22. Have we turned the corner?

Going in to visit Mum I was greeted by the lovely Helen."Can we have a chat?" she said."Olwen has been much better but I have been keeping her in her room and she has been much more settled" I replied that I had already worked out that taking her out was not helping her. So it was good to have that guidance that even taking her to another sitting area was not advised.

I then went to see her in her room and was greeted with the statement "I have decided to go into the nursing home in Old Town Lane" (the street she had bought a flat in thirty years ago.) "Did I remember it?" Well I didn't. "I know quite a few people there and I think I will settle quite well"As Helen said "well we can be the nursing home in Old Town Lane!." Then there followed a conversation about how she could go to Bowers for her provisions"Yes" I said " Their nice flap jacks and Pork Pies!" Even I remember those. She did admit that Mr Bower would be getting on abit now! Then she remembered the butcher "Nice lamb chops and sausages!"

It was Tuesday and then we had a visit from Paul the chaplain. She did not remember meeting him before but asked if he was a resident here which he took in good part. "No but it sometimes feels like it! " he said but the next thing she said was " She was going to put her daughters name down to come in" so we had another laugh. I only hope this all continues! But I am sure no risperidone is also helping!

21 Dealing with dementia

On my visit today I was greeted with"I have decided I am not staying here"well that was nothing new. "Why was that?" I asked, so then she launches into a horrific story as to what had happened last night."Well you must have been dreaming and had a nightmare" I said but that was fiercely denied. You know it could not possibly be true yet it sets up a niggle that perhaps 1% of it might have happened because they are still very sensitive to carers body language and attitude. After asking the carers what had happened it emerged that they had caught her trying to get out again so today she was back on Risperidone. "Another place won't be any better" I said
She then said two things that undoubtedly were true for her ? "It's frightening!"and "It's horrible!"

Dementia is truly a dreadful condition and she certainly suffered from it while she was with us. Men getting into her bed, children looking in the window,an old lady sitting in the corner and I found the crazy conversations very waring. We feel sad that things are not happier and you wonder if you should have persevered abit longer.

20.Wednesday outing! Maybe the last!

Yesterday I had been updated re a change of medication, a month off Risperidone and I feel happy with that.So I fronted up today to see if she wanted to go out.

As usual she was game so we started off at the Golden gate for Sweet and Sour Fish. She found the carrots a bit al dente but had eaten everything else but she wanted a refund! I was then going to take her down to the river for an ice cream but she wanted to go to Garden city Miss Maud's and evidently wanted a second lunch but I just ordered coffee and cake. She really wanted sandwiches which I eventually worked out so I got some to take home but she was grumpy. " Well that was not much of a party" "You did not do the right thing" it is very hard to work out what she wants so I said "Oh well I did my best!" Getting back to Braemar she said she was not going to David Jones again, of course we had not been there but I was left with the impression that she had not enjoyed it much. Anyway it's probably too much for her,and it really is not worth me making the effort. I came home and told Bob it was the last time I was taking her out . Anyway now have a good excuse it is getting too hot to go out as the weather is warming up

19. Norman, Josephine and Whatshername!

Mum in a pleasant positive mood today !" How's Norman she asked? " Ï don't know anybody called Norman" , Did she mean Bob? " And how's Josephine?"even more obscure and then she resorted to Whatshername? Robyn maybe. Made a cup of tea and the conversation continued along these lines but left feeling more positive.

However the next day when we were at bridge she escaped. Down to the highway and across it with her frame apparently holding up traffic! Oh Dear. Sure they will not want to run the risk of this happening again so guess that next week they will be moving her to the lockable unit.

When we visited today she told us along story that they had been held hostage and in order to escape she had had to hand over her ring. We think that was because they had kept her the rest of the day in the locked unit. Its a sad scenario but there are are some funny bits but have every sympathy that it is not funny for her and we all wished she had been spared ending up in this situation

18. Six weeks on

The first two weeks are the worst I was told, but I can tell you that is not true. Six weeks on and Mum has been truly dreadful. It began on Sunday when I got a call at two in the afternoon that they couldn't settle her. She was being disruptive, going into other peoples rooms and was wanting to go ! I said I was coming in anyway so went abit earlier and sat with her for three hours when she never stopped talking once mostly rubbish going back to Hailsham Road her childhood home in Liverpool which she wanted to sell , followed by all her real estate philosophy as to how it was better to let the place go cheap to get rid of it.I sat there and made few comments.I did say to the nurse on duty that I wondered if the medication they were giving her was hyping her up as she never paused for breath.

