. It needs time to evolve and heal during which time she may be all over the place mentally. One thing typical is that things are worst when they first occur and will get better to some degree, we just never know how much and how long. It is good that she is on a stroke unit as she should be surrounded by personnel with specific experience that can help you both in the process. We are all pulling for you both. ❤️ 

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This was very close to reverting back to the 'UNHAPPY' thread but since I've started here I'll continue. The fact that she's still 'with us' should be compensation enough for any disappointments elsewhere I suppose on reflection.

TODAY'S UPDATE:
Nothing of any significance to report I'm afraid.

It didn't help that although my allotted visiting time was 1130 to 1230, and I was there on the dot, just before I arrived they'd taken her for a scan to check on her gastric bleed from a few days ago. I sat staring at the empty space where her bed should be until 1210 when Jennifer appeared back on the ward, but then had to leave 20 minutes later as my time was up and somebody else was waiting to start their visit with another patient.

Her eyes were open this time, but I'm presuming (hoping/praying) that the reason she seemed to look straight past me with no sign of recognition was that she was tired out from her scan session. She didn't say very much other than a few incoherent phrases, then closed her eyes and that was that.

I asked the staff nurse for an update on what their observations were. She did mention that Jennifer was quite agitated and vocal during the night, but it would be best if a doctor spoke to me later.

10 hours on, I'm still waiting, :( - I know they're busy but I'm going out of my mind with worry over what seems to be a sizeable step back from Jennifer's apparent progress at the beginning of the week. "Is there something they don't want to tell me?" is a thought I'm finding difficult to get out of my head.

I'm back tomorrow at 2.30pm this time to see if her levels of activity are different at a different time of day - certainly when she was in High Dependency, I got more of a connection later in the day than first thing in the morning.

Ward doctor tomorrow, be advised I'm coming looking for you. You can run but you can't hide!
 

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Back here for today's post I'm afraid - I suppose it's too much at this early stage to expect every day to show an improvement.

TODAY'S UPDATE:
Not really much to report today - Jennifer is pretty much the same as yesterday so I should take comfort I suppose in the fact that she's not got any worse after the minor set-back a couple of days ago.
She's been moved to a single-bed room as she has been quite agitated and restless the past few nights which had been disturbing the other patients in the side ward. With the room door propped open, her bed is in line-of-sight with the nurses' station so they'll be able to spot quickly if she makes any further attempts to climb out over the guard-rails on the side of the bed.
The nurses noticed that she seems to settle quite quickly when I'm next to her, so I'm now 'on call' 24/7 to go in if she gets upset again, and with her being separated from the other patients, I'm now not constrained by the normal once-a-day visiting policy and can go in anytime I like, which I'm just about to do now.
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Yes, it's earlier in the recovery phase.  But I'm glad you were able to update us on Jennifer's condition.  Thank you for keeping us informed.

Bill

"I thought it was Lambo" -  Thank you very much and now it's time to educate the Exotic Less.

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Back here again today I'm afraid. At least she's holding her own which is all I'm asking.

TODAY'S REPORT:
Big non-event today I'm afraid. They moved Jennifer from the single room back to the 6-bed side ward this morning which meant that it's back to the pre-booked once-only-per-day 1 hour visiting slots again and because everybody else had already booked for today when they were in yesterday, I got a take it or leave it option of 6.30- 730pm.
When I went in Jennifer was fast asleep, clearly tired out by what had gone on during the day. Her eyes flickered open a couple of time so hopefully she registered that I was there, but other than that she lay and snored the whole time I was there.
Frustratingly, because of course everybody else had been in before me today, they'd bagged all the other slots for tomorrow so I'm stuck with 6.30pm again, but the staff nurse did open up the bookings for Thursday so I could have first choice. I'll be going at 2.30pm, which is when Jennifer has seemed at her most receptive on previous visits.
Tomorrow night will probably be much like tonight I fear, but hopefully there will be something more positive to report on Thursday.
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In here today again - of course I'm more than happy that her condition hasn't worsened, but somewhat unhappy that I'm not getting any connection with her.

TODAY'S REPORT:

Well, that didn't quite go according to plan. Going in 4 hours earlier today than I had done the last couple of days, I was quietly confident that I would find Jennifer sitting up awaiting my arrival.

She was fast asleep again, and apart from her eyes briefly flickering open, she remained so for the duration of my visit. The nurses said that she's been sitting in her chair all morning, had a visit from the speech therapist, and was singing along to some of the piped music in between times, but come lunchtime, her batteries just seemed to run out of charge.

I'm sure all this rest must be doing her nothing but good, but it is a tad frustrating for me not to be able to engage with her on any level - that's 3 days in a row now and it's killing me.

Booked for 11.30am tomorrow. Surely I'll catch her awake then?

