My Dad’s a Goldfish – Don’t ask, don’t get

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It is truly astonishing the amount of equipment required to allow someone to continue living in their own home when the person has dementia combined with mobility problems and other medical conditions.

Most things are actually available through social services or the NHS but it’s not quite as simple as putting in a request and receiving what is needed. For one thing, you don’t know what you’re going to need at different stages. The handrail by the back door, which was helpful when the Goldfish started to become a bit tottery but could still manage steps with his walking stick in one hand, was utterly useless when he had to use a walker on wheels. Try getting that, and him, down steps!

Also ‘they’ don’t always tell you what is available even though they are the ones supposedly trying to keep people living independently in their own homes. And sometimes what they provide is not what is needed.

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The wheeled walker. Can you imagine getting it and the Goldfish down the steps at the door without mishap? And can you picture the Goldfish sitting on it laughing uproariously as I ran up and down with it?

 

The Goldfish couldn’t get to grips with the NHS model of walker, which doesn’t have wheels and can’t be pushed along the ground so we bought him a walker on wheels. We were advised to go for the four-wheel type, which has a lidded storage box which doubles as a seat if the person needs a rest. The Goldfish thought it was hilarious to be pushed around the house while sitting on his like some god-like creature while I sweated and built up arm muscles which would have been useful on a building site. He also once mistook the lidded box for the toilet – but we’ll draw a veil over that.

When the Goldfish began to go walk-about at night, one instance involved the police who reported it to social services. We were given a door alarm and he was also – after being found unconscious on the floor one morning – given a fall detector.

Then came the time when the Goldfish couldn’t walk any distance and we requested and were provided with a manual wheelchair. We still had the crazy performance of getting him down the steps and into the car, out of the car at our destination and into the wheelchair. By the time they were able to provide a banana board, which fits between the chair and the car seat, the Goldfish, although physically able no longer had the mental capacity to understand what he should do.

We bought various bits and pieces to help – a thing which hooked on the door so the Goldfish could pull himself in could double as a tool to smash the window if we had a crash. Finally, we bought a vehicle

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It was lucky the Goldfish had some savings and could afford to buy this vehicle which allowed him regular outings – so many people arre not in such a fortunate position.

 

which was adapted to take the wheelchair up a ramp into the back. I am well aware many people are not in a situation to be able to do this. I guess their Goldfish can only enjoy outings within chair-pushing distance.

We were so lucky we had an exceptional occupational therapist who visited whenever we needed help. She recommended the handrail in the early days and, later, a raised toilet seat, a handrail by the loo, had joiners in to remove the raised lip in doorways and to re-hang the bedroom door so it opened in such a way we could wheel the chair in. It meant dad’s dressing gown hook was now on the outside of the door! But life was much easier when we didn’t have to dodge around a door.

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The Goldfish rather enjoyed using the stand aid – gripping the handles like he was on a motor bike!

One of the things which made the biggest difference to our lives was the stand aid, which enabled us to help the Goldfish out of his easy chair and into his wheelchair. We’d seen one used in the hospital. The DH said we needed one for home use. I think they just laughed at his request in the hospital but our wonderful occupational therapist was soon on the job and managed to obtain one for us. Without it, we were liable to put our backs out plus the Goldfish was likely to end up with pressure sores if he sat in his chair all day every day. Again, it was a case of asking for what we needed and again, I’m so aware that people who need such an aid probably don’t receive it because they don’t know about its existence, don’t know it is available and so don’t ask. And probably don’t have the exceptional occupational therapist the Goldfish had.

A major problem was that the support workers who came in would not use it without a second person helping – health and safety! This meant one of us always had to be on hand, which rather undid the benefit of having a carer in to give us a break. I read and re-read all the literature which came with the stand aid and nowhere did it say it required two people to operate it.

The second invaluable piece of equipment was a hospital bed. Getting the Goldfish into and out of bed had become a nightmare. By then he could do little to assist us and the strain on our backs was dreadful, plus it was horribly undignified for dad to be heaved around like a sack of coal. The bed had an air mattress to prevent pressure sores, it went down and went up, and the top could be raised, as could the bottom part if he needed to keep his feet up. I’m sure it could have made the bedtime drinks if we could figure out the programme!

