September 2020

Tomorrow, 21st September, is World Alzheimer's Day and it has been 15 months since I posted my last blog about Living with Alzheimer's. It is coming up for 10 years since Anne was diagnosed with early onset Alzheimer's and it is now over 2 years since she has been in full-time care.

My previous blog indicated that Anne no longer recognised me most of the time, and I was very grateful for those rare and fleeting moments when I sensed she did.

However, since the Covid-19 pandemic has gripped the world, and the care home going into lockdown in early March of this year, it meant that instead of 3-4 weekly visits, I could only see Anne on a video call. I started out with a weekly call that usually lasted about 10-15 minutes and she would occasionally interact but these calls became shorter and less frequent as Anne didn't even look at the screen. But I persevered, more for my benefit than hers.

Then the easing of lockdown restrictions began, and in July the care home allowed visiting outside in its courtyard and so I "booked" a visit. It was a beautiful, sunny and warm day, ideal for an outside visit. As I arrived, I put on my mask and there was Anne at one end of a very long table. I was ushered to sit at the other end. I started to talk to Anne but, of course, with a mask on and a physical distance that felt much more than 2 metres, I might as well have been talking to myself. I was encouraged to lower my mask in order that Anne could see my face, but that had no effect. I also noticed that she had aged since the last time I had visited her.

From the norm of sitting beside her and holding her hand to this "new normal" was very distressing and I left shortly afterwards with my head between my hands and quietly welling up. I never repeated that experience again.

And so I went back to having short video calls with Anne, the most recent being two  days ago. The call lasted no more than 3 minutes and immediately it was finished it hit me hard as I realised there was literally no relationship anymore. That may sound harsh to some of you reading this, and I am truly sorry if that is the case.

Over the last 10 years, my relationship with Anne has gone from a wonderful marriage (some people even told us - an exemplar marriage) to becoming a carer. Then it was time for Anne to be cared for by the professionals. I remember being told that when that happened I would become a husband again, and in the early days of Anne being in full time care, that was true. But when I realised around 15 months ago that Anne no longer recognised me, being a husband again started to feel like being a widower. 

Now, I feel exactly that. While Anne is physically alive, I feel she has gone. Yes, the circumstances of the pandemic have probably accelerated the arrival of this situation but at the end of the day, grief can be very cruel.

With the increasing likelihood of the tightening of Covid-19 restrictions, I will continue with the video calls, and if and when I can visit Anne up close, I will do that too, but I am sure that the days of being a real husband have gone, as has the Anne I married and had the privilege of having and raising children.  

Anne may have gone, but thankfully, the wonderful and happy memories have not.

Yesterday morning, I was listening to my favourite radio programme called Out of Doors, and because of World Alzheimer's Day, the theme of the programme was about Dementia and the outdoors. During the programme there was an interview with a lady who had gone through the experience of losing her father to dementia. A father, who loved the outdoors and had a beautiful father-daughter relationship. After the interview was finished, one of the presenters said to his co-presenter, "that was a powerful interview". 

That was the trigger - as I lay alone in bed I sobbed and sobbed. The reality of the feelings of the previous day hit home hard as I cried. Anne has gone. 

I eventually got up, had some breakfast and I looked out the window - a new day, a new dawn. As I later walked in the hills on a glorious sunny day I gave thanks to God for bringing Anne and I together, for the most wonderful marriage and family life, for the joys, tears and many, many blessings, and for witnessing on a daily basis the smile of an angel.

June 2019

After almost a year from publishing my last post, I feel it is time to update my blog readers on Living with Alzheimer's . If you are a new reader, you can read my earlier posts to capture the picture of what it is like caring for someone with Alzheimer's.

Anne has been in care since last August and the standard of care has been of the highest standard. I cannot praise Grandview Care Home enough. As well as the challenges of day-to-day care they provide stimulus and entertainment way above the call of duty. Magicians, singers, church services, live animals, pipe bands, creative arts and much more. Indeed, only last week they took Anne on a canal cruise.

Over the last few years some people have told me that they were praying for Anne to be healed. I always welled up when they said that to me, touched by their concern and compassion, but I always struggled to believe that would happen - perhaps my Christian faith is not strong enough. However, as I have reflected over recent months, it is clear in my mind that God is not going to heal Anne, but instead has provided her with exceptional care.

She is so content, always smiling and when a nurse or care assistant interacts with her, or merely passes by, that God-given smile blossoms.

