December 2017

Anne had been unwell again with cold and flu like symptoms and after a difficult night I decided to let her spend the following day in bed. I went through to check on her on a regular basis. One of the times I went to check on her, she opened her eyes and beamed with that smile of recognition. Despite feeling horrible, she still smiled a greeting of love. She cannot communicate with words anymore, but she can communicate with that special smile.

I broke down in tears. I was inconsolable. Grief is very painful!

I have said before that Anne's deterioration is not like a gradual straight line on a graph but more like a stepped decline, and sadly, after a few good months, another step has been taken.

Up until last month, she would occasionally need help with eating and drinking. She always needed encouragement to drink and sometimes would require assistance to finish what was on her plate (probably about 20% of the time). This month, this has been completely reversed!

Now, Anne needs help with feeding at least 80% of the time. Such a turnaround in such a short space of time - that is the nature of the "step function" decline of the disease.

For about a week, I found this very difficult to bear. I would invariably weep as I fed her and Anne would somehow recognise my discomfort and get watery-eyed. But life has to go on, so I took Anne to church when I was very emotionally fragile, but was so encouraged by what was said on the subject of Joy.....

"Joy is the settled assurance that God is in control of every detail of my life, and the quiet confidence that ultimately everything is going to be alright"

This is what I needed to hear. While everything may not be alright in the near future, ultimately it will. I have that settled assurance and quiet confidence.

While Anne was at the Day Centre, I attended a funeral of a friend who had succumbed to Parkinson's disease. As I sat in the church I couldn't get Anne out of my mind. I realise this may sound a bit grim but what would I want to say about Anne at her funeral, indeed, could I say anything or will someone else have to do it for me? What songs would Anne want at her funeral? It was the first time that I had that experience despite the fact that I am always thinking ahead. I guess the physical surroundings had triggered these thoughts.

As I reflect on the year, it has been another year of decline for Anne - some of these "steps" have been difficult to bear at the time, but somehow I have muddled through and got used to another loss of function, and I remain very grateful for the support we have received from family members, great friends, and of course those from Health and Social Services who care for Anne on a regular basis.

Christmas is almost upon us, and a new year beckons. and I know that there will be further challenges ahead, but with the support of others and having that settled assurance and quiet confidence, I know that I will not be alone.

And to you reading this, thank you for journeying with me this year - you are most welcome to continue with me next year.

best wishes

Gordon

November 2017

As I mentioned in my previous blog, this month contained two periods when Anne would not have me around.

The first period was for a week when I was abroad with a charity that I volunteer with. Anne stayed with one of her sisters and brother-in-law. I deliberately did not make any video calls during that time on the basis that it could unsettle Anne. I am grateful to those who cared for Anne during that week. By all accounts she seemed to cope well.

However, I experienced something that hadn't happened before, something that I knew would happen one day, but something that I did not think I would confront for a while.

On my return, I went to collect Anne who was sitting by a window looking through the pictures of a gardening book. I approached her and tapped gently on the window to get her attention. She looked up and stared vacantly at me - there was no recognition. Even when I went inside to greet her there was no recognition of who I was. Eventually, the fog of recognition cleared.

As we drove home in the familiar surroundings of driver and passenger, she kept looking over at me with that wonderful smile. She clearly knew who I was, but for that short period, the lack of recognition was hard to take, as I was not expecting that to occur for a while.  Another "nail in the coffin" of Alzheimer's.

On returning home, Anne developed a cold. Unlike most people, she continued to smile through the sniffles but I was conscious that it was moving into her chest. Despite her cheeriness, I got a call from the day centre where she attends twice a week to say that Anne wasn't herself - she was very quiet and not eating. So, I went and brought her home, and got her a doctor's appointment. As Alzheimer's progresses the risk of infection increases and her listless state was evidence of this.

However, after an early night, the next day she was more like herself and I dropped her off at a residential care home for a planned couple of nights of respite care. I was so impressed by the level of care shown towards her on our arrival. Her temporary room even had her name on it.

I returned home to an empty house and spent the evening alone. It was the next morning as I awoke that it hit me what life would be like in the future. Not having the usual routine of getting Anne up, taking her to the toilet, preparing breakfast and helping her with her cereal, coupled with being alone, was very strange. I sat in silence eating my breakfast.

