Ray and his many health problems

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
I just had a few days away with friends. The holiday was booked at the beginning of this year and if Ray had still been at home he would have gone into respite for a week or so. I left several contact numbers with the nursing home staff and also advised my son would pass on a message if they needed me.

Apparently Ray had a seizure on Monday, now one a week for four weeks, and then a "turn" on Wednesday which is when the staff started leaving messages on my answering machine. No calls to my son at all.

So today I went in to the nursing home to try and sort it out. The staff nurse said the doctor said the "turn" may have been a slight heart attack and so the doctor wants Ray to have a heart monitor for a 24 hour test. I am not sure he will leave all the wires attached as when he was in hospital he pulled out both the catheter and the canula.

I didn't feel up to arguing after a three hour drive so said I would think about it over the weekend and discuss it on Monday. He is not a candidate for a defibrillator or pacemaker so I don't know what the monitoring will achieve apart from confusion and frustration on his part and probaby mine if I have to sit by his bed for 24 hours!

Wonderful how quickly the holiday feeling vanishes!

Sue.
 
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BeckyJan

Registered User
Nov 28, 2005
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Derbyshire
What a disappointing end to your holiday. I am sorry to hear about Ray's further downturn and how right you are to wait until you feel up to a proper discussion about a heart monitor.

I hope your break away has given you extra strength to cope with the next phase of Ray's illness.

Please keep us updated - best wishes
 

benny

Registered User
Dec 7, 2009
290
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Central Coast NSW
Oh Sue how awful for your holiday to end that way,so sorry to hear that. Wish you didnt have to stew over it for the whole weekend. It just seems to be never ending for you. Wish there was more I could say to make you feel brighter but I will send my thoughts and good wishes, keep us posted on your decision and if any progress Cheers robyn!
 

Nan2seven

Registered User
Apr 11, 2009
2,525
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Dorset
Dear Sue,

I am so glad you were able to get away for a few days, but how sad that it should finish with more worry about your dear Ray.

Brian used to have regular blood transfusions, but once the dementia had set in, he too used to pull out the canula and the transfusions, therefore, came to a complete halt. Just once they had a nurse sit with him for 24 hours - and that was the last one. Since Ray has already done the same, I rather doubt that a heart monitor will be left alone. Brian's heartbeat was irregular for many years. Perhaps your Ray's is as well.

Thinking of you both and sending love,
Nan XXX
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
irregular beat

Ray has always had an irregular beat since the first stroke in 1990 and A-Fib was diagnosed after every stroke from 1999 but it seemed to settle down after a while. I think the monitor was suggested because they think he may have had a couple of mild heart attacks in the last few months.

The dilemma as I see it is that as we have been told he is not a candidate for a defibrillator or a pacemaker if we have the monitor assesment is there likely to be a "cure" or is this just another exercise in futility? Let's face it, some doctors do a test just to be seen doing something.

Ray seemed fine yesterday, a little sleepy and dribbly today. I seem to be at the one day at a time stage again. Talked to two of my adult children tonight and they both said "not anything much you can do now Mum" and that is the truth. Sad but true.

Sue.
 

Jo1958

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Mar 31, 2010
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Yorkshire
Sue, hi
Yes, sad but true. I agree that unless there is something that they can do for Ray with the information that the 24 hours monitor will provide then I wouldn't consider it, there is no point in the stress and trauma.

I get so frustrated with contact details and communication wishes being ignored, lost, just not taken seriously, it is such a basic part of caring, so sorry that you are having this struggle too, no wonder the holiday seems a long time ago now.

It's good that the family are around and supportive, I hope you have a good meeting on Monday and get the result that makes most sense for Ray.
With best wishes from Jo
 

danny

Registered User
Sep 9, 2009
3,342
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cornwall/real name is Angela
Hi Sue, just popping in to say hello. Sorry to hear your news, it is so hard to know what to do for the best at times.I hope you enjoyed your time away, shame you had to return to this.

