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, 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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age, carers, Dementia, Life

A Victory

 

Well I just want to record a minor victory. My mum has just been out into the garden and sat in the sunshine for fifteen minutes. It was warm and lovely. She could see the plants rushing into new spring life and pass comment on the pretty small daffodil bulbs she and my brother planted late last year. We tried to do the crossword.

It was a victory as, despite the weather being beautiful and sunny today, my mother refused to be taken out anywhere. Yet she complains constantly about just sitting in the chair and falling asleep.  I am willing to take her anywhere she wishes, but any suggestion has been met with a definite “No!”. 

But the weather has been too nice today to ignore. I am sure a little bit of sunshine will do her some good and now she is asleep in the chair again.  Vitamin D?

 

Mother’s day or Mothering Sunday, is causing some anxiety. Apparently, she normally spends this day with my brother, but his wife is away and I am happy to cook instead. We have invited my Aunty to Sunday lunch too. It should all be lovely, but my mum is anxious. She really would like to be left alone. She says there is too much fuss about these things now. She is right.  The advertisers, flower providers and restaurants do a roaring trade around this time.   making people feel guilty if they don’t spend huge amounts on their parent. She said it used to be just about flowers. But you never know how many mother’s days there are left, so we are gently, ignoring my mother and we will celebrate anyway.  I have not spent Mother’s day with my mother for many years.

My mother loves freesias. After spending some time in Guernsey, the Channel Islands, I came across a freesia farm and always try and get her some of these beautiful aromatic flowers for her birthday or mother’s day.  She had some in her bouquet at her wedding nearly 61 years ago. 

When the parcel arrived yesterday, well you would think I had sent her something awful!  She just does not like a lot of fuss. “Why are you spending your money on me?” She snapped. “You don’t have to, you know”.  Sometimes it makes you wish you had not. 

Not really, I like buying her things even if it makes her mad.

 

Oh, and the new hand rails on the doorstep. “That was a good idea of mine, to get those, wasn’t it?” She said.

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age, carers, Dementia, Life

Anxiety Transference

Today I helped my mum get ready for church.  She was up by herself all washed and dressed. She had made and eat her cereal breakfast.  I brought her coat and shoes from upstairs for her. She looked lovely, as she left the house for her lift. I found myself feeling proud. 

The pride that a mother must feel for her child as he/she goes off to school, or to an event.  My mum has not been to mass for a couple of weeks. She found the stress of getting ready for a certain time too much. Today she was up, ready and raring to go.  I smiled as she confidently left the house.

My mum has been saying for the past few weeks that “You become the children and they become the adult.”  Apparently, her aunt used to say this a lot, as she herself got elderly.  However, my mum has not been enjoying the experience.  She hates feeling dependent upon other people for lifts, for help, for anything. She wishes she was still independent.  She continues to say “she does not want to spoil my life”.

But her anxiety about stuff, about forgetting to do things, keeping appointments etc. has become mine.  I now worry a lot about all this “stuff”.  Has she taken her tablets, is there anywhere she should be? Do I know everything in order to ensure she does not miss important dates.  I find myself really tired as I check stuff all the time.  I check so, that if she asks “have I done…?” I can confirm that she has, without her having to get up and check the calendar or the medicine box.  I wonder how many times she did this when I wasn’t here.

 

I have also been growing anxious about her getting up and down the front steps to the house. She manages them and takes it slow, but she is very frightened of falling.  So, I arranged for handrails to be fitted.  Much to mum’s horror and shame.  She really did not want people to know that she is needing a little help now.  White handrails on your front door do advertise it to the world, or the street at least.  We argued about the her needing them, the fuss of getting them, the reality of having them as “she is fine” and does not require them!

But descending the steps on her way out to the car today, she said.  “Oh these handrails really are good”.  I laughed and cried at the same time. I wish we did not have to have all the angst beforehand, it really is draining me.

 

She returned from church in buoyant mood. The priest had asked her where she had been for the last couple of weeks. My mum had confidently replied “here, where else have I been?” 

