thank you for reading in 2007

I want to thank everyone who read and commented on my blog these past few months. As you will know, this has been a particularly stressful and worrying time for me and a huge transition for Mum. Your goodwill and encouragement, your suggestions and shared experiences have all helped tremendously. As you can imagine, facing this situation feels very lonely and so it has been an unanticipated benefit of the blog to have some companions along the way. Thank you particularly to BigAssBelle, LSL, Sorata, Dee, Henrietta and Y|O|Y.

Looking back at this blog, it seems possible to chart my rise in blood-pressure from the frequency of posts. I've written a record 31 entries in December, more than for any previous month and sobering when I notice that I was rarely writing more than a handful of posts a month at the beginning of the year (hang on, Greg, how many posts is a handful?)

I anticipate that I won't be posting quite so frequently from now on, provided that Mum continues to settle well at her new home. I'm naturally exposed to far fewer examples of her mental decline while she's being cared for on my behalf. However, I'm sure I'll have plenty to report at times, and I think it's necessary I continue her story, to document her progress in this next phase of her life.

Wishing you all the very best in 2008.

Greg x

what I have learned in 2007: different types of Care Home

Coping alone with a family member who is suffering Dementia is exhausting. That's the only excuse I can come up with for the following. In my search for a Care Home for Mum, I kept making the mistake of not distinguishing between the different types of Home out there. This is by no means an exhaustive list.

Retirement/Residential Home: these Homes provide accommodation, meals and (hopefully) activities, as well as some support with such activities as bathing and dressing. They are a good fit for those who are still mentally sound but who are becoming frail or unable to feed or look after themselves. They don't generally provide nursing care for medical conditions.

Nursing Home: these Homes provide all the above but have qualified Nurses in attendance at all times. Usually, these Homes are geared towards those with physical needs rather than Dementia, though some will specify that they can deal with Dementia patients. In my experience, these places tended to be quieter, with Residents in their rooms and the common areas empty. The fees tend to be higher (but then the NHS provides a free non-means-tested benefit up to around £100 for nursing care)

Dementia Unit/EMI: those Homes with an EMI (Elderly Mentally Infirm) capability will be secure units with higher staffing levels. This reflects the possibility that the residents are going to try to wander and will need higher levels of support. In my experience, there will be severely demented residents in the common areas, which might be distressing to witness. The assessment you receive from Social Services will tell you if an EMI unit is required.

Physical Disability or Learning Disability Care Home: these Homes are self-evidently for specific care groups, and may well be for other age groups.

Of course, there are some Homes that feature a mixture of the above categories. The place where Mum is currently living is designed as a 'village', comprising a set of common social spaces and facilities surrounded by 3 types of accommodation: self-contained apartments, secure EMI households and a floor of Nursing Care rooms.

If you are looking at Care Homes, make sure you have spoken to your Local Authority who will carry out an assessment of your relative's needs and then provide a list of homes fulfilling these criteria. Also, check the CSCI reports for the homes you find. These will show you what the home is doing right and any areas where they need to improve their service.

My advice is to look at as many homes as you are able. Plenty look great in the brochure or on their website, but you only get a true feel (and smell!) of the place if  you visit, and they ought to be able to cope with you visiting unannounced, too.

what I have learned in 2007: different types of dementia

2007 has been an education for me in lots of ways. Finally getting my Mum's problems investigated has meant that I've learned some distinctions between various types of dementia. I thought I'd share these here, for anyone reading who's going through a similar process.

'Senile Dementia' is a general term which groups all the different types of dementia experienced by the elderly into one category. Of course, the most common form of dementia is Alzheimer's Disease, accounting for roughly two thirds of cases in the over-65s. Alzheimer's Disease is a degeneration of nerve cells and their connections. Protein deposits tend to accumulate in the brains of Alzheimer's sufferers, but it hasn't yet been determined if this is a cause or effect of the problem. Progression of the disease can be gradual. I'm not going to write any more about this form of dementia, because there is so much information about it elsewhere.

However, there are several other types of dementia. Another form is Vascular Dementia. Vascular Dementia describes a number of conditions linked by a vascular cause (e.g. Hypertension, Stroke, Atrial Fibrillation). Often caused by a series of mini-strokes in the brain (Multi-infarct dementia), the disease tends to progress in a series of steps depending on the severity of each progressive stroke. Small steps leave the symptoms looking much like Alzheimer's, but it's equally possible for a major stroke to cause significant sudden loss of abilities. Each stoke cuts off or blocks blood flow to part of the brain, depriving it of oxygen and nutrients, leading to the death of that section. These dead areas, or lesions, are what a CT scan picks up.

