Ray and his many health problems

[sunray]

absence seizures continuing

The past three days there has been a large bottle of oxygen by Ray's bed. They are using the oxygen therapy again to bring him out of the absence seizures. Yesterday he was left in bed for the day as he had had a bad night and nursing staff said he needed the rest.

Today when I arrived he was in a fair crowd of residents in the large lounge room listening to a bracket of songs for St Valentine's Day played by the organist who usually plays on Sunday afternoons. There had also been an 102nd birthday celebration for one of the hostel ladies with large pieces of cake and love heart shaped chocolates circulating so he was pretty cheerful about all of that.

We have more or less settled our "quality of life" issues, yes, cake and chocolate is bad for Ray's sugar levels but at least he was socializing and getting some joy out of life. I know he will be left bedridden one day after another stroke or series of seizures so I do want him to enjoy being out and about while he can.

It is again a one-day-at-a-time process.

Sue.

 

[Canadian Joanne]

We have more or less settled our "quality of life" issues, yes, cake and chocolate is bad for Ray's sugar levels but at least he was socializing and getting some joy out of life. I know he will be left bedridden one day after another stroke or series of seizures so I do want him to enjoy being out and about while he can.

It is again a one-day-at-a-time process.

I agree, there comes a time when quality of life is more important than quantity. I'm sorry you've been going through a rough couple of months.

Your photos are lovely.

 

[sunray]

another worrying day

Ray has just had a "sleeping day" in other words an early morning seizure followed by laying semi conscious all day. The staff call it being "rousable but not alert". Every time it happens I pace and worry until he comes out of it.

The nursing home staff thought he should go to hospital but I said "no" this time as it is the weekend and there are no specialists there and he didn't need to be 24 hours in the Emergency Department when the nurses at the nursing home can manage his condition, keep him warm and medicated and keep me in the loop.

At Breakfast time this morning he "woke up" and had breakfast. I stayed with him till an hour after lunch when he decided to "have a nap".

I think I am getting too old for this.

Sue.

 

[Grannie G]

So sorry Sue.
`Sorry` sounds futile and it has been said so often , but really what else is there to say.
Another long road being travelled. xx

 

[Nanak]

Hi Sue
I'm so sorry to hear about Rays health problems.
You are doing a sterling job and you must be so tired. Loved your photos. So nice to put a face to the name
I do think of you (normally when the weather seems bad in your neck of the woods )and both our states seem to have had some pretty over the top extremes in the last few months.
We recently had an end of the world experience (well, they referred to it as a storm on the news but I am not convinced ) and I thought my lounge windows were going to blow in .
Personally I'll be glad when autumn comes.
Take care
Nanak
missing what has gone and scared of what is to come

 

[sunray]

throwing it down

I've been partially off the air as we had a really bad storm Sunday night and my back gutter lost it and poured rain into the back room where my computer is. It drowned the carpet, flooded the bookcase and luckily didn't pour over my laptop as I had moved it. Now I am typing on a picnic table in my bedroom! Hopefully if the rain ever stops for a whole day I can dry everything out again. It never rains but it pours - as the saying goes. Or that is how it seems this summer.

Ray is said to have "recovered" but the cognition is not good and I am not sure he recognises me on sight now. he seems to be gazing around and not taking much in.

Sue.

 

[Jo1958]

Sue, hi
What a truth that it never rains, but it certainly sounds to be pouring with you, hope it stops soon and you get everything dried and the guttering fixed before the next downpour!

Mixed news about Ray, it's heartbreaking if he doesn't know you on sight, fingers crossed his recovery keeps progressing and you have good times ahead.
With kind regards from Jo

 

[sunray]

at least one day a week now

Ray is having these seizure /semi conscious episodes at least one day a week now. The staff are managing them with oxygen therapy, a glucose shot if his sugar goes too low and a lot of attention.

Last Monday I sat beside him for six hours ans watched what they do for him. He "woke up" at 5.30pm and I fed him his evening meal. On Tuesday he was up and about and I took him to the BBQ in the courtyard. Again I fed him as he seemed to hesitate ti lift the food to his mouth.

It really is one day at a time for me now. Emotionally it is very hard to take.

Sue.

 

[Grannie G]

I`m so sorry Sue.
I keep reading your updates but feel totally inadequate to post a helpful reply.

