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.
Friday, 28 December 2007
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.
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.
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.
Tuesday, 25 December 2007
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.
Sunday, 23 December 2007
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?
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.
Friday, 21 December 2007
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.
Thursday, 20 December 2007
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..."
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!"
Wednesday, 19 December 2007
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!
Tuesday, 18 December 2007
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.
Monday, 17 December 2007
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.
Sunday, 16 December 2007
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.
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.
Thursday, 13 December 2007
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?
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.
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.
Tuesday, 11 December 2007
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.
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.
Monday, 10 December 2007
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.
Sunday, 9 December 2007
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."
I'm chatting with a friend on MSN and I suddenly realise that I haven't been disturbed for over 30 minutes.
I poke my head out of the study door. The lights to the bathroom and Mum's bedroom are on. I knock on the bedroom door and go in. Mum is in bed, undressed and asleep. I can't leave her because then she'll be even more wakeful than usual during the night. I wake her and ask her to get dressed again. She is shocked to hear that it's not time to sleep, that she hasn't even had her dinner yet.
Over the next 10 minutes or so I can hear her making disapproving noises about having to dress. Eventually I call out to her to ask what's wrong.
"I can't get this skirt undone."
"Mum, I don't want you to get it undone. Please get dressed!"
She comes into the study, eventually, in a light blouse which will be too cold this evening. I ask her to put her jumper back on. I have to stand over her to get her to select it from the other clothing in her room. Eventually she picks the correct item. I leave her to put it on. The disapproving noises come back. I ask Mum what's wrong.
"Well, it's this jumper. It's too thick for me to sleep in."
It's a cliché, I know, that the parent becomes the child.
I should have seen the last 9 months as my 'pregnancy', but I didn't. Perhaps there were classes I could have gone to, or maybe a Midwife should have been assigned to me.
I suddenly have a 79-year-old infant to look after: one who I can't leave alone, who constantly asks for attention, who cannot do anything without me standing over her and micro-managing every part of the task.
I tried to do some work this morning. Mum was coming up the stairs every 1 or 2 minutes, calling out to me about nonsense she creates in her head out of the scraps she can remember. I never got a chance to concentrate on more than a single sentence over the course of an hour. Eventually, I decided to set Mum a task to keep her occupied: to sort out her clothes and make a pile of the dirty ones. All the clothes Mum brought up with her are badly stained, and we've been out several times to buy fresh clothes (which are warmer and actually fit her). I told Mum that if she made a pile of her dirty clothes, I'd launder them for her.
This only made things worse for me. Mum wasn't up to the task. She kept coming back to me with all sorts of other things, and I'd remind her what she was supposed to be doing. I kept leaving my study to guide her back to her room and point to her suitcase and re-explain the task. A minute later she would be out once more. It's been 2 hours of this now, and I've given up responding.
And, of course, this has worked rather well. After not getting any response from me, Mum has settled down and is now relatively quiet.
If only I could get her toilet-trained.
Saturday, 8 December 2007
When I wake up, Mum is already wandering the house and all the lights are on. Same as any morning this week. I go downstairs to let her dog into the garden, and then I pour two bowls of cereal and add the soya milk we use. Mum is sitting at the table, ready, and asks for some juice. I pour the last of the pineapple juice into a glass.
I start eating my cereal. Mum is sitting there waiting for something. In between mouthfuls I ask, "What's wrong? Why aren't you eating?"
"I need some milk, don't I?"
"It's on your cereal, Mum."
"On my cereal?..... On the cereal?"
And so she quickly tips her pineapple juice onto her cereal and my voice reaches an octave I haven't heard since my balls dropped.
Friday, 7 December 2007
Wednesday's trip was achieved by my taking a holiday from work (a day I might accrue rights to sometime before Easter). Yesterday I tried again to work from home, but Mum was impossible again, and I felt close to tears as she settled back into her 4-minute-interruption routine. I spoke to my HR Representative, who encouraged me to take off all the time I needed up to Christmas and offered to find another person to fill my role at work. I didn't want to take up this offer because the role is uniquely based in my home city and on an interesting project.
