Alzheimer’s at a distance

On this International Day of Older People, let’s take a moment to think about all the carers and loved ones of people living with Alzheimer’s and other forms of dementia. It is increasingly hard these days, when young people have to move and travel to maintain their careers, to make sure that our parents are well looked after. Those living with dementia do better in their own homes and familiar surroundings.

Here’s my second guest for today, Michelle, who is concerned about her Dad. She has a better idea than most of us what it is like to have a brain that doesn’t work for us they way it always used to.

Tragic circumstances leave my Dad on his own.

alzheimersDecember 2014 was a significant month for my family. I turned 32. My Dad turned 79. And I had a major car accident where I had to be airlifted to hospital. My Mum died unexpectedly aged 70. We all found this very hard. But as my parents had been together for 50 years, my Dad suddenly had to adjust to life on his own. He lives in South West England by the sea, in the same house that they moved into almost 30 years ago. I grew up in with my older sister. Sadly this proved to be a breaking point for her and she decided to cease all contact with Dad and I. 6 years earlier I had moved to East England and was a 2.5 hour drive away so although I was on the phone every day, I couldn’t fill the empty void in his home.

Dad misses the love and care of his family

rome
Mum and Dad on holiday in Rome

Dad had been the bread-winner of the family. My Mum gave up her career and stayed at home to bring up my sister and I. Dad had always had a woman in his life to take care of domestic things. His Mum, his first wife and then my Mum. He didn’t cook or clean, but he ran his own business, dealt with the finances and would do the shopping. They were equal and formed a winning partnership.

So without Mum he felt as though his right arm had been cut off. The shock hit him badly. He had been a type 2 diabetic for roughly 2 decades. But as he went through the mourning process he stopped taking care of himself and became very ill. He was taken to hospital when his blood sugar levels rocketed because he wasn’t taking his medication properly. Once he had stabilised, he agreed to nurses coming twice a day to make sure he had the right dose of insulin.

I learn that listening is vital for communication

Dad kept trying to talk to me about Mum, and whilst I could listen, I wasn’t able to comment. I had sustained a brain injury which meant I couldn’t control my emotions properly at the best of times, let alone talking about Mum. He so desperately needed to talk about her as part of his grieving process, and I did feel I was letting him down, but he also couldn’t cope with me crying so the best I could do was be quiet and listen.

Early signs of Alzheimer’s are confirmed

alzheimersMum had in recent times started to say she was worried about Dads memory, but he wouldn’t go and see anyone about it. As he dealt with Mum’s passing, it started to become more clear what she had been referring to. He lost things, he struggled to find the right word, he forgot names of places. So eventually he did have an assessment and was diagnosed with Alzheimer’s. Although I visited him every month, he was lonely.

Loneliness is a new and challenging experience

Since moving to the area, my parents had lived a very insular existence. They didn’t get to know anyone in the neighborhood. But now, not having a friendly face was a drain for him. I couldn’t move back as I needed to be near London to get the support I needed for my complex injuries. So he said he would like to move back to his home town in Berkshire so he could be closer to me, and have his life long friends on his door step. But that was blown out of the water when medical staff explained that his diagnosis meant that a move would mean running the risk of him struggling to settle. He could find himself lost in his own house. As he had been at the same address for so long, its familiar layout would be more deeply embedded in his memory, meaning he should be able to feel safe and comfortable there longer.

Helping from afar

azheimer'sI took over his shopping, using the internet to place a weekly order for him. Luckily, just before his diagnosis, he had completed the Powers of Attorney paperwork, appointing myself and my partner James as responsible for his finances, and when the time comes, his health. So I was able to have a card to his bank account, making the job much easier. He was fiercely independent. But a man at his age trying to do domestic chores, when it hadn’t been part of his his life before, was always going to be a tall order, let alone the complications of his poor health. So when he started to forget to eat meals, he would sometimes collapse. Diabetics must try to maintain their sugar levels otherwise this can be fatal. After several instances he did finally start to accept carers coming in. They are able to make sure he has his lunch and evening meal and do a few odd jobs round the home for him.

A different view

I found it hard to accept when the team would tell me with excitement how chatty he can be. How surprised they were when they got him to start opening up about his former career. Whilst they meant it in the nicest possible way, they just saw an old man. He was becoming a shadow of his former self, my Dad, the man who once seemed invincible. I was losing him too.

Dad chooses to stay in his own home

alzeimersHe is continuing to battle on at home, but it is getting harder for him. I am now under pressure from the nurses as they are finding it more difficult to assist him. They feel he should be in full-time care. But he and my Mother always insisted that they did not under any circumstances want to go into a care-home. Even with the Alzheimer’s, they still deem him able to make the decision about where he lives. As that changes it will come back to me. So I will have to be considerate of his mental health as well. Although his judgement day may come sooner this way, he feels it’s more important to feel supported and loved during the days in the run up to it, than it is to have many empty ones where you feel the world let you down.

jumbledbrainMichelle Munt is a former Beauty and Cosmetics Manager. She is living with a brain injury that she sustained in a car accident in 2014. Visit her blog at Jumbled Brain to find out more. You will read some great insights into what it feels like when our brain doesn’t function in the way we have come to expect of it. You can also follow her on twitter HERE .

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3 Comments

  • thejuicenut

    October 23, 2016 at 8:24 am

    I recognise a lot of what you write. I am disabled and live 2 hours away from my mum who has resolutely and consistently refused to move nearer to us, and now I feel the window of opportunity has closed. Her memory is very poor, her hearing is almost non-existent (she refuses to wear hearing aids), she gets confused especially when stressed. Her mobility is severely restricted and she has only recently finally agreed to use a walker. She really stuggles to get in and out of our car and I don’t know how much longer she can travel for visits. Yet I and my husband are the only ones who really see it. She can be so sociable and seem so capable, but it’s all smoke and mirrors. I am dreading when the time comes to make decisions about her care.

  • michellemunt

    October 5, 2016 at 1:41 am

    Thank you Fred. Dementia is frightening but if you acknowledge it early you can form habits that will help you. Writing things down, following a routine and always putting things away so they don’t get lost all helps. Keep trying new things to keep challenging your brain. And the most important is exercise and talking to people. It all really helps your brain. All the best Fred.

  • Fred

    October 4, 2016 at 10:33 pm

    Poignant and very well written, this brought a tear to my eyes. I wish the best for all of you through these trying times. I worry about dementia in myself as I begin to get older as my memory is already a wreck. Along with the basics of people having to repeat themselves, there are times when I’m driving familiar roads and feel lost for a bit if I’m distracted.

    Keep up the blogging! I know you don’t always receive alot of feedback, but your insight is powerful and comforting in many ways. I’m sure there are many that would agree with me!

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