Then there is Lewy Body Disease (Dementia with Lewy Bodies), in which small deposits of protein accumulate in the nerve cells of the cerebral cortex. The sufferer experiences persistent hallucinations, perhaps seeing a person in the same chair over and over. Here, the confusion can fluctuate such that a Carer might believe that the sufferer is 'pretending'. Parkinson-type symptoms like tremors or rigidity are associated with this type of dementia. As the disease progresses over several years, the sufferer experiences memory loss and his or her language skills will deteriorate.

Fronto-Temporal Dementia (grouped with Pick's Disease and Primary Progressive Aphasia) is a rare and slowly-progressing condition where the sufferer's personality changes, perhaps resulting in a loss of inhibition or sudden inappropriate rudeness or maybe a loss of emotional warmth and empathy. Over-eating or a craving for sweet foods is an indicator here (maybe I should get myself diagnosed?), as is a change in sexual behaviour. In this group, memory loss is not usual in the early stages, but a decline in ability to communicate sometimes gives the impression that memory problems exist. As the disease progresses, reading and writing skills deteriorate along with numerical skills. The sufferer will likely develop problems handling money. Some sufferers develop obsessive behaviours, with repeated hand-washing or similar activities. This group of diseases is characterised by more localised damage in the frontal or temporal lobes. Primary Progressive Aphasia attacks cells in areas of the frontal lobe particularly associated with speech. Pick's Disease is caused by abnormal or swollen cells or abnormal protein deposits within cells in the fronto-temporal areas.

In Mum's case, she has what's known as a 'mixed pathology', with the problem chiefly being Vascular Dementia but with some other damage present that could be due to one or several of the other forms listed above. I've certainly noticed a marked loss of empathy, her increased selfishness, and her preferred diet of sweet foods. This and her deterioration of abilities to deal with money give me reason to suspect that there's a fronto-temporal aspect to her condition, too. Then again, I have observed Mum having Lewy-Body hallucinations on many occasions over the past 5 or 6 years. She sees someone standing in a street and is convinced that she saw them standing in exactly that spot yesterday, and will not budge from the assertion, even if I tell her we were 300 miles away yesterday.

a brief history of Mum's dementia

I first became aware of Alzheimer's Disease in my teens. I remember a drama on TV where a woman was coping with her Mother's deterioration. There was one scene which stuck in my head where she found her Mum awake in the early hours of the morning, using the vacuum cleaner on the lawn. I remember that my own Mother found the play particularly upsetting, and she subsequently never tolerated any childish taunting that a slip was an early sign of Alzheimer's. It became a taboo subject in our house.

The next significant event, looking back, took place at my Sister's Wedding (about 12 years ago). My Sister had been living overseas and a lot of the planning for the event fell onto my parents. When we all gathered, a few days before the Wedding, we found Mum in a high state of tension, panicking about trivial details. We tried to laugh it off but then, during the Service, Mum suffered a Stroke which paralysed her on one side of her body. She recovered within a couple of days and all returned to normal.

When my Dad died, in 1999, I found Mum quite confused about a lot of things. I didn't fully accept her excuses that she was grieving and exhausted from my Dad's slow death, but then I didn't take any action at the time either. I suppose I couldn't deal with it on a subconscious level and managed to ignore the elephant in the room (hmm.. elephants are associated with a functioning memory, so not a great choice of expression). I do recall being pretty annoyed that my Father had done nothing to prepare Mum for coping alone: feeling that he should have familiarised her with the family finances, at least. It's easy for me to see now that Mum was already showing small signs of Dementia. Perhaps one reason I ignored what seems so obvious was that the subject was so off-limits in our family. Mum insisted that she was alright, and I was working hard at my new job 400 miles away, so I allowed her to carry on. She began to inflict a series of unnecessary and costly renovations on the family home, inspired (I suspected) by a desire for company. She kept saying that she was going to move, but then would spend thousands on some highly personal touch, usually carried out by one particular handyman (appropriately, it later transpired) named 'Robin'. It seemed that Robin was always there and jobs were invented to keep him around.

In 2002, my Mother finally decided that the time had come to move into a retirement apartment about 20 miles away from home. I was concerned that she would be moving away from an important support network of neighbours and friends, but I could see her point that the house was too big to manage. She also took up an offer from a Property Developer to fly her out to Spain to look at an apartment, and she came home having signed a deal and paid a substantial deposit. With both deals, Mum insisted on handling things herself, despite my offer to participate. I had strong misgivings, but was very busy heading into the final stages of a work-related breakdown at the time. I wasn't very surprised to hear that Mum had accepted a low offer for our home, knowing how easily swayed she was by anyone who took time to meet with her. Meantime, as the house deal went through, I realised that Mum was inconsistent over how many payments she had sent off to the Spanish property company. Again, I can't understand now why I didn't intervene immediately.