I did however say that I'd like to take today as holiday, too, because I didn't feel comfortable in my decision having only taken Mum to see one Home. This is self-sabotage, perhaps, viewing other places after finding one that Mum likes, but my conscience and I are on somewhat estranged terms and communicate through my gut these days rather than thought. I set to locating some nearby homes for comparison and lined up a couple to investigate today.
We set out around 11 am and drove for 20 minutes to a neighbouring small country town. Here we visited a lovely stone house which had been tastefully extended. The lobby led on to several lounges of varying sizes, filled with armchairs and chatty older people enjoying a sherry. We met the Manager, who took us on a tour of the hotel-style dining room and then sat with us in a typical suite, which was comprised of a sitting area, a bedroom and a wet-room. Although this Home didn't advertise as having an EMI/Dementia capability, the Manager told me that in her opinion Mum would fit in excellently into the demographic.
She told us that the only available room had just recently been taken, so there was no guarantee when they would be able to house Mum, but then she offered to take Mum in as a day-care resident for £50 per day, with a view to giving her the next vacancy. This would mean me dropping Mum off in the mornings and picking her up in the evenings. Mum would be fed both lunch and dinner, have an opportunity to bathe in a special bath with a chair hoist, and get her hair styled on-site. This would leave me free to work and would be an excellent opportunity for Mum to sample life at this Home. I actually teared-up with relief at hearing this.
I like the place a great deal: the facilities were more like those of a good hotel than a Care Home, and the staff warm and funny. Several residents told us, without prompting, how much they liked the place. My only reservation is that this Home is convenient for me but would leave Mum out of reasonable visiting-range for her other relatives. However, I think I'm going to take up the day-care option for now.
We didn't visit the second place I'd found. There didn't seem a point any more.
Wednesday, 5 December 2007
Almost all my Mother's relatives live in the north-west of the UK, about a 2 hour drive west from here. Meanwhile, I harbour ambitions to travel at some point, once Mum is settled somewhere and being looked after. There is therefore an argument for finding a Home for Mum that is within reach for the other relatives rather than being on my doorstep.
Today I took Mum west, to see one of the Homes I visited a couple of weekends back. At that time, I had been looking for a place which had independent apartments or bungalows to replicate my Mother's present living arrangement while providing support if and when it was needed. Now I realised that she needs a LOT more care than that. She should not be left alone and is very dependent and frequently disoriented. With her mobility severely impaired, I realised that the bungalow option was especially no longer appropriate. So I took Mum to see the more modern of the two places I had been happy with last time, with a view to getting her assessed by them. I suspected now that one of their 'households' would be better for Mum.
The Home is still in the process of opening, so the Manager and her Deputy were being pulled in all directions by consultants with powerpoint presentations. Nevertheless, the Manager took us round a household which hadn't yet been opened: 8 bedrooms set around the perimeter of a vast communal area which was part lounge and part kitchen/diner. All the walls had handrails around them (useful for Mum who wobbles unsteadily along on tip-toes). The rooms were a decent size with a bed, two chairs and a coffee-table in a window alcove, dressing table, LCD TV, a generous amount of drawer and closet space and an en-suite wet-room. The lights in the wet-room go on as you enter, and a pressure pad in the mattress means that if you get up from your bed in the night the bathroom lights up. The Manager explained that the pressure pad system could also be used to alert staff if someone was prone to falling out of bed, but in Mum's case could be set so that it only triggered an alert if Mum was out of bed for more than 10 minutes or so. Out in the kitchen area, it was explained that staff would be around day and night, that meals would be served at regular times in the dining area but that Mum could ask for anything at any time and it would be made for her. If she wanted eggs at 2 am then staff would make eggs.
Mum looked delighted with everything, but then she puts the smiley act on for all strangers, so I found it difficult to gauge her reaction. I think, in fairness, that she was responding to the kind people who we met rather than the facilities (perhaps she's social while I'm more materialistic, or maybe I just feel forced into that role in this case). However, the staff were all very warm and friendly. The Events Manager even ran downstairs to the hair salon to fetch Mum a comb when Mum expressed embarrassment about her windblown appearance.