Monday I did not go but got a call from the lovely Mark. "This is not an urgent phone call"he said but I was pretty sure that it was to say she would be better downstairs in the dementia unit. Tuesday (today) I went in taking some nice afternoon tea and found her sitting asleep in the corner sitting area. I did not wake her but when she did awake we went and had our cup of tea. From then onwards she put on an Oscar winning performance about not staying and how I had turned against her etc which of course I took no notice of. "She only wanted a quiet life "she said "Well you can have that here"I said but of course it did not placate her, infact anything I said produced more and more fury and tears so that in the end I felt she was just doing it all because she had an audience Me! So I said "I seemed to be upsetting her so I would go and hope she was more cheerful the next time I came"

Bob is investigating a cruise holiday out of Fremantle and I must say I feel it may be a good thing, perhaps she will settle down but I could do with a psychologist to tell me how to handle these difficult behaviours. No it is not pleasant to see her upset like this ,but it is really of her own making.

17. First outing

After Mum had been in Braemar four weeks I thought I might see how she coped with going out.I couldn't manage a Wednesday but went on Thursday to see if she would like to go out. She asked what day it was and then said Yes she would like to go out on the next Wednesday, so the next Wednesday I fronted up again. She managed the walk to the car.

We decided on Garden city as she had been asking the staff on a daily basis how she could get there.Parking was difficult, She was noticeably more frail than the last time we had attempted it. We got a table at Miss Maud's and I chose what I thought she would like Spinach Crepe. She ate every mouthful,then coffee and a lemon tart.then back to the car.

All the conversation had been about how she could get home from the facility, she was worried I wouldn't know where she was, the girl last night had told her to stay because it was safer for her even though she'd offered to pay the petrol, and when it was time to get on the plane she wasn't on it, and her friend Robyn had also refused to take her home. That is how the conversation went. "But Mum" I said "this is now your home and of course I know where you are" So I was a little apprehensive about whether she would happily go back but luckily she did. "Was it worth all the Effort?" I said "Well it is nice to get out " she said so I suppose it was!

16 Nursing Home Day

N.H.Day

Monday dawned. I informed Mum that to day I was moving her into residential accommodation for me to have abit of a rest. "I'm not going anywhere " she said  Oh dear this was not going to be easy. Eventually she backed down  and got in the car.

Throughout the short ten minute journey she kept up a diatribe that I was despicable and this is obviously what I had been wanting for a long time which of course was not true. We would much have preferred her to die at home but everyone was telling me  that it was time for a nursing home. Falls, incontinence etc.Having looked after her for two and a half years  we did not feel she was going to last much longer.

We got to Braemar http://www.braemar.org.au/ and then of course she refused to get out of the car. I went in to tell Sharon that we were here  but she did not want to come in. "Will my charms help?" she said "Yes They Might" so she came out to the car and said"Hello"to Mum and that they were expecting her etc. But still Olwen refused to budge. Stalemate for about half an hour. Sharon went back to her work.  Eventually Mum made an effort  to get out of the car. with the enticement that they had lunch on. She  still had a good appetite and enjoyed her food I said I would help her with her bag. "Make sure you don't take any money out of it" I let that one pass! and we got inside. She immediately said"  "You're putting me in a home"  as unfortunately you pass notices essential to the work place " remember to wash your hands" and workplace advocacy etc. Mum was 101 and a half but not dumb but she could be rude. "Look  at her" she said as we passed an old lady in a wheel chair. I hope that poor lady was deaf. We got to her room, her lunch came  and after lunch a lovely carer came to take her to the toilet and she cooperated. I stayed all afternoon until tea time and then left. It was a day I was glad was over!