But, over recent weeks it has become more and more evident that Anne no longer recognises me. When I go to visit her 4 or 5 times a week she smiles when I go to greet her, but here eyes are vacant and there is no body language from her like before.

As I have shared this development with family and friends they have all said that it must be so hard. And while that is true, it does not come as a surprise. Knowing something is going to happen does make the pain just a little easier.

And so another new chapter begins for me. I remain hugely supported by my family and friends and for that alone, I am truly grateful. And as I write this, I am very optimistic and full of hope about what God may have in store for me.

Until next time

aye

Gordon

August 2018

This month has perhaps been the most significant one in Anne's progression with Alzheimers. One hour after I published last month's blog I got a message to say that there was a vacancy in a care home 4 miles away. A few days later, I took Anne to let her see it, and while she may not have known what it was, she was smiling and showing no signs of distress. Indeed, she displayed that contentedness that only she can.

After a meeting with the care home manager, I decided that this was the place for Anne, despite the fact that she would be the youngest resident by some margin. And so on the 13th August we took Anne to her new home. I say "we" because I was wonderfully supported by two of our sons.

That first week, I visited Anne a few times and she warmly greeted me and was trying to show me off to the other residents. I began to be more comfortable in my decision, but when I was home alone I found myself looking over to where Anne usually sat and realising she wasn't there. It really had not sunk in that she wasn't coming back - it felt as if she was in temporary respite care.

At the end of the week a member of staff told me a wonderful story about how a care assistant and Anne had laughed so much that they both cried - while Anne was on the toilet.  The mind boggles!!
That feedback helped to significantly reduce any feelings of guilt I had. I was also told that Anne loved to sing along to music, which came as no surprise, and that she was eating well.

The support I have had from family and friends has been quite overwhelming and one particular incident has moved me deeply. During that first week, I took Anne for a routine visit to the dental hygienist. While Anne was being attended to, I sat in reception when our dentist came out, sat beside me, asked how I was, and began to cry as she had heard that Anne was now in the care home. I will never forget that moment of how that lady, in her own working space, cast aside her professional guise and cried for Anne.

It was into the second week that it hit me, and while I knew to expect it, it didn't make it any easier.

One morning sitting having breakfast alone in the house, I started to pray for Anne, and as I did, the floodgates opened wide, and the tears flowed. I sobbed and sobbed as the enormity of the situation crushed me - Anne is not coming home. I remember reading somewhere that it is not the person with Alzheimers who suffers, it is the one left behind. I now understand what they meant - it is another stage in the grieving process.

But life has to go on, and I am increasingly encouraged each time I visit Anne as I am greeted by that smile of recognition. I am also encouraged by the care she is receiving and the activities that the care home provides to stimulate her and her fellow residents.

I mentioned earlier, that I have been overwhelmed by the support I have received, both in person and in messages. There are two I want to mention. Firstly, our eldest grandson has decided to hold a coffee morning in early October to raise funds for Alzheimers and the care home where Anne now resides. How can a boy of 7 years of age display such compassion and love?

And secondly, I have mentioned in previous blogs that on 2nd September the Alzheimer Scotland Memory Walk is taking place in Inverness. Well, together with our son and brother-in-law, another of our grandson's is joining us. At the tender age of 5, he wants to walk with us and raise funds for Alzheimers. I am so blessed.

To those who have already donated to my fundraising page for this Memory Walk, thank you so much - it means a lot to me. Anne will not be joining us as I now realise that this could be a step too far for her. However, if you would like to support Alzheimers Scotland as we walk for Anne, you can still make a donation at  https://www.justgiving.com/fundraising/gordon-h-brown

Given what has happened this month, I am considering reducing the frequency of this blog. And so, to my many readers - thank you for your messages of support, and sharing the journey with me - it's not over, but the burden is now getting lighter. A few people have suggested I publish these blogs in a short booklet form and I will give that some thought in the coming weeks and months.

In the meantime, thank you all again for your amazing support and compassion.

until next time

aye

Gordon

July 2018

This has been a pivotal month for us as we live with Alzheimer's, but more of that in a moment.

Let me start with something that was very strange. Most mornings at breakfast I have to feed Anne with a bowl of cereal, although sometimes she will start feeding herself but get only so far, but most of the time I have to feed her all of the contents. and with encouragement she can drink a cup of coffee herself. 

