My special Mum: snapshots of advanced dementia (our journey together)

[Pennie]

BE, what a wonderful piece, you are so good with your descriptions and feelings, so tender.

It would be lovely to read more. How about having another side-by-side thread for comments and one dedicated for your written pieces? Not sure if that would work though.

 

[Jaycee23]

Keep them coming B. Some people have a way with words that touch the heart and fill the mind with many thoughts and you are one of them! x

 

[Big Effort]

Your feedback

Gosh, I am quite honoured to read all your comments..... write this up for publication?? One never knows. That certainly wasn't my intention, but stranger ideas have been considered..... and the general public has NO IDEA of what carers and those affected with dementia actually go through EVERY SINGLE DAY.

I am an activist by calling, and this would be a whole new slant on activism. I will have to mull over this.

For the meantime, I shall continue to keep notes, for me and to share with you if you are interested. But thank you for the positive energy on a pretty discouraging topic.

Many many thanks, and you know, while I never use names as Mum refuses to accept her diagnosis, perhaps at a later date..... but that feels very vain. Who am I to write?

Loving the heat here, sun sun and more sun, xx BE

 

[Fed Up]

BE

So lovely till the last line Boo Hoo we may be enjoying a humid sweaty heatwave but its all changing tomorrow. So no rubbing in good weather somewhere nice..... Much love Janet

 

[60's child]

Dear BE
Your post just about sums up dementia to me. The sad decline, changes in behaviour, slowly "losing" someone. Your Mum sounds amazing. So much she has achieved in her life. More than many of us ever will achieve. How much you love her and and your sadness at her decline is so apparent in the way you write. I echo what others have said about writing a book. You certainly have a way of expressing yourself that really touches people. I am so sorry you have this awful sadness in your life but am very glad you are a member on here. I have learned a lot from your posts.

 

[Big Effort]

Hi Skye,

Only two years????
BE, your mum is showing such rapid progression, no wonder you're shell-shocked.

To clarify. She wrote until two years ago, but the dementia was already there. As the dementia increased, so did my input into her writing. It took her a whole week in the end to write a 2000 word article, flat out work, but then came the correcting...... And she would have none of that: even then denial was total and complete, so it was so difficult to correct her work.

It illustrates how entire families and even her editor revolved around supporting the person with the illness. She loved to write, it really gave her brain a work out, but my husband and I used to dread the necessary correction to get facts right.

I was glad when she retired at 84.

I have stuff to send you Skye. Need your address again, haven't forgotten.
Take care and sending you warmest greetings, BE

 

[Big Effort]

Snapshot 2: Is that my Mum standing naked from the waist down?

Mum is 86, of a generation of personal privacy. Yet Dementia is biting deep now, aspects of Mum that I perceive to be unshakable, are being shaken.

It was hot yesterday, so I rose at 5, the plan being to set off to build the dry stone walls in front of our restoration project, in the cool of the day. I have to explain also, that blood tests are done early here, between 5 and 6 a.m., so the results arrive in the post the following day.

Out I went, the air balmy like an especially luxurious bath tub. Mmmmmh.... I beat the bounds and just felt the soothing peace of a pre-scorching day, bird song, cats stretched out on Mum's patio, my faithful dog at my heels. Wonderful.

A voice from across the road boomed out.
"A small man was in my house!"
My head snaps up, and there she stands, in a flimsy organza top and nothing else at all. Naked below and standing in her open front door. Here we go again. A small man indeed. What kind of small man, I think to myself. A leprechaun? A neighbour? And at 5 a.m. How would this "small man" get into her house at 5 in the morning when the door is locked. I can hardly bear to engage with Dementia drivel. The beauty and solitude of the morning bludgeoned by the voice of unreason.
"Mum, we live in a village, and you have no clothes on, please get dressed."
With typical Dementia determination, she is not to be deflected. She hangs on to her truth at any cost. Dressed or naked, she is not going to let go of this.
"The small man came back again. But he went away. He will come again tomorrow."

I realise she will not go indoors until I resolve this to her satisfaction. Could the small man be our female neighbour? She is small, but doesn't rise at 5. Could the small man be a hallucination? Don't tell me this is starting up - I couldn't bear that. Tomorrow? Tomorrow rings a bell. Ah, the male nurse who usually comes to take her bloods is not very tall, and he speaks a little English. Enough to say "tomorrow". Who else would come at 5 and flee at the sight of a naked 86 year old, probaly delighted to see him, disinhibited, unaware of her state of undress.

We discuss this possibility. She was right. She quietens enough to let me dress her. Interestingly she has managed to put on her disposable knickers, but her bra has been removed. [Don't suggest I leave her braless, as she doesn't like that, and then tells everyone that she hasn't got one on today.] Getting dressed is distressing for her. Words like horrid and nasty punctuate every item of clothing. "Nasty trousers, not these." "I hate my shoes. I shouldn't have to wear shoes like this, they're awful (implication is I force her into hideous shoes)" If it isn't blue she won't wear it.

