The Last Post

Who would have thought when I wrote that post in January last year that Mum would deteriorate so quickly.

3 weeks after my post we had a phone call to say Mum had some sort of tummy bug but it seemed that other residents also had it so we thought it was probably quite minor.  Sadly this was not to be.  She went downhill so fast it was frightening.  She couldn’t keep anything down then she didn’t want to eat or drink.  She was put to bed and seemed to do nothing but sleep.

On the 5th day I had a phone call telling me Mum was having difficulty breathing and we were advised to go to the Home right away.  Unfortunately she died just before we arrived.  My brother and sister and I all went in to see her then sort of wished we hadn’t!  I knew I wouldn’t believe she had gone unless I’d seen it for myself.  However I expected her to look more peaceful than she actually did.

I’m glad that she didn’t linger on feeling really poorly and also that her last 6 or more months had been relatively comfortable.  I tell myself that she just decided she had had enough and was ready to go.  Obviously it was incredibly sad but tinged with relief for both Mum and the family.

I know I should have written this post a long time ago but it just seemed so final.  However having just past the 12 month anniversary of her death, I felt the time was right.

I think about Mum every day one way or another.  I watch something on TV that I know she would love, I visit places I used to take her or I catch a glimpse of her face when I look in the mirror!  Miss you Mum but you’re always in my heart.

 

 

Still hanging in there!

Well, a year has passed and what a year it’s been – full of highs and lows!

The situation continued during the first part of this year with Mum getting slowly worse and losing so much weight we were fearful for her health.  She just didn’t look like Mum any more.  She had to be moved everywhere by wheelchair, she was frequently very unhappy and quite verbally and physically aggressive when the staff tried to give her personal care.  She obviously didn’t like being manhandled in any way.

By July she was down to 5st (which is hard to take when she used to be a size 22!) and hardly eating anything.  She spent more and more time in bed and was having to be fed drinks through a syringe.  Then finally the doctor put her onto ‘end of life care’ and with our permission took her off all medication.  Apparently various medication was on hand to ease her through her last days when it was required.

Then for no apparent reason, she began to rally very gradually.  She spent more time sitting up in the chair by her bed.  She began to take small amounts of food.  She seemed more alert and less unhappy.

Now she has put on 2st, sits quite happily in the lounge with other residents, can feed herself with a spoon and pick up a beaker.  Indeed, her eating habits have turned full circle and she is now polishing off a dinner and 2 puddings – just like she would in years gone by!  She is constantly chuckling (about goodness knows what!), constantly chatting (again about goodness knows what), still recognises her family and even walks with slight support from a Carer.  In short, it’s almost a miracle.  Obviously her dementia has not improved although she can seem to string together the odd sentence that actually makes sense which hasn’t happened for many months.  When Mum became so ill, her eyes had this dull, glazed look which was horrible to see but now her face looks healthy and her eyes are bright and alert which is wonderful.

Whereas it had got to a point where we used to dread visiting Mum, now it is something to look forward to.  The staff love her as she is so cheery and frequently makes them laugh, usually by her inappropriate replies to questions.  She even told me she loved me on Xmas Day which was a real tear-jerker.  Not sure she knew what she was saying but it worked for me!

So there we are, miracles can happen.  Of course she’s not going to get better but at least she seems happier and comfortable which is all we can ask for at this stage. I guess she’s just not quite ready to leave us yet!

 

 

New Home

18 months on without writing a post!  There have been some changes though.

Last summer we had to transfer Mum to yet another EMI Home.

Her deterioration had been fairly slow generally.  However in recent months her mobility had definitely worsened.  The staff had begun using a wheelchair to transfer her to the toilet and to meals and she had a habit of pulling backwards when staff tried to encourage her to walk. They said there was a health and safety risk both for Mum and staff as ‘transfer’ from chair to wheelchair had become very difficult. They had no hoist and the layout of the Home was such that they didn’t really have the space for one.

We were very upset at this change as we were generally pleased with the home and particularly with the staff and the way they looked after Mum.

When the time came to start looking for a new Home we were absolutely dreading going through the same rigmarole.  But of course we had to do it and were quite relieved when we found a suitable Home we all agreed on.  They assessed Mum and felt they were well equipped to meet her needs.

We moved her one Sunday in August last year.  She didn’t seem to realise what was happening and was quite happy sitting in her wheelchair in the taxi for half an hour.  There was a ball game in progress in the lounge when we arrived and she happily joined in.  So we left in her the staff’s capable hands while feeling terrified at whether she’d settle.

