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

March 2018

Another good month for Anne and myself. She absolutely adores going to her day centre and comes bounding off the minibus with a huge smile on her face.

However, the main highlight of this month was celebrating our 40th Wedding Anniversary. I wanted to let it slip by quietly because the last few years have been tough from a marriage perspective, but I was persuaded by my sons that the occasion should be marked. And I am so glad they did!!

There is a saying that says, "you can choose your friends, but not your family" but if I could choose my family I would think that it would be out of reach because I can truly and humbly say that it is the most wonderful family I could ever have wished for. There are no big egos vying for attention but everyone is supportive and compassionate towards one another. I am so grateful and blessed.

So, we had a weekend of celebration starting with a wonderful meal in a Spanish restaurant in Glasgow with its own private function room. We ate like Kings, and the conversation flowed. Anne did so well eating an enormous amount of food and clearly enjoying having her family around her.

Then following the dedication of our youngest grandchild we had an extended family party. If you want to see how to do a party for 15 adults and 13 children you should join our family. Again, we ate like Kings and Anne & I were presented with a huge anniversary cake.

At limes, "living with Alzheimers" can by lonely and a grind, but the joy of being around a loving family more than outweighs these difficult days.

I have also been moved by the kindness and thoughtfulness of others. Today, Anne and I attended our fitness class. On our arrival we were presented with flowers and a card - we only see these beautiful people at the fitness class, yet here is a group of people reaching out to us.

As I write, I am looking at a window sill full of cards. There is one in particular that I struggle to read aloud to Anne because someone had written the following:

"Thank you for being such inspirational role models on how to do marriage. Over 40 years of extreme happiness and extreme heartache but through it all has been extreme love."

I am overwhelmed with the support of others!

In closing this month's blog, I want to share another memorable moment. One Sunday at our church this month communion was taking place and I have mentioned Anne's reaction to communion in previous blogs. This time, I had to take the bread and wine and place them in her mouth, which on its own was deeply moving for me. However, after Anne had taken the elements the pianist and violinist started to quietly play and as soon as they did, Anne started to quietly hum along while gently waving a hand. The thing that struck me was that she was not overly animated as she can be when music is being played, but somehow she knew the reverence of the occasion. That was the trigger for my tear ducts to open.


until next month,

aye

Gordon

February 2018

This has been a quiet month for Anne, with no major change in her condition. She still needs help with feeding and there have been a few incontinence disasters, but that is par for the course.

The significant thing that has happened is that she now attends her day care centre three days a week. She loves being picked up and it is clear that she receives great care and stimulus. She came home one day recently swinging her arm as if she had been bowling, which she had - carpet bowls!!

When we lived in France, or taking a holiday in France or Spain, Anne loved playing pétanque. She was good at it too!! I am sure that playing carpet bowls at the day care centre has brought back some form of memory for her. Indeed, if I suggest to her that she had been playing carpet bowls, she would get very animated saying, "Yes, Yes" while swinging her right arm. It was like asking a pet dog to do a trick, but the difference was that the joy that came over her face was wonderful to watch.

Talking about memories, I have noticed her regularly looking at photographs of our grandchildren we have on our lounge wall. Sadly, she cannot remember any names now, but there is an obvious recognition there - how long before this goes is difficult to predict, and it will be sad when it comes, but I have learnt to live in the moment and it brings me great pleasure to see her looking up at the photographs.

There is  another thing I have noticed this month. We still attend a fitness class twice a week at our local sports centre. It is circuit training for seniors and I am determined to keep Anne going to this for as long as possible. However, she very rarely can perform the exercises now as she no longer understands what is required. There are a few exercises like twisters, squats and bicep curls that still have a remnant of recognition, but she no longer wants to jog and when it comes to many of the other exercises she will just stand and watch. But, and this is an amazing but, she can stand on one leg without losing her balance. which is more than can be said of myself!!

I finish this month's blog with a wee bit of a tear-jerker. Last Wednesday was Valentine's Day, and over recent years I have never bothered to get Anne a card or a gift as she would have no clue what I was trying to express. Well, as Anne stepped of the care centre bus on 14th February the carer passed me her bag (which contains spare knickers and pads) and said, "There's something in the bag for you from Anne". When I looked inside there was a hand made Valentine's card and 4 hand made chocolates !!

What can I say?  Grateful, humbled, welling up, surprised, smiling, feeling loved.

until next month,

aye

Gordon

January 2018

No tears this month!!

I am writing this blog from 30000 feet on my return from a week's holiday in Spain. I was invited out by two special friends whom Anne and I met in Spain a few years ago. Anne has been staying with one of her sisters.

However, the arrangement for Anne's respite care was not without its stresses and strains. At 1pm, a few days before my scheduled departure to Spain,  I got a call from the care home, where Anne was scheduled to stay, to inform me that they had a flu outbreak and Anne would not be allowed to come.  I was to contact social services to see if there was any other alternatives. 

At that point my world fell apart. The holiday that I had been so looking forward to was slipping away from me.

To be fair, social services got to work on the problem, but you can imagine that the options would be very limited given the short notice. At 4pm that same day I got a call to say there was a care home in Pitlochry that could take Anne, but I declined the offer because I think Anne would have been quite unsettled not recognising anyone.

So, my wonderful family came to my rescue - between one of our immediate families and one of Anne's sisters and her husband, they offered to take care of Anne. 

I cannot praise our family highly enough. You hear of families where relationships are strained, and I am so grateful that I have a family at the complete opposite end of that spectrum. I am so well supported!!

While away, I found it interesting that I didn't think about Anne too much. Perhaps this was because she was being cared for by family and not the care home, or perhaps I had simply learnt to switch off, live in the moment, and enjoy great company, great weather and great accommodation.

One thing that I overcame was the uncomfortable feeling I felt while socialising with other couples. I had experienced a lack of confidence when I attended a wedding on my own some months ago. This time, I felt very much at ease chatting with other couples whom I had never met before. Perhaps that wedding experience was a one-off.

During my week in the sun, I read a couple of books about people's experience of walking the Camino de Santiago in Spain. It is a pilgrimage to the tomb of St James in Santiago De Compostelo that runs for around 500 miles. A seed has been sown in my mind about attempting this once Anne is in residential care or has passed away. The idea of walking 500 miles (the Proclaimers' song comes to mind!!) as a pilgrimage has a strong appeal to me, but who knows how I will feel when either of these two events happen.

And so I return home fully recharged to continue to care for Anne.

As I was driving to pick Anne up, I wondered if she would recognise me. A few months ago, it took some time for her to recognise me when I had been away for a few days. But I was so encouraged that when I walked through the door she instantly knew who I was and smiled ..... the ebbs and flows of living with Alzheimer's.

until next month

aye,

Gordon