I then made a big mistake and reminded her that she had not been. as she had found it difficult getting up and ready in time. A row ensued where I was accused of not believing her, no one believing her.  I learned basic lesson number one of caring for someone with memory problems.  Never argue.  There really is no point for either of you. You both end up feeling bad.

 

We are settling down to Sunday lunch now. The meal I have taken over preparing in order that mum only has to think about church on Sundays.  She had become anxious about getting back in time to cook it. So, we are relaxed again, for now.

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age, carers, Dementia, Life, Uncategorized

Independence to dependence

 

Before I came to live with my eighty-four-year-old mum, apparently, she was doing the cleaning, the washing and the ironing. She cooked her own meals and one for her son once a week.  She needed transport to the bank so my brother took her and my aunty stepped in to take her shopping on a wed and Saturday.

Hmmm but was she doing all this stuff?  We have rows now about me doing the cleaning on the wrong days!  She does it weekly she explains. “Upstairs on a Tuesday and downstairs on a Thursday”.  When I say, she has not done it since I have been here, she goes ballistic as if I am calling her a liar.  I am just explaining it needs doing.

When I come downstairs with washing after changing the beds, again she verbally attacks me. “Where has all that come from? I only wash twice a week”. So, I don’t do it.  After a couple of hours she then goes to the washing basket and again asks me “where has all this come from?”.  I explain again and we relive the two days a week washing rule again.  This happens every week.

Every time I take out the hoover I get accused of making her feel that her house is dirty. That I believe she has not done it.  I don’t believe she has not done it, I know she has not!  But I am happy to do. But she greets it all as if I am criticising her.  I am honestly not, just getting things done.

She falls asleep a lot.  Then when I try and coax her out to do things she gets flustered. When I coax her to phone for her home chiropodist to come as her feet need attention, she says she will do it. But then time goes on.  She says her feet hurt, so I coax her again to phone to make an appointment. She says irritably “I’ll do it!”  Later that day I encourage her again. Offering to make the call.  “You don’t trust me to do anything, do you?”

“Where’s Tommy?” She asks for the umpteenth time today.  Asking about the tortoise behind the sofa.

I get her the phone and the address book and she makes the call.  We write it on the calendar.  Then she looks at me as if I am mad.  “That was simple she says”.

She makes her breakfast and has done her lunch today. I offer to make her, her tea.  I am just trying to be nice. “You can if you want to” she says.  I just don’t want to do everything for her, I want her to remain as independent, for as long as possible.   She says thank you afterwards and we agree it always tastes better if someone else has cooked it.

 

“There’s nothing on the telly tonight she says” but she watches anyway and falls asleep.  I ask her what has happened in a soap we both watch. “I don’t know” she says and she clearly does not.  A lot of it is going over her head now. Background noise.  She cannot follow a detective plot at all.  She finds reading hard too.

She is looking at the calendar now just to make sure the appointment for the chiropodist has been written down. She asks me what date it is today and what day it is.  I have written on what she does on the regular days to help her. She chides me “you needn’t write all this on the calendar you know, I can remember!”  “Is B coming shopping with me tomorrow or is it you?” she asks.   I reassure it is her sister coming at the usual time.

 

Then she laughs as I help her in the shower. We are now in a routine of twice a week.  She was too scared to get in on a regular basis before by herself, because she was scared of falling.  We make a joke of her shower cap. I remember to warm the flannel as it was “too cold” last week.  I make sure her feet are dry and moisturised. She says how funny it is that the children have now turned into the parent. 

I say night, night and she sleeps.

 

I live every day with my mum’s frustration with herself.  The world is getting very distressing for her. She loses things on a regular basis. She gets upset. She says “it’s just stupid”.  She knows she needs help but does not want to accept it. She does not want to “spoil my life”.  I reassure her that I am here because I want to be. 

She accepts that getting up the front and back steps is an issue. I rang the council to arrange for handles to be put on to assist.  When I say what I have done, she gets really angry “I don’t need them yet!”  After discussion, she says it is OK but I bet we have a ‘hoo har’ when they come to put them on.

Then she asks “when are you going back?”  She still has not quite got it that I am here to stay for as long as she needs me.  I am not quite sure whether she wants me to go away for a bit.

