Not the best start for 2006

[connie]

Lionel has had quite a bad week. Fell again in bathroom early today, called paramedics. Also rang CPN who visited mid morning. She felt that it was time that Lionel went in for assessment for nursing care, and mental health ass. also.

She recommended that he went to a local nursing home, and rang them from our house. They came out to see Lionel at 3pm but did not feel that it would be suitable for him. Last call from social services at 8.30pm still could not get emergency placement.

At least Lionel was calmer this evening, and I struggled to get him into bed.
I am quite happy to arrange respite myself, but now this is only a sticking plaster, and is not addressing Lionel's future needs.

So tomorrow we start again, and hopefully we can get him placed, and a full assessment started. Incidently, they feel that the recent introduction of a new medication may not be helping, so are changing the dosage,

I am now so tired, confused and upset. He stated to day that he was tired of living like this. He has still such an insight into his condition, but has no spacial awareness and mobility almost gone. Its a bl---y awful disease.

Sorry to rant on, but it does help. Take care of yourselves, Connie

 

[Michael E]

Connie hi,

Just want to say how much I feel for you - you are really in the thick of it. So difficult to cope when it's like that I imagine. Men have the advantage that generally they are physically stronger so can lift or pull their 'loved ones' more easily.

It is indeed the 'insite' sufferers appear to have about their condition that is so distressing. There is no answer - except it's going to get worse and that's not the answer it is possible to give. Dreadful - truly dreadful.

Hope 'they' find a place for Lionel and asses and find somewhere for him to be. The whole medication thing seems so hit and miss.. To me the worst symptom is the depression and I am not to sure the enhanced awareness that Ebixa brings is good but who the hell knows..

Hope this near the bottom for you and that the only way is up now....

love

Michael

 

[Brucie]

Hello connie
you bring back memories of how things were for Jan in 2000. It is an awful time, and yes, that insight thing is dreadful - you just wish they were worse in that one way, so it wouldn't be so hard for them. That does come in time, or at least it doesn't seem so apparent to us.

Of all others, this is a classic Norman's "day by day" time, possibly "hour by hour".

You seem to have organised things to be on the move, if only slower than you would wish.

Hang on in there. It may not seem like it, but you are doing a spectacular job.

Best regards

 

[jc141265]

Connie,

How do I word it, how do I offer support, knowing what it is like for you, knowing that this situation is such that there really isn't much that anyone can do for us to help us through, except perhaps to say we're here and we know how it feels??

So i guess that's what I will say, I know how it feels, and I am so sorry that you have to feel this way too. It is bad enough that my family and I had to feel this way, what makes it worse is knowing that so many others have to too, and there is very little we can do to help.

Sorry, my words aren't coming out right, its so hard to explain.

These words echoed exactly thoughts I/we (the family) have had:

I am now so tired, confused and upset. He stated to day that he was tired of living like this. He has still such an insight into his condition, but has no spacial awareness and mobility almost gone. Its a bl---y awful disease.

All my love,

 

[daughter]

Oh Connie, I'm so sorry you're going through such hard times. I can only imagine how difficult this must be for you. You're always there with words of comfort for others but all I can offer is that I'm thinking of you, {hugs}

 

[BeckyJan]

Tired, confused

Everyone else has expressed how I feel for you. Know the feeling as I feel David is not so far behind - he today has said he is 'fed up' when would it all end? - we alll know when - so sad. Anyway day by day etc etc. - try not to get too depressed as we also know that suddenly things brighten up for no apparent reason. We are off to Alz cafe to meet some wonderful friends - we would not have met them without this dreadful disease!!!!! - Keep your chin up BeckyJan

 

[Loiner]

connie hugz, yeah tis an awful disease, and we cope, somehow, just take it as it comes, and look forward to when things get better, as they always do, even a little bit

hugs

David

 

[Nutty Nan]

Dear Connie,
The only thing that may make your situation vaguely bearable will be efficient professionals and a warm, welcoming nursing home for Lionel - I feel for you and hope you get the help you both so desperately need. Tiredness is manageable, but not when it is coupled with stress and despair.
We are not 'far behind you', and the first time the consultant suggested I ought to think of 'alternative care' for my husband, my heart stood still, my mouth went dry, and I just wanted to scream. And yet, I know that one day, it may not be a matter of choice any longer.
Thinking of you both and sending you hugs and best wishes!!

 

[connie]

Lionel today.

Firstly a big thank you for all your kind thoughts. It really helps.

Am more settled tonight as Lionel was found a place in a local nursing home (on the EMI unit) for his 2 week assessment. I realised that I knew 2 of the patients on his unit (they are permanent residents) and know from their wives how well they are treated. Staff seem very nice, and he has a lovely room.

Hopefully, and fingers crossed, he will come home and they can put some extra help in place. It is the fact that I cannot physically lift him that is the main concern for me. If his decreased mobility, and motor skills, can be recognised maybe something will be done.......I know I could not have gone on for much longer.

I was alright my booking respite, but that was only making me feel better, not addressing the situation. Lionel (bless him) was more like his old self when I left him this evening.