We would not have had any of those aids had we not asked. No one told us they were available for use at home. Obviously, I can only speak from our experiences in south west Scotland – things may be different elsewhere (though I suspect not any better) but I’d advise anyone caring for a relative at home to ask and keep asking for anything and everything which will make life easier. They want to allow people to stay in their own homes (cheaper than residential care) so they need to make it easier to do so.

The other thing we were able to access for the Goldfish was a new, made to measure wheelchair – but this post is long enough so I’ll keep that story for next time.

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76 thoughts on “My Dad’s a Goldfish – Don’t ask, don’t get

    • There should be a catalogue of all the aids available so people can see what there is. Actually, there probably is one in the social services office but they don’t let people see it! We were so lucky with dad’s OT. They should all be like her. Within minutes of coming into a room she could see where the obstacles were and come up with a solution.

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      • I agree. It is no good finding out after the fact what you could have had. My back, along with those of many other carers, is permanently shot after caring for both Nick and my late partner for years. A good OT is worth more than their weight in gold!

        Liked by 1 person

        • I’m sure there are many thousands of people with back problems which could have been avoided had the proper equipment been made available. The other great thing about Dad’s OT was the way she interacted with him. Even when he hadn’t a clue what was going on he always responded to her with smiles.

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            • I did reply to this but wordpress only knows where it went! Anyway, I was agreeing with you and saying that what is being done for family carers is being done by charities, not the Government. All the talk about supporting people to remain living independently in their own homes is so much hot air.

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            • Yes, I agree. I worked with Carers UK on a project a while ago… seeing the figures for how many carers and their ages is a real eye-opener. Of course, with the new system of ’employing’ family carers, those figures have reduced drastically as have the benefits paid out. Yet those carers are paid for part-time work and are still on hand 24/7/365… and that’s without the effect on relationships of making a family member your boss…
              Governmental massaging of figures with little real thought for the carer….

              Liked by 1 person

  1. We have found that if you don’t ask you don’t get on so many fronts. I have met so many people who get so little. I’m sure we would never have had the level of Social Service funded carer sits that we have if I hadn’t complained about the behaviour of a certain professional.

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    • Unfortunately, many people don’t complain and so don’t get what help they need. But, we shouldn’t have to complain. If things (services, equipment) are available people should know about them – at the time they need them.

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  2. That stand aide looks so good! I’ve not seen anything like it here. That’s not to say it isn’t, I’m a bit out of touch these days. We had some hand rails put in and rented a raised toilet seat when my father was staying with us for a while. So good.

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    • It was an excellent aid and most definitely saved our backs as well as ensuring dad could be moved easily and safely. The rails beside the toilet were really useful, too, so it’s not only the big expensive bits of equipment which are necessary to make life easier.

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  3. A walker without wheels is pointless. I couldn’t work out why the flash-looking Zimmer we bought in Crete was so difficult to use until the hospital here provided me with two on wheels to take home and I realized it was the lack of wheels Mind you, they didn’t really work as well as me simply holding onto my furniture!

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  4. Reblogged this on Smorgasbord – Variety is the spice of life and commented:
    Mary Smith’s post on her father’s dementia is an extremely useful and informative manual for those who find themselves caring for an elderly relative. Like Mary I was lucky in managing to get a number of pieces of equipment but much of it we had to pay for ourselves. But do keep asking… head over and read the whole post.

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  5. This reminds me of a survey conducted amongst our clients, asking what they thought of us as a firm of lawyers, what things we did well and what bugged them. One client expressed the view that we took pleasure in waiting for him to ask exactly the right question before we’d give him the answer he needed even if we knew what he was after all the time. It came across as a joke but the point of professionals using their expertise as a shield to keep the lay person beholden by graciously gifting them just so much knowledge as they, the professional deemed appropriate, is a real problem all over. I had a little of this with my dad, ending up with this hoist thing to get him out of bed. We never really mastered it in truth.