Next we sat down with the Deputy Manager, who answered my questions and talked us through setting up a "Life Plan" for Mum. This will be a continuously-updated document stating Mum's memories, relationships, life events and her wishes and needs. There was too much to fill while we were there, so I was recommended to take it away to complete and mail it back to the Home. We sat in the café on the ground floor and had a pleasant lunch while I filled in areas of the Life Plan and Mum listened in to other conversations, as is her habit. As we left, Mum was already talking about "when I move in". I think we have a winner.
Tuesday, 4 December 2007
The architecture of my home isn't ideal for Mum. There are steps, stairs, a narrow bathroom, no shower, there are bare floorboards and the place is a bit draughty. My heating has been on 24/7 since she arrived but she's still feeling the cold. I have put an electric blanket under her bedclothes in place of the hot water bottle I forgot to pack for her.
I'm trying to work from home this week, which is proving very difficult. Mum's memory retention is between 2 to 4 minutes, so she will tend to come wandering upstairs 4 minutes after I've sent her down. Concentrating on a difficult technical document is pretty hard when distracted like that, and I'm scared of losing this job. It's been hard to hold onto my temper even though I know it's not Mum's fault. I've put notices on all the doors telling her that I'm working and not to be disturbed, I've put a notice on the loo asking her to flush it, I've a notice on my bedroom door telling her that I have an alarm that will wake me up at the correct time and that she shouldn't come into the room before that. None of these work.
She doesn't even know where she is. This morning, at breakfast, Mum suddenly announced: "I'm just trying to work out how I can get back to my apartment without anyone seeing me in my nightie." It turned out that she thought my kitchen was part of her apartment block.
Mum has never once flushed the toilet here without prompting - she has simply lost that bit of her brain I suspect. Every time she visits the room (every 5 minutes while I'm working, no exaggeration) I call out "Can you flush the loo, please?" when I hear her coming out again. "I DID flush it, didn't you hear it?" she'll reply. Sometimes I rush out and get her to look and see that she hasn't, but even then she'll tut and sigh as if I'm making it all up in my head.
Small things like that shouldn't get to me, but I'm still losing a lot of sleep to disturbances at night, and I'm terrified by how disruptive I'm finding Mum's presence here.
On the plus side, I'm eating more healthily than ever. Having a "child" stay with you makes you plan meals a LOT better, I find. And I simply haven't any time to myself to swallow my usual quantities of chocolate.
Sunday, 2 December 2007
We had an okay journey in one sense - the traffic wasn't bad, and the lashing rain miraculously ceased whenever we made a pit-stop.
I had to drive with the window open at one point because I was so tired that I started to drift across lanes and even the adrenaline of nearly crashing into someone didn't seem to help keep me alert. Mum didn't let up about how cold she was feeling, sitting there in her multiple layers while I drove on wearing just a t-shirt, desperately trying to keep my eyes open until we reached a service station. I couldn't get her to understand that a few more minutes of cold might be better than major injury or death.
At the service area, Mum suggested that I had a nap, but then her short-term memory interfered with our attempt and she'd start asking me questions or tutting and sighing every 4 minutes, just as I was relaxing into a doze. I'm ashamed to say that after many repetitions of this I shouted at her, and after the 20th time I squirted my water bottle in her direction. This is emotional abuse and I'm guilty of it. I feel so wretched, such a little man. My only defence is that I was weakened by having only 3 hours sleep in the past 72 hours. Mum called me a "swine" but quietened down, and after another 20 minutes or so I got out of the car and loaded up my system with sugar. I bought her some chocolate gingers and apologised profusely, but it's never going to leave me that I did that. I'll never forgive myself and it's one of those moments that cheapens your soul in an instant and irrevocably.
Yesterday, I had pretty much decided that I wouldn't be able to cope with Mum if I took her home with me. I couldn't even face the prospect of the long journey, stopping at every service station on the motorway for Mum to visit the toilet. But last night, it came to me that I couldn't leave her here in this condition alone. Also, practically, if I didn't take her up with me now then I'd only have to come down again... and soon. Suddenly, my worries about how I'd cope with my job while caring for Mum melted away and I even had an impish thought about taking her into the office with me so that I could 'spread the joy'.