At the end of Anne's stay in respite care, she was taken directly to her day care centre. I went to pick up her belongings from the care home. She had coped well although that morning had been very quiet and only reluctantly took her medication. I was a bit concerned, but I needn't have been as she came bounding off the day care minibus on her return home, smiling and laughing. She had clearly had a good day. And thankfully, she recognised me!!

So, the period of respite had been successful although it had provided me with a clear picture of what life would be like in the future - at least I am prepared as best can be, and for that I am truly grateful.

until next month,

aye

Gordon

October 2017

There is no doubt that Anne continues to be going through a good period. Her incontinence remains very infrequent, she is more cooperative when getting her dressed and undressed, has a healthy appetite, and remains very happy.

I did wonder if someone with Alzheimer's could go into remission, but my research shows that this is not the case.

If there was one element of deterioration it would be in her verbal ability. The last few weeks have seen a decline in her speaking. Now, for most of the time, she says nothing, although I can usually determine what her body language means.

We had the pleasure of going on a week's holiday with family, and Anne coped very well with her new surroundings, as well as having two young grandchildren around her. I was constantly moved by the reaction of the children. At 7 and 3.5 years, it was remarkable to observe the compassion they demonstrated towards Anne. Somehow they understood (and accepted) that their Grandma doesn't speak, needs help with eating, wears "nappies", needs help to get out the car, doesn't help with domestic chores, and doesn't demonstrate affection to them. It truly was a joy to watch.

And the good thing about going on holiday with others is that I get to be on holiday!

This month we were invited to a wedding and after much thought I declined the invitation for us both, as I felt that Anne would struggle, but decided that I would go along for the evening reception. This was the first time that I had experienced this situation and I found it difficult. I am normally a confident individual, but that confidence evaporated when I arrived. I didn't know many people and watching couples and groups of people enjoying each others company proved an uneasy situation for me - perhaps a sign of things to come.

And next month could be a challenge. I am abroad for a week with a charity I support and so Anne is going to be staying with her sister and our brother-in-law. I feel confident that I will be fine, but I do wonder how Anne will react when she realises I am not around. This could be further exacerbated by a short trial stay in a local care home to see how she reacts to respite care. While Anne enjoys others company, I am a bit worried that this period of apparent "respite" from the manifestations of Alzheimer's disease may come to an end because of me not being there for her. Time will tell.

Until next month.....

aye

Gordon

September 2017

Right at the outset, I have to say that the last month or so has been a very good one for Anne, and consequently me.

Last month I explained the deterioration in Anne's incontinence, despite being treated for a potential urinary tract infection. Well, I am so pleased to say that her incontinence has significantly improved - not eliminated - but so much better. I am experienced enough to realise that this may only be temporary, but I am so grateful for this period of improvement. Was this a result of medication, or was it Divine intervention? I favour and lean towards the latter!!

As a consequence, my life over the last few weeks has been so much easier, less of a grind, and quite joyful. The best way I can describe it is to use a weather analogy. Living with and loving someone who has Alzheimer's can be like living under a cloud that gets increasingly darker. With the wet summer we have had, it is perhaps easy to imagine how it feels. However, the last few weeks have felt that the clouds have lifted, blue sky can be seen, and the odd ray of sunshine.

How long this phase will last is unknown and that is down to the unpredictability of the progression of the disease, but as I have said, I am so grateful for this window of respite.

I am reminded of the lyrics of a song called Clear Skies Ever Closer by Cherry Ghost which has the following chorus:

Clear skies ever closer
All of our goodbyes we will get over
Oh, the darkness descends down on me again
Through it all, love stood tall

Another upside of the last few weeks was enjoying a holiday with friends. Going "on holiday" with Anne is a misnomer if it is just the two of us, but being with other people makes such a positive difference to me. My radar can be switched off at times, knowing that others are looking after Anne for a few hours, and so I am, once again, grateful.