I finally arrived to help her move home only to find that Robin had got there before me and most of our furniture and memorabilia had been willingly handed over to him in gratitude. Mum told me how poor Robin's family were and how he had no pension to look forward to, forgetting that she'd also told me that he drove a Rolls Royce. So, we moved Mum into her new apartment, which she'd bought off-plan failing to notice that the view from the living room would be a brick wall 5 feet away. Robin promptly disappeared from her life, and Mum instead leaned heavily on the charming Salesman, living in the show flat, calling on him several times a day for advice and help. She scoffed when I told her that he would be moving on as soon as the apartments were all sold - which he did, of course.

I finally found an excuse to intervene in the Spanish deal when I realised that a year had passed since Mum should have received the keys. It turned out that nothing had been built. I asked the company to fly us both out to find an alternative apartment. I remember waiting at 'arrivals' in Barcelona airport and seeing Mum come through, beaming and bewildered and guided by two other concerned passengers. She looked so vulnerable that it broke my heart and scared me at the same time. The 4 hour car journey to the isolated development set me wondering how practical this deal was for Mum (who never drove down unfamiliar roads in the UK and didn't speak a word of Spanish). Over the course of 4 days, I found that Mum hadn't thought through how she would survive here and hadn't any ability to cope in this environment without a companion alongside her. She couldn't understand foreign exchange rates and couldn't even find her way back to her hotel bedroom without assistance. I helped her pull out of the deal, but I'm convinced we only recouped a fraction of what Mum had paid out. Mum accepted that the property deal had been a disaster and was grateful that I had intervened. 

We settled into a routine where she would ring me almost daily with some problem, which I would do my best to investigate and resolve for her. It was difficult doing so from a distance, especially when Mum couldn't read documents out over the phone consistently. Some companies, too, wouldn't deal with me without Mum present. Mum's Solicitor began talking about me registering a Power of Attorney over Mum's financial affairs. I stalled, feeling uncomfortable about it and convinced that Mum would dig her heels in once her mental capacity was questioned.

It seems to me that I finally woke up this year - woke from a half-slumber where I was half-aware of what was going on but hadn't grasped what it meant. I can't account for why this was so. The warning signs had indeed been there for years, I can see them now. It took a couple of family friends and relatives to finally shake me awake, to whom I'm grateful. Mum's decline has been fairly rapid recently. I don't know if this is a common experience, but it seems that my interventions (while necessary) have sometimes speeded up the progress of the Dementia - as if once Mum's getting help with something, that section of her brain finally gives way and she becomes helpless in her capacity to do that thing. However, there's really been no option but to go forward, for health reasons.

I've mentioned Mum's CT scan and diagnosis elsewhere this year. I think I've sufficiently covered the loss of her ability to cook, her loss of understanding around time of day, her recent inattention to personal hygiene and appearance. I just thought it might be helpful to tie her history up into one post to show the progression of the disease so far.

merry christmas

I picked Mum up from the Home this morning to bring her back here for her Christmas Lunch. Though I was, once again, unimpressed by the staff on duty, Mum seemed reasonably happy and secure (though maybe less aware of what was going on and a degree more frail than I'd seen her on Friday). I gave her a present and a whole stack of cards that had arrived for her, but she seemed oblivious to their significance. I packed a bag for her and we left to travel home. En route, I discovered that Mum couldn't tell me what day of the week it was (several guesses), or what day of the year. She didn't know that it was Christmas Day. She told me that she had already had her lunch (which she said had been some sandwiches). I asked her more about life at the Home. She was vague on any particulars but told me that she was alright.

My friends and I cooked a huge spread. They had brought their old folks with them, and the 3 old-timers seemed to get on well together. There was much laughter from the other room while we toiled away in the kitchen. I looked in at one point and they were watching "Shrek 2". Mum was canted over to one side on the couch at her usual 45 degree angle with her hands in the prayer position and the same open-mouthed incredulous look on her face that's there whatever is on TV these days. She visited the bathroom over and over, of course, and each time came wandering into the Kitchen instead of the Lounge, looking quite lost and as if she was seeing everything for the first time.

Over the course of the meal, Mum referred to the "Hotel" she'd been staying at, and the "Hospital" she was in. Tonight she started referring to things that had happened yesterday, but as if they happened here instead of at the Home.

I'm hoping for an unbroken night's sleep. That would be present enough, Mum.

ADDENDUM: 2 am now and I've been disturbed 4 times already. Each time I tell her we're going back to the Home tomorrow she sounds surprised but, thankfully, not unhappy. Since it's unlikely that I'll be sleeping, I'm counting the minutes.

paper trail

I got home from a Christmas party at 3 am this morning. I was in bed at about 4:30 am.