Next day  we took in her chair and some flowers to brighten up her room. She was sitting in the lounge in a wheelchair, something she would not have accepted a short time ago. Indeed much as she loved shops she would never consent to a wheel chair hire  around the shopping centre and of course she still called them bath chairs and not many people would remember them being called that! Yes it is confronting seeing your mother now drinking from a plastic beaker rather than her beloved china, being given a bib akin to a babies at meal time instead of a serviette yet she was accepting it  with no complaints. I really think that when the time comes for you to go in a nursing home you do not notice your surroundings  and it is not the horror you imagine it to be when you are young, active and more switched on.

On subsequent visits I mostly found her asleep  most of the time, she enjoyed what I had brought for her,  tangerines, a drink, dry ginger or cranberry and of course sweets but into week two  she has only asked about going home once. Of course they can't  stop her having falls either and she got nasty bruises on her face with the first and they are trying to get her sleeping at night and then she may be more alert during the day. But Yes it was time.

15. Falls and Dementia

August dawned still quite cold. A couple of bad nights and first fall  on the 9th early morning but Bob on hand to help get her up. We now have someone every morning to get her up showered and do her breakfast. Even though they are often here at seven sometimes she has beaten them to it and managed to get herself dressed so of course is then uncooperative,doesn't want a shower but now she is incontinent needs one.

Next occurrence, again an early morning one was when she tried to go to the toilet without her frame which I think sometimes she can not see. Three days later one evening she was on the floor, Bob was out. I managed to get her into a kneeling position with her hands on the chair arms and with abit of help she managed to pull herself up.

While this was all happening her dementia was also getting worse, imaginary conversations with people that weren't there but of them all, ladies ,men the most constant were three little boys. One day I got home from bridge to find her quite distressed that one of them was ill and needed to be taken to the doctor. She would not settle all afternoon culminating in her walking a long way round sitting on a chair that wasn't there and sustaining quite a nasty bump on her head. In all she had seven falls in August. It was becoming clear that we were on a downward spiral.

Everybody was telling me it was time for a nursing home so I rang up to put her name down thinking I would be lucky to get a place before Christmas to be told to come in the next day for an interview to be told there was a bed available right away. Have to say it was providential. The nursing home in question was Braemar  the one I had been on the committee of for 25 years not as flash furnishing wise as Berrington and abit dated with too many plastic flowers around,  but we did know the care was good and Bob felt far more confident of her going in there than  the place she had been to for respite where it was very hard to find staff available. I did not have to pull any strings. So we had to start introducing the topic that she was going in residential care for me to have a rest but of course it was extremely difficult  for her one to hear what you were saying and two to understand it.

14. The Escape

On Tuesday Mum appeared very unwell. She lost her teeth overnight which did not help but she spent 90% of the day asleep in the chair looking like she was dead. And the rest of the time was having imaginary conversations with people. We got her to bed , she is not really managing to get to bed herself now which she used to do and neither of us would not have been surprised if she was not with us in the morning and that would have been o.k. Save her and us of going through the nursing home trauma. However her shower lady arrived and got her up and showered but I decided she was not well enough to go out and I had a sitter booked for lunch. I went out and when I came back with a new D.v.d to catch up on we sat in the lounge, her sitting in her chair by the window. Anyway after about an hour she got up and said she would be going and that it had been nice meeting me. So had abit of a giggle at that but assumed she would be going to her room . After about twenty minutes I thought I would go and get the mail to see our neighbour . "Have you seen Mike " she said."no" "well he's just seen your mother walking up the drive" So we followed to find Mike trying to direct her home. She had nearly reached the highway. We turned her around and told her there were no shops nearby. "You know You are awfully like my daughter" she said to me at which Kathy and Mike cracked up laughing All this l happened after I had remarked to Bob that at least we wouldn't have a wandering problem as she was not as mobile as his mother had been.