 

[2jays]

Oh Sue I can hear your dispair.
load of support and hugs winging their way to you
thinking of you
xx

 

[Nan2seven]

Dear Sue,

I have just caught up with your thread. The Christmas Day photograph of the family is lovely, and so is the wedding picture of you and Ray.

I am so sorry to hear of Ray's seizures and that they seem now to be coming on a pretty regular basis. This is exactly how it was with Brian. And I recognise so many of the little things you wrote about, the looking but not seeming to have heard the question or remark, the hesitancy when it comes to feeding himself, and your not always being sure that he knows it's you in front of him. Brian, too, had better days and worse days, days when he would smile willingly and happily and other days when he seemed almost "out of it."

You can indeed only take one day at a time at this stage - and the days vary wildly from each other. But it is so sapping emotionally, I remember that very well, too. I think it is lovely that you are still able to get him out of doors sometimes. And the little celebration on St Valentine's Day sounded lovely.

Thinking of you and Ray, and sending you love and strength,
Nan XXX

 

[Loopiloo]

Dear Sue

I am so sorry to read about Ray's more frequent seizures/semi-conscious episodes. It must be extremely hard for you and I feel ashamed writing about my concerns re Henry, and my feeling so tired as you must be exhausted, emotionally drained.

All you can do is take it one day at a time, and really amazing that Ray was up and about next day, and managed the BBQ. Hopefully that lifted your spirits, on the day. But the days can be so up and down.

Wish I could say something 'sensible', I can only feel for you and wish you strength, and express my admiration for you.

Love
Loo xxx

 

[sunray]

some good days

Ray has had ten days without a seizure, he did have a couple of days in bed with a bladder infection but he was up and dressed today and after lunch I took him for a stroll in the wheelchair to the pharmacy close by and bought him an ice cream, a special treat for a nice sunny day.

Back inside I decided to go but an old movie called "Foxfire" with Jessica Tandy was on in the lounge room and we watched that together. I don't know if Ray can follow the plot of a movie but he sat quietly and seemed okay with being there. It is not often we get to do something like that so I was pleased I stayed.

Tomorrow? who knows?

Sue.

Sue.

 

[Grannie G]

It sounds a lovely stable time for you Sue. I wish I could take Dhiren out but he has become nervous and whenever I suggest it, even when he wants to `go home`, he says `Tomorrow`.

 

[Nan2seven]

Dear Sue,

I am so glad to see that Ray has had ten days without a seizure. And what a peaceful afternoon you had with him yesterday, a walk, an ice cream and then watching an old movie together. That sounds beautiful.

Yes, tomorrow, who knows? Let's hope this little run of good days lasts a bit longer.

Sending love to you both,
Nan XXX

 

[Izzy]

That's good news Sue. x

 

[sunray]

the sun is back

It was a lovely sunny day today so I took Ray for a long push in the wheelchair. It was wonderful to be out in the fresh air, away from the air conditioning and general nursing home smells.

It is a fortnight since his last seizure and he seems stable again. Yahoo!!! Maybe I can go to sleep without keeping one ear open for the phone to ring with yet more bad news. Mum seems stable too although she slept right through my visit today she had good color and the staff said she is doing well.

The downside for Ray is the Doctor has decided he has to have pureed foods as he has had three lots of antibiotics for aspirational pneumonia in the last two months and that is too much. Perish the thought that he could become resistant tot he antibiotics that have this far made him well.

I am hopeful as usual that he will plateau and be well for a while.

Sue.

 

[danny]

Hi Sue , catching up with your news. Glad all is well at the moment.

We have had a couple of sunny days and it is amazing how it feels to be outside in the sun for me , so it must be such a lovely feeling for Ray.

Take care.

 

[sunray]

seizures again

Ray had three weeks without seizures and then had a series on Friday night and again on Saturday night. Today (Sunday) he was in bed all day as the staff nurse said he was tired all morning and needed bedrest. I wanted to take him out in the sun but of course that was impossible.

Ray also has the shakes, only down his right side but that is his good side. When he is shaking he looks wide eyed and scared. The nurse who witnessed it on Friday said it is "petit mal" but I somehow don't see that. He is certainly tense when it happens but as it is only on one side I wonder why that is?

I just try to take things day to day but one of the aides said I looked "really fed up" today and that is exactly how I feel.

Sue.

 

[Grannie G]

I`m not surprised you are fed up Sue.
You cannot rest on any security when Ray has a period of stability. You are living on a knife edge. xx