age, carers, Dementia, Uncategorized

Where is the ………..?

The game of finding things is challenging at times.  My mum constantly asks me where something is.  I thankfully have some idea as know where she generally keeps her purse, her watch, her rings etc. But if we put something down that is a bit unusual it might be lost forever. There is a pair of glasses that we have not seen for a while.  Thank god for back up spares.

My mum loves tidying up after me, she thinks I am untidy. She is correct.  But then she or me will ask where something is and she will have put it somewhere different and we have a mad moment trying to find it.  My mum gets upset at her inability to remember, she chides herself that “it is just stupid”. It is just that short term memory vacuum.

She put her rings in a dish on the coffee table the other day. Then one went missing. She remembers that she has them all together most of the time. I know she keeps them in a box most nights. Luckily today she had not put on this particular ring and it was safely still in the box.  This must be a nightmare for care home staff who often get accused of stealing but it may well be the person themselves secreting it away.

 

“Have we made a list for the shopping?”.  “Yes, it is on the pad” I reply.   But I have to show her that this is true.  She worries about forgetting something while she is out shopping.  She herself can no longer write the list.  Her handwriting now is something like a tiny spider. Unrecognisable from her previous script.  She got upset again when trying to sign my birthday card.  All of this is very challenging I don’t like my mum crying.

My mum remembers where she has always put things not necessarily where she has put them now. Her drawers are kept the same to help her find her clothes. There are different things in wardrobes so she generally knows where her coats are, etc.  But there are several drawers with tops in so I can hear her going from drawer to drawer trying to find a particular top. Then along the way she forgets what she is looking for and continues around.  “What am I looking for?” she asks. We talk constantly about downsizing her wardrobe but she is scared she will need something she may throw away.

 

My mum has been washing up for years. No dishwasher at our house. Things have been in the same drawers and cupboards for years. But alas she has a daughter and occasionally a son who move things or use unusual items.  For some reason my mum cannot remember where the unusual item goes, as she may have not used it  recently.  The colander, the grater, the salad bowl cause her great distress.  I reassure and say I will put them away. It is just great she has washed up.  But it irritates her she cannot remember.

 

Some things were moved when the new central heating was put in. This caused great upset for my mum who really couldn’t remember where something went if there was a query. We tried very hard to put everything back as it had been before but silly me did not take photos. It has taken two months to find a home for a plate that “just wasn’t right”.

I sometimes ask her where something is and she looks back very frightened and in a small voice she say’s “I just don’t know”.  She is worried and concerned that she can’t remember. Terrified she will forget something important.  I reassure her she has three brains trying to remember now, her, me and my brother.  But, we are all over fifty, there are no guarantees.

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age, carers, Dementia, Uncategorized

Mrs Wobbly fell down

Monday I arrived home to find my mother on the floor. She just looked up at me. “I can’t get up” she said in a very small voice. I had no idea how long she had been there. I had been out for three hours.
She looked well despite being on the floor. I gently checked her out to see if anything was causing her pain. I tried to help her get up but she could not get herself up onto her knees to use the chair and I was unsure whether we may be causing more harm.
Despite her protests I dialled 999. The paramedic arrived very quickly and did an excellent job of ascertaining my mother’s situation and her current memory and confusion issues. He physically assessed her and she was deemed fit if a little bit out of sorts by the fall.
We helped her up onto a chair together and suddenly my mother was back. She was asking why the “doctor” had been called. She had no clear memory of events.
Despite the paramedic really wanting her to go to hospital my mother refused. I was happy with this and could not see why waiting in a draughty A & E department was going to help things. She clearly had not broken anything and was able to walk and go upstairs. I suspected aching and bruising might be her only after effects of her fall.

For me this was an interesting challenging point in our relationship. Yes, I was her daughter, her carer, but I changed into the emergency nurse at the sight of her on the floor. I went through the motions of immediate first aid and contacting help. I advised my family of the incident and watched my mother like a hawk all evening.
I went into professional mode and still have not quite got out of it. I have now gone on twenty-four hour call out. I am not sure I can do that for very long without burning out myself. But I don’t want to leave her. I know her and can help her navigate the health care system. I know she can be rude and outspoken which might not go down well with other professional carers.
But I am aware I need to care for me. Not sure how to do that. But something has changed.
Today my mum is aching. “Why does my hip hurt” she asks. She has no memory of the fall.