At 6 am, my phone rang. It was Mum. She said that she needed some things and asked me to bring them to her.

What did she need?

Toilet paper.

I explained that the Home would supply such things and recommended she wrote a list of her other needs with a member of staff, and which I would help her shop for the next time I was visiting.

Toilet paper... my house is littered with it as if Mum is still with me. Every surface has at least one or two tissues on it somewhere,  and there are little wadded piles in every nook and cranny, shoals of tiny shredded tissue fragments spilled from her pockets all over the house like dandruff. My bathroom boasts 5 toilet rolls in various stages of unwinding. I think toilet paper is Mum's hobby.

moving-in day

For several days now, Mum's been drifting on and off-message. Sometimes we'll have the same conversation 4 times over about where she will be living from today. I worry that she's not made an informed decision.

I had a stressful time this morning getting Mum out the door by mid-day. I wanted the day be a good one and for it to go smoothly, but instead I found myself losing my temper again. Eventually, Mum sat in the car babbling as though she was going back down South to her old flat and simultaneously as if she was moving into the Day-Care place. Even though we have had relatively coherent conversations about the Cheshire Home, I still felt guilty.

Around 1:30 pm we arrived and I took Mum up to reception, where we sat for about 30 minutes waiting to be seen. The staff seemed to be in even more disarray than last time. Finally, someone took pity on us and took us up to Mum's "household", where there was some confusion about which room had been assigned to Mum. I had selected the one which was furthest away from the front door, from the communal television and the kitchen area, and on the side of the building overlooking a garden and field. The room looked smaller than the one we'd seen last time, there were some flaws in the finish (cracks in the new plaster, misaligned doors in the wardrobe) but overall it was acceptable and warm. Mum, at least, seemed pleased, even if my guilty eyes were finding fault. We had lunch in the decidedly chilly café at Reception, and then I left Mum in her room while I went to sign the admission and finance forms.

The Finance Officer was another warm and friendly person, who confided that she was having some problems with her own 92-year-old Mother but "trying to keep from putting her in a home if at all possible" (thanks - just what I needed to hear). She also was a bit too quick to reassure me that of course she didn't live anywhere "around here" (thanks again). The paperwork was very straightforward, and I asked her how I should deal with Mum's personal spending. I explained my anxiety over Mum having a Debit card, given that she is prone to announcing her PIN to the whole shop, if she can remember it at all. The Finance Officer told me that hairdressing and chiropody costs would be itemised on the monthly bill sent to me, but suggested I leave some money in Mum's purse to give her the reassuring illusion that she could go out shopping if she needed to. I discussed how I was feeling about all this, and she warned me that I would naturally feel guilty about leaving Mum here, as a matter of course.

Back on the "household" floor it transpired that Mum was one of only 2 residents moving in before Christmas, so staffing levels were to be reduced for the initial period. I sat in Mum's room transcribing contact details of other relatives in the area, while Mum was served an evening meal and encouraged to decorate a Christmas tree. By 7 pm, however, Mum was evidently exhausted and she returned and fell asleep on the bed. I suggested that she got under the sheets, but then we found the bed was unmade. Once I'd sorted this, I said my good-byes. 

I hugged Mum gently. Her bowed back felt as fragile as a glass Christmas tree bauble. Driving home I felt dreadfully guilty.

spoilt for choice

I had a feeling this would happen. Coincidences like this only happen in life - you wouldn't get away with it in fiction.

I'm due to move Mum into her new accommodation in Cheshire tomorrow. Today is her last Day-Care at the place closer to my home. I sat down with the Manager there this morning and told her that we'd had confirmation of a place for Mum elsewhere. And, of course, she said "I was just about to tell you that it looks like we have a room free here..."

Typical, eh?

So, I'm in a quandary. The Home nearer to me (where she's been going for Day-Care) is lovely and the staff are warm and friendly and already very fond of Mum. She's developed some relationships there over the last 2 weeks. However, this Home isn't geared for EMI (Dementia) and if Mum were to worsen, I would have to find her a new home again. Given that her Dementia is Vascular, it's likely that her deterioration will be in step changes rather than a gradual decline.

The place in Cheshire, on the other hand, is an hour away from me but closer to several sets of relatives, who would be more likely to visit Mum. Also, this place is geared for EMI, and has Nursing capabilities if Mum's condition advances significantly. My concerns are that we haven't seen the other residents. If they're well advanced in their Dementia, then Mum might freak out and be miserable. I know that this Home is the sensible option, and that my worries are speculative rather than based on anything real, but I'm anxious all the same.