We were very surprised when the Manager informed us that she didn’t think Mum needed a hoist at the moment.  They had her walking from the first day, somewhat reluctantly but walking nevertheless!  Apart from the odd occasion when she hasn’t been too well, she hasn’t been in the wheelchair since arriving there…….very strange.  The new Home is much more spacious than the previous one so maybe staff find it easier to manoeuvre her as she needs the support of 2 staff when walking.  It’s a shame because on balance we do prefer the previous home – particularly the staff interaction.

Our misgivings with the new Home are probably more to do with our feelings than Mum’s.  She looks more unkempt and she won’t wear her top set of dentures which obviously makes her appear worse.  However her physical needs are being met and she remains surprisingly healthy.  She has lost weight but apparently this is quite normal (and she had plenty of weight to lose!)

At the end of the day we were just relieved to find somewhere for her as it appear to be becoming increasingly difficult to find vacancies as no new Homes are being opened to cater for the ever-increasing numbers of elderly suffering with dementia.  It seems tragic that we have had to place Mum in 3 Homes so far.  In our view this is because all the Homes are run on such a tight budget they have to fill a room as soon as it becomes vacant and their assessment of suitability does not take into account a resident’s future requirements.  I guess the problem is that each person deteriorates in a different way and some faster than others.  Let’s hope we don’t have to move her again.

Se still recognises her immediate family and calls us by name.  She talks but makes no sense apart from the very rare occasion.   She still loves her food and can manage to eat in her own fashion.  She still laughs at her own private jokes and still cries occasionally.

And so it continues………

 

 

EMI Home

It’s  been months since I updated this blog.

There comes a point where it’s all so distressing, writing it down just makes you have to go through it all twice.

A mere couple of weeks after I had written the last post, the Rest Home Manager approached me saying she wanted us to move Mum as she didn’t feel her staff were giving Mum the care she required.  I was really upset and annoyed because she had assured me that could cope with Mum’s illness and had even moved her to a better room.

I talked to Social Services who were also not best pleased as the decision by the Rest Home had been completely reversed.  However the bottom line was that we would have to start looking for an EMI Home once again, a task we really didn’t relish.

The next few weeks were incredibly difficult as we did the rounds of the Homes again.  Jean, Mark and I were starting to bicker as we couldn’t agree on anything and the strain was really beginning to tell.  Just when we thought we had things sorted, it had all fallen apart again.

It took a while but we eventually came to a compromise with a Home which seemed that it would be suitable for Mum even though we all had various reservations for different reasons.  We moved Mum in on the 15th May and it wasn’t actually as difficult as we thought.  As usual, I think we were suffering more than Mum!

It was a big shock to the system when we first started visiting Mum in the new Home.  As the old Home was just a Rest Home for the Elderly, some residents spent most of their time in their rooms so the lounge was usually fairly empty plus there was a quiet lounge we could use where we usually managed to have a private visit.  The new Home has two lounges but they are pretty full as there are 20 residents all with dementia and obviously they are not well enough to stay in their rooms all day. We can take Mum to her room but its on the lower ground floor so we have a few steps to negotiate which is becoming exceedingly tricky even with help.  Or we can take her to the dining room but that is only accessible by lift for Mum.  There is a lovely garden and we got into the habit of taking her out there but the last few weeks have actually been too hot for her to be outside.  I don’t expect that will last long though!

Her balance and spacial awareness continues to deteriorate.  She has had several falls, one of which resulted in a fractured wrist.  The hospital put a cast on her arm and she managed to pick it off.  They then put a stronger cast on and she managed to wriggle her arm out of it.  She now has a velcro splint which we can at least put back on when she takes it off.

So that is where we are up to at present.  The Home is not too far away for visiting.  We are visiting once a day between us.  As before, sometimes it’s a good visit…..sometimes not.  She often chatters away but is no longer able to make any sense at all.  Nor can she seem to understand when you speak to her.  She often gets distracted by the TV just like she used to do at home.  She will just start reading words from the TV to make conversation.   She still recognises her family…..just!  The staff say she’s settled in well so I guess we have to accept that.  She’s sleeping and eating OK.  She has a pressure mat both on her bed and her chair so the staff can be there quickly when she stands in case she falls again.

Several weeks ago, her false teeth went missing.  The staff hunted high and low but they weren’t to be found.  We have heard that this sort of thing happens pretty regularly in Homes, hearing aids and teeth being particularly prone to disappearing.  Luckily Mum’s lovely Dentist who she has been with for years agreed to visit her to take the moulds for some new teeth.  She should get those later this week.  It has been bad enough seeing Mum not looking her usual well-groomed self without having her toothless as well!