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age, carers, Dementia, Uncategorized

Letter from a Carer

 

Dear Doctor,
Why is it so hard for professionals to see my mum as I see her? Why do we see a different person every time we go to the practice? There is no chance of anyone building a relationship with my mother that she can trust. Why do we see different people, for various aspects of her health? Why can’t she see someone who will treat her as a whole person, and plan her care holistically and work with me as her carer. I believe there was a standard that all elderly people should have a named GP who will co-ordinate her care. I am not aware this has happened for my mum. In fact, the junior staff seem unaware of this standard. Over 75 Named GP 2013

She is 85 and she has signs of dementia. However, she passes every one of your silly tests as they test her intelligence not her short-term memory. She greets everyone she sees with a smile and puts on a great vocal performance, but she is extremely anxious that professionals will interfere in her life and want to put her in a home. I know she has signs of dementia/Alzheimer’s. Her short-term memory is very poor. But if she sees different people every time she does not get a chance to build a relationship or any memory at all that she can trust and value. They also can only assess her on the ten minutes they have available. It is not long enough. She cries with me afterwards as she does not like “these strangers” taking over her life. I try to reassure her that we all want the best and will try our utmost to keep her at home for as long as possible. But continuity of carer would be a distinct bonus.
She won’t give permission for a “falls assessment” despite being very wobbly on her legs. We laugh and we call her “Mrs wobbly”. But she is scared her legs are going to let her down and she won’t be able to walk. She knows intelligently that occupational therapists are there to help but she does not want strangers in her house. Telling her what she can and cannot do. The beaurocracy of it all means that unless she consents no one can do anything. That is poor support of me her carer who might need aids to assist my mum’s wellbeing. Surely the staff could spend more time and build a relationship over time so that she does trust them and welcomes them into her home.
I suspect I am dreaming in this modern world of the NHS when only ten-minute appointments are offered. This is not long enough for my mum. I know that there are specialist nurses now taking on the role of doctors in the surgery, however it would be great if one could be specialist in dementia/elderly support. My mum cannot be processed. She can’t be seen quickly and sent on her way. But we are made to feel that we are holding things up when she begins to talk and reminisce.
I as a carer have registered as such now. Just so that someone knows I am out there caring for my mum. But I cannot do it alone and need professional support to respect my opinion and help us care for my mother together.

With kind regards

Her Carer

 

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age, carers, Dementia, Uncategorized

Time to Care

 

My mum has not been well this week.  She needed another dose of antibiotics. She has been very tired and lethargic and I am having to help her more in the mornings now to wash and get dressed.

This development made me think about all the paid carers out there, who must be at a particular house, at a certain time. They get someone up; washed and dressed and possibly breakfast too; all in about a fifteen minute or, if you are lucky, a thirty-minute call.  It is impossible.

It is impossible if you are trying to maintain someone’s independence. Giving them some autonomy over their life, their day.  It is impossible to ensure someone’s dignity in the process too.

Let me explain. 

 

My mum was tired she really did not want to get out of bed at her usual time about eight-thirty.  She at 84 has a right to choose when and whether she gets up in my mind.  Yes, I know she needs to get up and eat and move around to be healthy, but if on the odd occasion she doesn’t feel like it, why should she?  Would the carers make her get up?  Would they be able to come back later?

I left her for a little while longer, after I had given her a drink.  I then helped her to have a wash in the small bathroom.  I let her do as much for herself as she could and wanted to do but of course this took longer and she was breathless so needed to sit down and take it slow.  I helped her to dress too. Knowing what she usually wears and how she likes to wear her undergarments is essential. Do the carers who come in know these small but important aspects of dignity.  Especially if it is a different carer every day?

Once dressed we moved downstairs for breakfast. My mum has a range of breakfast cereals and rotates them each day. But she will say if she fancies a different one. I warm the hot milk she likes and make her a cup of tea. By now she is tired again and says she needs to sleep again. Breakfast sometimes takes a long time.  If you as a paid carer are needing to be off to your next call, it must be very hard to give choice and give time. What must happen if they have to actually feed the person?

I am very lucky. I can give my mum all the time she needs. I try and work with her so that she is doing what she wants to do. Don’t misunderstand me I do get frustrated if I am going out to work and things are going a little slow. I do get annoyed when I make a meal and she sits and looks at it as if I have given her green worms to eat.

 I get tired doing all the washing ironing and cleaning. No less than every housewife in history. I have become a housewife!!!  I have never been a housewife.  But there are more sheets now and of course she complains “are you washing again!!!”.