Tomorrow is another day, so they say:)

Best wishes, Angela.
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
What a shame Sue. I'm sorry Ray isn't good and send wishes for the strength you need to face everything. x
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
Ray may be able to get the heart monitoring done in the nursing home

I spoke to Ray's new doctor this morning and then saw him this afternoon at the nursing home. It looks like Ray can get the heart monitor fitted at the nursing home and the nurses will do the monitoring. Then depending on the results a cardiologist will be consulted. This sems like a much more sensible plan.

The nursing home, like everyone around Australia, had a Melbourne Cup party this afternoon and someone gave Ray a cup of punch which he promptly choked on. I was off looking for his thickened drink so missed all the fun. He may have been purple in the face but he finished up breathing again so it was relief all round. At least the staff were gathered around and were ready for action if needed.

Ray looked well today and we enjoyed the cheese and crackers, he ate all the cheese I ate all the crackers...lol. Nothing better than sharing!

Sue.
 

Izzy

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Aug 31, 2003
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Dundee
Good news about the monitor Sue. Sounds like fun and games with the celebrations!
 

Canadian Joanne

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Apr 8, 2005
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Toronto, Canada
I spoke to Ray's new doctor this morning and then saw him this afternoon at the nursing home. It looks like Ray can get the heart monitor fitted at the nursing home and the nurses will do the monitoring. Then depending on the results a cardiologist will be consulted. This sems like a much more sensible plan.

That seems a very much more sensible plan. Taking Ray out of his normal environment will only upset him and could even affect the readings. I think you're right, sometimes doctors feel they need to be doing something.
 

Nan2seven

Registered User
Apr 11, 2009
2,525
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Dorset
How much more sensible for the monitoring to be done at the nursing home, Sue. With a bit of luck, Ray will scarcely realise it is even being done.

The afternoon's celebrations sounded a bit alarming, but good to see that the staff were all on hand to deal with the situation.

"Fine yesterday, but a bit sleepy and dribbly to-day" you wrote in an earlier post. That, to me, was always a sign of Brian having had a very minor TIA, the slightly fuller lower lip and inability to control the saliva. But then a day later and it all cleared up again.

Good to hear that he was eating the cheese - pity he didn't get a look-in on the crackers.:)

Thinking of you both and sending love,
Nan XXX
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
kindness back-fires

It was a lovely day today so I took Ray for a stroll in the wheelchair, down the road a bit from the home is a pharmacy with an ice cream chest. We stopped and I bought him a cup (bucket?) 97% fat free, and got a spoon to feed him with. We found some shade and I sat on a park bench nearby.

I put the first spoonful in his mouth - fine. Put the second spoonful in his mouth and he coughed, spluttered and choked. He made so much noise the chemist rushed over to us to see if he could do anything. Ray calmed down after a while and had the rest of the icecream that was moslty melted by then. I guess if he had died you could say he was "killed by kindness".

I will do it again but take a thickened drink too next time and a face washer and a whole bag of other equipment. Reminds me of taking the kids to the shops, same procdure I guess. Apart from that he seemed fine today. I left him playing 8 number bingo with an aide.

Sue.
 

Nan2seven

Registered User
Apr 11, 2009
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Dorset
Oh, Sue, lovely that you were able to take Ray out for a stroll in his wheelchair - but what a shame about the choking over the ice-cream. (I do envy you your nice sunny day as it has been raining here for most of the past week.) Yes, when the children were little we went out prepared for all eventualities, didn't we. When Brian was still at home with me, I had a handbag that resembled a poacher's bag and it always held "spares" of essentials and a box of tissues.

Lovely, too, to see that Ray is able to play eight-number bingo, even with a carer alongside him.

Take care of yourself, and get more of that sunshine.

Love, Nan XXX
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
monitoring day

When I got to Ray late morning I could see he had the heart monitor on. He seemed fine with it on, didn't fidget or fiddle with it. He enjoyed his lunch though one woman close by remarked loudly "Not *B* chicken again!" The CH does try for variety but chicken is a frequent menu item.