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    • That’s really interesting, Geoff. And it does sum up what we often though – ‘they’ felt they knew more than we did – and certainly they knew how the system worked and weren’t prepared to let us in on the secret. They didn’t know what they were up against when Wee-sis, the DH and I got our teeth into somehting! I suppose there’s a kind of territorialism in many professions. Up here the NHS and Social Services are supposed to combine to work as one – you can imagine the territorial battles that has provoked.
      Your problem with the hoist illustrates my point about not knowing what’s needed when it’s needed. The hoist was great for moving Dad from chair to wheelchair and, for a time, to bed but there came a point when it wouldn’t work for getting him in and out of bed. His upper body strength was going and his mental capacity meant he didn’t always understand what he could do to help the process. That’s when we realised we needed the hospital bed which lifted up, tilted, etc. We started asking and eventually we received!

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  6. There is so much good info in this post. The only parent left in our life is my Mother in law, who was convinced to go to a Senior Independent apartment community, where so many safety features are provided. She was unsafe at her home (which she still owns, and won’t give up ) It is expensive, but has been a blessing to us, since all but one sibling live hundreds of miles from her. Thank you, Mary. Much respect to you for caring for your challenged father.

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    • Oh, thank you for your kind words. I think you are way ahead of us in providing places which combine independence with the necessary safety features. Where I live, the residential homes are not great – not much ‘home’ like about them. Dad had always dreaded ending up somewhere like that and we were determined he wouldn’t for as long as we could manage. My husband, sister and I were a good team – whenever one of us was struggling, another could step in. Sometimes it was tough but we also had a lot of fun and laughter which kept us going.

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  7. Excellent post, Mary. Here in the states, it’s very difficult to get the needed equipment without it costing a lot. Because of my mom’s severe dementia, which brought on much anger and difficulty to manage, my brother and I realized she needed to be in a memory care center, which takes care of her beautifully. She is totally wheelchair bound, and hospice came into the scene in the spring. THEY have all the special equipment that helps deter bed sores, a better low bed, etc. My mom continues to rally on.

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    • I’m glad to hear your mum is in a good care place, Pam. I’ve read about your hospice services from other bloggers caring for someone with dementia and it sounds so good. We don’t have such a service here, unfortunately. All the professionals here need to get their act together to work towards improved services for people with dementia. And invest in training and paying people in the caring profession properly.

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  8. This growing old is no fun and it’s scary what you need and how you can get it. Mary, your posts are great and so informative. My mother’s place, even if I had been allowed to care for her had small rooms and little space for the lifter and they would have struggled to fit in a hospital bed. Here in Spain, I am part of an organization which provides some equipment for those released from hospital – you can keep it as long as you like but we can’t provide everything. Not sure how extensive the social service help goes, but I guess we’ll find out in time.

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  9. It is a bit of an obstacle course trying to work your way around to getting some of the things that you need to help a loved one to stay at home. If they have been discharged from hospital or have a District Nurse visiting then there shouldn’t really be a problem getting the right equipment as the hospital quite often ask an Occupational therapist to do a home visit and see if there is any equipment needed. Also District nurses can order equipment such as hospital beds , hoists, stand aids, and commodes etc but it depends what they can have according to need and funding etc. It is always best to ask though, as you found out! 🙂

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    • Hi Judy, yes, that’s how it works in some cases – or should work. However, if the person hasn’t been in hospital and the spouse or son/daughter is struggling to get them out of bed, etc., the help required doesn’t materialise.
      If I was doing this again (god forbid) I’d sit down early and make a list of everything we might need from small aids to the big things like a hospital bed.The banana board would have been so useful in tranferring Dad from wheelchair to car – but only if provided before he could no longer understand what he should do. I’d certainly advise anyone to ask, ask, and keep on asking

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      • As you mentioned though, Mary, it is such a shame that you had to ask and keep on asking in the first place. It would have been far less stressful for everyone if you could have been told about it in the first place! 🙂

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        • Very true, Judy. And this business of not telling people happens so often and in all kinds of ways. Very few social workers tell their clients about self diected support for instance. Maybe that’s for another post!

