Dementia

All posts tagged Dementia

Crisis Calls Again

Published 14/07/2014 by damselwithadulcimer

Whilst out shopping on Saturday afternoon I took a phone call from Careline (the company that my mum buzzes through to when she needs help or has a fall). They told me that she was having difficulty getting out of her chair and had asked for assistance. I explained that it would probably take about an hour to drive across London and by the time I got to her home her carer would be due to make her afternoon visit. Sometime later my sister phoned to tell me that the carer was very concerned as our mum was feeling dizzy. So I packed a small bag and headed out, unprepared for the traffic jam, which did nothing to alleviate my worries.

On arriving at mum’s I found her in bed and it took us four attempts, at intervals of a few minutes between them, for her to be able to stand and keep her balance. Whilst she was resting before the fourth effort I dialled 999 and requested an ambulance. Once she was up and seated in her armchair, which seemed like an extra long walk with the Zimmer frame as far as she was concerned, she seemed fine and we chatted about the past. In the meantime my sister also phoned back to tell me she was leaving her friend’s house (in Hampshire) and wondered whether she should also come over. She decided she would and arrived before the ambulance, which turned up nearly four hours after I had placed the original phone call. I’m not casting aspersions or complaining as I made it clear that it wasn’t an emergency visit, but that I believed mum needed to be seen by professionals. I knew it was fruitless to try to contact a locum via her GP’s surgery. From experience I know that a doctor would be reluctant to make a house call, even for a disabled octogenarian, and would try to persuade us to take her to the hospital. Has said medical person ever met my intransigent, stubborn, single-minded mother?

The paramedics were absolutely fantastic. They tried to calm two stressed not-so-young daughters, explained how we should try to look at things from mum’s point of view and not our own. Pointed out that she probably had mental capability (which they later confirmed was true) and reinforced the stress awareness training, which I am currently undergoing. The upshot is that if she wants to remain at home, whatever the risks, she has every right to stay there. She has no idea how we worry and anticipate the worst (another aspect of my workshop that I am trying to put into practice). Do not project your fears onto events that you cannot control and that may or may not happen.

They eventually turned their attention to a sleeping mother, who reacted by telling the two of us to go home and leave her alone. She even suggested that we be locked away in the ambulance. Finally she agreed to be taken to A&E, with my sister driving behind the paramedics. I was so tired that I was unable to go anywhere, so agreed to remain behind and cat sit for my mum’s beloved Millie. So around 1am I crawled into mum’s bed and tried to sleep. Would you be able to close your eyes for long under the circumstances? The flat is like a sauna, and the temperature must hover around the high 20s, even in the summer. Every time I dozed I was woken by something: the rain, sounds of other people entering the block, the cat jumping in and out of the window. I seemed to be checking the clock every hour until my sister phoned around 7am to tell me that they were coming home.

Once back she informed me that mum had been diagnosed with another UTI and this could possibly be affecting her blood pressure. Although mum’s is always on the low side, it was not adapting when she raised herself to her feet, causing the dizzy spells. They have also recommended that her doctor refers her for a CT scan, just to assess her brain activity.

So two women finally left their mother in bed at around 9.30am yesterday morning and drove to their respective homes, bleary eyed and concerned for their mother’s safety. We will still try to persuade her (very gently, no bullying or cajoling) of the merits of a residential home where there will be somebody to care for her round the clock. Is this for her own benefit and safety or is it so that we can drop our vigilance and stress levels? Who can say? I’m sure I worry far more about her now than I did about my children when they were growing up.

When you have to worry about your mum as well as your children

Published 23/06/2014 by damselwithadulcimer

Somebody once told me that you’re never truly grown up while your parents are still alive. Well my dad died more than 30 years ago, but you’ve probably seen from some of my other posts that my mum is still with us, even if not in the best of health.

When we were children I can recall my grandma worrying about us, and my mum’s response used to be that she couldn’t wrap us in cotton wool. My sister and I grew up and made our own lives and mum continued to live hers in her own way. Sometimes it seems that she’s invincible: a heart attack, a close call with pneumonia, a broken hip and now dementia. A few years ago when she was healthier she used to give me pep talks and remind me that she wouldn’t be around forever but her GP has referred to the indomitable spirit that has kept her going.