If there is a downside to the last month it has been the need to help Anne eat. She has a very healthy appetite, but it is becoming increasingly "normal" to help her finish meals. I have noticed that she starts off well feeding herself, but then she appears to give up. When I take over and feed her, she manages to finish her meals with ease. I can't figure out why this is happening, but it is definitely becoming more frequent. While I know that a time will come when Anne cannot feed herself, I am, again, grateful that I can help her to maintain a healthy physical lifestyle.

I have used the word "grateful" a number of times in this blog, and that is no accident,. It accurately describes how I am feeling. I am truly grateful to family, friends and God for allowing me to "have a breather"!!

And continuing the music theme, I am also reminded of a song by Blue Rose Code called "Grateful". You can check it out at this website address:

https://www.youtube.com/watch?v=e2if8VM0HTU

As the song says - "Lord, I am grateful"   (health warning - you may cry watching this - I did)

until next month

aye

Gordon

August 2017

As you get older and look back on your life there are always some regrets. Fortunately, I don't have too many, i.e., things you said or did, or in my case, things you didn't do.

As a young parent, one of the shameful things I did not do was change a nappy! I just couldn't bring myself to do it with any of our 3 boys, and with Anne being a nurse, she just got on with it. Indeed, Anne was an outstanding mother and home maker. If motherhood were an Olympic "sport", Anne would have been a gold medal champion.

I mentioned last month that there had been a particularly difficult week with Anne being unresponsive and incontinent. Sadly this has continued with a significant deterioration in her incontinence. A course of antibiotics for a potential urinary infection did not make any difference and the obvious conclusion is that another Alzheimer's symptom has taken hold.

I find it ironic that one of my regrets in life is being erased as I have to take care of Anne's deterioration. Unlike a toddler who learns to toilet themselves, Anne's condition will only get worse - it's a reversal of life growth.

As I look out into our garden I see a picture of what is happening to Anne. A few year's ago one of our family gave Anne a miniature willow tree as a birthday gift. It was duly planted and flourished until deer spotted it and started to rub their antlers against the delicate trunk of this small tree - we live on the edge of a forest with amazing wildlife, but deer are not welcome in our garden!

At first, there appeared to be no immediate impact to the tree and each year it would bud and the leaves would flourish, but this year the outward signs are not good. The buds came and the tree produced leaves, but within a few weeks the leaves have shrivelled and the tree is clearly dying.

While I don't want to over dramatise things, and Anne is physically fit and healthy, it is clear that her mental / mind health is getting worse which is slowly beginning to impact her physical body functions.

However, despite her incontinence, this last month has been a good one for both of us. Despite her communication skills having almost gone, that precious smile still lights up my days and I am so grateful that she appears content and at peace with what she has to bear. Perhaps more peaceful than me.

Until next month

aye

Gordon

July 2017

It has been a difficult time since my last blog with another step change in Anne's condition. The first week of July was one of the hardest I have had to face. After a number of weeks of calm and enjoyment, Anne became very unresponsive and very incontinent. Getting her to move from one room to another was virtually impossible, and on one occasion I had to physically drag her  - a move that fills me with guilt and regret.

For 3 days she remained like this and during this time I felt lonely and a bit vulnerable. It didn't help that the weather outside was grey and wet. On day 4 Anne went to her day centre and returned buoyant and I thought that perhaps she had turned the corner, but on day 5, things reverted to being unresponsive and incontinent.

That was the day I cracked.

Clearly, there had been a build up of unconscious emotion and I sobbed heavily most of that day. I hadn't experienced anything like it since Anne started to go to day care last year. Looking back, I think it was a combination of stress and grief. That week had unquestionably been stressful, but I am convinced that living and caring for a loved one with Alzheimer's results in an extended period of grief that appears to have no end. I know it will end one day, but for now, there is no light at the end of the tunnel.

Since that dark week, things have got much better, although her incontinence has definitely deteriorated, despite being treated for a potential urinary tract infection.

On a slightly lighter note, while visiting family in Edinburgh we went to church where communion was being given. Unlike our own church where we remain in our seats and the bread and wine is passed from one to another, at this church you had to leave your seat and go and receive the bread and wine from a member of the ministry team. I knew that Anne would be confused and so I took the decision to remain seated. However, a family member, on returning from taking communion, asked if I wanted to go, and she would sit with Anne. So I did, but I felt uneasy and somewhat guilty that I had denied Anne the privilege of taking communion, although I could not sense any reaction from her.

