Feeling horrible!

[LadyA]

I've had a lovely day out with dau! "Where shall we go? What shall we do?" we asked ourselves. So we started out with a big breakfast here, and then set off. We decided to go to Kilkenny, which is less than an hour up the motorway - she was driving, as I don't like driving much, especially with my back still not too good. On the way, we spotted a signpost for Dunmore Caves http://www.heritageireland.ie/en/South-East/DunmoreCave/ - and as we both wanted to see it, off we went on a detour. It was fascinating, and well worth the trip. And the exercise! 300+ steps downward into the cave chambers, and 300+ steps back up again! You feel that, when you live in a bungalow, I can tell you!

Then we went on into Kilkenny which is a brilliant town for browsing shops. We didn't buy anything much - I found a music box in a charity shop for William, as he had broken the one he had, which he loved. He won't be able to work this one either, as it winds up, but I or someone else can wind it for him. I'll have to look for one that starts playing when you lift the lid, without needing to be wound. And I bought two boxes of herbal tea - that was all, apart from our lunch. We looked in antique shops - the old fashioned ones, that are packed to the rafters with all sorts of stuff, to the extent that you can't actually look at anything for fear of bring the entire stock crashing down around your head! We looked in gorgeous crafty shops with hefty prices. We looked in book shops. We looked in jewellers - we gaped at Faberge jewellery, priced in thousands for not a lot!! We walked and we walked! And then we came home, tired and happy, not least happy by not having spent much money! They are saving for a house, and I am thinking of William's nursing home costs! And besides, we didn't need anything. A good day.

 

[garnuft]

Sounds lovely! Your feet will be aching but a 'nice' ache.

Those caves sound amazing...a Viking massacre! Going to read up on them in a bit.X

 

[truth24]

Glad to hear you are making the most of your 'me' time. Sounds a lovely day.

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[cragmaid]

What a fab day ( apart from the steps )

 

[lu]

Hi ...We need these days, don't we? Happy for your relationship with your daughter. She must give you a lot of joy. Hey, if it was me there would be 300 steps down and 600 back up. Cheers.

 

[LadyA]

As horrible as I was feeling at the start of this thread at putting William into respite, I have to confess, that I am now, quite frankly, dreading next week when he comes home. I hadn't realise - not nearly - quite how awful things had become here, until William wasn't here! The thoughts of going back to that, and it will probably be worse now that he's had the male care staff doing all his personal care for two weeks, are literally making me feel sick.

 

[winda]

It wasn't until my husband had gone into hospital that I realised just how difficult life had become, I had almost begun to see it as normal. This was despite being told by various family members that I shouldn't try to continue any more.
I must admit that although I felt very guilty, I was quite relieved when I was advised by the consultant to agree to a care home. And looking back now I can see that I really couldn't have continued any longer. It is the nature of the illness that creates this dilemma, the curse of dementia.

I hope that things won't be too difficult for you, LadyA, when William returns.

 

[truth24]

Hope things won't be as bad as you are dreading but have often wondered how you start coping again after a period of 'peace' (that's what I am hoping that F's respite will bring me but I'm sure everyone has different hopes).

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[LadyA]

Perhaps William's period of respite has clarified things for you and helped you to realise that you really can't cope with him at home any longer, and perhaps need to be looking into a permanent move to care for him soon. You are entitled to a life of your own, especially after caring for him for so long. I hope things aren't too bad when he comes home.

Well, we are moving toward permanent care. The forms for funding approval are gone in about 2 1/2 weeks ago, and I'm told it normally takes between 6 and 10 weeks to process - but last weekend was a 4 day holiday weekend here, and this weekend is a Bank Holiday weekend too! So that will cause further delays. The PHN told me that they will be trying to fast-track William's through because of his aggression, and not allowing me to change him/dress him without the risk of him getting aggressive. And I've put him on the waiting lists in several nursing homes in the area - but I have my fingers crossed that he can get a long term bed in the place he's in for respite. I had thought I wouldn't like it long term, as it appeared to only have one day room, and nowhere quiet to visit with him etc. But today one of the care assistants showed me around - and it's actually lovely! Upstairs, they have a couple of quiet nooks with armchairs, and also a "parlour" - a lovely smaller, quiet sitting room that's often empty. And today too I saw some of the activities - there were two physiotherapists there doing some exercises with those in the day room, and the exercises were, I could tell, specifically geared to elderly people who were losing mobility.