This morning, the Manager at the Day-Care place was telling me that one of her staff had been disappointed not to see Mum yesterday and had claimed that she had switched shifts because she wanted to see her. Just then, the staff member walked through Reception. The Manager said: "It looks like Anita won't be coming here after today."

"Right!" said the staff member, "That's it, I'm resigning!"

Sweet.

rage

So much for anticipatory grief. This morning I was reminded why it'll be good for both of us when Mum is housed elsewhere.

After a relatively good week of untroubled nights (helped by a rather stern notice on my locked bedroom door), I was woken at 4 am by Mum knocking and calling to say that the dog wanted to go out into the garden. I didn't take it well. When Mum disturbed me a second time 20 minutes later, I lifted her up bodily and carried her back to her bedroom, put her on her bed and turned the light out. I am haunted now by her little strangled noises of outrage as I carried her. 20 minutes later she did it again. Of course, I was so worked up that I couldn't sleep after that.

I thought we had a routine here: each morning for 3 weeks now I've woken up at 7:30, gone downstairs, let the dog out, made breakfast for Mum and then taken a bath while she ate. Usually, I have to help Mum dress, reminding her what to put on next. Today she was fully dressed at 4, and had helped herself to a bowl of cereal. Unfortunately, with all my crockery in the dishwasher, Mum had used an old bowl I keep under a plant pot and which is dirty and cracked, and probably infused with plant food. If she starts putting on inches, or growing ferns out of her ears, I'll blame the 'Baby Bio'...

I didn't think it wise to drive this morning and I considered placing Mum in a different day-care place, locally, one geared to advanced Dementia, but I couldn't do it because it would have been revenge, which should never be acted upon (I always say: 'Revenge is sweet but I'm counting calories'). Instead we're back to me trying to work here while Mum creaks up the stairs every few minutes, then creaks down again having left the loo un-flushed.

I went out for sandwiches at lunchtime. I gave Mum hers just as my phone rang. I walked into the next room to take the call. When I came back, Mum was finishing the sandwich..... except that her sandwich was still on the plate in front of her. She had reached over and taken my sandwich out of the bag. I'm vegetarian, so I couldn't eat her prawn/avocado combo, so that was my lunch gone.

Apparently she can move in on Friday. Almost there. Oh to be in bed right now!

wobble

I'm feeling a bit shaky today. I can't pin it down to any one thing.

Yesterday, I rang the Care Home where I'm hoping to place Mum and was given further verbal confirmation that they were accepting her, so that should make have made me feel a lot less tense. Instead it's like I'm grieving a little. When I was driving back from Day-Care today, I could feel tears welling up.

Then I got a call from the Finance Executive at the Home today, saying that she'd only heard about Mum's imminent arrival today and telling me that we needed to talk about funding. She sounded a bit annoyed that this was being sprung on her. I responded in kind, my nerves fractured, complaining that I'd been left dangling for weeks without confirmation, despite my repeated calls. We established that Mum isn't going to get some additional funding I was counting on (about £100 per week), which wasn't the best news, but there's only one direction to go and that's forward.

And, of course, I'm still worried about what this place is going to be like for Mum. Last night, the staff at Day-Care told me that Mum had asked when she was moving in there. Now, I suspect this was just confusion on her part after I'd told her that the other Home had confirmed her place. Still, I feel more than a little worried about the difference between the two Homes. Mum may well baulk at the more Dementia-geared environment she's going to be living in, after the genteel retirement atmosphere she's been enjoying this past week. I keep having to remind myself that she needs that level of care, and that I've been given rather specific instructions by the Social Worker on that score.

So, I've 3 options as to what is bothering me. It could well be exhaustion again (I barely kept my eyelids open today despite a good night's sleep), but my gut feeling is that this 'wobble' is anticipatory grief - I'm going to be feeling lonely and guilty next week when Mum's gone.

brochure

I've been careful to leave brochures for the Care Home we're aiming for lying around in most of the rooms in this house. I even took a couple away down South this weekend. Each day I watch as Mum's eye drifts around the room looking for an anchor. Reliably, she always picks up the brochure, and usually starts a conversation about the place, which reassures me that she remembers it and knows that she's going to be living there soon.

This morning, I was running a bath when suddenly Mum was hammering on the door. I opened up to find Mum standing there with the brochure in her hands. She looked down at it and said: "Look at this. I was thinking that you might get a room here as well."

I had to explain that it was a place for people her age and not mine, but I was touched because I think she was saying that she would miss me.

doggone (almost)

I found a place for Mum's dog this weekend, while we were down South.

This has been a concern all along, potentially a deal-breaker, or so I thought. Initially, I asked at a lot of Care Homes about pets, but learned that most consider pets on a case-by-case basis, and I knew that with Mum's infirmity and memory problems this would mean the nursing staff would essentially be taking on the task of looking after the dog as well as Mum. It wasn't going to happen.

