Dementia Happens

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Old age has no respect for class, creed, fame or fortune. It’s an inevitable process… that is… presuming you get to survive that long.

By 2030, almost a million people in Ireland will be over 65 and the older you get, the more likely you are to suffer from dementia. There are approximately 38,000 people living with dementia in Ireland today.

There is no immediate hope of a cure for Alzheimer’s disease and with Ireland’s ageing demographics, it makes sense to plan ahead for the needs of an ageing society. A new study has found that people with dementia in residential care need to feel safe, secure, occupied, at home and connected to their former lives. Sadly, for the majority of the 7,000 dementia patients in residential care today, very few actually benefit from specialised dementia units.

My 80 year old mother has been in full-time care since 2004. She is wheelchair bound due to severe osteoporosis and also suffers from an unusual presentation of dementia. She is totally dependent on others for her everyday needs. For her first two years in the nursing home, my mum was terribly unsettled and became very depressed by her increasing dependency on others. Her dementia left her unable to follow simple instructions and she had frequent falls when left alone. The family were advised that she would be safer if moved to the dementia unit within the home where she could be constantly supervised. We agreed to this plan and shortly afterwards, she moved into the secure unit where she settled in very well. The care is fantastic there but the conditions are far from ideal.

This dementia unit is a locked unit for women only, with it’s own dedicated and very caring staff. It is basically one long, narrow, open-plan room where eleven women are living out their final days in horribly cramped conditions. They have to eat here, sleep here, are washed and toileted here, entertained and most likely will die here too. This poorly ventilated, overcrowded room is their home. Personal space consists of a bed, a bedside locker with tiny wardrobe attached and enough room for a chair beside the bed but nothing else. The unit has two small toilets neither of which are wheelchair accessible so only the few who are mobile, can use them. The residents in wheelchairs must use commodes with the curtains drawn around their beds for limited privacy. Some of the residents are bed-bound and are doubly incontinent. Meals are served up in this environment at two small tables at the end of the room and most of the patients must wait their turn to be spoon fed by the staff. The only form of entertainment is a television and a DVD player which were donated by the family of a deceased patient. A CD player was recently purchased by the ward manager so that the ladies can enjoy calming background music with their old-time favourites played over and over again – not that anyone would notice. There are many different levels of dementia in the room. Some of the patients have withdrawn from the world and just lie or sit staring into the distance all day, every day. Others are agitated or aggressive and have to be carefully managed so that they do not upset the other patients.

Dementia is not a pretty disease. There is little or no communication between the residents of this unit. This fact nearly broke my heart when my mum first moved in as I felt she was being denied a basic right to enjoy the pleasure of interaction and would deteriorate rapidly as a result. To give the staff credit where credit is due, they were quick to recognise this problem and they go to great lengths to chat with her as they go about their duties. I must add here that the staff are wonderful and I have huge admiration for the work they do in very difficult conditions. They look after all the patients with great love and compassion and I know my mum is very lucky to be in such good care. I regard the staff as part of the family these days – we work together as a team through thick and thin.

The world of dementia is a frightening and bewildering place for sufferers. My mother is safe and secure in her present surroundings but her environment leaves a lot to be desired. It does not resonate of home and it is poorly adapted to compensate for the disability of dementia. How would you like to end your days in a shared room with minimal privacy or dignity afforded? We need to take a more holistic approach to dementia by providing social, psychological and environmental supports and not by just throwing drugs at it. Surely, with the booming economy we live in today, this vulnerable section of society deserves better?

16 Responses to Dementia Happens

  1. 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.

    Stacey Derbinshire

  2. Grannymar says:

    If I get to that stage I want Elly to use a pillow!

  3. Steph says:

    Grannymar, sorry to write about this on the day that’s in it!

    Happy Birthday to one very fine spring chicken 😀

  4. Ian says:

    I am disappointed to hear that there is no proper programme of activities. Proper music therapy adds a great deal to people’s lives, even those who have no idea of what day it is will join in snatches of songs and have memories triggered.