But I love my mum. She can be really funny. I am sure those pop-in carers would not appreciate the humorous moments we have.  I am glad I am free to care for my mum and have a flexible enough job to cope for now.

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age, carers, Dementia, Life

Mum: Things that are working/things that are not

Over the last few months we have now developed a routine. She had a routine but there is now a her and me routine too. It has taken a few months to settle but she is not shouting at me quite so much.  She even says “I am glad you’re here” sometimes when we have had to get over a difficult moment.

So mum gets up to go to the loo about 8am 8.30 and then she goes back to bed. I get up and get the breakfast things out. It really is important to me that she still sits at the table with the tablecloth and the teapot and an old-fashioned glass milk jug.  This was her standard. I try and keep to it but I do know when I am not here she does the minimum but at least she can still do the minimum.

Then I will go to work. On Mon and Wed she either goes to the bank with my brother or her sister shopping.  This means I am a little anxious to ensure she is ready to go out when they arrive. I recognise this is my anxiety more than hers or theirs but she tells me she hates rushing and not being ready when they come. So I try and help her to be ready.

I try and make sure she looks good when she goes out. She has always been known for looking smart and colour co-ordinated. So we try and keep the standard.

At 11 she usually has a cup of coffee with a piece of toast or a couple of biscuits.  This is to keep regular food throughout the day for her diabetes.  I am not sure she was eating something at this time before I came to stay with her. She had lost weight.

At 12 12.30 we have lunch. I try to be there most days. Just for a sandwich or soup.  It is great that my job allows me to pop back.  My mum will have been asleep in the chair.

Then the afternoon I have either gone to work or we try and do something around the house. Cleaning, cooking, ironing etc.  My mum would have changed all the curtains by now for summer. Sadly, we are a bit delayed this year. The things is it really would have bothered her in the past but doesn’t seem to anymore.

Then we have tea/dinner around 5 -5.30.  My mum gets a bit jumpy if it is not on time.  She does still make her own tea but it takes a while.  I do cook most meals now. Or  I try to make them as easy as possible when she has to do it for herself. We are both paranoid about gas taps on the cooker being left on. But I can be as forgetful as her if not more so.  Maybe I have dementia?

We generally watch TV in the evening. Most soaps and some drama and then the News and then to bed. I am not sure my mum can follow the story anymore. If I react to something she asks. “what happened?”.  I also work on my computer at this time. It means we can be companionable in the same room but doing what we both want to do.  Earphones are a marvellous invention.

My mum really likes quiet. So I can have the radio going in my ear and not disturb her.  But we can still have a conversation.

 We are often in bed by 10.30 and I help her shower a few times a week. She is frightened of falling and it is a bit of a struggle physically and psychologically but we manage.  I am grateful for the early night I was not aware of how tired I might feel.

But there are some things that are deteriorating and beginning to worry me.

 At breakfast she struggles with the boxes of cereal, even the plastic boxes she bought herself.  She has also developed a tremor when she tries to drink her tea. This has become more marked over the last couple of weeks.  She is not walking as well as she was either.  She has definitely got a “wobble”.  We can laugh about it and we have decided to call her Mrs Wobble, a new character for the Mr Men series.  Her sister, my aunt, who has a wheeze has become Miss Wheezy.  But we do laugh which is good.

She has been on antibiotics for an infection but her cough still is quite bad.  So today the doctor is calling. My mum will not like it but I think it is important that she gets checked out. 

I am now getting concerned as I am supposed to be working at the weekend. Beginning already to feel guilty for leaving my mum.

But my brother says he will call around in the day when I am out.  I have to say, he has done a great job of the garden and my mum does have a lovely place to sit. But getting there with Mrs Wobbly is getting harder.

 I do wonder if I have done too much for my mum and made her “give up” slightly.  If you don’t move, your ability to move does get less. She spends a lot of time asleep in her chair.  But I want to look after my mum. I want to cook for her and help her if I can.  She is 84.  It is a constant psychological battle.  We have to be grateful for every day.

There has been a bomb in Manchester that killed a lot of people at the Manchester Arena. My mum watched the telly all day.  She said she felt she had to.  This is not like her she only turns it on in the evening. But she is right there with the whole of Manchester standing together against this outrage.

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age, carers, Dementia

Who is looking after who?

 

“Have you got your money?” I asked my mum on the doorstep.  “Yes and I’ve got my hanky!” she cheekily retorted with a smile.

