The Fear

 

This evening my Mum has the Fear. Her eyes are wide and staring, she has awoken from a nap in her chair and can remember nothing. The questions come thick and fast, with genuine panic in her voice.

“Do I live here?”

“Are you my daughter?”

“Are they real?” (about the lions on the TV) “Are they here?” (in the room)

She had a fall at her day centre earlier in the week and is considerable pain but has no recollection of this now.

“Why can’t I walk?” “Why does my hip hurt?” “My shoulder is painful, what have I done?”

This situation is particularly difficult as I am worried that she will forget she is unable to bear her weight at present and will try to stand and fall again. We have signs up “DO NOT STAND, PRESS YOUR BUTTON” (panic alarm round her neck) but whether she sees the sign and correctly responds to it is anyone’s guess.

It is almost impossible to imagine how terrifying it is to have no comprehension of who you are, where you are and what you should/shouldn’t be doing. All we can do is reassure her while she profusely apologies for “being so stupid” and asks repeatedly “What should I be doing?”

She is stuck in a horrible middle ground where she is very aware that something is awfully wrong but has absolutely no idea what it is and cannot retain it when it is explained to her. Scary doesn’t come close.

 

Getting help

I’m often asked by those embarking on the journey of caring for a loved one with dementia, what will help them the most? Which piece of advice do I wish I had known at the start? Without a shadow of a doubt the answer is to get help. It sounds obvious but the task ahead is enormous, daunting and ever changing, and to go it alone would be impossible. It took me a while to trust others with my Mum & Aunties care, and while there are sometime glitches in the quality of care received, my sanity depends on their support!

*Start with your GP, get a referral for specialist diagnosis…medication, advice about the dementia itself and prognosis. They can also organise a referral to the Continence Service who can supply Incontinence Pads if that is an issue.

*Talk to adult social care which should result in a social worker to support you. They can help you organise a care package which may involve carers who visit your home, or look at whether residential would be the best option.

*Day Centres are also an option that your social worker can help you with. There are both Council run and private specialist centres that allow you as carers a respite (or in my case to work!) and give your loved one a safe, stimulating, social environment.

*Investigate Meals on Wheels who deliver lunchtime hot meals and Help around the home (through Age UK) to assist with cleaning.

*Talk to your local Carers Centre. They offer advice and support and in some cases a sitting service, allowing carers a little respite.

None of these are the answers just springboards to solutions that have worked for us.

Initially I thought I could go it alone, but quickly realised with no siblings, no family nearby and other commitments, it is virtually impossible especially when things go wrong. My husband and our friends are amazing but if you are embarking on this journey I cannot emphasise enough cut yourself some slack and take all the help you can get, you will need it!

Express yourself

One of my Aunties greatest struggles these days is how to express herself. Dementia has robbed her of her conversational skills and left her with a bank of stock phrases which she tends to repeat, unable to decide if they are appropriate. Today, as ever, food was a huge preoccupation, “Can I get my dinner now?” was repeated at least a hundred times from the moment she set eyes on me until the moment I left despite the fact she was given her dinner fairly shortly after I arrived. While she ate her dinner she continued to repeat “Can I get my dinner now?” despite my daughter gently reminding her that she was eating it.

Words are often lost, and are substituted with sounds “I need to put my bbb baaa nnn (nightie) on.” Interestingly she seems to splice conversation with her native Scots far more than she used to. I assume old memories come easier e.g. “Thank you very muckle (much)”.

Often the need to express herself manifests itself in over exaggerated emotion. Usually this is cackling laughter, which makes her sound somewhat demonic, other times it is a fake crying sound. Both rather disquieting but curiously both seem to satisfy her need to communicate and both can be switched on and off at the drop of a hat.

Checking and Choking

My Aunties dementia was shocking both in the speed it became apparent and in its effect on her. My Mums Alzheimers has been a much more gradual process, slowly manifesting itself in increasingly upsetting behaviours. It has been extremely difficult to watch her slowly lose interest in the hobbies that have always meant so much both to her and to us as a family: an accomplished dressmaker who made her own clothes, a brilliant cook, talented sculptor, keen knitter, avid gardener, and furniture restorer. All her interests have gradually been abandoned, she doesn’t have enough concentration to follow projects through and although she will pick up some unfinished knitting, will put it down again untouched a few minutes later.

A behaviour that has taken over is checking, often a few times a minute, what she should be doing. Her earlier life was spent being told she should be doing better, her adult life spent caring for her family so she has an enormous ingrained sense of duty and finds it almost impossible to accept that in her eighties she can finally relax. Trying to find small tasks to help her retain a sense of value is harder than it sounds, terribly self critical: failure is not an option, so any requests have to be manageable, and with negligible concentration…

Choking is another upsetting facet of the decline into Alzheimers. My Mum seems to have forgotten how to swallow on a subconscious level so frequently chokes on her food, drink and medication which is upsetting and scary for all concerned. It has been suggested by her day centre that her food be pureed. Unfortunately my Mum is in a difficult middle ground where she is aware that something is wrong but cannot articulate what. She would be mortified and upset if pureeing was suggested. On more belligerent days she calls her incontinence pads “nappies” and asks “Am I your child?” when I give her simple instructions to help her know what to do next. Pureeing food might have to wait until she becomes less aware of her situation.

