Real or no real

As previously mentioned as my Mums alzheimers progresses as does her grasp of what is currently happening in her immediate surroundings, what has happened in the past and how the two realities interconnect. She struggles to comprehend things she is watching on television and this is becoming an increasing cause for concern e.g.

Mum (phoning me): “You need to come, there is a tiger in my room'”

Me: “I don’t think that’s very likely”

Mum: “Can you hear it growling? It’s very fierce”

On coming into her flat we discover ‘The Life of Pi” is on the television. I explain the tiger is not real, it is on the television. It cannot bother her. I change the channel to reassure her.

Mum: “Where has it gone?”

Me: “It’s not there, I have changed over the channel”

Mum: “Maybe it is under my bed. Can you check? Be careful it might be angry”

After checking under the bed, in the wardrobe and in her bathroom, she is appeased. The tiger has gone…finally.

Last night she was watching a period drama set in a gothic setting and phoned to tell me there was “Spooky in my room.” When we came in and reassured her the “spooky” was on her television and not with her, she was unconvinced and unnerved and maintained it was there.

Earlier she was watching a programme about Usain Bolt and told me she was listening to “him, that man in our family talking.” I explained he is a famous Jamaican sprinter and in no way related to us, but she found this hard to accept.

Her memory seems to be failing her even on the very familiar. She asked me yesterday what was through her living room door. I had to take photos of the rooms beyond and talk her through each one, but they were received with the unfamiliarity and uncertainty of someone who had never visited them before. I cannot imagine how strange those feelings of not belonging in your own home must feel and struggle to reassure her when nothing seems to allay her confusion.

Times they are a changing…

As I have already mentioned the concept of time is one that is increasingly absent in the world of those with dementia, and is one of the hardest things for us as carers to understand.  My Mum struggles with this on a daily basis with events that happened years ago feeling like the present, and things that are current having a confusing unreality about them. I cannot imagine how scary this is and find it incredibly hard to empathise as time is a concept that those without dementia take for granted.

Recent examples of time related confusion from my Mum include:

“What job can I do in this war? I need to help”

(On being told it is 2016) “It can’t be, I can’t be that old!

(On seeing her sister & brother in law) “Are they real?”

“Your Mother was a lovely woman, you do look like her.” (Seeing herself as my grandmother)

“Do I live here? Is this my home?” (After living here 7 years)

(After being in 5 minutes) “Why am I not going out today?”

“What time do you finish work?’ (To her Son in Law assuming he is employed to help her as staff )

She frequently say that things feel “wrong” and she has an unease that all is not well. It is hardly surprising given that she frequently cannot remember where she lives, who she is, who other people are to her, and has no sense of time. Trying to reassure her sometimes feels futile, and if I’m brutally honest, boringly repetitive as it needs to happen so frequently, but if one imagines the terror of having no sense of self, the necessity is ever present and a real challenge as a carer.

 

A Carers lot…

I am acutely aware of the lack of posts of late. Things haven’t been easy with the sudden death of a family member and the unrelenting challenges of juggling day to daily life and caring. I’m often asked by those embarking on this journey with their loved ones what it’s like looking after someone with dementia. In all honesty it is one of the hardest things I have ever done, and in one of my darker moments after a particularly difficult day with my Mum and my Aunt, I tried to sum up why…

*The endless treadmill of domestic drudgery

*Dodging the punches, physical and emotional

*Closing your ears to the profanities and angry tirades of blame

*The feeling of sadness when you do something that makes them happy, that is forgotten in minutes

*Biting your tongue when you are constantly told you are never good enough, coupled with the guilt when exhaustion overtakes and you snap back

*The gut wrenching pain of hearing no warmth or empathy from a person who once unconditionally cared for you

*Trying to explain to someone that they need help, when they forget why you do, what you do and think all your efforts are pointless

*The constant dilemma of how to please everyone, and the constant feeling of failure when you realise you can’t.

*The unbearable pain of knowing the only way life could be “easier” is by losing the loved one

*The enormity and exhaustion of being totally responsible for another adults safety and wellbeing

*The frustration that comes from the massive restrictions caring puts on us as a family followed by guilt for feeling that way

*Coping daily with depressive emotional fallout…
“you’re not going to send me away, are you?”
“We live too long,”
“I’m no use to anyone,”

and finally and hardest of all, desperately missing the person you have lost, while catching daily glimpses of who they were to remind you.

I am aware this may all sound very negative but the aim of this blog was to be honest and frank. Obviously I love them both my Mum and Auntie dearly and am grateful to have them with us into their eighties, but sugar coating the world of dementia is not what this is about. I know for us caring for them both was the right path for us to take, but also hope by sharing our experiences it will help others faced with our situation.

The Season of Goodwill

Christmas is an enormously difficult time for both the carer and their loved one with dementia. The demands of delivering what is expected from the season, coupled with the demands of caring is challenging. The disruption to routines caused by bank holiday closures of day centres make for added confusion.

However the hardest thing to deal with for us is always the ghost of the Christmases past, an annual reminder of what you had and lost. The family traditions that we enjoyed as a family with my Mum at the helm are a distant memory. Thoughtfully chosen presents, fantastic baking, organising silly games… Mum loved Christmas and was always central to ensuring everyone had a good time. This year her confusion over dates has meant that for the past few months she has been convinced she had missed Christmas and somehow we had celebrated it without her; making her feel wrongly excluded and us sad that she could even imagine this was a possibility.

Cruelly Mums memory also plays tricks on her regarding the year. On Christmas Day morning she pressed her panic button, angry and resentful that she hadn’t been woken “to be getting on with Christmas” It was 6.45am and we were still in bed. Her mind had taken her back over thirty years ago, to a time when she would have been preparing the turkey, and watching me open my presents from Santa. She was indignant she had been excluded even though these things weren’t happening and was extremely difficult to convince otherwise.

On long days when Mum doesn’t have her day centres her sense of time slips further. Napping in her armchair seems to exacerbate the problem and she frequently wakes up angry that no one has been in to see her all day. Sleep seems to erase her short term memory and she has no recollection of shared chats, meals etc and is then resentful that they don’t happen. The constant challenging WHY makes us feel feel failures both as carers and as family who love her e.g.

“Why doesn’t anyone come to see me?” (we do)

“Why did you call me late for tea? Don’t you want me through?” (we didn’t)

” Why don’t you love me anymore?” (we do)

New memories have been made, new traditions established with our own children, but the challenge of making Christmas enjoyable for all the family hasn’t been easy.

Remembering, yet so easy to forget…

This week I found a pile of paperwork, tucked away in a drawer, that I had missed when I originally sorted out her belongings some 12 years ago. Some of it was obsolete: old insurance policies, council tax bills etc, but then I became acutely aware of the little reminders hidden amongst it of the person my Auntie used to be…

A letter to Tony Blair, outlining the case for euthanasia to be legalised, in light of my Uncles suicide following a terminal cancer diagnoses.

Notes on the back of envelopes of bills: “Paid 12/3/99 by cash, receipt awaited”

Copies of two old wills, in which she had made detailed provision to leave all her money to everyone other than my father her next of kin at the time, following a disagreement, and then reversed the decision once they had made up later that year.

Photos with names, dates and descriptions. Incredibly useful as a record of the past especially with the source of the rememberings gone.

So good to remember the person someone was before dementia but sadly so easy to forget. Maybe because remembering makes dealing with the disease and caring for the person almost too painful to bear so forgetting is a way of coping rather than dwelling on who you have lost.

 

 

 

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.