And so it goes on………

 

Rest Home

6 weeks later and Mum is still in the original Rest Home  ……thereby hangs a tale!

When we made the decision that Mum needed permanent care, we had a meeting with our Social Worker at the Rest Home and after meeting Mum, her advice was that she hadn’t yet deteriorated enough to need an EMI Home and suggested we find an appropriate Rest Home that would take residents with dementia at this stage.

Up to this point, we weren’t too happy with the Rest Home she’d been admitted to – we just felt that although the staff were very kind, they just weren’t up to speed with dementia and worried about how some of them interacted with Mum.  We also still worried about her on the first floor.  There have been a number of incidents where she was found either going up or coming down the stairs and she really can’t handle stairs.

So we started to look at Rest Homes.  Anyone who has had to tackle this task will know how hard it is – it totally drains you, as you approach each one optimistically only to decide that there’s no way on earth your mother is going in there!

We also had problems with many of the Rest Homes not willing to accept Mum because of the dementia.  So we began to look at some of the EMI Homes…..and obviously that was even worse.  It’s just the nature of what they are -most of them do a great job under very difficult circumstances – but it’s different when it’s your Mum.  Mark, Jean and I were also finding it difficult to agree on the type of Home we wanted which made things even worse.  And then there was the funding which threw another spanner in the works.

Inevitably, the longer time went on, the more attractive the original Rest Home looked.  It’s quite small with only a few people in the communal lounge, the staff are kind, the meals look lovely and it’s not too far to visit.  Also as time had passed, the staff had more of a handle on Mum – they understood her better, knew that when she got twitchy she usually wanted to go to the toilet, knew that when they had an entertainer in she preferred to go to a quiet room, knew that she didn’t like joining in games but did like talking to people one-to-one, even if she didn’t make much sense.  They had also started to make coffee the way she likes (with evaporated milk) and had bought in a particular fizzy drink she likes as she won’t drink water.

After about 4 weeks, I went on a much-needed holiday which had been arranged for months, in fact Mum had been booked in for respite elsewhere before all this happened.  I was away for 2 weeks and shortly after I got back, the Rest Home Manager said she now had a ground floor room come vacant if we wanted it for Mum.

Well, it seemed like fate.  I was shown the room which was in a really good spot, near to the staff if she got up in the night and right next door to the bathroom.  It was decorated over the next week or so and she moved in there several days ago.

The Rest Home Manager is quite happy to keep Mum on a permanent basis.  We know that this may not be possible in the future as Mum’s illness develops but at least it’s a reasonable solution for the timebeing.

We visit Mum every day, sometimes twice a day.  We have good visits and bad visits.  She still cries quite often and often says she wants to go home.  We tell her that she is not strong enough yet and will have to wait until she’s better.  Sometimes she accepts this and sometimes not.  Her ability to converse has more or less completely gone; she talks quite alot but little of it makes any sense.  But she still recognizes her family and often seems really animated, chatting away relentlessly about nothing.  She is sleeping well and eating well.

There is no easy answer but we are doing the best we can.

 

Respite!

10 days ago Mum had 2 falls in one day.  I came in at lunchtime and she was sitting on the bedroom floor, though apparently uninjured.  I couldn’t get her back on her feet so rang my sister to help but we still couldn’t get her up between us.  At one point she went quite pale and breathless so I rang an ambulance.  We laid Mum on the floor with pillows under her and a blanket over her….and there she spent the afternoon.  The ambulance took 5 hours to arrive!  I rang several times and it was always the same response.  There were higher priority emergencies apparently.

We managed to get her up before the ambulance arrived.  My niece came round and between the 3 of us, we got Mum up again but she was so unsteady on her feet, I was really concerned.  When the paramedics arrived, they gave her the once over but she was okay so they apologised for the delay and left.

She was very strange during the evening – forgot how to go to the bathroom and even when I helped her there, she couldn’t remember how to go to the toilet.  I got her to bed okay and went myself at the same time.

I was awakened at midnight as I heard her door closely followed by the bathroom door shutting.  I flew out of bed but was too late.  I heard a crash and a moan, and went into the bathroom (I removed the lock some months ago).  She’d fallen off the toilet and once again there was no chance of getting her back on her feet.  Maybe if she was a little frail lady it would be possible but Mum is ‘to put it politely’ rather a plump lady!

I rang my sister who came straight round and also rang an ambulance.  This time they were here within half an hour.

To cut a long story (and a long night!) short, my brother and I spent virtually all night in A&E with Mum and they finally told us that she had a water infection – that was why she was so unsteady on her feet and much more confused that usual.