    I do hope there is some sort of pastoral care

  5. Steph says:

    Ian – there is indeed a programme of activities in the nursing home (and a very fine one too) but generally the patients in the dementia unit tend to be left where they are unless a family member brings them to whatever is happening. My mum has always loved music so I try to bring her to all the musical events but even that is becoming a problem. She has to be lifted by a hoist to be transferred into a wheelchair and recently she’s been changed to a large armchair wheelchair (for comfort) which is a bugger to push any distance. It’s heart warming to watch the old folk come alive to music.

    There is pastoral care available at the nursing home but my mother tends to shun it, like many other things, these days.

  6. Steph says:

    Hello! Blythe and Welcome!

    Thank you for your response, and your for understanding of the situation. I’m so sorry to read on your blog that your mother has died. Dementia is such a cruel disease. Both of my parents suffer from dementia and reside in the same home. There is no male dementia unit so my father (aged 87) is tagged electronically so that the staff can keep an eye on him. Even so, he wanders around in circles and loses his way frequently within the building. Every night he goes to the night nurses in his dressing gown and asks if he can have a bed for the night… and then he rings me most nights to say that he’s “in hospital for the night and will be home in the morning”. He doesn’t realise that my mum is in the same building so it’s always a lovely surprise for him when I bring him to visit her. I’m so glad that they are together in their final years.

    You’re absolutely right about the music. I’ve witnessed some lovely scenes where very withdrawn patients have come alive to music. My mum loves all the old musicals and if she is having an agitated day, the staff put on a DVD of one of her favourites and her mood brightens instantly. She also loves fresh air and getting outdoors, and especially loves trees. There are beautiful grounds around the nursing home and I make every effort to get Mum outside at every possible opportunity. I dread the day when that option is no longer possible.

  7. blythelight says:

    Your description of the care facility is sadly, all too common. So many places simply don’t have the funding. I was fortunate to find an extraordinary care center for my mother, but it came at a price. My gamble was to try to time her bank account with the decline in her disease. This particular place could not accept Medicaid, and those in our region that do, are not places I wanted my mother to spend her final days, regardless of her level of awareness. It is hard to find activities for people to do who are at varying levels of physical ability. Music, however, is definitely something they can relate to until the very end. I remember one lady who truly looked like nothing was going on upstairs, and some guy came one day and played old show tunes on the piano, and she sang all the words to every one of them! I was amazed. My mother has always loved animals. For her, relaxing and watching Animal Planet – no plot to follow – no pressure games like Bingo – just extraordinary photography and caring people – was her idea of a great time. Good luck to you. Your time and your love are your greatest gifts.

  8. blythelight says:

    Yes, my mother, too, loved the outdoors. She loved to fish, walk on the beach, and always had a nice garden and several bird feeders. Last summer, I frequently took her for short walks, or sometimes we would just sit out in the courtyard and enjoy the fresh air. There were a few fruit trees and blueberry bushes, and when they came in season, we would snitch some and pretend we were sneaking a real treat. My mother taught me to live in the moment – to accept life on its own terms – to be thankful, because no matter how hard it gets, there are always those who have to deal with much worse – and to appreciate small things: a cold glass of water, the sun on your face, the feel of the wind, the intense hue of a delicate flower. Most of all, she taught me to appreciate our time together and the love we have for one another. I would not have learned these things in quite the same way without this disease. My heart cries for you and for the people you describe and who I know only too well – the confusion in which they live, and their desperate attempts to make sense of it until they reach a point at which it no longer matters.

  9. Steph says:

    Thanks Blythe

    It’s really lovely to find your reply. I’m just home from a difficult day at the nursing home. Sometimes I sit in that room watching what’s going on and I think to myself “nobody would believe me if I tried to describe this scene” so it’s good to know I’m not alone.

    My mum and I were never close. I used to blame myself for this (as the only daughter) but then as the years went by, I realised that the problem was of her making not mine. My sister-in-laws all complained about receiving the same ‘brick wall’ treatment. One of the few joys that dementia has brought, is that the brick wall has come down and Mum and I are now closer than we’ve ever been. It’s a complete reversal of roles and it feels like a real privilege to be there for her. Mum was a very proud and a very private woman and that’s made it even harder for her to accept the dependency that goes with dementia and disability. She’s gradually slipping into oblivion but still rewards me with a huge smile whenever I arrive 🙂

    And exactly as you describe, we derive great pleasure from the simple things in life. Mum needs for nothing these days other than my time and my love.