A bit sweary and hitty

The bipolar tendencies of my Auntie are not to be underestimated and today was no exception. On my arrival she is smiling broadly and singing to herself, however cleaning her after she has soiled herself is not her favourite activity and the mood quickly changes. “You f**king filthy b*stard!” she yells repeatedly, taking swings at my face. Dodging blows, wiping her backside whilst holding her nightie up and pants down is no mean feat, but through years of practice she has yet to inflict serious damage. “I’m getting another girl!” she screeches as a parting shot, in her mind I am a hired help, not her niece.

Job done, I wash my hands and pop back in two minutes later to be greeted with a broad smile and a rendition of one of her favourite nursery rhymes. My daughter who was waiting in the bedroom for me remarks, “She was a bit sweary and hitty tonight, now look at her!”  A tiny blessing of this awful disease, bad things, as well as good ones, are quickly forgotten.

Normal service has resumed

On arrival I am greeted by my Auntie’s cheerful warbling of I believe by Elvis. She has a repertoire of a handful of songs from her past which she can sing portions of word perfect. In this instance the first verse is on a loop, irritating but good to see her happier. As I busy myself with her dinner preparations I turn and find myself face to face with her. We both jump and giggle: she has a fine line in stealth despite her dementia shuffle. She has no idea why she has come through so I guide her back to her chair.

As I get her changed she remarks “Grow up and get a life'” an expression she has acquired fairly recently. I find this deeply upsetting as her memory is so poor to have learned a relatively modern expression she must have heard it countless times for it to stick, and in what context? One of her less pleasant carers, who I suspect is the culprit for this unpleasantness, told me it was an expression from her childhood. Clearly not language from the 1930’s! A great concern as a caring family member is trusting others to act as you do with your relatives and your inability to know if this is not the case.

As I leave she remarks “I’m feeling baa, baaad, maa, maad!” then laughs. Normal service has resumed.

A more lucid day…

Today was one of those strange anomalies when my Auntie has a lucid day. Generally my Auntie has a stock repertoire of a few sentences that she says on a fairly simple loop,  so when I arrive at her flat and she greets me by name I realise things are a little different today. Lucid days are few and far between. My Auntie has had only one really lucid day in the last twelve years, on that occasion she had reverted totally to her pre-dementia self.

This induced a gamut of feelings: initially it was wonderful as I was faced with my beloved, warm, empathic Auntie. It was then deeply upsetting as I was fairly sure this was a temporary change and couldn’t bear the idea of losing her again. I had almost blocked out the person she was in order to cope with the pain of caring for the person she had become, and to be faced with her like this was tantamount emotionally to resurrecting my Dad for a short while, knowing he couldn’t stay. It was also incredibly disturbing to realise that my Auntie was still “in there” somewhere and gave me a tiny glimmer of hope that at some point maybe she could be “fixed”.

Sadly, and as expected, the change was fleeting and by the next day she was back to singing rhymes from her childhood and repeating her stock bank of sentences again. I am forever grateful I had the presence of mind to film her on my phone on that occasion. It is incredibly painful to watch but amazing to have a lasting reminder of who she was, as her dementia took hold before the ability to film easily was available.

Today my Aunt was less coherent than on that occasion but still completely different from her usual persona. Unfortunately during her life my Aunt suffered from debilitating bouts of depression, however a small crumb of comfort is that her dementia has softened that and I liken her to a jolly child: She swings from grumpy to happy in a matter of seconds, is easy to amuse with a tickle on the cheek or reminder of her school nickname “Giggles,” enjoys singing familiar songs and rhymes, has a huge preoccupation with food and has no concept of mess, frequently urinating & defecating on the furniture/floor, and eating with gusto whilst food is scattered over her clothes, floor etc.

Lucid also seems to equate with depressive and that side of her personality rears it’s ugly head today. She tells me she’s lonely and she hates her new place. When I tell her she has lived here for twelve years she doesn’t believe me. She asks repeatedly about her pension as she has no money in her purse (due to thefts by previous carers and her deterioration all her finances are managed by direct debits) She tells me she misses her Daddy (he’s been dead since the 1940s) and she wishes she was back in Scotland with her family (they are all dead, I’m it!) She calls me by name throughout our exchange, asks direct questions and barely cracks a smile. Todays visit feels long and I feel guilty hoping she is less lucid tomorrow and back to her jolly, if less coherent self…