Alzheimer’s Gifts

Alzheimer’s Gifts

MLT Xmas Gif_150t

It is the time of the year for giving and receiving gifts. If you have read my book, The Gift of Alzheimer’s, you will know about the gifts my mother, while suffering from Alzheimer’s, gave me and the gifts I gave her.

I imagine most people are too busy now to be reading long, heavy blogs, so this is short but profound.

We can’t say “thank you” too often for the precious gifts we receive from our loved ones. So I am going to remember some of these now.

The gifts I gave my Mother:

            My time

    Companionship

            Compassion

            Love

            Understanding

            Validation

            Appreciation   

The gifts my Mother gave me:

            Love   

            Appreciation

            Companionship

            Joy

            Wisdom

            Insight into Alzheimer’s

            Insight into her Other World

 

My mother’s gifts to us all:

“Love is what it is.”

“The stillness of deep love.”

“I am at peace. I have no worries or fears.”

“We are learning we are immortal.”

“Death is nothing to be afraid of.”

“I love everyone.”

“Love never dies.”

Pat (Mum)

Wishing you many gifts and blessings and looking forward to the next stage of our journey together.

Maggie La Tourelle

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Alzheimer’s – Creating a Caring Society

Blog 10

Alzheimer’s – Creating a Caring Society

This blog focuses on the care aspect of the elderly, including Alzheimer’s sufferers who make up an increasing percentage of this sector.  We are all aware of recent reports of appalling neglect in care homes and hospitals that have been headline news and shocked the nation. How might we build a culture of caring for this vulnerable part of our society that is growing exponentially? How might we create a new generation that cares?

Traditional societies care for their elderly within the framework of family and at home. But in the developed Western World, where we usually do not have the support of the extended family, and family members often live far apart, care is frequently provided by non-family care workers and latterly this is in the environment of a care home. As a result many families have become detached from the intimate experience of caring for their elderly relatives. Further more, when they enter the institutional environment of the care home with its rules and regulations, they don’t feel empowered to say and do what would
otherwise come naturally and become passive visitors.

Both my parents spent time in care homes but I was nevertheless actively involved with them and their care. I chose to make them my top priority when they were in need of support near the end of their lives. This was not easy as my home was in London and they were in Scotland but I managed it and fortunately I was in a position to do this.

Please understand, I am not seeking adulation, it was me who gained so much. But whenever I give talks about my experiences I am struck by the comments I receive. People think that it was a sacrifice, that I was some sort of angel. Well it wasn’t a sacrifice and I am not an angel! Quite the reverse – I got so much out of being actively engaged with my parents. It enriched all our lives and was life-changing for me.

Caring is something that comes naturally in most young children and I am proposing that activities that foster this be integrated into the school curriculum from a young age. A good way to do this would be to include a subject, ‘acts of kindness’ for younger children and ‘being of service’ for older pupils. Every child / pupil would have a record book / journal that would go with them through school and have at least one entry per week. Teachers could have projects that would encourage and support children and pupils in this area. As children got older their activities could extend out into the community. These
activities would not need to be grand but could be small yet meaningful. The aim of this work would be to develop awareness and an attitude of caring in our young people. They would learn the value of helping others and the happiness it brings to both the giver and the recipient. Hopefully they would take this learning out into society at large later in life.

I acknowledge that many carers in the UK come from overseas and would not necessarily have had the kind of programme I am suggesting. However, if in the future family members are empowered by knowing about caring through their own experience, they could make a positive contribution.

I appreciate that my proposal might sound like a utopian idea but I believe it could work. It would take a generation for it to filter through but the number of old people in our society is growing all the time so we should start now.  How else are we going to meet the needs of the growing elderly population? How are we going to change the culture of care?

What do you think?

Looking forward to sharing my Christmas blog with you.

Maggie La Tourelle

The Gift of Alzheimer’s

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Alzheimer’s – The Case for Palliative Care

Alzheimer’s – The Case for Palliative Care 

 Alzheimer’s is a terminal illness and I want to discuss the implications of this. I am putting forward the case that everyone suffering from late-stage Alzheimer’s should be treated appropriately, in the same way that they would be treated if they were suffering from any other kind of terminal illness.

 What is a terminal illness?

“Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease which will eventually end the life of the sufferer.” Wikipedia

 Palliative Care for Alzheimer’s Sufferers

People suffering from terminal illnesses are offered palliative care. The fact that Alzheimer’s will eventually end the life of the sufferer is not in question – it is a terminal illness. So why is everyone who is suffering from late-stage, stages 5-7, or at least end-stage Alzheimer’s, not offered palliative care?

