Alzheimers: the disease of contrasts

One of the hardest things caring for people with dementia is never quite knowing how the person is going to be on any given day. This can manifest itself both in wide fluctuations in memory and mood. My Mum’s alzheimers frequently robs her of the ability to remember what has happened from minute to minute, but enables her to recall things from her distant past with absolute accuracy. There also seems to be a grey area in between the two relating to things that have happened in the fairly recent past (last 20 years or so) These seem to vary the most, sometimes there sometimes gone. To illustrate how wildly her memory changes these are all examples from today:

Mum: “Well the chemical composition of chalk is CaCO3,” (whilst listening to us discussing why chalk is slippery to walk on)

 

Mum: “I guess e” (whilst playing hangman) (Next go) “I’ll have e now”  (Then on being told she guessed that one already) “Okay, I’ll try e”

 

Mum: “Where’s my husband?”

Me: “He died 17 years ago”

Mum:”Why? Did I have anything to do with it?”

Me: “No, he had a brain tumour.”

Mum: “I bet you wish it had been me…”

 

 

 

Role Reversal

Following my Mums unsupervised fall at her day centre, we were forced to make the difficult decision to move her as we were unhappy with how the incident was dealt with and their safeguarding procedures. The decision was extremely hard as good day centres are few and far between, and change for anyone with alzheimers can be incredibly frightening and disruptive.

Thankfully after some visits to explore the options available a new centre was decided upon. It ticked all the boxes: safe, reliable transport, friendly warm atmosphere, lots of activities, local and a home from home feeling. The staff were welcoming and instilled in me a feeling of trust which is paramount when you are entrusting a vulnerable loved one to their care.

Mums first day arrived, and as with the first day at school, her bag was packed, necessary equipment ready, forms filled, medical info imparted. Off she went in the minibus and off I went to work. However she wasn’t far from my thoughts… would she like it? would she make friends? would she miss us? would she be scared in a new situation?

As arranged I met the minibus and helped her into the house, they assured me she had a good day. When I asked her if she had enjoyed it, the response was less cheery “No, it was scary!” It is so hard to be reassuring when she couldn’t remember anything about it or why she felt like that, suffice as to say not knowing why you are where you are, and what where you are is, is probably reason enough.

Finally her parting shot on the matter, those words that every mother dreads on the first day of school “I don’t have to go back again do I?”

Guilt

Guilt is an emotion, that thanks to my Dad’s influence in my upbringing, I had never had much dealing with. He brought me up to have confidence in the decisions I made and that providing one thought carefully about them at the time, there shouldn’t be much to feel bad about latterly. This is not to say that I have never made a bad decision, far from it, but with his positive influence the emotional fallout from them was greatly reduced.

Unfortunately once you start having responsibility for other peoples lives there arises a multitude of conflicts of interest and with them guilt. When you, as a person without dementia, know something is right/safer/a good idea, but the person with dementia is against it, a conflict arises and with that guilt that you may be doing the wrong thing in pushing them e.g. to take medication, particularly when there are serious consequences with either choice.

In ones own life if you make a wrong choice you, as the decision maker, are the person who has to live with that. As a carer for someone with dementia, if you don’t push them to make a right/safe choice, possibly against their wishes, they have to live with the consequences and you have to live with the guilt. Is it right to “over ride” peoples wishes if they still voice an opinion, even when you know the thinking behind them is skewed?

I have power of attorney for both my Mum and my Aunt and trying to do the right thing is a heavy burden to carry. My Aunt, for example, has spent her lifetime refusing all medication. The thinking behind it has always seemed irrational: an unpleasant reaction to a particular medication in her younger days has caused her to refuse all drugs. Latterly I have been faced with the dilemma, when she is ill do I give her medication? or respect her lifelong wish but at the detriment to her health? The guilt either decision carries weighs heavy.

Guilt manifests itself in other aspects of care. Guilt when we take our one week of holiday a year and my Mum goes into a residential home…. “You’re not going to send me away are you?” Guilt feeling excited about having a break then remembering she called 999 on the payphone at the home and told the police she had been put in prison. Guilt (and profound sadness) when we leave Mum with a sitter and go out out for a few hours somewhere and she says “I used to like doing that.”

I’m not sure there is an way to assuage the guilt. I try to make the best decisions both for my Mum and my Auntie, but balancing those with their wishes, and in some cases my own feelings and the best interests of my husband and children is never going to be clear cut. Ultimately there will always be a conflict of interests and ultimately I, as the carer, am the person to carry that burden of guilt.

Mind and body disconnect

Having felt that Mum was on the up after her fall, today was a real cause for concern as it seems she has forgotten how to walk. Yesterday she was able to shuffle, albeit enduring considerable pain, to her commode. Today that ability has gone. She can stand, but even with her walker, and one of us supporting her and reminding her what to do, she appears unable to move her feet in a useful way. Instead of supporting her weight, they become off centre, tangled and ineffective. This results in her crumpling and the person supporting her having to catch her to avoid another fall.