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  10. Mary your info is invaluable to those caregivers and older generation who may not be aware of what is available. So kind of you to share your info through your intimate stories of caring for you dad. ❤

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  11. Pingback: My Dad’s a Goldfish – Don’t ask, don’t get – by Mary Smith | Sue Vincent's Daily Echo
  12. A lovely post Mary. Something my brothers, Uncle and I had been telling my sister for months that she could get help for my Mum if she asked the right people, or enquired as to WHO the right people were to get the help she needed. Dementia is horrible, not only for the sufferer, but their loved ones. Both my brother and I have had phone calls with Mum this week and she doesn’t know who we are. We are the furthest away, he in NZ and myself in Lincolnshire, so visiting is not at the drop of a hat. We do what we can, and all agree that Mum is now getting the care and support she needs right now.

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    • Thanks dropping in and taking the time to comment.It’s hard to know where to turn sometimes or who to ask. I was lucky my sister lives in the same town and we lived five to ten minutes from Dad’s house. It’s so much more difficult when siblings are scattered.

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    • Thanks so much, Willow. I so appreciate you offering to share my post. The more people who become aware of the need to ask the better. If you wait to be offered something you could wait forever!

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      • I know when I broke my back we had to find out for ourselves. I know it is not as difficult as your journey has been. My sister’s husband has Altshimers so I hope this article will help her too. This message needs to be out there! 💜💜

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  13. You need to get on to social services concerning why there’s only one carer coming to your home: it’s a minimum legal requirement by law that two carers perform the manual handling. It’s a dangerous job, and one that I hope you’ve been given the appropriate training in to avoid injury to yourself or The Goldfish. If not, then you really need to get onto the social worker and put your foot down: they ought to be viewing your father’s safety as absolutely paramount.

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    • Thanks for commenting. No care agency in our area had enough staff to be able to send two cares at one time so one of us (my husband, my sister or I) had to take the place of the second person. The stand aid we were able to get hold of is designed to be used by one person but the care agency wouldn’t allow their staff to use it alone so one of us always had to be there. Both my sister and I have actually been trained in manual handling. I still remember my first training course for a job in a care home. On my first shift after training I was told by one of the ‘old hands’ to forget everything I’d been taught because their way was quicker! I didn’t stay in that job for long and it made me determined Dad would never go to live there.
      I know from talking to other people locally that we were provided with so much more in terms of equipment than many others who struggle on without the help they need. It is so unfair. Some people try to cope without social services being involved and it’s only after the person has had to go into hospital social services are notified. Sorry, I could go on and on – will jump off my soap box.

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      • You’re absolutely right, of course. I worked in nursing homes for some years, and the one that particularly sticks out is the one in which we were badly understaffed and the manager refused to take on more carers. So long as there was one carer and an RGN, the manager didn’t see it as a problem (except, of course, that the RGN has a lot of her own complicated stuff to do concerning dishing out meds, documenting everything meticulously, dealing with GPs and OTs and social workers… obviously you know all of this as well as I do: some people should genuinely never come into posession of a management position where any kind of vulnerable person is being cared for, as staff and residents suffer equally in different ways – I detested the “conveyor belt” nature of daily washing and dressing – where’s the dignity in that? There isn’t any).

        My grandmother really ought to be in an EMT unit (as well as dementia she has lifelong mental health issues, including BPD and a tendancy towards psychotic physical violence). I don’t live in my town of birth and so I only get what news my mother (who is the only family member who’s not been driven away by her mother’s attitude – which has only worsened since the dementia struck) can give me. The police want her in a home, my mother wants her in a home, the carer who gets verbally abused and told not to touch anything so she can’t do her actual job feels that she needs to be in a home for EMT patients… but because my grandmother owns no property, social services are pulling out all the stops to find ways not to fund it, which is essentially placing my grandmother in great personal danger. She’s already physically attacked someone who approached her about not cleaning up after her dog, and almost set her kitchen on fire. I’m trying to advise my mother as best I can, concerning getting something sorted, but she’s emotionally exhausted by all of this and doesn’t like to make threats (although I believe she has a massive legal standing here, in which she could successfully sue social services for neglect).

        And now I shall get off my own soapbox! It seems that we have the same grievances with the system, due to what we’ve seen in our roles as care assistants in homes.