However, one morning Anne consumed a whole bowl of cereal without any prompting or assistance - where did that come from!! Sadly, that was a one-off - yet another surprise of living with Alzheimer's.

During this month I observed another measure of Anne's continued deterioration. At this time of year when the days are long and the nights short we can get visits from pine marten. This is a beautiful animal that are usually nocturnal but because of the extended daylight can be seen more easily. In the past when we have had visits  from these animals, Anne has got very excited and with her limited vocabulary would shout "look, look!!".

Well when pine marten have come into our garden over recent weeks, Anne has been totally indifferent and showing no interest. Indeed, one came right up to our conservatory door, looking in inquisitively. Anne was no more than a metre away and there was no reaction. A sad reflection of her deterioration.

However, I mentioned at the beginning that this month has been a pivotal one for us. At the request of Social Services I had a review with them about Anne. The outcome of that meeting was that I have taken the decision to put Anne into residential care. In my previous blog I wrote about having extreme back pain one day and as that day progressed Anne was very incontinent and having to deal with that while suffering extreme pain was very difficult. So much so, that at one point I broke down in floods of tears.

It was perhaps the most difficult day I have experienced in this journey. Fortunately my back recovered within a few days, but when I was meeting with Social Services it became very obvious that we should start the process for the next chapter for Anne. I cannot thank our social worker enough - her understanding and compassion was outstanding. Indeed her professional efficiency was second to none. Within 3 days everything was approved, and now we wait for a vacancy to happen in one of two local care homes. 

While not an easy decision to put a loved one into permanent care it is not a surprise. I have always known this time was coming and I am convinced it is time to let go. It has been almost 8 years since Anne was diagnosed and while the first couple of years were easy, the last 4 years in particular have been hard caring for Anne.

Since making the decision, I have been clinging onto something our social worker said to me during our discussion - "Gordon" she said, "when Anne goes into care you will find that you will become a husband again."

Wow - how insightful is that!!  The more I have thought about it, the more impact it has had on me, and now we wait. 

In closing, let me mention again that in early September our local Ramblers group have agreed to incorporate the Alzheimer Scotland Memory Walk in Inverness as part of their programme of walks. We will be walking along the Caledonian Canal and I am hoping that Anne will be able to do it. I say that because I have noticed that after a few miles of walking she starts to lean over to one side.

Anyway, if you would like to sponsor us to raise funds for Alzheimer Scotland you can find our fundraising page at https://www.justgiving.com/fundraising/gordon-h-brown

All donations will be gratefully received.

until next month

aye

Gordon

June 2018

A reasonable month for Anne, and so a short blog this month. Anne is now virtually silent, but smiling. She merely sits on a seat, says nothing, and looks down towards the floor.

Anne spent a week in respite care while I had a holiday in the Lake District and she appears to have been settled and eating well, although she had been very incontinent. She was attending her day care centre while in respite care and when I went to pick up her belongings, assuming she was at day care, I discovered she was in the respite care lounge with the other day care patients - they were having a little outing for a bakeathon!!

Anne looked forlorn sitting in the lounge and when I approached her it took a while for her to recognise me. As I left, I was a bit weepy as I reflected that this is what it is going to be like in the not too distant future.

However, I was encouraged when she was returned home, as she came bounding off the minibus with that smile and arms outstretched to greet me. Clearly, the familiar surroundings of home had helped her to recognise me.

Fortunately, her incontinence has now settled and she is back into her routine - well, perhaps it should be more accurately described as our routine.

As I write this blog I am in a lot of pain as I have done something to my back muscles. This is a weak spot and it usually takes a few days to ease. However, this time I do feel a bit vulnerable as Anne has no idea of my predicament despite my "aghs" as I move. I really do hope and pray that nothing seriously happens to me while caring for Anne - that is my biggest worry and concern.

Finally, in early September our local Ramblers group have agreed to incorporate the Alzheimer Scotland Memory Walk in Inverness as part of their programme of walks. We will be walking along the Caledonian Canal and I am hoping that Anne will be able to do it. I say that because I have noticed that after a few miles of walking she starts to lean over to one side.

Anyway, if you would like to sponsor us to raise funds for Alzheimer Scotland you can find our fundraising page at https://www.justgiving.com/fundraising/gordon-h-brown

All donations will be gratefully received.

Until next month,

aye

Gordon

May 2018

This month has confirmed a step change in Anne that I thought was occurring towards the end of April. She is now virtually speechless. Yes, she will occasionally say one word, but these incidents are getting very rare.