 There are a number of reasons why I think this has been overlooked. Unlike most other terminal illnesses, Alzheimer’s is a long drawn out disease, stretching over many years, on average seven years after diagnosis. Because the decline is slow and gradual there is a general acceptance of it. Another reason I think it has been overlooked is that palliative care, as in the care and treatment of cancer, involves palliative medical care, but in Alzheimer’s this is normally not required. So what kind of palliative care is required?

Palliative care also takes care of the emotional and spiritual needs of the individual and I am making a case for recognising the need for this kind of care for people with Alzheimer’s. But how might this be given when the person has lost their faculty of speech, their inability to recognize their nearest and dearest and their ability to communicate in the ‘normal’ way? I will address this question more fully in another blog.

 Change Perception and Care.

In this blog I want to flag up the need for palliative care for everyone with end-stage Alzheimer’s. Yes it is happening in a few places but it needs to become standard practice, everywhere. One of the prime movers in this field is Joyce Simard. She set up The End-of-Life Namaste Care Programme for people with dementia. This programme provides the particular kind of care a person with dementia needs at the end-of-life and it is administered with compassion and love, usually in care home facilities. It has been implemented in a number of care facilities in the US. Here in the UK a pilot study has just been completed and the principles are being adopted by innovators in the field such as, David Sheard, Dementia Care Matters, and introduced to some care training programmes and care homes.

Anyone can do it

 When my mother had late-stage Alzheimer’s, stages 5-7, although I had never heard of The Namaste Care Programme, I intuitively engaged with her in same kind of ways that are recommended in this programme. So, although The Namaste Care Programme provides useful guidelines, anyone can give informal palliative care, be it a family member or professional carer if they feel compassion and love, have the desire to communicate in a variety of ways and are creative in their approach.

 If you are involved with someone who has late-stage Alzheimer’s, ‘just do it’. Discover how wonderful it is to connect and engage in this special way. Open up a conversation about this approach with the care facility. If they are not already offering this kind of care, talk to them and raise their awareness. Maybe buy the book, read it and give it to them.

 For more information:

The Namaste Care Programme see: http://www.namastecare.com

The Namaste Care Program by Joyce Simard, ISBN 978-1-932529-14-0

Dementia Care Matters: http://www.dementiacarematters.com      

 Looking forward to the next stage of our journey.

 Maggie La Tourelle

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Trusted Companion

 Trusted Companion

Who is going to be with the person, hold their hand, listen and talk with them when they have Alzheimer’s, especially in the later stages? This is where the role of the ‘trusted companion’ comes in. As the title suggests, a prerequisite for this role is trust. This role involves putting ones own thoughts to the side, feeling compassion, and being totally present with the person. Through this and being respectful and authentic, trust is established.

Ideally the trusted companion should know something of the person’s personal history so that they, the companion, can relate to what is being presented. However, when that is not possible, the person with Alzheimer’s still needs a witness who is present and will listen and acknowledge what they are thinking and experiencing. So the trusted companion need not be a relative or friend.

The term ‘trusted companion’ grew out of Validation therapy which was developed by in the mid ‘60s to ‘90s by an American, Naomi Feil. She worked with people with cognitive impairments and dementia and taught the importance of reciprocal communication in which the person is acknowledge, respected, heard and treated with respect. These principles are aligned with the principles of person-centred therapy introduced by American psychologist, Carl Rogers.

 Emotional Clearing

When people have advanced Alzheimer’s, the cognitive structures that have held everything firmly in place through out life, weaken, allowing memories from the unconscious to surface. Carl Jung said, “forgotten or repressed material surfaces in a state of diminished consciousness”. The filters that monitor our thoughts and moderate what we say to the outside world no longer work effectively, so people say what they are actually thinking. This is often disregarded as gobbledygook, but if we really listen we may be able to find out the meaning of what is being said and help the person to process it. This may involve working through and resolving previously unresolved issues. 

I did this with my mother and through this process she was liberated and able to move on. Troublesome memories surfaced on many occasions, seemingly out of the blue, and when they did she and I worked through them together. Every time she felt better for doing this. It is not unlike the last rights when the person can say, without judgement from others, what is on their mind, feel exonerated and gain relief from this. As a result of this continuing emotional clearing my mother left this life with no baggage. A magnificent achievement!

Should everyone have a trusted companion at the end of life? How much better their ending would be if they had.

Looking forward to the next stage of our journey.

