A Lost World

Alzheimer’s Disease (AD) is a degenerative condition. It is fatal. The disease can last anywhere from 3-20 years but averages 7-8 years. The first sign is memory loss followed by personality changes. As AD progresses, the afflicted individual becomes disoriented about time and place and tends to exercise poor judgement. People with Alzheimer’s have an increasing  dependence on others and require round-the-clock care. The personality changes, cognitive lapses and eventual demise of a person with AD are extremely difficult on both patient’s and their loved ones. All is not lost however.

My parents both suffer from this progressive form of dementia and are in long-term residential care. Their world has shrunk to tiny proportions and they are oblivious to what goes on outside their own world. Happiness comes down to physical comfort and company. Family visits are a huge source of comfort to them both.

While sitting with my Mum in the Alzheimer unit yesterday, the lady in the bed next to her was very agitated. Doreen* is normally cared for at home but had come into the unit for a short period of respite care to give her family a much-needed break. Despite being very well looked after, there was terror written all over her face. Doreen’s world had fallen apart, she was ‘lost’ and required constant reassurance from the unit staff.  All afternoon she shouted “hello, hello” to anyone who passed and it was hard not to be moved by her anguish. When my Mum fell asleep, I finally got a chance to give Doreen the company she craved. The look of relief in her face will stay with me for a long time. She grasped my hand and tried desperately to find the words to express herself but the words would not come. I chatted to her calmly and told her that I understood why she was upset. Gradually she relaxed and then the tears came.  We hugged and I reassured her that I would come back soon for another chat.  That’s when I got rewarded with a most beautiful smile. Doreen was back on track and even though I knew it wouldn’t last, it made my day.

* Not her real name

14 Responses to A Lost World

  1. Grannymar says:

    The simple things in life are important: a smile, a touch and a hug and don’t forget to listen!

  2. Steph says:

    GM – It was agony to watch Doreen suffer for lack of human contact. The staff were very nice to her, bringing her tea etc but I could clearly see that what she really needed was company. I can’t imagine how frightening it must be to feel so lost and unable to make contact yet have people busy all around you. I can only hope that Doreen gained some comfort (even momentarily) from my attempt to reassure her.

  3. Annb says:

    Sharing time and just sitting with people has almost become a lost art. So often nowadays we feel we have to ‘do’ things for people when really all we need to do is be with them. I hope that in your up coming challenges your kindness will be repaid, I wish you warmth and good company.

  4. Steph says:

    Thanks! Ann

    There’s been a lot of sitting with people in need since I wrote this post. My father was rushed to hospital with chest pains on Saturday but thankfully made a good recovery and is back in the nursing home getting round the clock care.

    My mother-in-law (aged 90) then took a sharp downward spiral the following day and the family have been maintaining a bedside vigil ever since. Lots of tears, tea and sandwiches.

    And I’ve still no word from Nottingham on a date for surgery which for now, is a welcome reprieve.

  5. Annb says:

    Double dosages of warmth on their way…… It’s a very tough time for you.

  6. Steph says:

    Cheers Ann – No time to be bored, that’s for sure!

    Did I just hear you say “welcome to the club?” 😉

  7. Baino says:

    Steph you’re a saint. Even with all that’s going on with you there’s time for others. The charity which recently offered me a job offers ‘respite’ for carers of such people. This means that a carer goes into THEIR home while their primary carers have a break. It might be as short as going to watch a movie or as long as a week’s holiday. At least the sufferer is in familiar surroundings and the trauma reduced. I had never even heard of the service until I went for an interview. Fantastic idea.

  8. Steph says:

    Baino – I’m no saint, I simply can’t bear to watch people suffer.

    I love the ‘respite’ idea for carers in your area. Makes absolute sense to do things that way. I love old people and if I didn’t have my hands so full at the moment, I’d happily volunteer for a scheme like that one. I’ve not heard of it here however but if anyone can enlighten me, I’d be grateful. I shall enquire about it at the day care centre in the nursing home.

  9. Grannymar says:


    Carelocal.ie the Charity that Darragh is jumping out of a plane for is your answer! I blogged about it the other day.

  10. Nancy says:

    Dear Steph,

    It’s true, it never rains but it pours. I’m sorry about your Dad being in hospital but am happy he’s back with your Mum again.And your Mother in Law; sorry about her,too.

    I hope you get some rest yourself,Steph. You have a lot on your mind so,every chance you get, please take a bit of time to be on your own. You know we are all thinking of you and wishing you the best….

  11. Steph says:

    Grannymar and Nancy

    Apologies for lack of response. Too distracted by ongoing family vigil to think straight. Back soon xox

  12. I found your blog on google and read a few of your other posts. I just added you to my Google News Reader. Keep up the good work. Look forward to reading more from you in the future.

  13. stwidgie says:

    Thank you for keeping Doreen company. My grandmother had Alzheimer’s, though it was just before that name became known. I was a teenager at the time, and it was hard for me to be patient with her when she came to live near us.

  14. Steph says:

    stwidgie – Hello and welcome over from Grannymar’s!

    I don’t think I’d have had the patience for someone with dementia when I was a teenager. However, over the years as both of my parents have deteriorated, I’ve learnt what works best for them and for me. To understand dementia, you have to be able to live in the moment. You only have to stop and think what it must be like to feel completely lost, to imagine how welcome a friendly face must be. It’s such a reward when you earn a smile 🙂

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