    Thank you for caring.

  10. blythelight says:

    Ah! You have hit the crux on the head! That is exactly the way it was for me – and precisely why I decided to start a blog to tell our story, because there was this transformation with the decline, a roll reversal that we both resented at first, and then a deep friendship that we never had before. In fact, before all this, I saw my mother maybe a couple of times a year; I couldn’t handle the conflict, the guilt trips, the intense conversations that delved into deep-rooted psychological feelings, attitudes, and a re-hashing over all the difficult things in life. Those who are abused often abuse, and I was dealing with a fair amount of anger with the realization of how it had affected my life. However, in that last year of her life, I was visiting her sometimes 3x/day. We became best of friends. I should amend what I said earlier – what she taught me most was to FORGIVE. None of that other stuff mattered anymore. It all fell away. And I came to know my mother as this remarkable, caring woman who in her final days brought so much joy to other peoples lives, both to the caregivers and the other residents. I thought, you know, even with dementia, this person still has value. She makes people laugh. She reaches out with a smile and a touch. She turned out to be a very difficult act to follow, and I thank this disease for allowing me to see it. Hang in there. The day-to-day part is so very difficult.

  11. Steph says:

    Thanks Blythe – easy knowing you’ve been there!

    Again, you’re right about the forgiveness. None of that stuff matters any more. The only thing that’s important these days is the ‘here and now’.

    My only regret is that I can’t get to see my parents more often than I do. It takes me a minimum or an hour to drive to their nursing home and if I’m not careful with the timing, it can take 2-3 hours to get home in heavy traffic. I’d love to be able to pop in and out to see them more easily.

    Thanks again anyway.

  12. Baino says:

    Not to make fun of GrannyMar’s comment, I was watching a program the other night about elderly (mostly healthy) people taking the enormous risk of going to Mexico to purchase nembutol so that they could die with dignity when the time came. It seemed so harsh to me that they had to risk a prison term in order to choose the manner of their demise. We wouldn’t put our animals through that kind of suffering. Having said that, three stage aged care is now BIG business over here. We provide special advice at work for people facing aged care placement for a variety of reasons and it’s so sad but a necessity for many who are no longer in a position to care for themselves. All homes cater for people with dementia but only a few have specialised units. In fact one of the development proposals for my own street is for a three stage residential care facility . . . It is a problem and like Ireland, we’re facing a large ageing population so smoething needs to be done . . and soon.

  13. Steph says:

    Thanks Baino.

    The ideal way forward for any country with an ageing population is to invest in homecare packages to help the elderly to stay at home for as long as possible. This would also help to free-up acute beds in the hospitals which are filled with elderly patients who cannot get a placement in a nursing home and who are not well enough to manage at home without extra help. Our government of course, has chosen to respond to the present healthcare crisis by cutting the budget for homecare packages 😦

    We have great cliffs where I live and when the time comes, I intend to let the brake off my wheelchair myself 😀

  14. blythelight says:

    In response to the earlier post, yes, I feel really fortunate to have found a place for my mom close to where I live. So many face the logistical problem you do – and with gas prices the way they are, not to mention the time factor, money, space availability – piled on with guilt – aaaaghhh! What to do?

    And in response to sailing off a cliff, the ironic thing is, you have to do yourself in while you still have the sense to be able to do so, and at that point, you might not want to – yet. I remember one lady who, in a final act of determination and defiance, simply quit eating. It was quite amazing – no one would have thought she could have made such a conscious decision. She died with her family singing songs with her at her bedside. It was really something.

  15. […] Dementia is… Dementia is an umbrella term used for a range of symptoms that manifest in a progressive decline in a person’s functioning, caused by degenerative disease of the brain. It is characterised by a gradual deterioration in memory and in the person’s ability to carry out everyday activities, make decisions, understand information and express themselves. It may also affect the person’s mood and personality. Dementia usually has an insidious onset, with most people developing symptoms gradually over a period of years. At present, it is not known what causes the different types of dementia. Medical research is ongoing throughout the world to discover the cause and develop new treatments. Put simply, dementia happens. […]

  16. signs and symptoms of dementia…

    […]Dementia Happens « Biopsy Report[…]…

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