I am having a life outside my mother. I do Yoga and Salsa and have also joined a choir.  Weekly activities that get me out of the house as well as part time working. This is the case for now. This may change in the future.

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Dementia, Life

Crosswords

 

My mum is a very intelligent woman.  She has been completing crosswords all my life. My Dad and my mum used to do this together and it could be very amusing to witness.  My dad was not as good at spelling as my mum, so he would know the answer but not know how to spell it.  Likewise, mum might not know an answer but my dad would. They had great times doing this for years. They bought two different papers every day just for the crosswords.

 

Since my dad died in 2010, my mum has had to rely on help from my brother; my aunty and me when I visited. Since living here this has become a ritual in the afternoon. I confess having to rely on my mobile and google, on many an occasion, to finish the puzzle.

 

But doing the crossword, now my mums memory is letting her down, can be challenging. Asking clues interspersed with “where’s Tommy” our pet tortoise.  Since it is winter he has not moved from his comfy space behind the sofa and near the radiator. He only comes out for food occasionally. But mum constantly asks where he is.

 

 

 

So, we are set up doing the crossword and my mum amazes me with her knowledge and experience of crosswords and knowledge of words I have never heard of.   

 

Slow music? She asks.  Is it largo?  I haven’t a clue, but on checking agree that she is right.  I am amazed at how much her long-term memory is holding. She asks another clue and then I try and look up the answer.  I find it.  I say the answer.  She then looks at me dazed and asks “what did I ask you?”.  She then gets more puzzled as she cannot find the right place to put it on the grid. “I’ve lost it” she says.

 

“Where’s Tommy”.  I reassure that he is safely behind the sofa.

 

Once the clue is found we identify how many spaces it has, whether there are any letters in it.  Sometimes she gets confused and reads out the wrong clue, but we eventually complete it and off we go again.  This repeats several times until the crossword is nearing completion.  She then gets frustrated if I am unable to help, as I have moved on to another topic on my mobile or laptop.  She throws the paper aside and exclaims. “I can’t do it today”.   She looks around concerned and enquires “where’s Tommy?”

 

 

 

I ask her to repeat the clue she cannot get and we return to the process. She stares unseeing at the paper, then finally finds the missing clue and I produce the answer thanks to google.  “Oh, yes she says, of course”.

 

When we finish the crossword, she looks at me very pleased. “We’ve don’t it”. She exclaims with glee.   “Where’s Tommy?”

 

 

 

 

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Dementia, Life, Uncategorized

Memories

In my mum’s house, there are lots and lots of things. Object d’art,  brick-a-brack, pottery, figures, boxes etc.  My mum says she will need to have a clear out, but the prospect of which is too hard to contemplate. Each item is a memory of a place or a time. A holiday, a day out, an adventure.  Her whole life is there in the things around her.

To me it just looks cluttered. I have no connection to any of the items. If I had my way the majority would be gone to the charity shop.   Even when she points out that we got this or that on some visit or other., it means nothing.  I am not a “thing” person.  I have learned to travel very light and possessions really do not have any hold over me.  They are exactly that “things”. People matter much more.

But my mum’s things are hers. She can describe where each one is from, even if it takes her a minute to recall.  She is lost then in a reverie of delight as she remembers the weather and the day and the circumstances of the purchase. We can start a long conversation about an item or two which sometimes is a good way of entertaining her.

This is to be preferred than the hours of time she spends in the chair in the silence.  I personally am finding great difficulty with this. But with the trappings of modern technology e.g: earphones, I can listen to radio 4 and my mum can have her silence. I am in a dilemma though as to whether all this silence is good for her.  I offer music, the radio, the TV.  But, of course, we don’t have the TV on till after 5pm in the afternoon!  I retire to my room as a coping strategy to watch what I want, however I am aware she is downstairs alone by herself. 

So, we will talk about the history of the green vase. A ceramic bought from the factory shop many years ago.   Oh, and now I have found some old photos.  It is good to look back and get the names of people I never knew. They are after all a part of my history.  I may have to remember them to pass on to younger members of the family. Sad they are not here to share with my mum.

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