So, about a fortnight ago, I asked some relatives who had previously expressed an interest, but it turned out they no longer felt able to take the dog. Then I checked with the friends who had taken the dog from Mum at the beginning of the year (and almost not given her back). No joy.

Mum's dog is a Bichon Frise: one of those little cotton wool balls of friendliness that delight old ladies and embarrass the hell out of men like me who are trying to cling onto a last vestige of masculinity. Anyway, the dog needed grooming and I took the opportunity of our trip home to secure a visit to Mum's preferred outfit. When we'd dropped the dog off, Mum said something rather curious: "I'm glad Sachi is staying with them now. She's always so happy to go with them. I think they'll take good care of her."

When I went to collect the dog, the Groomer was asking about my Mum's confusion and I mentioned this comment. She instantly said that she would love to take the dog, that she had always asked Mum for first refusal should such a situation come about. I told her that I was sure Mum would be delighted, but that I would let her consider her offer over Christmas and discuss it with her husband.

Mum was happy at the news. I feel so relieved that another problem has been addressed.

good-bye to all that

I was worried that Mum would misinterpret our return to her apartment, or that she would simply refuse to leave this time around. Within minutes of our arrival on Friday afternoon, indeed, she asked me if I was going to drive all the way up that night or wait for the next day. My heart sank.

At the same time, though, she was talking about her next home, but I had to correct her, since she often confused the place where she is receiving day-care with the one that we're aiming for her to move into. I am scrupulously careful not to press one or the other onto her. But I have been listening carefully to her rather tangential announcements and I can say that though the day-care one has great food and lovely staff, Mum thinks that the residents bicker with one another too much. Her feelings about the other Home have coalesced into a fondness for the nice man who "asked me all those questions". I'm conscious that she didn't meet any other residents there, though.

We spent Saturday morning going through Mum's closets, choosing items that she still thinks she'll wear again. I had to be pretty ruthless with her, keeping her sitting down and focussed on the task. At times I worried that she was saying "yes" or "no" alternately, or in response to some cue in my voice or expression (I tried to keep both neutral). The whole thing was too "Devil Wears Prada/Ugly Betty" for my taste and I was relieved by how quickly we got through it. I took huge amounts of very nice clothing to the charity shop.

When it came to what personal items Mum wanted to take with her, I was shocked by how unsentimental she was. I had to press her wedding photos and those of my nieces on her. The rest Mum said I should sell. I have a feeling that I'll be returning to retrieve some more items before I clear the flat for sale.

Going out for a breath of air on Friday night, I noticed that the residents were having a big party in the communal lounge. I saw several who had greeted us on our arrival that afternoon. I was pretty disgusted that none of these people had come to Mum's door to include her. This morning, when I was packing the car, I asked Mum if she wanted to say good-bye to anyone. "No" she replied, but when I mentioned specific names she changed her mind. Evidently, her first good-bye snowballed and by my fourth or fifth journey down the long corridor Mum was part of a group of old ladies moving from door to door. Some took me aside and told me how glad they were that someone was doing something for Mum.

When I had finished, I suggested that Mum said good-bye to the flat, but she didn't give it more than a cursory glance. I don't think sentiment has survived in her brain.

stunned

Shortly after I wrote my last post, Mum and I were sitting downstairs. In the middle of conversation, Mum said something odd. I asked her why she would say that and she started saying some very ungrateful things.

I found this unacceptable, and pointed out all that I had done for her over the last few years, the last few months, and especially the last fortnight. I told her that if I'd left her in her flat down South two weeks ago she'd have died alone soon.

She looked at me and said: "I bet you wouldn't be sorry about that."

I was shocked and hurt. How could Mum think that of me?

I had to leave the house to think for a while. I went for a drive and telephoned someone very close to me. She told me that only those we really love can hurt us that badly. It took a long conversation to reassure me.

I came home a few minutes ago. Mum was in the bathroom. I walked into my Study to find that Mum had managed to spill her sticky medicine all over my mouse-pad and keyboard. She denied it. I told her to come in here and see the evidence. I walked out onto the landing to bring her in and she screamed: "DON'T throw me down the stairs!"

Again... how can she think that I would do that?

I feel stunned. I don't know what to do. It's now getting on for midnight and I know I should have started driving South hours ago, but I feel paralysed, feel like I have to reassess everything before I can start. I need to work everything out from first principles. The picture of the world that I had is in pieces. I need to work out if I want to tape it back together the same way or go for a different view. Does that make sense, or is this just exhaustion talking?

sundowning

Any time from mid-afternoon onward, I have to be vigilant whenever Mum is out of my sight. If I haven't seen her for over 10 minutes, then chances are that she's undressing for bed. Maybe this is why I'm so tired myself, the constant tension of extending my senses throughout this house, straining my ears to hear the plaintive calling behind doors in different rooms, listening for Mum coming up the creaky stairs for the 5th time in 5 minutes, even listening for silence.