We had a horrid cyclic conversation about what would be done about Mum's dog. One minute she'd be happy to hand her over to me or another relative. The next she would tell me that she'll die if separated from the dog. I got the feeling that this wasn't going to get resolved, so I suggested that we went to bed. I hadn't slept more than 3 hours the night before, and that was after a day's work and a 7 hour drive, so I was e-x-h-a-u-s-t-e-d.
Mum walked into my bedroom at 1 am.
Mum came in at 2 am, wanting to talk to me about being invited to join the local Rotarians.
Mum turned the light on in my room at 3 am.
At 5 am, Mum poked her head in the room and asked if I was about to use the shower.
After that I was so full of fury that I couldn't sleep. Mum has kept me from sleeping the whole night and, because I am back at work tomorrow, I have no option but to drive up North today. I would never drive in this condition, but I'm going to. If I die on the road, I'm taking her with me.
Saturday, 1 December 2007
We're walking out of a multi-storey car park, heading for a restaurant we've been to several times before. Mum suddenly stops in her tracks and gasps:
"Oh..... Look at THAT!"
I look ahead, wondering what has her so amazed.
"Thick. White. Fog!" she finally says, awe-struck.
Across the road, the side of a building is painted white.
Mum rejected the first Home out of hand, saying that it was "too close" but not able to explain why that was a bad thing. I suspect that she doesn't want to meet any of her current neighbours after being 'sent away'. We drove on, with Mum wincing and sucking air through her teeth to let me know how much she needed the toilet again.
I drove to our old town, where there's a brand new Care Facility (I'd use that word instead of 'home') that came recommended by Mum's Social Worker. It certainly looked pristine and impressive, with sunlight flooding down 3 stories from a glass roof into a central atrium. The rooms were well-specified and en-suite and there were hand-rails around all the walls. Mum was smiling and nodding and seeming agreeable, but I had concerns that the place was a prison - so many doors that needed swiped cards or keys to get through and the House Manager walking around with a necklace of about 20 sets of keys and cards. Also, the other residents looked very far gone in their Dementia, lolling and drooling and calling out incoherently. I kept looking at Mum's face to check if she was alarmed, but her attention was on our guide and I'm not sure she took in anything that wasn't pointed out to her. And of course, all she was thinking about was going to the loo. I found her a WC and she went inside. As she came out she announced that she needed the toilet and that she thought there was one there... pointing across the hallway. This while stood in the threshold of the toilet she was leaving. Curious.
I drove Mum on to the next recommended Care Home. We had been advised that this one had no current vacancy, but I wanted to get a sense of what constitutes a "good Home". This time, the Home was an older property - a Victorian double-fronted house set back from a busy road. Once inside, however, I understood why the Social Worker had recommended the place. The Owner and her staff were so warm and friendly and full of humour. As a converted family home, the corridors were not designed for Zimmer frames and there were ramps and a stair-lift in place to overcome obstacles for the infirm. We inched our way past single and shared bedrooms (not en-suite) and into a lounge at the back of the house. Here, I was encouraged to see a group of residents actually interacting and seemingly retaining their wits. The Owner told us that a couple of the residents had recently celebrated their 104th birthdays, which I took as a good sign. I was charmed by the Owner and felt that this was a person I'd be happy to care for my Mother. Where the modern Home had the facilities I'd wish for, this place had heart.
During our 45 minutes there, Mum didn't ask to use the toilet once. Curious.
I asked Mum what we should have for breakfast as I looked into bare cupboards. She blithely told me that she was going to have cereal, then looked dumbstruck that there was none there. I suggested that we eat a cooked breakfast in the local café.
It took us 2 hours to get out of the door. I had to dress Mum myself, because she couldn't process instructions like "now put on your blouse" and would just stand there. Her skin hangs off her arms and legs in turkey folds, the muscles within have melted into something the consistency of a soufflé.
