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.

Standard
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.

Standard
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!

Standard
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! 

 

Standard
age, carers, Dementia

Learning how to care for my mum

c

I moved to Manchester to care for my mum. I moved into the house I was born in, in order to keep things as much the same as possible.

One of the most challenging things is that my mother keeps asking me where things are. Where to put things. It often feels like she is accusing me of moving everything since I moved in. But I realise that she really does not remember where she has put things in the past, or worse still in the last few minutes.

We begin the morning by my mum getting up and me then getting up to rush downstairs to prepare her breakfast while she washes and dresses. It is important to me that she does this in private for as long as possible. But I am beginning to get concerned when she puts a jumper on again that has clearly got stains on it from yesterday’s meals.  I don’t think her eyesight is too good.  But to tell her about this causes major upset as she feels this is just evidence that she is not coping. It is actually her family’s way of maintaining her standards of dress. She would never in the past wear something with a stain on it.

Downstairs I get breakfast. My mum is often breathless by the time she reaches the table. I think it is important she takes a rest. So, I have made the tea and warmed the milk for her cereal. She can do this but why shouldn’t I care for my mum at 84.  I struggle with the issues of letting her do as much as she can for herself, but as the same time being kind and caring for my mum.

She has a choice of cereal usually one of two. Too many and she looks at me at a loss. Too much choice is really, too much.  When we were out shopping the shelf upon shelf of cereals available in the store was overwhelming.

I think the same is true of clothes which is why she sticks to a very small wardrobe choice.  Her wardrobes and drawers are jam packed with stuff but she refuses to cut down. If I choose then I always choose the wrong thing. If she makes a choice it takes ages and then it is what she has worn before.

She gets very anxious, if she has to change her jumper or skirt due to stains. She then criticises me for my alternate choice. She is then breathless about the whole episode and if we preparing to go out it just gets worse and worse.  We finally made it to the car to go shopping on Saturday afternoon but she declared she was now too tired to go. I agreed with her.   She stayed home and fell asleep and I went off and did the shopping.   I returned to her upset again “for putting on me” despite me saying everything was OK.  Sometimes I don’t know what to do for the best.

 

Making meals for my mum is also a challenge. She is not eating as much as she used to and dislikes meals that she is unsure of. Everything has to be really plain cooking. Meat or fish and Veg.  This is fine. It is an actual bonus for me as I am losing weight if I eat with her.  But she is having some difficulty eating and swallowing now, thus the stains on her clothes. She often misses her mouth and is choosing to eat with her fork in one hand and nothing else. She tries and cuts things with the fork and spoons everything in.

I have read about this in older people with dementia, I have seen it when I was nursing.  There are special plastic adult bibs to obtain to assist.  But this is my mum!  Again, if I draw attention and offer a napkin, she looks at me annoyed.  She knows I am watching her which must be a terrible pressure. I am trying not to. But my old mum would not do this. I try and make conversation. I try and make things as normal and routine as possible but I am not sure my mum enjoys meals now.

I am especially concerned if we go out to eat as this often happens there too. I just eat my dinner and try to ignore. I hope no one notices because I am trying not to notice.  But at least napkins are more acceptable there.  She used to love going out for meals but can be over-faced by the size of the portions.

After dinner at home she likes to help and to wash up. I am sure my washing up is not to her standards. Actually my washing up has left a lot to be desired over the years.  As many friends can testify. However, mum is now washing up and huffing and puffing in the kitchen.  I ask her if I can help and she looks at me upset “where does this go” she asks?  “I just can’t remember, why can’t I remember”?

Standard
age, carers, Dementia

My mums perspective

 

I can’t get going in a morning. I just can’t seem to get my breath. I get up and it takes me ages to get dressed. But I would rather do it myself, for as long as I can.  I have lots of clothes but don’t seem to go anywhere now to wear them. I wear the same old things because they are comfortable.

I go downstairs and my daughter (my newly acquired carer) has put the kettle on. Set the table and is warming my milk for my cereal. I used to be able to do this all myself but she has taken it upon herself to do it for me.  It is nice but it makes me feel that she doesn’t trust me anymore.  I can get my breath back at the table while she fusses about me though.  I wonder where Tommy (the tortoise) is today?

After breakfast, I know I must take my tablets. I often go and have a rest in the living room and drift off to sleep again. Sometimes I don’t remember my tablets till much later. Now my daughter reminds me. Trying to make me do it as I get up from the breakfast table to make it routine. I don’t like being told what to do. I don’t like being made aware that I might forget.  I take them under sufferance and then I must take that awful new puffer thing for my breathing. I still ask every time how to do it.  I don’t know why I am taking it. My daughter talks me through it.

Then, I am allowed. to go and sit in the lounge. I quickly drift off to sleep. I sleep a lot now. I don’t know why, but I don’t see why not. What is there for me to wake up for? 

I awake to my daughter carrying a load of washing. “You’re washing again”! I exclaim. She washes every day. I only used to wash twice a week on a Tuesday and Saturday.  I don’t know where all this washing is coming from.  I wonder where Tommy is?

I am really frightened of forgetting something. I used to have a routine but now it has gone. I just feel all over the place. What are we doing today? 

My daughter comes back from the shop. She gets the papers in the morning now. I used to go myself. I feel she doesn’t trust me to go now.  I can but it takes me longer to get there and back.  I used to go to lots of places on the bus. I don’t do that now.  I like to have the papers but only for the crosswords. I couldn’t tell you what is in the news. I am finding harder to concentrate on the stories. I don’t read magazines like I used to either. I would just rather sleep to be honest.

My son bought me a lovely hanging basket for Mothers day. It is beautiful with bright yellow flowers. I can’t reach it to water it though. I tried, holding on to the new handles on the front step. But I still can’t reach. I get upset. I worry at yet another thing I cannot do. My daughter will do it while she is here but what if she is not.  I hate being dependent on other people to do things that I used to do.

Where’s Tommy?  We can’t lose him.  I can’t lift him anymore he is too big and heavy. But he has been my friend for many years now. He may outlive me.

“I don’t know what to have for my lunch”.  I say out loud.  My daughter asks what do I want. I have no idea. I can’t remember what I had yesterday. I can’t remember what is in the fridge. I can’t be bothered right now to go and have a look. My legs are tired, my knees are aching and I wobble when I walk. My knees are worrying me a lot, I sometimes fall back into the chair and I have to get up again. Good job the chair is there.

My daughter has bought me a pot elephant. She insists on writing on it.  It’s meant to remind me of things but I hate it. I hate being reminded that I am forgetting stuff. I have moved it to try and hide it. I don’t want any visitors to see.  I clean it every day. My daughter gets frustrated. I can feel it.

My daughters got the hoover out again.  I only did it the other day. She thinks I do nothing. I always clean on a Tuesday and Thursday. I have done for years. She makes me feel that I don’t have a clean house. It is upsetting. I would get around to it eventually but I have all day now that I am retired. I don’t have to rush like I used to. I just need a minute to come around.  She thinks all I do is sleep. She might be right.

I can’t remember what we said we go to the shops for today. I know I made a list. But where did I put it?  I know I started it but I can’t think what I want. It is awful!!  My daughter finds the list and we review it together. It is good to have a list but I am frightened of forgetting something important. I get upset. I don’t know why I am doing this. I don’t want to go. 

I don’t like asking people to take me anywhere. I hate being dependent on other people all the time.

My daughter says she lives here now. But I don’t want to spoil her life. I don’t want her to give up her life to look after me. It’s not fair. Its company but it just keeps reminding me that I am not coping by myself. I don’t know why she would want to live up here. Where’s Tommy?

Standard
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.

Standard