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        • And as well as our care assistants roles (spare me from the ‘has she been toileted yet?’ question!) there is seeing how cash-strapped social services can dig their heels in over doing what is right for the person. I live in Scotland where at least the personal care is free although scial services will not pay for a care assistant to come to provide respite cover. Good luck with trying to get things moving for your grandmother – and I know how exhausted, both physically and emotionally, your mother must feel

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  14. Couldn’t agree more with you, Mary. We were lucky that mum had a great care worker who always asked if there was anything we needed to help mum. However, the problem was sometimes my Step-Father who did not like asking for help. Sometimes, he would turn help down, but I think he was doing that because he felt it was like saying that he could not cope with looking after mum. A few phone calls to the care worker and we soon worked out a plan to get around that so that he did not feel useless. It was a struggle, but he was a very proud man and hated asking for any kind of help.

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    • Thanks, Hugh. Good care workers are like gold. Dad had one who was so brilliant with him we longed to clone her! Oddly when I was singing her praises to the care agency manager, because we wanted her back after her maternity leave, the manager said she was unpopular with some clients – yet Dad adored her and she always made him laugh.

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  15. My Dad often says ‘Old age is not for sissies’. This post is so helpful Mary, thank you. My Mum and Dad are used to sorting themselves out and they explore and buy things to help themselves. If only there was a directory, how simple that would makes things. I don’t mean this to sound political at all, just a comment. The system is set-up for box ticking, measuring and ‘massaging’ of figures, so no wonder it’s a complete minefield to navigate. Thank you again and hugs for you. xXx Thanks to Sue for re-blogging. ❤

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    • My Dad used to say ‘Old age doesn’t come alone.’ I’m glad your parents are ahead of the game and sorting out things they need. I really feel for those people who have no family back up and are left struggling through the minefield alone. Thanks so much for dropping by and commenting.

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  16. You got the nail on the head here Mary. My mother in law is slowly getting to the stage where movement is hard for her and she’s been suffering for 5-6 years. Just recently she was advised to ring a certain dept to get some help and now their home is equipped with extra bannisters and the door frame handle. There is bathroom help on it’s way now too! And it all helps her..her confidence has soared because she is able to move around the house easily now!

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    • Oh, Ritu, that’s great news. I’m so pleased for your mother-in-law and what you say about her increased confidence and ability to move around her own home is exactly why it is so important peole can access the kind of help they need. Thanks so much for sharing this news.

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    • Thanks, Rob. I know everything is very different in the States. Life can become so much easier if you can access the equipment available – the big problem is knowing what is available and asking (demanding) to borrow it. There are many useful aids which can be used on loan but no one tells you. So, I’m telling people to ask!

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            • To be honest, it’s a bloody nightmare! I have the unifying theme. I have enough materialon the blog to produce a memoir of around 85-90,000 words. However, when I came to work on it I realised that it had to be completely restructured to create a cohesive whole rather than a series of bits and pieces. I think the problem is that each blog post has it’s own narrative arc but putting them all together doesn’t creat a piece of work with an overarching narrative. I have finally made a start – well, I’ve made several false starts and really, really hope this time I’m on the right track. I was at a workshop and the facilitator got us to think of the stroy we were telling and pick out the point at which everything changed. Up until then, I’d been starting around the time of Dad’s diagnosis and suddenly realised that wasn’t when things changed. Everything went on pretty much the same for a long time so nothing to keep a reader’s interest. The point at which my life totally changed was the day my step-mother said Dad should go into the local care home one day a week to have a shower and lunch. I knew she wanted him to go in permanently and THAT’S when everything changed. So, I believe I’ve found the start point at last. I’m sure if you look over your life you will find a point at which everything changed – that’s where to start. Not saying the rest will be easy – certainly isn’t for me – but once the start/life-changing incident is identified it’s easier to go back to fill in detail and forward with the story.
              Sorry, I seem to have rattled on a bit here but hope it might be helpful.

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            • This is helpful Mary.

              Having too much material is a mixed blessing because that can make it difficult to get to the
              core of the story.

              When does it come to life?

              I think you’re right when you say the narrative should start when everything changes.

              If that’s true I have six memoirs to write. 🙂

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