After lunch we went to the cortyard and I went on reading to him. The book at the moment is: "Vets might fly" by James Herriot. Ray is quite interested in it but started falling asleep so I took him back to his room and asked a staff member if he could go to bed soon.

I got a phone call from the CH about 6pm to say he had had another episode. They tried to wake him at 4.30pm and couldn't so staff nurse got the oxygen on him as they do sometimes in the mornings and after an hour he seemed okay so they gave him his medications and a light meal. At least the heart monitor will hopefully be able to show the pattern he is in when the episodes occur.

As he probably can't have an operation with all his present woes I am hopefull it will not be serious just something yet more medication can fix.

Sue.
 

sunray

Registered User
Sep 21, 2008
1,486
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East Coast of Australia
seizures or TIAs

I had an interview with Ray's doctor today. This came about as he wanted to do some further investigation of Ray's condition and wanted some imput from me. We had a deathbed scene last Tuesday, a two and a half hour period of Ray being only semi-conscious and that frightened us all.

The doctor said there is not a lot he can do after a series of what could be seizures but he is calling brain infarcts now. Whatever they are called it seems there is no getting them under control. Ray has been given a broad spectrum antibiotic and is certainly better than last week, but nowhere near where he was six months ago. I find it all so disheartening.

The medication change he mentioned was Plavix out, doses of asprin in, warfarin was suggested but everyone agreed the risk is too great. Not sure I am happy with that one so I asked a letter be sent to the neurologist for his opinion. Not sure what the result of that will be.

I find myself clinging to hope, reading online about medication I know Ray can't have. I find myself wondering where this will all end, although we all know where, not just when. My poor old love seems to sit and look sad and not do much else now.

Sue.
 

Nan2seven

Registered User
Apr 11, 2009
2,525
0
Dorset
Dear Sue,

I missed your post of the 7th and am so sorry to see that Ray had another episode last week. Brian's seizures too seemed to just come out of the blue. You find yourself living literally one day to the next, wondering what might happen. It is a very sad and difficult time.

When Brian lost interest in photographs of the family, picture books of Dorset or even just me chatting to him, he still enjoyed music. The Care Home used to put on a CD of Frank Sinatra or Tony Bennett just after tea and he responded to those well, cheering visibly. Does Ray have any favourites you could take in for him?

Thinking of you both and sending love,
Nan XXX
 

sunray

Registered User
Sep 21, 2008
1,486
0
East Coast of Australia
Very little change in Ray

Life has settled down to Ray having the occassional seizure, a fall or two, some alert days and some sleepy days. I guess I just think of whatever Ray is like on the day is normal. Occasionally if the nursing home staff is worried about something someone will call me at home, mostly they just wait till I appear and ask me their questions then.

I still go in to see him most days, I stay as long as he is alert and enjoying the visit. Sometimes I come home when he loses intrest in me. For instance we can be sitting in the sun and I'll be reading to him and the diversional therapist comes out to ask him if he wants to go to Bingo. Without a word he releases the brake and off he goes - no goodbye, no backward glance.

It has happened before that Ray has transferred his attention and reliance onto someone else if I am not available. This seems to have happened again. It certainly frees me from that heavy feeling of being responsible for him physically and emotionally so I guess I should be pleased, instead I am feeling sad about it. I feel as if I have lost a companion, husband and friend.

I know I feel the lost without him at home. I do wish he felt about me as I feel about him but the many strokes have taken away Ray's ability to think in an emotional way. Maybe it is less painful if he doesn't have the loving feelings so the thought of being away from home is less harrowing for him.

I have been sending cards and letters beginning "Ray is in XXX nursing home full-time now" and that does distress me so I will be glad when the cards are finished and gone. I have yet to complete Christmas plans but four of us will have lunch with him and hopefully the rest of the family will come here to the house and have dinner together late Christmas Day.

Sue.
 
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