However (I bet you heard that word coming) she is becoming weaker and frailer. Her lack of interest in food means that her calorie consumption has dropped with the resultant loss of weight. She probably has no idea what she looks like as she won’t permit herself to use a mirror. The lady that was known for clacking around on her high heels now slops around with back-trodden slippers, using a Zimmer frame for balance. Her pride in her appearance has gone as she has no interest in checking it. Her former insistence on foundation garments (a good bra and a belt) has been transplanted by going bra-less and wearing knickers that are several sizes too large, and sometimes the latter fall off so she goes commando at home. Make up is now never applied, with the exception of a bit of lippy for a funeral a few weeks ago, she hasn’t had her hair done for more than six months and many of her clothes have burn holes from the careless discarding of cigarettes.

This morning my sister phoned to tell me that even mum’s carer was concerned at her lack of energy and interest. All she wants to do is stay in bed and sleep, or go back to bed for another sleep if she has been persuaded to leave her bed. The mother who would never get dressed without having a bath, now has to be coerced into getting in the tub about once a week, and often shows a lack of interest in even having a wash.

I’m sure many others have been in my position and it will continue to happen. But how do you stand by whilst a loved parent neglects themselves to such an extent? She isn’t tempted by food, stating that she’s never enjoyed it anyway. The less she eats the more her stomach shrinks and the less she can cope with. A while ago I scrambled two eggs and put them on two small slices of toast: one for her and one for me. Even her portion was more than she could eat. She used to love my scrambled eggs, and my husband is often critical of ones that are served in restaurants or hotels, preferring my lighter, fluffier home-made versions.

Unfortunately I missed the doctor’s responses to my phone call, so will have to speak to them tomorrow although I don’t know what they can suggest or do. She refuses to drink the Complan that has been prescribed to add to the few calories she consumes, and all the health care professionals state that she maintains capability so her wishes have to be respected.

Tomorrow I will visit again, armed with another 200 cigarettes as she values them more than she does food. I will again phone the doctor and see if somebody can visit her at home while I am there, so that I can countermand her declarations that she is fine. If she isn’t too tired I may be able to encourage her to watch some Wimbledon tennis on the television, or I will deal the cards for a few more hands of kalooki, and I will again try to coax her into eating something, in spite of her protestations that she doesn’t really fancy anything.

And all the while I will try to put into practice what my counsellor is trying to instil in me: the fact that I am important and do matter and must take care of myself, and I will also attempt to work on the de-stressing strategies and spare some time for relaxation meditation before my next workshop to counteract the stress of keeping all the balls in the air at the same time.

One rather tired hamster wants to climb out of her wheel until tomorrow and build up the reserves needed to cope with another day. If only I could get a good night’s sleep. The irony is not lost on me: my mother just wants to sleep, and I can’t.

My Demented Mother

Published 15/05/2014 by damselwithadulcimer

Once my mother had a firm diagnosis of vascular dementia, my sister and I decided it was time to tell her remaining friends and family.  Of course the first reaction we generally received was ‘Does she know you?’.  To be honest I didn’t know much about the various types of dementia so I suppose it is only to be expected that other people don’t really understand it either.  There was also the ‘coincidence’ of meeting other people who were suffering, or caring for sufferers.

Obviously the diagnosis has not changed anything;  I suspected dementia even when Mum was just suffering from Mild Cognitive Impairment.  Like a hovercraft daughter I am ever vigilant and looking out for changes and risks, and risk is definitely the most important factor.  She lives alone in a state that I refer to as ‘dependantly independent’, relying on visits from my sister and me, seeing her carers twice a day, and spending the greater part of her days alone.

We have talked about installing a Granny Cam as we often wonder what goes on in her flat when nobody is there.  Examples are the huge amount of bread that seems to disappear between restocking the freezer.  She is not particularly interested in food and usually opts for the quick fix of bread and butter.  Even when her carers offer her something to eat she responds that she is not hungry, so they just make her another sandwich.  She doesn’t eat her crusts, not because she can’t but probably because it is easier not to. Sometimes I make her a light dish of bacon and eggs, baked beans on toast, or suchlike but she rarely manages to finish the smallest portion.  Everything is usually washed down with cups of artificially sweetened black coffee, a throw back to the days when she used to diet, or glasses of warm fizzy drinks.  Nothing is refrigerated.  If she is offered a choice of what to eat, she always leaves it up to the person preparing the food.  She probably now weighs about 6st and is somewhere between a size 6 and a size 8.

Her time is spent sitting in her armchair and popping back to bed for another sleep.  She often wonders why she feels so tired, to which I reply that she is not getting proper nourishment and has no stimulation.  She has been out of the flat twice so far this year and it is now the middle of May.  Since breaking her hip fourteen months ago she has relied on a Zimmer frame for moving around her home and reluctantly uses her wheelchair for visits to the great outdoors.  Recently my sister and I have been encouraging her to play cards as it passes the time and keeps her brain active, although there are often occasions when she seems to forget the rules.