Maggie La Tourelle

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Emotional Clearing

Emotional Clearing

In my last blog I focused on the emotional challenges that arise in the earlier stages of Alzheimer’s. But as we know, in Alzheimer’s things don’t remain the same for long – things change.

 As the disease progresses, stage 5 onwards, the emotional challenges are different. The battle is over – people with Alzheimer’s have lost control of their lives and they enter a new phase. Often by this stage they are a resident in a care home. Now, periodically memories of things long forgotten that are buried deep in the unconscious come to the surface. Carl Jung referred to this as, “the personal unconscious in which forgotten or repressed material surfaces in a state of diminished consciousness”. This dissolution process is also known to happen at the end of life generally and it seems Alzheimer’s is a protracted end-of-life experience. It would be easy to ignore and dismiss such troubled thoughts when they arise, and try and protect the person from them. But I believe this is not best way forward and that this situation actually provides an opportunity for deep healing.

 My mother said, “I am a bad person”. She would never have made a self-critical statement like that before she had Alzheimer’s. I could have tried to protect her by brushing it off and moving on quickly, but I wanted to know what she was thinking that had given rise to this statement. She also said, “I always did my best”, showing an awareness about her circumstances. Knowing her personal history I gently opened up the way to talk about difficulties she had experienced in her life. She was eager to do this and welcomed me talking about her life with her. Her eyes were bright and focused and she nodded frequently, affirming what I was saying and contributed from time to time. I acknowledged that at all times she had indeed done the best she could. This process of reviewing the difficulties she had experienced helped to clear the emotions that had surfaced and enabled her to move on. Episodes like this continued to occur from time to time, and each time we addressed them with understanding and cleared them.

 It seems that this later stage of Alzheimer’s creates a window in which emotional clearing and deep healing can happen. It brings about resolution that unburdens the person and enables them to enjoy a greater sense of peace as they approach the end of their life.

 Looking forward to the next stage of our journey.

 Maggie La Tourelle

  

 

  

 

 

 

 

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Emotional Challenges

Emotional Challenges

Where do I start? Anyone who has had contact with someone with Alzheimer’s disease will know about the emotional challenges that confront all those involved. The person’s behaviour can range from difficult to extremely difficult and in some cases results in them being given medication to sedate them in order that they can be safely managed.

Emotions at different stages

All too often people generalise about Alzheimer’s. I want to draw attention to the way emotions differ at different stages of the disease and this particular blog is focusing on emotions in the earlier stages. Alzheimer’s has seven stages and the first few years, stages 1 to 4, are, in many ways, the most difficult to deal with, particularly when it comes to emotions. The person’s brain is increasingly affected and they are forgetting more and more. They are slowly ‘loosing the place’. They are desperately trying to hold on to some degree of normality and independence. In their attempt to do this they try to find ways round the things they can’t do and can give a false impression that they are functioning normally when in fact they are not. This leads to frustration and despair all round.

Disasters and Denials

This happened with my mother. When the geriatric social worker made her routine calls to check how my mother was progressing, my mother would offer her a cup of tea and hold polite conversation, with the cat curled up comfortably on her lap, as if nothing was wrong. However this concealed the true situation. Out of sight of the visitor Mum was not coping and was in complete denial about her problems. She would not go to bed at night at the normal time and would sometimes fall and hurt herself. She would leave the front door wide open all night in all weathers. She kept opening tins of soup and putting the contents into the cat’s dish as the cat food came from a tin. Occasionally she turned on the gas hob and then forgot to light it putting not only to herself in danger, but also everyone in the house. And so on – list is endless.

What should we do?

 People with Alzheimer’s often don’t remember what they have said or done and if we tell them they are indignant and are likely to be in denial. As they don’t know what it is, it is impossible to reason with them. Hard though it may be, there is no point in correcting or criticising them. Distracting their attention to something safe and of interest is the best way. But living with someone who is in this state would try the patience of a saint.

Change on the horizon 

When things have reached the point of utter desperation, and everyone has all but given up, what they may not know is that as the person progresses to the next stage, stage 5 and beyond, it will change and become easier emotionally.

Looking forward to the next stage of our journey.

Maggie La Tourelle

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Core Conditions

What are the Alzheimers Core Conditions?

 I realised that, in order for Mum to have the best experience possible at this time, certain core conditions needed to be satisfied.

 Being her Companion

 Mum is in the care home now and to my surprise she is settled and fitting in well to her new environment. My relationship with her has changed too. Instead of me tearing my hair out trying to reason with her when she no longer understands reason, as I did in the past, Mum and I are finding a new way of being together. I have become her companion and it is lovely.

