Helen's Dementia Blog

Just imagine…..

Your husband or wife says to you ‘What’s the plan for today?’  

You reply, ‘We’re meeting some friends for lunch in town’.  Your spouse then repeats the question every couple of minutes for the next 40 minutes.

Your partner tells you a story with a funny punchline. You respond by genuinely laughing.  They then tell you the same story every day at least 4 or five times a day.

You suffer with sciatica and nerve pain which can only be relieved by lying down and resting or having a long warm bath. However, your spouse cannot bear to be in a different room from you because they become anxious and fretful if they can’t see you. So you forgo your lovely bath, and take a quick shower whenever you can.

You are very tired but are unable to sleep because your spouse wakes constantly throughout the night and wants you to be awake too.

Your spouse is extremely deaf and forgets to put their hearing aids in. This results in you having to repeat things countless times throughout the day.

Every time you go out your spouse becomes confused and wants to go home because home is familiar.

You go out for lunch and your spouse isn’t sure which cutlery is theirs and has trouble cutting up food or eating without making a mess. They hate being ‘helped’. It makes them very cross.

Now imagine all this happening and you are a 93 year old woman and your husband has has Alzheimers.

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I’ve just taken a couple away for 8 days. We stayed in self-catering accommodation in a converted farm on the Wiltshire / Somerset borders.  As a Home Instead CAREGiver I have known them for over 3 years and visit them regularly.  I‘ve taken them on holiday 3 times before and my main mission is always to give Mrs B a rest as she looks after her husband who, at 94, has Alzheimers which is slowly getting worse.

It’s been a really good week - we’ve had some wonderful moments:

One morning Mr B kept referring to himself rather regally as ‘one’, just like the royal family do.  We had great fun with this and I spent the morning referring to him and calling him either ‘HRH’ or ‘Sir’ which he thought was highly amusing!

Mr B’s sense of humour is dry and witty and nearly always present. One afternoon, when I put out my hand to guide him to a seat, he looked at me and, with a wry smile and a twinkle in his eye, said ‘I can’t quite make out whether you consider me to be an old man or royalty’. Naturally I assured him it was the latter!

Another morning after breakfast I went to get changed as we were going out for lunch. When I re- emerged Mr B greeted me with a big smile and said how nice it was to see me again. He proceeded to tell me that there was ‘a very nice girl staying in our farmhouse.  She does the cooking and all that sort of thing.  She makes me laugh a lot, but I’m not completely sure I should be fraternising with the staff!’ It was such a bittersweet moment.

On one occasion this immensely intelligent and dignified man with impeccable manners and a deeply ingrained sense of what is ‘proper’, was in the car with me when he started to sing.

This was something new. He had always spoken of his inability to sing ever since he was told that he couldn’t as a boy, so when he started to belt out an old time music hall song, followed by a very interesting rendition of Beethoven’s 5th and another song with lyrics so rude I couldn’t possibly write them down, I was both delighted and concerned.  It struck me that 2 things were happening here…firstly, he was extremely comfortable, and secondly that this could be a sign that his disease was entering another stage, where inhibitions are gradually shed. 

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This week has made me question how I might behave if my husband had the same condition.  How would I deal with his short term memory loss? It is exhausting listening to the same thing over and over again and pretending it’s the first time you’ve heard it.

Would I really never lose my temper and become so exasperated that I’d end up shouting? How tempted would I be to put him in a home?

I can do it for Mr B because I only have to be there for a limited amount of time…but all day every day? 

What has struck me in particular is Mrs B’s tolerance and compassion.   Here is a lady of 93 who is in almost constant discomfort. Of course she gets worn down, but equally she feels sad for her husband that he cannot remember things and gets so muddled. She is unbelievably patient and loving towards him. She never complains and his happiness comes before hers.  Always.

For example, during our stay we were invited to join one of Mrs B’s younger brothers, who’d recently turned 90, for a celebration lunch along with a ‘little’ brother of 85 and one of Mrs B’s daughters and a granddaughter who’d flown over from Israel especially for the occasion.

It was the first time in 7 years these members of the family had all been together. 

After lunch we were invited to go back to the brother’s house for coffee and some family time.  Mrs B was treasuring catching up with her family but Mr B started to struggle after a while.  He could not keep up with all the conversations or remember who people were.  He’s used to having Mrs B all to himself at home and ‘sharing’ her was very difficult for him.

The visit was cut short when he kept saying ‘please, please can we go now. I’ve had enough’.  There was no question about it….his happiness came before hers so we left.

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Mrs B’s dedication to her husband is very touching to witness and their love for each other is sweet and genuine. They sit close on the couch together and hold hands.  They always treat one another with respect.

I walked into the kitchen one day and there they were; this tall thin man stooped with age and an almost permanent expression of bewilderment on his face, looking down on his petite wife. She was standing on tip toes so she could loop her arms around his neck and was gazing up at him like a 16 year old with such love that it made my heart melt.

It was such a pleasure this week to facilitate a much longed for lazy bath for Mrs B. I was able to keep Mr B entertained while she relaxed and soaked her aches away whilst listening to Vivaldi through the bathroom door. The look on her face when she came out is something I’ll never forget!

Unless you witness it first- hand it’s hard to imagine the impact this terrible disease has on people’s daily lives and the enormous toll it takes on those caring for them.

Mrs B is an inspiration.  She is not bitter or resentful, she does not shout or get angry…she is a remarkable, selfless and lovely lady and I just hope that, if ever I have to, I will be able to follow her amazing example.

A group of Home Instead CAREGivers talking
Family welcoming a Home Instead care manager into their home