Take care of yourselves and give yourselves a pat on the back for all you do.
It is something we all deserve. Love Connie

 

[Robert]

Hello Connie,

Just wanted to say how sad it made me feel to read your post, especially as you have responded to so many of our posts in the past.

Somehow it seems to be particularly cruel that you and the other moderators respond with advice and support to others, while suffering the same agonies of mind that many of us experience in this terrible journey with our loved ones.

I've admired your endeavours to give Lionel as normal a life as possible under the circumstances and can only hope you both get the support from the professionels, you so richly deserve.

Love Robert

 

[connie]

Hi, where do we go from here?. This is a new ballgame for us, as in the past I have accessed respite for Lionel to enble me to take a short break.

Today: a whole new ball game. Lionel is in a home NOT OF OUR CHOSING) for an assessment. O.K. but I telephoned thehome this morning (mistake No.I ) as I realised I did notwant to hear their reply.

Have spent some time reading past posts from Norman and Bruce.......How these
guys have really been there, done that.!!My hat off to them.

I am so confused, I do not know what will happen next......Will extra services be put in place?

I will keep you posted ( for those that are interested) Until then, good luck, Connie

 

[purchase]

Dear Connie

Up early on Sunday morning with cup of tea reading the posts and yours really pulled at my heartstrings.

So sorry to hear about your bad week and hope that you are now getting some rest, you certainly need it. I know how hard it is when you are tired and stressed and my mom is in care permanently.

What you said about phoning touched a cord. I did the same last week to be told that mom had had two falls and was feeling dizzy and trembly. The GP is monitoring the situation so we'll see what happens.

Please look after yourself. I have read your posts before and always thought how positive you sound and how well you do so look after yourself and keep us posted.

Love Jacky

 

[janew]

Dear Connie

Just read your post and to let you know I am thinking of you. I have not yet got to the position where I have to put my mum in care but I do know how hard it is to cope with someone with AD and I know when mum goes into respite it seems strange having that empty space where she should be.

(I am not very good with words) but will keep you and Lionel in my prayers.

 

[BeckyJan]

Dear Connie: I guess this is another phase for you and already you seem to have it in hand, however confused you are. Someone said to me that with this AD you get sorted out and then bang another thing comes along. I just hope you reach this plateau soon.

We are not quite there with you yet but I do feel sympathy especially as I do feel that David's path down is speeding up. Up at 2.30 am as he said we had to get ready for the two men coming - he had arranged for them to come and I was silly to say otherwise. (I am not daft he said!). Having persuaded him that they were unlikely to arrive at 3.00 am he said he didn't want to let anyone down. (There are no 2 men due to arrive). This morning he is totally unaware of all this.

I hope Lionel is settled - you seem happy with the home he is in for his assessment.

We are thinking about you. Best wishes BeckyJan

 

[Rosalind]

Connie, you have had such a difficult time that you need to give yourself enough sleep and perhaps a few little treats, just to get back on an even keel and assess your new situation. Whatever happens, you absolutely must not think you should/could have done more - I read your posts and think if only I could want to be that nice to my husband as you have been to Lionel. I'm sure in a week or so things will seem more bearable.

 

[Amy]

Thanks for your reply on other thread Connie, I had been wondering tonight how you were getting on.
Amy

 

[connie]

Update on Lionel

Hi, well I visited Lionel on Monday, when he seemed brighter in himself. However he stated that he HATES it in the home, and please would I not leave him there.
Sat and explained as simply as I could what was happening and why. He says he understands, but please could I take him back to where he has been before for respite.

This home is very good on nursing care, but being an EMI ward their really is no one for Lionel to attempt to communicate with. Felt very low when I left and have been unable to sleep.

Visited again today, Lionel more settled and accepting, but still insistant that he comes home or is moved. Mobility very, very bad. Speech very garbled except....he turned to me at one point and said very clearly " do you know I love you so much it hurts in here" and put his hand on his chest. Tonight I could weep, not for me, but for what is happening to this truely, lovely, man.

I shall bring him home at the end of next week, whatever the outcome of the assessment, because I have promised.
Realise I shall have to really think about what happens next.......maybe just wait for the next crisis.

Take good care of yourselves, Connie

 

[Michael E]

Connie hi,

Thank you for the gentle reply on my thread but what is happening to you is far worse. Must be agony for you. There is no answer of course except to say human beings are remarkably resilient and even those who do not have AD get lonely and unhappy but do, in the end, adjust to prison sentences, long term hospitalisation or even isolation.

I think because they know us and recognise us as someone who is mainly kind and generous they will try to use us - manipulate is a horrid word and not the right one but I am convinced a degree of this goes on...

Doctors are warned never to get emotionally involved with their patients for all the reasons you are suffering guilt and pain at the moment. Trouble for you and I and the others is we are emotionally involved and therefore very vulnerable...

Its a bitch of course... and there is no true answer but I am thinking of you

Michael

 

[daughter]

Hi Connie, this must be so difficult, it's just so unfair, I've just seen Lionel's picture - he does indeed look a lovely man. Thinking of you, Big {[hug}}

 

[Norman]

Hi Connie
I hate to see you so unhappy.
You really are going through the mill at the moment but you can cope .
Thinking of you Warm wishes
Norman