Two weeks later, communion was being offered at our own church. As soon as Anne took the bread and wine, she nudged me with a big smile on her face as if to say, "I didn't miss out this time". The joy on her face was very moving. Had I made a mistake two weeks earlier?

Finally, we had Anne's two sisters visiting us for a few days, together with our brother-in-law. It was great to see that Anne still had that sibling recognition. While putting a name to her sisters has been almost lost, I am grateful that she has not lost knowing the faces of her loving sisters.

As I write this, today is the start of another milestone in Anne's progression with Alzheimer's, as she has gone from one to two days a week at day care. I cannot thank Social Services enough in their care for both of us. Their professionalism and compassion are outstanding - something you never hear or read in the media.

Until next month....

aye

Gordon

June 2017

A few weeks ago I had a visit from my best man whom I had not seen in over 20 years. We chatted and laughed as we told each other stories from our past. Both of us had been big pranksters in our late teens and early twenties, so we had much to remember.

A common phrase that afternoon was, "Do you remember....", and it was so good to reminisce as another common phrase was "Ah, yes I remember that."

After he left, I was forcibly struck by the contrasting experience I had just had, and the experience of Anne. Not only has she no short term memory, but what many don't realise about Alzheimer's is that eventually there is no long term memory either. Anne is at that stage.

She can very occasionally remember something but it will only be in the recent past. As we get older, we have a rich repository of memories, some bad and many good ones and it is hard to accept that Anne's memory has been effectively wiped away.

Despite the memory loss there is a new positive experience for Anne, and this happens when she sees her reflection in a mirror.

I am absolutely convinced that she does not recognise who she sees in the mirror, but her face lights up, smiling as she attempts to communicate with the "other" person. She will get quite animated and point and it appears to me that she gets extremely joyful when the person she sees does exactly the same as her. It is like watching a young child experiencing a mirror for the first time.

Most of us don't like what we see in the mirror (or are at least indifferent), so if there any upsides to Alzheimer's this is a rare one.

Let me conclude this month's blog with a very rare event that happened yesterday. Anne was in our car with me, and occasionally I will see her looking over at me and I will return her gaze and ask her if she is ok. However, something dramatic happened yesterday.....something that I will remember for a long time, something that I will not need another person to ask me, "Do you remember....".

I sensed Anne looking at me as I was driving, I turned and before I could ask her if she was ok, she smiled and said three words I have not heard in at least 3 years......I LOVE YOU!

I don't know if you have driven a car at 70mph with your eyes welling up, but I don't recommend it.

At times, living with Alzheimer's can be an overwhelmingly negative experience, but just when you least expect it, a miracle of wonder and joy comes your way.

until next month

aye
Gordon

May 2017


Another relatively good month for Anne. While her anxiety has not diminished she remains content and apparently happy for which I am so grateful.

Her physical fitness never fails to surprise me - in the space of 4 days she walked around 30 miles. Last Saturday we walked 10 miles with our local Ramblers Group, on the Monday while staying with friends in Edinburgh, we walked 9 miles through the city, and on the Tuesday we climbed Allermuir Hill in the Pentlands clocking up another 9 miles. This latter adventure involved some steep climbing and I was more anxious for Anne than she was herself.

I find the stark contrast between body and mental health both puzzling and disturbing.

I mentioned in a previous blog that it was during 2015 that I realised that our marriage relationship had changed into a carer and patient relationship. There are no more moments of intimacy which I truly miss - a kiss, a cuddle, or a touch already seem distant memories.

However, over the last month or so I have noticed two things that have made me realise that there is still a glimmer of affection towards me. The first is that occasionally when we are out walking Anne will put her hand in mine at her initiation. The intriguing significance of this is that in previous years I didn't really like my hand being held while out walking - I like to let my arms swing - so when Anne would take my hand I would let it go after a few moments. Now, you can guess what my reaction is - hold onto Anne's hand for as long as she wants - such is my desire for these precious intimate moments.