Mark and I brought Mum home in the morning and I tried to get her to go to bed but she really didn’t want to.  I was almost comatose with lack of sleep and I just couldn’t stop crying.  I didn’t dare go to bed as I thought she might fall again if she got up.  I eventually threw myself on the mercy of Social Services.  I started crying as soon as they answered the phone so I guess they realised I had reached breaking point.

They suggested a few weeks respite in order to get her well again and give me a break.  I’d like to say that I hesitated but in actual fact I jumped at the chance.  It shows that Social Services can move quickly when they have to……..we had her visited by the Rest Home Manager, assessed and in there by teatime that day!

My sister couldn’t face taking Mum to the Rest Home so Mark and I took her in the car.  We told her that she was going to a convalescent type Home to assess her and build up her strength.  All the staff seemed very kind but we were really nervous about leaving her, particularly as the only room available was on the first floor and as the Home didn’t specialise in dementia, we did have anxieties about what would happen if she got up in the night.  Her room was accessed by a lift with the help of staff but she wasn’t too far away from stairs both down and up.

She was admitted on the Thursday evening and when we visited her on the Friday evening, Jean and I both came out crying.  I think it was just the shock of seeing our Mum actually in a Rest Home with all the other residents; she just didn’t seem to belong there – although we knew deep down that she did!   Also, she seemed really unkempt and when I went up to her room, her case hadn’t even been unpacked.  I had offered to do it but had been reassured that the staff would see to it.

By the Monday, we were really upset.  I didn’t feel that Mum had even had a wash or had her teeth brushed.  I complained to the Manager and by our next visit things had improved greatly.  She had been bathed and had her hair done and certainly looked more like her old self.  Also, her antibiotics worked fairly quickly and she was walking better and slightly less confused.

However, with the help of Social Services, the Day Centre, the GP and my family, we made the momentous decision not to take Mum home again.  It was incredibly hard…..every time we visited we just wanted to bundle her in the car and bring her back.  The bottom line is that I just can’t carry on as I have been doing…..it’s just too hard!  I am bone weary both physically and mentally and just don’t feel I can cope any more.

 

Two months later

As usual, no major changes, just slow and steady deterioration.

We are well into the swing of the Carer coming in the morning to help with wash/bath and dressing.  It has definitely been a help although I have had a few issues about timekeeping.  We have a variety of different Carers who are all wonderful, however they frequently come very late, very early or on occasion, not at all.  This is obviously the fault of their office and I have complained many times about them changing my usual times, probably to fit in with their schedule rather than mine!   I know it may seem I am being picky but I like to have Mum out of bed a little while before the Carer arrives or she becomes really cross or upset and it’s difficult to do this if I don’t have a definite time (within 10 mins either way of course).  On the other hand if I get her up too soon, it’s just as bad!  However on the whole, it’s a great help.

I may be tempted to ask for help at night in the future as getting Mum ready for bed continues to be a battle.  As soon as we’ve got her clothes off, she tries to put them on again, then gets angry with me for stopping her.

The communication problems continue.  Sometimes she can talk fairly well but at other times she talks quite fluently but using made-up words.  I looked this up the other day…..it’s called verbigeration!  There’s a name for everything!  When she comes home from the Day Centre she gets what we call ‘verbal diarrhoea.  She talks incessantly, seemingly about things that have happened to her that day, and they generally make no sense whatsoever.  Much of the time she talks with her eyes closed as though she is having a private conversation with herself.

The third day at the Day Centre has helped me have more free time.  There was just one week when Mum seemed to realise.  She was adamant she didn’t go two days in a row but didn’t argue for too long.  She still doesn’t like it which is odd as most other people who go seem to be very happy there.  However, at least she doesn’t complain as much as she used to;  she just accepts that it’s what she does.

I read alot about dementia and Altzheimer’s on-line and am never sure if it is a good idea.  I’ve been checking out the various stages of the illness to find out roughly where Mum is – alarming!

We have another check-up at the Memory Clinic next month but not sure how that will help at this stage.  I am also going on holiday next month while Mum goes into respite care.  I know that she is going to hate the idea of it and I am dreading telling her but I console myself with the fact that she is going into a lovely Unit where I know she will be well looked after.

 

Six Weeks Later

Well, it took a while but I’ve finally got some more help from Social Services.

I have a Carer coming in 4 mornings a week to wash or bath Mum and then help her get dressed.  It’s such a great help as Mum is finding getting dressed and undressed increasingly difficult and rarely takes advice or help from me, whereas she will do whatever the Carer asks.  I was also becoming concerned about her personal hygiene as she would tell me she’d had a wash when I knew she hadn’t.  It has made things much easier.