There are phases when she seems to fall frequently and the Paramedics are summoned to get her back on to her feet, but she always refuses to go to hospital to be checked over.  She still smokes heavily and probably doesn’t even realise that she has just finished one cigarette before starting on the next one.  She doesn’t seem to inhale any longer and just puffs away.  Another worry is that she often fails to extinguish her matches.  The arthritis in her wrists presents problems when it comes to using a lighter and also when it comes to waving out the matches, which are frequently tossed into an ashtray when still alight, or worse still thrown into the waste bin.  She burned one waste basket this way and chucked a lighted match into the bin in front of me recently.  My reactions were fast when I saw a flare of orange, but she appeared to be completely nonplussed.  Her clothes, sheets and rug are also punctuated with burn holes.  She has left food under the grill (luckily an electric one) and gone back to bed.  One of her carers found her recently, fast asleep in bed in a smoke-filled apartment.  The only upshot of this is that I have organised a safety check from a local fireman: practically every woman’s fantasy, and a change from the usual Paramedic in green uniform.

Because Mum is so tired she can’t be bothered to keep in touch with friends and family.  She ignores the phone when it rings, doesn’t check her messages, and never phones anybody.  This is all exacerbated by her failing hearing, which she refuses to correct by wearing her hearing aids.  People think she is annoyed with them, but the truth is that she can’t be bothered to talk to anybody, and indeed has nothing to talk about as she goes nowhere and sees nobody.

The most recent and upsetting change is to her behaviour.  She has begun to get bitchy and often picks on me, criticising my clothes, my shoes, my tights or anything else.  There are good days when everything is fine, but then there are the occasions when we revert back to the old days of little daughter trying to please Mummy and not managing to get it right.  A friend told me that, before her mother’s dementia was diagnosed, she picked arguments with family members.  I just try to remain my old placid self, but it is upsetting when you try your best and are just rewarded with snarky remarks.

It’s all a learning curve and we just have to adapt and adjust as we go along, finding our own coping and helping mechanisms along the way.

 

The Big Society: Are We Really All In It Together?

Published 28/01/2012 by damselwithadulcimer

At least Stephen Hester and his huge bonus are not on the front pages again today.  My other half tried to convince me that the RBS boss is worth all those shares and explained how much money Mr Hester has saved his bank.  Sorry, I’m still not entirely convince and need somebody to explain to me, very slowly, why bankers are so highly valued.  In my opinion there are many people working in far less high profile jobs and professions and who contribute to society in much more beneficial ways.  From where I’m standing it appears that our cabinet of millionaires, and multi-millionaires are far more closely allied to the ‘fat cats’ of industry and big business, than they are connected to the majority of people in Britain.

Although I’m jobless, I’m lucky that I don’t need to apply for benefits, although I would love to work. However I use some of my spare time to volunteer and help out others and I believe I have I much more balanced and sympathetic view of those who are far less well off than I am.  Today I put money in a collection box for Alzheimers and Dementia, simply because I’ve often stood in the same spot and collected for my local branch of Mencap.  Life is not fair these days, and can even be extremely cruel, but I usually feel pretty good in myself after a couple of hours holding out a collecting tin and feeling it getting heavier and heavier.  I know what I take in an hour or two would be a mere drop in the ocean compared to the earnings and bonuses of the big bank bosses.   I often feel incensed when people smile at me and walk away without putting a penny in my tin, but I feel more of a connection to those less fortunate than I would do if I carried on living my own self-centred life.

I think those of us further down the heap have more of a connection than those who preach to us.  Would they really want to donate spare time to help people learn the internet for nothing at their local library (assuming that they have one that is still open)?  I will expand this to teaching computing and internet to elderly carers in my area next month.  These are the unsung heroes of our society.  Those people who have no option but to care for friends and family with disabilities.  The people they care for are not scroungers, but people who are afflicted with problems, difficulties and illnesses that prevent them from working.  In spite of these handicaps, I know of men and women with learning disabilities who work to a certain extent and do the best they can.  And I haven’t heard one of them moan or grumble about their situation.  They just get on with it and carry on as best they can.

We are definitely not all in it together.  In Animal Farm George Orwell famously stated that ‘all animals are equal, but some are more equal than others.’  It was ever thus and will never change, unless those who are more equal roll up their sleeves to help those who are less equal.