Anyway, there's a term I've learned recently: "sundowning". This seems to be a noted phenomenon with dementia patients, a marked worsening of their behaviour in the evening and at night. I'm not convinced: Mum is capable of odd behaviour on bright sunny mornings as well. To my mind, the undressing could equally be a response to the early darkness outside at this time of year and the fact that she's bored and cannot stimulate herself with books or TV.

I just caught Mum putting her nightie on at 8pm, which isn't unreasonable except that I'm still thinking of driving down South tonight. So I asked her to dress again. She managed to put on an entirely different outfit, since she had no idea what she was wearing 5 minutes before even though the discarded clothes were laid out on the bed in front of her. She started talking to me from inside her room and I asked her what was wrong. She told me that I was confusing her, asking her all these questions. I hadn't said anything since asking her to dress again.

Now, I've noticed for a few years that Mum will often start a conversation with "As I said to you..." or "Do you remember I told you...?" when discussing something entirely new to me, and she'll often respond to me with "You keep telling me that" when I know for a fact I've never in my life said that thing before. I've suspected for a while that Mum is having conversations in her head without me, but tonight's episode was a clear example. Poor thing, I'm bad enough to live with - Mum's plagued by phantom Gregs, too.

exhaustion

I'm exhausted and I'm not sure why.

In so many ways this situation has improved over the last couple of weeks:

• Mum is no longer starving herself
  
• She is under my supervision and can no longer cause her chaos with bills and appointments
  
• She has accepted that she needs more care and we've found a Home we're happy with
  
• Now I even have her in Day-Care so that my work-day is free and she is being socially stimulated far better than I could provide here.

And yet, I'm suddenly so very tired. This afternoon I just had to go back to bed and sleep. Why is this happening now? Is it like one of those colds that completely floor you the day your holiday starts? Is this my body forcing me to take a break?

If so, I need to tell my body that I've got to take Mum down South to her apartment tomorrow (maybe tonight?). We need to spend a long weekend sorting through her possessions and bring back the clothing and a decorative items that she will need when she moves into her new home.

The place we saw in Cheshire last week tentatively gave 19th December as a moving-in date, but I haven't heard back from them and I'm worried that I haven't got a contract in my hands. Still, we have to proceed as if the offer is genuine, so this weekend we have to travel South.

I just hope I can find the energy to do this.

parental control

I've been told by one reader that my blog has suddenly started triggering the "parental control" web-blocker on her PC. I don't know what I've written here that has been offensive, but I'm amused by the irony: Parental Control is, after all, my subject most of the time.

day care

I dropped Mum off at the Home, yesterday, around 9:30am and drove back to my house feeling like a parent who has dropped his kid off at the school gates. Would the other boys and girls accept my Mum?

At home, I suddenly had all this silence. It felt w-o-n-d-e-r-f-u-l. But I found it really hard to concentrate - my brain just needed to relax after all the stress of the last couple of weeks and I was suddenly very sleepy, so I didn't get very much work done in the end.

I picked Mum up at 7pm, after the evening meal was over. She was almost unrecognisable: her hair had been candy-flossed up into a white cloud around her head. She was in a sort of happy daze and kept talking about the lovely bubble-bath they'd given her. She stayed in the bath so long that she missed the Tai Chi class.

I've just dropped her off again this morning and heard that they're all going on a coach trip today.

response

Once again, I am humbled to record another individual who dealt with a comparable situation himself rather than seeking care from outside. My respect for you, Sir, is very great and your "do the right thing" message resonates with my guilty conscience about how I've decided to handle my Mother's future care.

My Mother's condition likely stems from a stroke she had about 12 years ago, where she temporarily lost the use of one side of her body. She quickly recovered at the time, but apparently this episode leaves her more vulnerable than others to further TIAs. The pathology of her diagnosis was mixed, with evidence of many small TIAs and some additional deterioration that could be Alzheimer's.

Yes, Care Homes over here are expensive too, typically £700-£800 per week for anything half-decent. This is twice my Mother's income from her pensions. In the UK, if the individual has assets of less than £21,500 the State will either contribute or pay in full to enable her to go into Care. Unfortunately, in my Mother's case the fact that she owns her own home places her well beyond that boundary, and I will be selling her apartment to fund the shortfall. If she lives long enough to outlast this asset, then the State will step in to top up her fees. Finance is not a worry, beyond the fantasy of my inheriting something from her estate one day. I've come to terms with that after some soul-searching (my soul was under a sofa cushion).

