Update on Lionel

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Maybe I spoke too soon

When I visited Lionel on Friday he was asleep. When I attempted to shave him he was still quiet.

Later I removed his socks to cream his feet, and without opening his eyes, told me to "p**s off". O.K. this indicates that he still has some control. Ate a good lunch, but really quiet, and was put to bed by 2.30pm. Asleep instantly, deeply asleep, and was still sleeping when I left at 4.30.

Visited today, 11.00 In his chair, but soundly asleep. Could not raise him. Fed him his lunch, so assumed that he just wanted to keep his eyes closed, although he was really slumped to one side. (Quite difficult) although he ate well.

Still sleeping soundly I noticed he was wet, so with one of the carers we changed him, put him to bed, Immediately went into deep sleep, and yes was still sleeping when I left at 4.00

No alteration in meds, just one very tired man.
And I was saying how alert he had seemed.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,358
Kent
Oh dear Connie, it must be so hard to bear.

This apparently normal appetite confuses me. If Lionel`s eyes are closed, does he smell the food, taste it when it touches his lips, hear your voice? Do you know?

Does he wake at meal times?

Am I asking too many questions? Sorry.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Connie, that's so familiar. That's exactly how John is. I go in every lunchtime to feed him. They always sit him up to table, properly set, because thay like to keep things 'normal' for as long as possible. On a good day, he'll open his eyes when I feed him, but that's rare. Immediately he's finished, he's asleep again, and we struggle to get him back to his room.

But he's eating like a horse. Today he had roast pork, apple sauce, roast and mashed potatoes, sprouts and swede, followed by lemon cheesecake and a glass of milk.

Then they told me he'd had breakfast only two hours before -- porridge, bacon and egg, and a banana, followed by cheese on toast with the staff when they had their breakfast. And he's losing weight!
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Sylvia,
Am I asking too many questions?
Of course not.

I have to try to rouse him by talking, but his only response to anything these days is to open his mouth, even when you try to stroke his face. Consequently when you put the small plastic spoon to his lips, he opens and eats.

Really enjoyed his lunch today, which was a full roast dinner, all pureed down. Then he had a very large portion of sherry trifle.

Just seems unable to keep his eyes open. When he is asleep he is deeply asleep. This is not just 'shutting out the world'

I am not worried about him, eating too well for that, just puzzled. Maybe he has had another TIA and is recouperating, who knows. He certainly does not appear in pain, or unhappy. Just asleep.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hazel, I realised that you had mentioned in one of your posts about John not opening his eyes.

Lionel has done this in the past, usually his way of shutting out the world. This is a true, deep sleep. Did not even rouse this afternoon when my 3 grandsons visited, along with my son and DIL.

Just this last 2/3 days. Strange behaviour. As Lionel has no ability to sit unaided, and has not been able to stand for the past 6 months, it is difficult to know just what abilities he may be loing all the time. Yes the only signs I can see are weight, but he has seemed fuller in the face only recently.

Watch and learn I suppose.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
It is strange, isn't it? I thought it was the quetiapine, but coming off it hasn't made any difference. None of the others in the home are like that.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Updating his diary

These ramblings are for me really, just to keep Lionel’s diary up to date.
Most of what has happened have already been mentioned elsewhere on the forum in various threads.

Lionel spent a very quiet Chrismas day,in that he never opened his eyes all day. I took him into the main dining room for dinner, and fed him, and ate my superb lunch with some of the other residents. He ate well, although never seemed at all ‘with it’. Just another day to him. I feel sure he had another TIA in the week before Xmas.
100_0795.JPG

He had family visitors on New Years Eve. Some cousins, who had not seen him for about 7 years. They were wonderful with him, talking about old times and looking at all the family photos that are in his room. He is unable to join in, but I like to think he picks up on the atmosphere.

Once again he did not open his eyes. He is not really asleep, you can always tell when he is truly sleeping. I guess he just wants to block out the world.

One new development, his room, along with 4 others have been incorporated into the EMI unit. This just means that the double doors outside his room are now security locked with a number code.