We both appreciated the poignancy of the moment.  I was seeing my eighty-four year old mum off to church, like she had seen me off many times to school.  The tables had turned and now I was ensuring my mum was OK instead of the other way around. I watched her till she was safely in my cousins’ car.  I did have a feeling of what many mothers feel like sending their child off into the unknown. I have not had children myself so have never had this experience before. It is funny that I am going through it now.

I constantly wonder however, if I am doing the right thing being here. Making meals for my mum that up until February she had been totally capable of doing herself.  But having witnessed her in the kitchen with the pans and the gas, I do feel safer being around.  There has been the odd incident of burnt pans and overcooked food in the microwave.

She also cannot reach for things on the top shelf like she used to. She mutters with frustration and huffs and puffs. When the plate clatters to the floor she cries out in exasperation.  “Why can’t I do this anymore?”. I reassure to the best of my ability, but it is hard watching and waiting till she gets to the point where she needs me.  I know she feels better when I do most things for her but the  current that idea is she carries on doing as much as she can for herself.  I am actually surprised sometimes by what she can do, if I don’t do it. 

But it does take her longer. She will often exclaim in pain as her legs “won’t go” anymore.  What kind of a daughter am I? Of course, I step in.

I am finding one aspect of this memory loss business fascinating though. It is like my mum has a pre-programmed set of responses.  You say something and out comes the stock standard reply.  It is very strange but if we talk at all about my Aunty, my mum then goes on about not wanting to bother her. That “her life is that church”.  The same story, over and over again. 

The people next door also prompt the response “I don’t know who they are”.  Sadly, the neighbours’ house was turned over to the department for asylum seekers a few years ago. A number of families from all points west, have occupied the house in that time. My mum has now stopped trying to get to know them.   So, the stock answer now is always, “I don’t know who they are”.  This is even though she has met the new family and their children several times since I have been here.

I think that because she makes the same response It is almost comforting. She does have something to say. When other people meet her they say, “isn’t she chatty”, “she has her wits about her”.  It is only you who know that she is just repeating scripts she has said many times before.

You mention money in any way and she tells you how she can never forget the rent. This is after her mum was made to feel small by a lady at the corner shop who was owed money by her mum. “I will never owe money” my mum says. But I have heard this same story almost every day since I came to Manchester.  The button to press is just to mention money in any way.

Every Sunday evening my mum begins to worry about the bank on Monday morning. Every Sunday evening she starts getting things ready. She worries about “not paying something” she goes on and on. She walks around from place to place finding what she needs for the bank on Monday. This goes on for a few hours.  I think this may be the beginning of what is called “sundowning” described by the Altzeimer’s Association. Something happens in the evening after the sun goes down to unsettle the person. Making them anxious, talkative, walking.   Currently I am lucky that when my mum goes to bed she generally stays there.

I am getting worried though now about personal care issues. She does let me help her shower. But I have a feeling she will need more help over time.  What happens if I go away?  What am I setting myself up for in the future?  I am doing more and more laundry, but what the heck she thinks I do it every day anyway!

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age, carers, Dementia, Life, Uncategorized

Major upheaval

When people with memory problems go through major upheaval apparently, it can have a major effect on how that person copes. My mum has understood that she needed a new central heating system but I don’t think she quite got it that this would mean huge disturbance.

We tried to keep this to a minimum. I packed all her treasured belongings away in boxes. I even labelled the boxes so we would know where they went back. We kept my mum’s bedroom much the same as possible. It was me on the mattress in the spare room. I had to collapse my own bed in advance of the work.

My mum spent the day of the big works at her sisters and the workmen did do as asked and we were back in the house on the same day with heating and water. This was amazing and I thanked them profusely.

The trouble started as we started to put carpets back and replacing items on the walls and shelves.

Yes, I knew almost where things went back but could I remember the actual positions of each item. The answer was no and my mum did not know either. All she knew was that she had all this stuff and she could not remember where they went. This distressed her greatly.  Even when I decided to only empty one box a day she was very anxious.  It was just more evidence her how bad her memory had got.

When my brother and I disappeared to put the carpets back she would ask. “What are you doing?” a thousand times. Even when we explained, because it was a new thing, she could not remember from one minute to the next. 

Four days on the house is gradually coming back together. I am tired with the physical effort but exhausted with the mental strain. I feel I could sleep for a week.  Thank God for a Bank Holiday. But then again, my mum will be up and ready to go to the bank on Monday because that is what she always done. It will take her a day to realised she cannot go.  Oh, and there is another one at the end of May! 

 

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