At the café, we found a table but Mum needed the toilet, so I guided her to the doorway to the toilets. As soon as we'd sat down again, she wanted the toilet again. We couldn't order and then leave our table and she couldn't make it to the toilet alone, so I suggested that she hold on. We ate quickly and then I took her to the toilets.
At the doorway, Mum just stood frozen on the spot.
I asked her what was wrong.
"Well, I can't go there, can I? There's no toilet for me to sit on!"
She was looking at through the first door into the small corridor which led to the toilet door, thinking I was leading her to an empty room. This was only 15 minutes after her last (successful) visit to the toilet in a café that she's been going to extremely often over the last 7 years.
By the time we got outside to the car, Mum needed the toilet again. I had planned to visit some Care Homes with her, but this wasn't working out well. I took her back to her apartment building and let her go there.
I know Mum hasn't got a bladder infection, because I spoke to her Doctor on Wednesday and he had just done a urine test and checked her blood.
Friday, 30 November 2007
I drove in darkness through heavy rain and buffeted by frightening gusts of wind that made me feel the car was going to be scooped off the motorway. I arrived at midnight after a 7 hour journey.
Mum was asleep sitting up in her chair in the living room. The flat was as hot as hell and stank terribly. Mum looked hell, too. Her face was haggard and had a blue-whiteness to it. She looked scary-thin. I saw that her ankles had swollen massively, like Hobbit feet, from weeks of not ever being raised. I roused her, said hello, and set to exhorting her to sleep in her bed tonight. She finally acquiesced, but then she could hardly walk, even supported on my arm.
I let the dog outside and she immediately began shitting everywhere. I could see stains on the carpet in various places inside indicating that being outside was a rare treat for this dog these days.
It took me an hour-and-a-half to get Mum into bed. First we had to find her silk pillow and she couldn't find a nightie anywhere. I kept telling her to wash her face and clean her teeth, but she'd just stand in the doorway, transfixed, with her jaw flapping silently. The bathroom smelled worst of all: a mixture of mould, rotten food and possibly sewage. There were several frozen meal plastic trays in the bathroom, half-consumed, and dirty underwear stuck in corners. There was no toothpaste to be found, so I gave Mum my tube.
Mum couldn't undress without my aid - couldn't remove her skirt. How long had she been wearing it? How long since she'd showered? She couldn't give me a credible answer. I left her to get into bed, but she came back to the guest room naked. I found a slip for her to wear, made her drink something and filled her hot water bottle.
I was exhausted, but my night wasn't over. Mum came into my room at 3am and at 5am, talking crazy irrelevant nonsense.
Anyone who has checked out the excellent blog "Alzheimer's Moments" will understand why I feel so guilty. Here's a man who has crossed a continent to go and live with his Mom and support her himself rather than see her institutionalised. His tone is usually one of gentle amusement, fascination or wistful sadness where mine is usually one of gloom, despair or sheer terror. I respect and admire the Author and I find his posts to be 'chicken soup for the soul' (well, I'm vegetarian, so probably more like 'leek and potato'.... except that I don't like soup either..... hmmm).
Anyway, once again I'm feeling the need to expose a bit more of my personal circumstances in mitigation for my being such a poor excuse for a Son. This is not meant to exonerate me, but I hope it will help the reader understand where I'm coming from, and where some of my decisions originate.
I've referred to a new job role recently. The fact is that I've been away from work for the past 5-and-a-half years after a breakdown and consequent Chronic Fatigue problems. I have suffered on-and-off from Depression since probably 1992 (it was first diagnosed in '95) but it was a condition managed by medication until a work crisis broke me in 2002. At that time I spent 18-20 hours per day asleep and I couldn't hope to manage my own affairs. My brain is still scrambled, and I'm sure some of my decisions may strike those around me as odd. I still struggle to cope with my own day-to-day problems, and find dealing with Mum's often overwhelming (as is no doubt obvious).