She is also going to the Day Centre for a third day…….and hasn’t even realised it!  That extra day to myself makes such a difference.

And finally I have arranged some Respite Care.  I was very anxious about this step but I have today been to visit the Respite Centre appropriate to Mum’s needs and I was so pleasantly surprised.  It’s a new purpose built unit that just takes 6 people but there is also a Day Centre so the clients can attend the Centre if they wish.  I had a full tour and was absolutely delighted with everything,

I have booked Mum in for 2 weeks next February and now feel alot happier about it.  I know it won’t be easy to actually take her and leave her there but I feel quite confident that I’ve done the best I can.

On the medical side, we took Mum for a check-up at the Memory Clinic 6 weeks ago and the doctors increased her anti-psychotic medicine but I can’t say I’ve noticed any difference.  We’re going back tomorrow so it will be interesting to see what they try this time.

Mum continues to decline slowly but surely.  She has some rather suspect toileting habits but luckily is still continent.  She has other odd habits like constantly tidying up the table beside her chair, putting away her belongings in the entirely wrong place like shoes in the bin and the other day I found a side-plate in the toast rack.  All fairly normal dementia behaviour, I understand.

The crying continues and an increase in anti-depressants doesn’t seem to have helped this at all.

One of the worst symptoms is her increasing inability to understand what people are saying to her.  It’s not that she can’t hear, she just can’t seem to compute.  I sometimes have to resort to simple miming actions to make her understand.

On the good side, she’s currently sleeping soundly at night but I expect the disturbed nights to return at any time.  They seem to happen in cycles.

Also on the good side, we don’t take her out too often now but I took her on a short run to see the sea yesterday.  We got out of the car on the prom and the tide was so high it was splashing over the wall.  I’ve not seen her so animated for ages – she’s always loved the sea.

 

Mum had a home visit by the GP 10 days ago.  I was quite anxious as she seemed to have got alot worse and her breathing seemed laboured.  It turned out she had both a water infection and a slight chest infection.  The GP has re-referred us back to the Mental Health Assessment Centre and we have an appointment tomorrow.  The GP wants to start Mum on anti-psychotic drugs but we have to see a Mental Health specialist before these can be prescribed.

I have also been in touch with Social Services to see if Mum can attend the Day Centre for a third day and to find out details about how to arrange respite care.  Respite seems a scary step to take but I think will become necessary very soon.   As usual Social Services are taking their time to get back to me!

On a better note, I gave Mum her Lorazapam tablet a bit late one evening by accident and she slept like a log.  I told the GP about this and she said as it hadn’t worked to settle her in the evening, just carry on using it to help her sleep.  So at least I am getting a better sleep again.

 

Time Flies

Another two weeks have passed already.  Mum seems to be declining more rapidly lately which is causing us much worry.

I contacted the GP again about the anti-depressants because Mum is still crying on and off but she reassured me that they can take ages to kick in.  Meanwhile, she has prescribed Lorazapam for restless evenings. The evenings are the worst time of day (usually starting at 7.30)  Mum gets up from her chair and starts to go somewhere but she doesn’t know where she wants to go.  Then she sits again and starts crying.  She says such heartbreaking things as “I keep thinking I’ll wake up tomorrow and everything will be back to normal”.  The getting up and down cycle continues roughly every 15 minutes until she goes to bed.

I’m not altogether happy with this drug as it seems to be making mum totally incoherent in the evenings and she can barely get up off her chair.  However, I will go along with it until I have to speak the GP again in a few days.

Mum has become more difficult in the night again – I knew it was only a matter of time!  The problem this time is that she gets up and is disorientated.  Can’t find the bathroom, then can’t find her bedroom or thinks she’s gone to the wrong bedroom.  So I’m disturbed every time she gets up – 4 times last night.  I daren’t take a sleeping pill or wear earplugs in case she falls.

She’s also finding it difficult to dress and undress herself properly.  She will disappear into her bedroom to get ready for bed and come back out wearing a new set of clothes.  She also rarely puts on matching socks even though they are put away in her drawer in pairs.

One newish symptom is that she can’t seem to understand what you say to her, even when she can hear you.  It’s as though she can’t compute the sound she’s hearing together with what your lips are saying.  The other day she had a fairly reasonable telephone conversation with her sister but as soon as she put down the phone and I started to talk, she just hadn’t got a clue what I was saying.  Very frustrating…….for all of us.