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This was borderline for going in the 'UNHAPPY' thread but I'm trying to be positive for Jennifer's sake so will post it here instead.

TODAY'S REPORT:

After the obvious progress yesterday and the day before, today was a bit of a disappointment.

Jennifer was very withdrawn and not very communicative, not even singing along to the background music like she quite often does.

I knew that there were bound to be days like this - it's not always going to be plain sailing - but it doesn't lessen my feeling of helplessness when I see her taking a step or two backwards and I fail to make any meaningful connection with her.

Fingers crossed for tomorrow.

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Keeping the fingers crossed in the USA for Jennifer, too.

 

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"I thought it was Lambo" -  Thank you very much and now it's time to educate the Exotic Less.

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Hi David,

I'm not a doctor - just a server, workstation, laptop hardware/software guy.  However, I've spent a lot time in medical IT and seen and experienced some stroke patients like my co-worker at the hospital. You might have already looked up this information yourself or have been recommended similar material by hospital staff and/or friends.  This isn't a diagnosis by any means and is only meant to possibly help you in current circumstances. 

The following stroke information is available from www.stroke.org:

A stroke that occurs in areas of the brain that control speech and language can result in aphasia, a disorder that affects your ability to speak, read, write and listen.

Different aspects of language are in different parts of the left side of the brain. So your type of aphasia depends on how your stroke affects parts of your brain.

Wernicke's Aphasia (receptive)

If you have Wernicke’s Aphasia, you may:

  • Say many words that don’t make sense.
  • Use the wrong words; for instance, you might call a fork a “gleeble.”
  • String together a series of meaningless words that sound like a sentence but don’t make sense.

Broca's Aphasia (expressive)

Injury to the frontal regions of the left hemisphere impacts how words are strung together to form complete sentences. This can lead to Broca’s Aphasia, which is characterized by:

  • Difficulty forming complete sentences.
  • Leaving out words like “is” or “the.”
  • Saying something that doesn’t resemble a sentence.
  • Trouble understanding sentences.
  • Making mistakes in following directions like “left, right, under and after.”
  • Using a word that’s close to what you intend, but not the exact word; for example, saying “car” when you mean “truck.”

Global Aphasia

A stroke that affects an extensive portion of your front and back regions of the left hemisphere may result in Global Aphasia. You may have difficulty:

  • Understanding words and sentences.
  • Forming words and sentences.

Family and friends can help

Some people mistakenly think those with aphasia aren’t as smart as they used to be. But they can think; they just can’t say what they think. You can help people with aphasia express themselves by:

  • Asking yes/no questions.
  • Paraphrasing periodically during conversation.
  • Modifying the length and complexity of conversations.
  • Using gestures to emphasize important points.
  • Establishing a topic before beginning a conversation.

If you have aphasia, you can practice common conversation starters like “How are you doing?” in a quiet, distraction-free environment. As you become more comfortable in one-to-one or small group interactions, try less-controlled social situations with your speech-language pathologist, close friends, family or other stroke survivors. And through intensive rehabilitation, you can avoid the frustration and isolation that aphasia can create.

I hope you find this useful, but again it may or may not apply in your particular situation.

Bill

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"I thought it was Lambo" -  Thank you very much and now it's time to educate the Exotic Less.

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TODAY'S REPORT:

Not a lot to add from the previous one really.

After the 'high' of Saturday, Jennifer was a bit subdued on Sunday but I was still able to make some connections with her.

Yesterday, she seemed a bit more agitated and frustrated, even banging her fist down on the chair arm at one point when I still failed to understand something that she'd repeated about 5 times. The consultant was within earshot at the time and came back over to reassure me that this apparent step back was nothing to be concerned about and that he was quite comfortable with the way things were going - a good day followed by a few days of marking time is nothing more or less than he is expecting to see at this stage so that's put my mind at rest a bit.

Today, Jennifer had apparently been quite active early on to the point that they'd had to put her back in her bed with the safety rails up as she'd almost come a cropper trying repeatedly to climb out of her chair - she's worked out how to release the seatbelt it seems. Consequently, she was fast asleep when I went in and remained so for the entirety of my visit. Oh well, just got to see what tomorrow brings.

One thing to look forward to is Saturday, when I'll be taking Macha and Charis along for the first of hopefully many more to come dog-therapy sessions in either the outdoor courtyard if it's a nice day or the indoor gymnasium if it's inclement.

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I'm a dog breeder so I know the dogs should help a lot with any type of recovery.  We had a therapy dog in the UK, but he passed away sadly a few years ago.  Right now, they have Flint and Chalk in Suffolk.  I hope Macha and Charis will help bring out some good in Jennifer.

"I thought it was Lambo" -  Thank you very much and now it's time to educate the Exotic Less.

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