My company kept me on their books on a very low retainer all this time until last month, when I was given an ultimatum to return to work or face state benefits. It couldn't have come at a worse time given that this was precisely when Mum's condition took a steep downward turn. Just when I need time to spend time with her, investigate Care Homes or come up with an alternative solution, I'm chained to a desk trying to re-integrate with a company that outwardly talks about flexibility but is actually intractable.
It was pointed out to me this afternoon that the company might think that I've invented this whole situation with Mum to excuse further absenteeism. The idea is profoundly shocking, but it could explain some of the feedback I've been getting. I just don't think that way myself, so I'm reeling right now. It might be a good idea for me to gather some documentation together just in case I need to present proof to them.
I don't call these posts "comedy" because I'm laughing (see "comedy"), but because there's a farcical aspect to the incidents.
Here's what I know about Mum's visit to the Doctor on Wednesday:
I had telephoned the Surgery to make the appointment for Mum. I booked transport for her. I told the Warden all about it and asked him to intercept Mum if it looked like she was going out to the shops. I rang Mum 30 minutes before the appointment to remind her about it. I checked that Mum had indeed left at the correct time.
So far so organised.
At the Surgery, Mum was asked to take a seat in the waiting room, but when her Doctor came to get her she was nowhere to be found. It took them 20 minutes to find her in another part of the building in a corner somewhere. Mum didn't recall what the appointment was about (the fungal infection that was making her foot hurt) but asked the Doctor to inspect her swollen ankle (again). The Doctor thought the swelling looked mild, but suggested a blood test and asked for a urine sample to check for a return of the bladder infection (bladder infections can cause confusion). The Doctor pointed to the toilet but by the time Mum had come out she had mislaid the sample cup and forgotten what she had gone in to do. She wandered out to the waiting room and told the Driver that it was time to go. Meantime, the Nurses were trying to find her to take her blood sample. She could not be found.
Mum returned to the flats, introducing the Driver to everyone she met as her Doctor, come to visit her.
The Warden called me to say that he was concerned that Mum couldn't produce any pills or cream prescribed for the infection, so I telephoned and spoke to the Doctor concerned who told me all of the above. Once he knew about the reason for her visit, he decided to call on Mum at home. Blood and urine were taken and everything checked out.
Wednesday, 28 November 2007
It's happening again.
I only made up my mind to go down and visit Mum yesterday and she has already called me up 3 times this afternoon, asking me where I am and when I'm going to arrive. She thinks it's today I'm coming. She evidently thinks my land line reaches me wherever I am, too.
Each time she rang I explained that it was at the weekend that I would be coming down and that I work during the week.
Each time she reacted as if to say "Of course! I knew that!"
And then she would call again.
Each time I asked her what day it was today. Each time she had no idea. I would tell her to look at her clock, but she would read out the date every time I asked her for the day.
I'd forgotten how hard this is. I'm feeling exhausted even before the long drive down.
The Social Worker has just telephoned again, and we had another good chat about options for Mum. We discussed various styles of Care Homes and Private in-home Care. She is contractually prevented from recommending specific service providers, but she was able to give me a range of options to look at while I'm visiting this coming weekend.
I found one thing she said a particularly interesting insight: that Mum's disorientation is like that of a tortured prisoner. Think about it: she is depriving herself of food and water, her sleep patterns are disturbed and she is suffering from an infection. Meantime, we're all circling around her threatening to make big changes in her life on her behalf that must seem scary.
It's a perspective that I'm going to have to keep in mind, especially when I catch Mum telling me exactly what she thinks I want to hear.
I had a call from the Warden first thing this morning. Yesterday, Mum's Chiropodist/Podiatrist had been concerned to find another growth between Mum's toes, and had immediately called for a Doctor's appointment, which has been arranged today. It looks like Mum may need some help washing herself.
Anyway, the Warden pointed out that this was inevitably going to mean a prescription of anti-biotics again (can I cope with that again?). I'm not a devout man, but it seems almost too perfect that I was planning to spend time with Mum anyway - I'll ask the Warden to regulate her pills until Friday when I come down for the visit.