13. The nursing home conversation.part two.

Well we had a fantastic holiday in Italy although have to say the food did not agree with me. I had two vomiting attacks after scheduled meals, too fatty for me I think. Luckily was not incapacitated and able to do a full days sight seeing the next day.The cooked breakfasts probably not the best for me either. Loved the Bruschetta though and that is what I always ordered. We walked a lot and our knees and hips ached. My shooting stick plus seat was very useful especially on steps but we are certainly conscious that cruise holidays are looming closer! Again could have travelled even lighter, that would have been an advantage.

Now we have been home two months.We have noticed deterioration in Mums condition. She is now incontinent and has difficulty dressing and undressing and her conversations are more shall we say unusual. Bob has loads more patience with her than me I have to say . She usually can not understand what I say and shouting is very tiring for me and not very productive either.

But what causes me the most stress is a broken night and that occurred this week with her coming down the corridor at 3 saying "Am I too early?" in her Belvadere voice. It makes me so angry and then I have no hope of getting back to sleep and am a grumpy wreck the next day! No good complaining to her because she swears black and blue that she didn't do it. So I just suffer stress plus plus. Both Bob and I feel it is time for the nursing home conversation. What I would like to happen is for Mum to say" I am getting too much for you and I should go to Berrington permanently." Can not blame her for not saying this as she had no insight whatsoever.

Luckily today a review visit was scheduled from her home care package and have now got extra hours scheduled, only three extra hours but now she will be showered and dressed six days a week and I will just bring it up at every opportunity that I am getting very tired and need more help. Again it reinforces to me to never do this to your children and I am quite adamant that I won't!

12. Respite achieved.

Easter Monday dawned, I am a nervous wreck but all the clothes are labelled, all the cases packed. After not a very good nights sleep on the 22nd after breakfast I broke the news to her that today was the day and we were taking her to the accommodation that I had organised for her. And she got in the car! What a relieve!I It was a help that Bob came too. At Berrington I explained that she was very apprehensive about it all but I stayed for lunch and watched William and Kate visit Uluru on the T.V. Then I took her down for tea and left. There had been abit of talk about her wanting her supply of Panadol (euthanasia) . The next visit a day or two later was quite positive then the one after that difficult but the last visit ended quite positively. Respite achieved.  What a relief! Italy here we come!
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11 The fat lady hasn't sung yet

Mum brought up the subject herself that we would be going away soon yesterday."Six weeks" I said gleefully. "Well I am sure Robyn and Don will help me out" she said " Well Berrington will be very nice " I said.

Today she must have mentioned it to Robyn, the lady who helps her in the shower so when we go out to the doctors appointment she had been asking for, she starts saying that she is not going anywhere. "But its very nice" I say."Too expensive" she says,in fact much cheaper than home instead. "There'll be no money left for David " she says" I am not having you organise my life for me. I am going to do what I want" "I have been looking after you for two years and have had three weeks off in that time" " You've had plenty of holidays " she retorts.

Then before tea she wants to give me her ring. I don't want her ring I just want her to be reasonable and go for respite for four weeks without all these unpleasant arguements

10. Not a good week

The week started with a trip to Garden City to get the hearing aid cleaned. In itself not hard but Mum got upset that I hadn't done it in the morning going in the afternoon and then thought, although I had told her I was taking it that it had been stolen. Bob had to calm her. Oh Dear!

Having got the Christmas period over I then became obsessed with introducing the respite issue. Having not enjoyed being left in the morning I pointed out that if she didn't like being left alone she had to consider respite. "But I dont mind being on my own " she said although she had been in tears over it a couple of hours earlier.

The respite situation simmered along, me trying to introduce it at every opportunity, her getting upset, me getting angry.

Anyway I made another attempt to call the carers counselling line. "It's not me that needs counselling " I said "It's my mother who won't accept respite," but of course it is me because the whole situation is making me very angry and who knows what it is doing to my health.Anyway they reinforced the things I have been doing like keeping on presenting it to her and being strong against her manipulative behaviour.

Any way we let up for abit and then one day Bob got her to agree to go and have a look at the place. Well she could not fail to be impressed. It's all new and luxury plus plus but cleverly they showed no areas with old people in them. Anyway she more or less agreed it would be alright but I will not believe it happening until she is safely installed there on April 22 nd