 It was only when Mum was being cared for in the care home, she and I were able to relate to each other in a more reasonable way. So don’t feel you have let your loved one down by deciding on this path of care.

 Well-being

 It goes without saying that Mum, and everyone at this stage, needs to have a sense of wellbeing, and I want her to experience this in body, mind and spirit. The staff love Mum and she knows this and reciprocates their love. They are also very efficient and competent. The home is warm and comfortable. Being right next door I can pop in frequently and we talk together. On a nice day I take her out for a walk along the promenade and bring her round to the garden of our house to have tea with us. All these things are contributing to her sense of wellbeing, something she hasn’t experienced for years, if ever before.

A Crisis

 I am asleep in my London flat when I am suddenly awakened by the sound of my phone ringing. It is the night sister at the care home. She tells me that they have found Mum deeply unconscious and can’t get any response from her. They are waiting for a doctor to arrive and will phone me as soon as they have any news. Naturally I am deeply shocked and, fearing the worst, start to pack my bags in preparation for catching the first flight in the morning. An hour later my phone rings again, and with my heart beating loudly, the visiting doctor tells me that Mum has come round and, much to everyone’s amazement, seems none the worse of her near to death experience. She explained that Mum had probably suffered a transient ischaemic attack (TIA), a mini-stroke, common in people of her age, and that more could follow.

Compassion

This near to death experience that Mum had has been a wake up call for me and alerted me to the need to be more attentive. As the months pass Mum is becoming more and more frail and as I witness this, feelings of compassion arise in me. This is a new feeling as so much of our lives together had been challenging. But I yield to this softening towards her and start to go with the flow.

What are you seeing? What are you feeling? If you stop and feel you too might feel the kind of compassion I felt.

 Love

 Mum notices the change in me and she in turn becomes more loving towards me, saying things she has never said before. Soon a beautiful symbiotic relationship develops between us that is deeply healing and nourishing and continues.

 People with Alzheimer’s naturally want to love and be loved, as do we all. Alzheimer’s offers us a wonderful opportunity to experience and share this.

Looking forward to the next development.

Maggie La Tourelle

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To know or not to know?

Alzheimer’s – To know or not to Know?

After the diagnosis, what happens next? I was caring from a distance and my experience was that I was so busy dealing with the new situations that were constantly arising I had no time to find out some of the facts which admittedly were less accessible in 2000 than they are now.

However I think the question of having an awareness of the facts is a more complex issue.

  • The reality is that spouses are often elderly themselves and barely coping with the day-to-day problems that are arising. Their children are often living at a distance with busy lives themselves and have little time to do more than deal with the immediate challenges.
  •  Information availability: Now all the information is available on-line but one sometimes has to search for it.
  •  Desire to know: Many people faced with the depressing prospect of this illness may not want to know at this early stage, preferring to let things unfold.

 I think it may be a combination of these factors that may keep people in the dark.

Knowing what I know now I think it is better to know the big picture at the beginning and had I done so many of the fears I had would have been allayed. For example I didn’t know that there were seven stages that defined Alzheimer’s, what they were, what to look out for and where my mother was on this continuum. I didn’t know how long each stage was likely to last. As a consequence I felt I was always one step behind, desperately trying to catch up and fearing what was round the corner. Although information is freely available many people still find themselves in the position I was in.

  Is it fear for knowing what lies ahead?

 Maggie La Tourelle

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The BIG Move

The Dreaded Question

Should we put Mum into a care home?

Despite good care in the community and some additional private care at home, after a couple of years things with Mum were becoming unmanageable. The crunch came when on more than one occasion I found the gas hob turned on and not lit. Dad, whose sense of smell was not good, was just about to light it only stopped in the nick of time by me. Yes, we could have converted to all electric but there were other challenges, many of them, and it was clear Mum needed constant supervision and round the clock care. Had she been compliant, arranging this care at home might have worked but, like many people at this stage, she was mobile and still had a mind of her own, and a strong one.  Dad, who was ninety-one, was at his wits end and I was stressed and exhausted with all the emergencies and travelling. I was on my own. What was I to do?

I discussed my many concerns about Mum with the authorities and each time they visited her they asked her if she wanted to go into a care home. Not surprisingly each time she said, “No” and that was that. I couldn’t believe it. Fortunately there was a private care home next door to our house and, in desperation, I booked Mum in to it for a few days respite care and requested that they carry out a full assessment. Within 24 hours the matron called me and reported that there was no possibility of Mum returning home. She was deeply shocked at Mum’s state. Mum never came home. Overnight she had become a resident in a care home where she was to remain for the rest of her life. I was both relieved and devastated. What had I done?