The second thing is that Anne has always enjoyed her food. Indeed, she was an outstanding cook who passed on her culinary skills to our three boys. However, I have noticed that when there are many different things on her plate, e.g., a salad, she struggles to assimilate what is there and merely "plays" with her food. So, about a month ago I wondered how she would react if I fed her when it was clear she couldn't cope with the variety of food in front of her. To my joy, Anne reacted very positively and enthusiastically ate what I gave her. While this has not reached a permanent state I do find feeding her treasured moments of intimacy - the closeness of our faces, the smile of satisfaction on her face are very special to me. The more common norms of our intimacy have been replaced by what I would call a carer's intimacy.

This reminds me of observing Crossbills in our garden the other week. I had never seen these birds before and I got my binoculars out to see the male feeding the female. Intimate moments indeed.

I suspect feeding Anne will become the norm, and perhaps the intimacy I feel at present will be diminished but I have learnt to take one day at a time, to enjoy the good days and lean on my Christian faith in the bad ones.

Until next month.

aye
Gordon

April 2017



Following last month's blog, I was contacted by a freelance journalist who subsequently wrote an article for our local paper. The reaction I have had from many people has been one of great encouragement. I was astonished by how much the journalist already knew about me, and I am grateful to him for writing such a positive and sensitive article.

This month has been a relatively good one for Anne, although, she has definitely become more anxious. Even around the house, which you would expect to be a place of familiarity and security, she is becoming more unsure of her surroundings. She will gravitate to our bedroom, and she would spend all day in that room just standing around or folding clothes if I didn't coax her out.

However, there have been some great moments, and very amusing ones too. This month has seen Anne needing help to get dressed. For many months Anne could not undress herself but had always managed to get herself dressed, if I lay out clothes for her. To my amazement, she could always put on her bra. But over the last 6 weeks she has needed help to get dressed - another sign of her continuing deterioration. One morning, despite laying out her clothes, I came into our bedroom to find that she had put on one of my shirts, but the funniest moment was when I found her with a blouse on with her bra, properly fastened, on top. I haven't laughed so much in a long time, as she looked liked Wonder Woman! Sadly, Anne just looked at me perplexed not realising the humour of the moment.

There have also been some very bright moments. We were in the Botanical Gardens at Inverness when Anne pointed to an exotic Bird of Paradise flower. I immediately recognised it from the gardens of a holiday venue we had visited for a number of years, so I asked Anne is she could remember where she had seen that flower and she immediately said one word - Spain. I was encouraged that day  to recognise that there is still a flicker of memory.

Talking about memories, Anne has never been interested in music, but over the last year I can put on some contemporary music and she will start to sing along or move to the music. There must be something in certain melodies that sparks a reaction. The most emotional moments though are when Anne is in church singing hymns and choruses, particularly well known songs that she clearly remembers from her younger days. She will be singing her heart out and then turn around to the people behind her encouraging them to do the same. The first time she did this I have to admit that I was a bit embarrassed - what would people think? I tried to bring her round to face the front but she was having none of it. I quickly realised that I was wrong in trying to get Anne to adhere to social norms. She did this at our recent Easter Service where there were rousing familiar hymns - there were a few watery eyes last Sunday!! Indeed, one person said to me it was one of the most precious moments of worship they had ever witnessed.

These days, where there is a spark of memory either through sight or sound, are like rare jewels - days to be greatly treasured.

We soldier on!!

aye
Gordon

March 2017

March 2017


Many thanks to all who have been in touch since my first blog - it has been very encouraging to be reminded that, in human terms, I am not alone. I say in human terms, because somewhat surprisingly,  my Christian faith has not been shaken as I attempt to care for Anne. I thought I would have doubts about God, but I don't. While I do not have an answer as to why this should have happened to Anne (and me) I can honestly say that I still trust in my heavenly Father.

It was towards the end of 2016 that I took the plunge and contacted Social Services about the possibility of Anne receiving day care. Our GP had recommended this during 2015 but somehow I felt reluctant, as I knew it would be a very significant outward sign of Anne's deterioration. Was I still in denial? I don't think so, but I definitely saw this as another phase in her deterioration.

We often hear the negative side of Social Services in the media, but hopefully this blog will provide a small rebalancing of that perception. Within 3 weeks of making the phone call, Anne started her one day a week visit to the Glen Centre in Aviemore. I cannot praise Social Services high enough!