Of course this now means that the other residents of the unit have access to the corridor that houses his room. Mainly little old ladies wander in and out, and now things are going to ‘walk’. Thought about this long and hard… it is going to make not a happence of difference to Lionel, he will never be aware, so does it matter.

Indeed one lady helped me to start taking the decorations down on Monday, and promptly wandered off with some bright red & green bells, muttering to herself “these are very pretty”.

They are taking him into the residents lounge more often now, he does not object.
He has no idea, but at least does not seem disturbed or anxious.

So we start 2008. I wonder what the year will bring for my lovely man
 

Jazz44

Registered User
Dec 28, 2007
6
West Yorkshire
Hello and thank you

Hello Connie, thank you so much for sharing your story with us. I have sobbed for the past hour reading some of your messages.

I sometimes feel very alone in my concern and care for my Dad. My husband is great and visits Dad alone sometimes. My Mum is having a terrible time of coping with the whole thing. She hardly visits and when she does she seems quite distant. The other day Dad actually held out his hand to touch hers and she held it for a short while then pulled away. I do not think she is able to handle it. My sister has never visited him since he has been in care (since September) and my brother has only visited once. I cannot believe it really. Why are they all so distant (or should I say scared of coping with it all). I can truly understand my Mum's behaviour as she has suffered a few nervous breakdowns, one earlier this year, and I think may have started the grieving process. I just want to understand how my siblings and other relatives can be so distant. I find it extremely hard to deal with, and I am not saying I visit every day as I have a 3 and a half year old daughter and I work many miles away from home, but I try to be there when I can. I was the one who took him to the home in September, one of the hardest things I have ever had to do, and I went to 'claim/identify' him when he was found severely bruised after managing to get out of the care home. Please do not think I am suggesting that I am good and they are bad, I just feel so very very sorry for Dad and wish we could all be there more for him, and show him how much we truly love (and miss) him.

This is such a terribly cruel illness. Connie I think you are doing a marvellous job, and Lionel is in a fantastic home with great care. I hope 2008 brings some peace and happiness to you and everyone else who posts on this board.

Best wishes

Godbless

Janx
 

Kate P

Registered User
Jul 6, 2007
565
Merseyside
Connie,

What a lovely picture. I hope 2008 brings peace to you and your lovely man.

Jazz44 - I'm sorry about your dad it must be very hard for you. Your hubby sounds like a gem going to visit your dad alone. What a man!

Do not feel guilty about your feelings to your family - as you read through threads on here you'll find that almost everyone has family, parents, children, siblings who cannot cope with the harsh realities of dementia.

I too can't understand what they must be thinking but in the end what matters is that you're doing the right thing by your dad and will have nothing to reproach youself with in the fullness of time.

I hope you continue to post on TP and find a sense of support and comfort that just can't be found out there in the "real" world.
 

fearful fiona

Registered User
Apr 19, 2007
723
72
London
Dear Connie,

I always follow your news, and what a lovely photo of you and Lionel. My Mum is still in the dementia unit of the hospital and I know too well about all the walking in and out and things walking in and out, but the staff seem very good about tracking things down. As think as long as this doesn't bother out loved ones, it doesn't matter too much.

I hope 2008 brings you and Lionel much peace and content, you deserve it.