Today however, William was quite upset, wanting to come home with me. Several times he started to cry and said "Let's leave and go now." and that he wanted to be with me. I wonder if it was because I hadn't been able to get in since Sunday last? But I had to go back later - they'd given me the wrong laundry - and they said he had been settled with his lunch before I got to the front door. And I have to say, the staff were very quick to see that he was getting upset and wanting to leave with me, and came immediately to distract him.

I bought myself a huge bouquet of flowers!

 

[angelface]

Lady A, you deserve those flowers. Time to look after you a bit now?

 

[LadyA]

I am in a major pit of - not quite depression, although I was very depressed earlier today, literally almost crying going around Tesco buying in groceries for William's return - but certainly very down in the dumps. To be frank, I don't want him home again! I'm not sure I can cope with all again. The only thing keeping me from dissolving is that I keep telling myself that it's only temporary. He will be going into full time care. And he's booked into respite for a week again in June.

 

[garnuft]

It seems you've found the end of the circle Lady A.

Hard choices made easier by the hard struggle. I hope you press ahead and you are able to have the help William needs as soon as possible.

Chin up. Make it happen, it won't happen otherwise. XXX

 

[Lindy50]

Well said garnuft

I am sorry, LadyA, that your William has to come home and you have to go through the whole process of him going in again

However....the good thing is that over the last couple of weeks you have begun to find yourself again, and to know that you both benefit from him having the support he needs in a care home.

So chin up, make the most you can of his time with you, but know that you have made the right choice in going for permanent care

Good luck

Lindy xx

 

[winda]

Agree with Garnuft and Lindy50.

I hope it won't be too long before a permanent place is found for William.

 

[LadyA]

Yes, I know - you are right. This isn't new, this feeling. Before his dementia, William was a terribly controlling bully - but was that the panic of him knowing something was getting out of control, but not knowing what and not knowing what to do? It went on for many years before any other signs of dementia showed themselves. Except the paranoia, which had always been there to some extent, but which gradually took him over completely. But the thing is - he used to travel a lot. And this feeling of dreading his return is so, so familiar. His dementia actually brought such relief in a way, because he lost all that controlling thing and his real nature shone through - he mellowed out and became so nice for a few years. Except that the paranoia is still there. Of course, that was during the more moderate phase. Now that he is into the late stages, he is still really nice and very loving - but the aggression about personal care, the clinginess, the sleepless nights, the just sitting staring and refusing to do or take part in anything at home. No - he needs more stimulation than he can get at home with just me. And of course, he needs male care assistants on hand to help with his personal care when needed.

 

[truth24]

Nothing I can add to the other comnents but am thinking of you at this difficult time.

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[LadyA]

I decided not to wallow! I spent a happy three hours this morning raking all the cut grass from some of the lawns - we have a huge garden, and the grass had gotten out of hand, because of not being able to be out of sight of the house. Son in law and his crew had come one evening and mowed and strimmed, but it got too dark to gather the grass. I had got some raked up already, and decided to do more today - but wouldn't you know it? It rained heavily all night! There's still a good bit to do but the man that stays with William while I'm at work is coming in the morning to finish it before William comes home in the afternoon.

After the raking, I did a quick lunch of stir-fried veg and noodles - I have enjoyed stir-fries again! William won't eat them now, although he used to love them, and the more different veg I would put in, the better he liked them - he actually used to count all the different veg before he would eat! (Oh, yes, and a chocolate pudding with sauce for dessert, but don't tell anyone!). Then I tackled the enormous pile of ironing - and took the opportunity, while ironing William's things, of starting to put i.d. labels in his clothes. They are iron-on name labels that you write his name on with an indelible pen that's provided, and then iron it onto the garment. And then I baked a double batch of courgette muffins from grated courgettes I found in the freezer when I defrosted it yesterday! So some of the muffins will go back in the freezer when they cool. They are my favourite cake, and you wouldn't know there were courgettes in them - except for the green flecks!

And tonight, ladies and gentlemen, I am going to, after my busy day, loll in the recliner and watch Pirates of the Caribbean! I've never seen it, and have wanted to! I have not even opened the gate to the driveway all day - I did think of going out on the bike, but it's been misty and a bit windy, so I thought nah! I've had enough exercise with the raking of the grass!

 

[Jinx]

Will be thinking about you tomorrow, hope it goes better than you fear.


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[winda]

I also hope that things will be better than you fear LadyA.

 

[jaymor]

In my thoughts today,

Jay