What I have just described raises some serious questions. I think the authorities perceived me as being a capable, which I am. But my mother was a danger to herself and others so why did they not listen to what I was telling them and respond appropriately? Their refusal to act could have cost lives. The authority had a responsibility to fund a proportion of the care in the care home, so was this really a funding issue? How many others find themselves in a position like this?

Planning the BIG Move

Reflecting on this big move, it shouldn’t have been ‘an emergency’, I should have planned it. We were extremely fortunate that our house was next door to an excellent, privately owned care home. Over the years we had become good neighbours and when this ‘emergency’ arose they did everything they could to accommodate our needs at very short notice. It is unlikely you will find yourself in such a fortunate position so what should you do?

There is a shortage of excellent care homes for people with dementia and the few that exist usually have long waiting lists. This takes me back to the point I raised in my previous blog about being aware of the big picture and planning ahead. I strongly recommend that long before the need arises, you do your research, identify a couple of care homes that you like, and put your loved one’s name on the waiting list. If a place comes up before it is needed that you can defer and of course, if you decide on a different path of care, you can cancel it. Ideally you and your loved one would make some visits the care home before he or she becomes a resident, in order to become familiar with the place and people. You might arrange a few days respite care in the home or go there for tea a few times.

Looking forward to the next stage on our journey.

Maggie La Tourelle

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Diagnosis

The Alzheimer’s Diagnosis & Information

To know or not to know, that is the question.

 When I learned in 2000 that Mum had been diagnosed as having Alzheimer’s, or probable Alzheimer’s, I remember I was shocked and, although I knew little about the disease, I was aware it was bad news. I hadn’t encountered Alzheimer’s before and it was little talked about back then. It is hard to comprehend this now as it is in the news nearly every day and more and more people are being affected by it and are aware of its devastating effects.  

 Although Alzheimer’s is talked about now, in my experience many of the attitudes surrounding it have not changed. I didn’t realise that once this diagnosis had been given it was the start of a long and complex journey with many stages. Should I have known this? Do others know what lies ahead? When I give talks about, The Gift of Alzheimer’s, I am surprised at how many people don’t know. The information is available. Why is there such ignorance about the process?

 Distant Carer

 Like many family members nowadays I was not living near my parents. I was living in London and my parents were in Scotland. Dad was in his nineties and was not able to cope with the difficulties that were arising daily with my mother. My sister, who had been living locally, had died the year before. So the responsibility to deal with everything fell upon me.

 I made a conscious decision to maintain my life in London, but to make my parents my top priority and organised my life accordingly. I soon discovered that caring at a distance was not easy and my visits to Scotland to deal with the deteriorating situation became more and more frequent. No sooner was I back in London, having set up what I thought were adequate arrangements, than new problems arose that required me to go back up again. It was like a never-ending game of catch-up. I was so busy trying to manage my ‘double life’ I didn’t have time stop to find out more about Alzheimer’s. Is this the same for you? I realise now it would have been really helpful if I had had some idea of the bigger picture.

 Information – The BIG Picture

 Do you want to know the BIG picture? Do you want to know it now? Do you have the resources to find out? If you are an elderly carer you may not be IT literate so may not have access to on-line information. If you are a son or daughter you may, like me, be so busy to have time to stop and find out. Or, like friends of mine, finding it too painful witnessing a parent suffering from Alzheimer’s, you may choose not to know, preferring to let things unfold in their own time.

 It takes a brave soul to face the realities of Alzheimer’s, but having this information about the big picture I believe is reassuring and helpful in the long run. It will give you some idea of what to expect so you will not be taken unaware. It will also enable you to plan ahead and feel more in control of the ever-changing situation.

There are seven stages in Alzheimer’s and each stage is defined by a set of symptoms and behaviours. Of course this varies from person to person but knowing these stages can give you a rough idea of the stage your loved one is at and what you can expect to follow. It also gives approximate time frames that can relieve the kind of distress that I experienced when Mum was talking about dying in the next day or so, and I believed her, when in reality she was likely to live much longer.

 If you want to know more about the stages and timeframes go to:

 http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp?gclid=CJCkkMLlurcCFQTMtAod6hUAzg

Looking forward to the next stage of our journey together.

 Maggie La Tourelle

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