I remember her first day so well. She was picked up at our home by a carer from the Centre, I bid them farewell, Anne never looked back, I went back into the house and burst into tears. It was like seeing off your first child on the first day of school. How would Anne get on? Would she be ok in the minibus to the Centre? Would she be distressed in a strange environment without me? Would she enjoy the food? When she returned I was astonished by how happy she was. While she couldn't articulate what had happened on her first day, it was clear she had been well looked after and enjoyed her time. Since then her experience of that first day has been repeated every week. Every time she sees the minibus outside our house, she almost runs out the front door. A regular highlight is getting her nails painted!

The last few months have been relatively steady, although I have noticed that Anne is increasingly unresponsive. However, we enjoyed a weeks holiday in Norfolk with Anne's sister and husband. In new environments it can be unsettling for Anne, but with people she is familiar with she coped remarkably well.

However, recently she has become increasingly anxious. Even in what was previously familiar surroundings she is getting more anxious. We go to a fitness class twice a week and getting her into the exercise area is becoming a challenge. Up until now, Anne loved being with people but I wonder if this is the start of her withdrawing from social situations. Time will tell if this is another step change in her deterioration.

I was upset this week when I informed Anne of the arrival of our 8th grandchild. There was very little response when I told her that we had another grandson. What was a joyous occasion was met with a blank stare and I struggled to cope with her lack of reaction. Even showing photos of the baby did not stir a reaction. But this morning, I told Anne that we would be visiting our new grandson and I asked her if she could remember his name. To my amazement, she looked straight at me and said, "Harris", which is the name of our new grandson.

And so I have learnt something today - while there are no visible signs of absorption of information that doesn't mean it is not happening. Despite the very negative experiences of living with Alzheimer's I felt uplifted on hearing just one word - "Harris".

Hopefully, when Anne holds our new grandson we will be greeted with the smile that I fell in love with 40 years ago!

More to follow next month.

February 2017

I have decided to write a monthly blog of my experiences in caring for my wife who has Alzheimers. But first, some background.

My wife Anne was diagnosed with Alzheimers Disease in January 2011. Something that came as a complete surprise to both of us, as Anne was only 55, and to be honest I thought the symptoms were menopausal related.

We had just made the permanent move to our holiday home in Nethy Bridge in April 2010 and to be confronted with this diagnosis was traumatic to say the least. Naturally, our three sons and daughters-in-law shared the trauma with us. Indeed, I remember one of our boys reaction was to ask us when we were returning to Glasgow where we had previously lived.

We made a decision to be completely open with friends and family about our situation, and on reflection that was absolutely the right decision. Why? Well, as the years have passed, and many people have journeyed with us as Anne has deteriorated, we have been so blessed with the care and support that at times has been overwhelming. When you look at the evils of the world and the capability of human beings to inflict suffering on each other, I am constantly reminded of the capacity of human beings to perform acts of great kindness, care and love.

During 2011 we lived "normal" lives doing what we had always done - holidays abroad, walking, visiting family and grandchildren, becoming active in our new community and local church. There were many times during 2011 that I forgot about Anne's diagnosis. Did she really have Alzheimers?

But gradually things began to change, particularly with Anne's ability to communicate. Now, she very rarely will initiate a conversation and my current life as her carer can be very solitary. To be honest, for all practical purposes, I realised that our relationship had changed significantly during 2015. Our marriage relationship had become a relationship of carer and "patient". Up until that point, Anne's deterioration had been slow and gradual.

Then midway through 2015 there was a step change in her deterioration. There was very little communication, she was occasionally incontinent, she started to lose weight, she no longer knew my name, and she would simply sit around doing nothing.

I suppose this was the time I really felt a bit vulnerable and emotional.

Since 2015, my experience has been that this cruel disease can, at times, lull you into a false sense of security. Weeks and months can go by with no real deterioration, then bang - something happens that you have not noticed before - and instead of these early years of gentle deterioration, we have entered a phase where there are these step changes in Anne's condition.

So, that's the background to a life living with a loved one who has Alzheimers.

Next month, I will post a more detailed blog on what has been happening since the start of 2017.

aye

Gordon