The Warden expressed surprise that the Doctor hadn't inspected her feet when Mum went on Monday about her swollen ankles, but I suddenly worked it out: Mum would have got to the Surgery and not remembered why she was going. They'd have had a very general chat about nothing in particular. That would explain why Mum was very vague about his advice when I rang her afterwards. How stupid of me not to see that coming. From now on, I should ask to speak to the Doctor directly when I make an appointment for Mum.
Tuesday, 27 November 2007
Well, the Social Worker spoke to me this evening about her meeting with Mum yesterday.
She told me that she was VERY concerned about Mum: that she had appeared extremely disoriented and was obviously not managing on her own. Mum had made many claims about being able to cope, but these had been pretty easy to see through as confabulations. The Warden had sat in on the conversation and had gently corrected Mum whenever necessary, bringing up such incidents as Mum's wandering out onto the by-pass.
When the subject of frozen meals came up, Mum at first claimed that she managed to cook them fine, and then shortly afterwards expressed distrust of her microwave oven (the only functioning cooking device in her kitchen). She was unaware that her built-in oven had been disconnected and claimed that she cooked the frozen meals in there. It's possible that she hasn't been eating anything BUT her one delivered meal per day, and the Social Worker guessed that Mum was probably giving half of THAT to the dog.
I had organised a visit to the Doctor yesterday after Mum had told me that her ankles were swollen on Sunday. This hadn't resulted in any diagnosis, but the Social Worker pointed out that the swelling is most likely due to the fact that Mum is not making it to her bed at night and sleeping, instead, sitting up in her chair. Her fluids are naturally pooling at her feet because she's not elevating them. The Social Worker told me that Mum had somehow managed to turn off the heating to her bedroom and had consequently stopped using the room at night.
When the Social Worker expressed concern about Mum being financially exploited, I took the opportunity to let rip about several incidents that I had noted over the past 7 years: the helpful 'handy man' who befriended Mum just when she was selling up our family home and who made off with most of our stuff; the Spanish property company who flew Mum out to a resort and pressured her into a deal for a building that had no planning permission and which wasn't built 2 years later (she lost about £50,000 on that one); the catalogue firms that prey on her; the £70,000 I think she's donated to charity in the past 7 years; the £300 she still spends on miracle pills each month because she believes every whacky thing in print.
The Social Worker said that she felt the Consultant's diagnosis of 'mild to moderate dementia' was perhaps generous and that from what she'd seen Mum was 'moderate to severe' in her view. We discussed the sort of Care Homes I should be looking at, and also more immediate arrangements for twice-daily visits from someone to make Mum's breakfast and dinner, and maybe help her plan her shopping.
I've pretty much decided to travel down South this weekend and visit a couple of homes close to Mum, perhaps with a view to getting Mum to try one for a month or so around Christmas. I may even bring her up here to stay with me for a week, so that we can visit the two I looked at last Sunday. The thought of coping with her here, though, is frightening. I'm not sure she'll do well with the stairs in my house, or be able to use my bath. I'm barely feeding myself right these days so the thought of caring for someone very needy already overwhelms me.
Monday, 26 November 2007
A Social Worker was scheduled to visit Mum today to assess her needs should she go into Care. She arrived at 1:30pm. It's almost 4pm now and I just rang a few minutes ago to ask Mum how things had gone.
Mum picked up the phone and there was the usual delay while she fumbled with the handset and pressed various numeric keys while making little noises of surprise and consternation. I could hear the Social Worker in the background gently reminding her how to operate a phone ("no... just hold the receiver to your ear"). When Mum worked out what she was doing, I told her that I realised that her visitor was still there so I'd leave it and ring her back later.
I heard Mum tell the Social Worker that I was happy that she was there and that I had asked to speak to her.
Now I could easily start to worry about Mum's inability to understand my simple statement, but I'm going to put this one down to her being so thrilled at having company that she couldn't spare any attention to what I had actually said and just invented something that seemed likely.
Anyway, the Social Worker and I had a brief exchange in which she told me of her understanding of the situation from Mum's point of view. Mum had obviously given a rather bizarre version of her wishes, which I will attempt to correct tomorrow.