Much love,
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
Connie

Hi Connie,

I always read your posts too and look at your photos of Lionel. (saw you mentioned in the magazine Living too today) Steve has deteriorated quite a bit, he's started having fits/seizures. He had two within 3 hours at the home on 18th December but as soon as the seizure stopped he was up on his feet fighting to be able to walk about. The paramedics came and gave him valium (I think) but it took seven of us to hold him down so he could get a line in. They took him to the hospital which is 20 miles away, I went with him, a doctor gave me two tablets he was due from the drugs I had taken with me from the home and then we were sent back to the home. He had another fit/seizure on 28th December and the staff now have valium pessaries but the ambulance was called and they gave him something too and took him off to hospital again. The nurses were lovely but they were busy and have no experience in caring for dementia patients. Steve missed two lots of his meds and was climbing the walls and SO distressed and agitated, I had the drugs with me and asked a nurse to give them to him and she said no, sorry, can't give him even a sip of water until the doctor has been. So where is the doctor, no idea, he's swamped. I got very cross by 3 or 4pm and a nurse then came and gave him his tablets. In all, I was there with him for 12 hours and couldn't leave his side. He was very distressed and was walking very quickly round and round the ward. The doors opened automatically when you went anywhere near them and the nurses were too busy to notice so had I not been there, he'd have been out of the doors, down the stairs and walking the streets of Peterborough in a hospital gown and bare feet. I had nothing to eat or drink for 12 hours and all they did was take blood from Steve and then a consultant came round and said he would rather the home didn't send Steve here when he has a fit. The hospital had him down as an epileptic and he's not, the 18th Dec was his first one. I will always have to go with him oif it happens again or he will 'escape'.

Because of what's happened, he's been given continuing care yesterday. HE's been at the home which is fantastic with wonderful staff since March and no-one had mentioned a top up fee to me and I met a social worker at the home a ferw weeks ago and she mentioned the top up fee and I said I didn't pay one. She said I should have been and now I have a bill for £2,338. I have it because the DSS have been paying incapacity benefit of £80pw and I have asked over and over again what it's for seeing as Steve isn't living at home with me and never had a proper answer so now I know!!! Apart from dealing with loved ones having dementia - and Steve is only 57 - you have all this rubbish gong on with people who make mistakes. I've had so many problems with the DSS messing the benfits up I'm not on a double dose of my anti-depressants.

Sorry for such a long post!!!

Sue
 

twink

Registered User
Oct 28, 2005
265
67
Cambridgeshire UK
Connie

That should of course be, I am NOW on a double dose of my anti-depressants! Has anyone else any experience of fits or seizures?

Twink
 

CYN

Registered User
Jan 4, 2008
702
east sussex
Love shines through

Connie ,
What a wonderful picture of you and your Lionel. The love you feel for Lionel truly is visible.

It touched me when i saw it. I have been unable to post for a couple of days, back in business now.


Love Cynthia x x
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Just continuing Lionel's journey

Quite a shock all round when Lionel had three epileptic seizures a couple of weeks back.

Really took all the stuffing out of him, and for a week I could see a really big drop in his day to day condition.

Now he is fighting back, well not fighting as the spisode seems to have subdued him. The chiropodist was even able to do his feet this week, without me holding him in restraint. He is not weak, just seems to have slipped down a notch.

Fighting back as in eating. He is eating so well, and drinking too. Whether twas the fact that for nearly a week he was too weak to eat, but he is making up for lost time now.

His cousin has stayed in touch, and visited again at the home.
She is very hands on, so fed him his pudding when she was there.
It is so good to know that he has someone who cares, as neither of his children acknowledge him.

100_0808.JPG

Latest picture of my lovely man.
(N.B. I just use this thread as a way of keeping a diary for Lionel that his friends can tap into - when they 'guest' on TP.
 
Last edited:

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello Connie:

Its good to see another photo of Lionel and pleased he is eating well again now.
***
as a way of keeping a diary for Lionel that his friends can tap into
***
***I think this is a wonderful thing to do (must try it myself sometime!:()
Love Jan
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
Hello Connie,

Lionel looks very comfortable,well cared for and peaceful..glad he's eating and drnking..

Lots of love, Gigi xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Connie, It's not just you 'guests' who read your updates, I always look for them too.

I'm glad Lionel is eating so well, and is gradually picking up again. He looks well.

Love,
 

Mameeskye

Registered User
Aug 9, 2007
1,669
55
NZ
Connie

What a priviledge it is to share your story with Lionel. He is looking good and I hope this continues but I know that roller coaster ride only too well.

I was reminded of my Dad when you said that he had his eyes shut a lot but you could tell when he was really asleep. We were like that with Dad too. If his mouth was shut he was "resting his eyes" (his phrase for it )and likely to pull faces if you said something he didn't like but if his mouth was open he was asleep!

Thank you for sharing

(((hugs)) to you and Lionel

mameeskye