There appears to be a total disconnect between knowing what she has to do to walk effectively and her body. When we try and encourage her by giving her simple instructions e.g. left foot now, head up etc, she becomes frustrated and snaps “I’m trying!” but somehow her efforts are in vain.

Exactly what this new development means for us remains to be seen. Will is be temporary or permanent? Only time will tell but it is yet another unpleasant reminder that the effects of alzheimers are inconsistent but relentless.

One step forward, two steps back

Today was a day for a minor celebration, in that my poor Mum finally left the house, following her nasty fall two weeks ago. Her hip is exceedingly bruised, and with pulled muscle, is causing her considerable pain. It has also caused her mental anguish as she cannot remember what the problem is but as soon as she tries to stand, she realises something is very wrong.

The lack of mental stimulation from her day centre has resulted in a noticeable increase in Mums confusion. Maybe it is attributable to her snoozing in her chair, which often seems to wipe her memory on wakening, maybe just due to less social interaction, who can say? What is clear is she has been going stir crazy and clearly needs to be resuming her normal activities. Her GP gave her the once over and reassured us there were definitely no breaks and that moving was the way forward.

Unfortunately this was far easier said than done. Mums confidence was shaken badly by the fall, and her alzheimers massively impairs her ability to move safely. Despite my best efforts in reminding her which leg to move next, to straighten up, stay close to her walker and keep her brakes on, walking was enormously difficult. She has lost the ability to retain information so following simple one step commands is the only way forward e.g. left leg (tap it to remind her which one), now right leg.

Despite several occasions when I had to catch her as she buckled under her legs like a drunk giraffe,  we all felt an enormous sense of achievement as we got her in the car. At least she would enjoy the change of scene her day centre provides and enjoy the social interaction of meeting up with old friends.

All went well and she returned home smiling and saying that she had a great day. Ten minutes later she calls me “When do you think I will be able to go out?” she asks. I gently explain she has been out at her day centre for most of the day. The fear returns to her eyes “What! I can’t remember that! Are you sure?” She asks, her mind a blank once again.

The rope is fraying…

Bedtime seems to be a time of heightened confusion for my Mum. I suspect an evening of napping in the chair is to blame, but each night as I get her ready for bed our conversations seem increasingly detached from reality.

“You don’t look much like your mother,” is tonights opening line. “Sorry?” I reply, slightly confused by this. “You are both beautiful but in different ways,” she qualifies. “Who are you talking about?” I ask. She stops and looks puzzled by my reaction. “Umm, am I being silly? (long pause) Am I your mother?” I explain that she is indeed and she seems relieved to have some clarity but not entirely convinced.

A few weeks ago she was adamant she was my grandmother and it took considerable explanation, supported by photos, to convince her otherwise. I suspect todays confusion is an extension of this.

It feels increasingly like reality, and her bond with me, is like a rope and slowly and steadily, with no hope of repair, the rope is fraying…

It’s not fair

My Mum is recovering from a bad fall which occurred when she was unsupervised at her day centre. It has resulted in x-rays (fortunately no breaks) considerable pain and an inability to walk at all without considerable support.

For my part I have felt enormously guilty: should I have vetted the day centre better? Could I have prevented it? Angry: why wasn’t she supervised? and utterly exhausted as her dependancy has increased hugely as she such limited mobility.

When I pop into my Mum’s flat to put her to bed she greets me angrily “Finally, I have been calling you for ages!” She gestures to her TV remote control. I explain she needs to press her red button on her pendant alarm, and that I didn’t know I was needed as the TV remote doesn’t call me. She is unappeased and curt, “Well I called you and you didn’t come.” Her black mood continues as I help her to her commode “You just please yourself, it’s easy for you, just wait until you’re old, then you’ll realise how hard it is for me.”

This coldness and total lack of empathy to our lives and the demands she puts on us is one of the most difficult aspects of Alzheimers to bear. My Mum used to be the most caring person, and to hear her speak with such little warmth is incredibly hard. We try so very hard to make her life as good as it can be, it is soul destroying to hear her speak with such vitriol about our efforts. I have to constantly remind myself it is not my Mum talking, just her alzheimers.

I feel so angry that alzheimers has robbed me of my loving Mum, and our girls, of their funny creative imaginative granny. As time passes and my Mum deteriorates, I feel desperately sad that this demanding grumpy granny is all they will remember. Although she is here in person her character and fantastic personality are increasingly lost.

There are so many people in so many worse situations than us that I feel bad even saying it, but tonight I really feel like shouting “It’s NOT fair”.