She also needs much more assistance with eating, although I am pleased that her appetite has not diminished, and she now requires to be led through the house to get from room to room.

At the beginning of the month we went on a Ramblers walk with our local group. We climbed to the Fyrish monument in Easter Ross and Anne made it to the top with ease. However, instead of returning on the same path it was decided we would take a different route back to the start. As we descended, the path got narrower and we encountered some fallen trees which we could easily walk around. But we soon encountered more trees blocking our path which Anne had difficulty getting over. Then we started to find trees across our path that you had to bend down to get under and it was at this point that Anne froze, not understanding what to do.

In previous posts I have talked about angels, and it was very moving for me to watch an angel arrive to help Anne overcome these obstacles. A wonderful lady in the group, who was walking with us for the first time, gently took control of the situation, taking Anne's arms from behind while I took her legs at the front and we eased her underneath the tree. This happened about four or five times, with the group applauding and Anne smiling.  As we left the fallen trees behind, I thanked the lady and said that she seemed to know what she was doing - "I'm an occupational therapist who has specialised in dementia patients" was her response!!  "You are an angel", I said in wonderment.

At the end of this month, my wonderful family offered to look after Anne over a long weekend to give me a break and I had three superb days at our caravan. I felt refreshed, but the solitude of those days made me realise what is coming when Anne will require residential care - the circumstances of which I sense are not too far away.

I want to finish this month's blog with a poem that someone sent to me recently:

Do not ask me to remember.
Don't try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you.
To be with me at all cost.

Do not lose your patience with me.
Do not scold or curse or cry.
I can't help the way I'm acting.
Can't be different 'though I try.

Just remember that I need you.
That the best of me is gone.
Please don't fail to stand beside me.
Love me 'till my life is done.

I no longer know what Anne is thinking but this poem offers a glimpse as well as a challenge to me as I do my best to provide the care she so richly deserves.

until next month,

aye

Gordon

April 2018

This month is ending with some difficulty. We have been away from home for a couple of short breaks and I am unsure whether this has unsettled Anne.

At the beginning of the month we were invited over to Islay with family and while we really enjoyed our trip I did notice two things about Anne. Firstly, she needed more help than normal with eating and secondly, when it came to going up and down stairs there was real fear in her face and she needed to be encouraged and led up and down. Since we don't have any stairs in our house it was clearly a real challenge for her.

We have just returned from visiting friends in Edinburgh and again Anne struggled with stairs, and while she ate well she did require more help than usual with her eating.

The other thing that has happened this month is that she is becoming uncooperative when it comes to standing up from sitting and getting her undressed. I feel guilty that I am having to drag her up from sitting and at bedtime almost forcing her clothes off her. Indeed, I noticed a small bruise in her arm that I have inflicted upon her. My technique of walking away, coming back and trying again used to work, but I have to admit that my patience is now being truly tested.

I do wonder if we are entering another "step down" phase in her deterioration.

While in Islay we went out for a birthday meal with Anne's two sisters and brother-in-law. We went to a hotel and as we were seated at the table I watched a couple about our age come in to the dining room. Immediately, I felt jealous that these days of going away to a hotel for a couple of days are over for us. I watched as the couple engaged in conversation, smiling and laughing and enjoying their meal.

I can only rely on my memory of precious and romantic times we had over many years.

However, these negative aspects of Alzheimer's are offset by the kindness of strangers. As we were tucking into our celebratory dinner the lady in charge of the hotel came over to ask if everything was alright and Anne's sister explained that we were celebrating Anne's birthday. The lady came up to Anne to wish her well and of course there was no response. I explained that Anne had Alzheimer's and immediately the lady took her hand and smiled. She left and returned with a birthday card for Anne. I was deeply moved. But it didn't stop there.

We retired to the lounge for coffee and the lady came over again and took Anne's hand and smiled and demonstrated genuine compassion. She began to well up and withdrew from the table to weep. She returned to apologise (for which there was no need) and took Anne's hand again. She then summoned the young man who had been our waiter and explained that he was a gold medal singer at the Gaelic Mod Festival and asked him if he would sing to Anne. It was a truly moving experience as we sat and listened to this young man sing to Anne.

A few minutes later the lady returned with her staff and a cup cake with a single candle and sang Happy Birthday to Anne.

Spontaneous compassion is a wonder to behold.

Despite the difficulties, I cling on to these moving moments.


until next month

aye

Gordon