Yes, I have read a lot of horror stories about staff in Care Homes, not only ill-treating their charges, but also drugging them to keep them somnolent and co-operative. I haven't seen evidence of  this in any of the many homes I have visited these past few months. However, I have visited places which felt wrong in some way, that smelled, or where it seemed the residents were not encouraged to leave their rooms. Believe me, I am going to make sure that my Mother is happy where she ends up, or I'll take her home with me again.

I have thought a great deal about the idea of quitting my job and caring for her myself. As you say, a salary even a fraction of what would go to a Care Home would be attractive. One of my dreams is to settle in the countryside of France, enjoy the warmer Summers and grow my own food. Mum's assets and income joined with mine would make this possible, and I would have fewer worries and more time for her, but the care I gave her could not be 24-hour, and I lack basic Nursing skills. More to the point, I'm ashamed to say that my temperament isn't suited to looking after Mum. It really is with the best of will that I have searched for a place for her, out of my belief that she would benefit more from people who are more patient and less emotionally-linked to her failings. I am denying myself a good chance of realising my dreams because I feel that it's in my Mum's best interests.

Your scheme for Elder Elder Care is an intriguing one, and I'm curious if anyone has tried it. One thing I would say is that many of the Senior residents at my Mother's apartment building treat her contemptibly, I suspect because they see their future before them (the Warden there agrees that the ones most vile to Mum are those closest to her condition). However, I'm sure the number of kindly, charitable Seniors far outweigh the nasty contingent.

The place that I have been happiest looking at organises itself as a 'village' of people, encouraging as much interaction and shared responsibility as the residents are happy with. I've met some kind people there, and Mum is enthusiastic as well.

I hope for the best. This seems "the right thing" for Mum and not a shirking of responsibility, but I welcome opposing views and anyone who can pin-point any self-serving thinking on my part.

Good luck to you, too, Sir. It seems to me that you are far from a burden for the time being, and I hope I'm still capable of celebrating, myself, when you reach 110.

Greg

comment from a reader

I hope with his permission, I would like to quote in full a comment I got from a gentleman going by the name anthropositor. This was left after my "Driving Miss Crazy" post, and he has some valid points to make (apologies for places where the spelling has changed to UK English - Blogger didn't allow me to copy and paste this and I had to type it out myself):

"I was once a fairly affluent travelling man. My Mom had passed away. Periodically I visited my Father who was in his late sixties, and a particularly challenging fellow to deal with. He sporadically drank a LOT of vodka. I was putting off the time that I would have to deal with the situation. My siblings, for good reasons of their own, could not or would not deal with the situation.

Clearly my Father was losing it. It was only a matter of time. Then I came back from a trip to find that he had had a stroke which had paralysed half his body.

This was twenty eight years ago. I looked into the care giving options, found them to be in excess of $2000 a month and elected to quit travelling to take care of him myself. I got him over his stroke and worked from home. Soon after his recovery I got married for the second time and got custody of my youngest Son.

Aside from the stroke, my Father continued to deteriorate behaviourally. It was indeed a challenging situation. My behaviour toward him was strained some of the time. I have some regrets about that. But ultimately, I did the right thing. No regrets.

Now I am about the age he was when I took over his full time care. He lived as well as could be expected for seven more years. For me this was an exceedingly difficult time, but I have never been sorry that I dealt with it the way I did.

I had a stroke two years ago which just made me stupid for a while. A pretty humbling experience. Fortunately my mental strength returned and then some. Your Mum is twelve years older than I am and her difficulties seem to be beyond simple stroke damage. Her situation is not likely to improve by much.

The costs of providing care for the aged are really extreme. You mentioned $100 per diem for day care. Full care would be double or more. And such care is often not exactly ideal. The young employees who work in such places often get as frustrated as you have been on occasion. When that happens, they are often not too inhibited with their irritation.

It strikes me that more should be done to set up situations in which lucid and capable old people do more caregiving for their less capable counterparts. They have some serious advantages in caregiving. They know that these things could ultimately happen to them, and maybe in the not too distant future. That alone makes them potentially much more understanding than youngsters are likely to be.

It is also true that many capable older folks need to supplement their income and would find elder care to be a good way to do it.

If someone in my neighbourhood made me an offer of say $1200 a month for continuous care around the clock for their loved one, I would certainly be considering the idea.

In the meantime, I will be doing my very best not to let myself become a senile hardship to my children. If I can remain lucid, ambulatory and capable until my one hundred and tenth birthday, I can't think of a better gift for my children or myself.

Good luck to you."