When I say dressing distresses her, this is not strictly accurate. It isn't the act of dressing that causes distress; it is her inability to understand, her confusion about the activity that causes distress. She says something new for her: "I can't do this. I am very ill, you know." Interesting, as Mum still denies any failing. Is some inkling of reality getting through?

As I dress her I realise I have done exactly what I have been trained not to do. To see only the wall of Dementia, and not consider the person. I judged her immediately as talking drivel. A small man - how do I cope with a mother who sees small men entering her house????? My mind closes and I know it is Dementia talk, pure fantasy. But, I realise with heavy regret, that she was absolutely spot on. She was right. A small man did enter her house at 5 a.m. On a busy day, when I am trying to rush off to work, I would not have given this display of nonsense a second thought. Condemned without a hearing. Oh dear, how my standards have fallen. How unlike me. I would never, ever have judged a person by their illness before.

By the way, the male nurse did come by, and he will come again tomorrow. It is up to me to be sure she is in a fit state for visitors.

 

[Izzy]

Oh dear. What a start to your day. I'm glad you worked out who it was though. I hope the rest of the day is more peaceful.

 

[Pennie]

If it isn't blue she won't wear it.

How interesting, my mother also won't wear anything but blue now, she used to love her other bright colours and last years favourite pink trousers are definitely OUT!

She is happiest wearing yesterday's clothes, but the act of being being dressed causes much angst - "awful, just awful" as I get the t-shirt over her head. Rising up and down off the bed to get the bottom half done is very difficult for her so I guess it is understandable, but she just doesn't help in any way at all

 

[Big Effort]

Hi Izzy,

Oh dear. What a start to your day. I'm glad you worked out who it was though. I hope the rest of the day is more peaceful.

No worries! That was the start of yesterday. Today I had her dressed and ready for the nurse, blood test done. All well here. Sunny, warm, and she is sitting on her pation stripping red currants of their stalks. Enjoying it.
All is well. Glory be! xx BE

 

[Pross]

BE, I can't really cope with TP at the moment, just feel a need to stay away from dementia related topics as much as possible. But I confess to dropping in from time to time to see if you've posted, you say it all so much more eloquently and evocatively than most of us. I really get pleasure from reading your posts.
Any joy with the summer resident help for your Mum?
Sending you strength and love, Pross. xx

 

[Hair Twiddler]

If it isn't blue she won't wear it.

Yes mum and I are in a situation like this too.
Except .... I have 'stolen' my mum's swimming costume. True it cannot be found anywhere and it is also true that I haven't spent anytime trying to fiind it. But in my defence mum is 86 years old, like BE's mum, and my teenage children would be truely mortified to see Grandma parrading around the house and garden in a swimsuit.
So like many of you will appreciate (I hope) I am ignoring the issue and hoping that it will go away.

 

[Fed Up]

Mortify the children and find the swimsuit, at 60 I've got one! not a bikini anymore but in my house and my garden b----r it I'll frighten the children anyway. But they can cope at 30 !.

Age is not a restriction although "mutton dressed up as lamb" does come to mind. On Tuesday a fellow sufferer like my mum said to me "I'm not as old as you!" very indignantly, I checked still 58 again. And she is at least 80 so age does'nt matter but I'll keep on buying all the anti wrinkle creams and potions I can get.One might work....

 

[Big Effort]

Compliments and creating two terraces

Dear Pross,

BE, I can't really cope with TP at the moment, just feel a need to stay away from dementia related topics as much as possible. But I confess to dropping in from time to time to see if you've posted, you say it all so much more eloquently and evocatively than most of us. I really get pleasure from reading your posts.
Any joy with the summer resident help for your Mum?
Sending you strength and love, Pross. xx

Goodness me, but that is some compliment. I had to read it a few times just to take it in. What a really nice thing to say to me, but the funny thing is I can't imagine why. I thought most of my posts are whinging and whining about Mum having more dementia than I can cope with. Quelle surprise!

I know what you mean about staying away from anything to do with dementia. Best Beloved and I have had a full week together, rather we have worked side by side on our house to let every morning for a week. Apart from seeing very real progress, it is so nice. We each work on some little project, occasionally saying something, breakfasting together in the early morning sun, pulling together if the stones are too heavy for one person. Shovelling tons of surplus soil into our van to take away for recycling. How anyone could find this blissful, I don't know. But we do.

Our lovely friend who stays for a week once a year is off again tomorrow morning. Mum doesn't do well with departures, so tomorrow will bring a whole new scene.

I will post our new terraced walls (house on a slope so too dangerous to let in winter due to snow and ice0, and we have created two levels, with retaining walls. Amazing what can be achieved in two weeks when one works there consistently.

Daughter gone off to Germany to work, so it is just us three. I wonder what my next posts are going to be like?

Love to you Pross, and all of you out there in Dementia Land. xx BE

 

[Big Effort]

Snapshot 3: Skills declining

Hello all you lovely, understanding people.
In my third snapshot I wanted to share my observations on how rapidly skills can decline, and how dreadfully low in skills someone with severe dementia can be. The purpose of this is to remind myself, primarily, of how little Mum can actually do. Because she looks basically the same as her old self, I can somehow overlook how little she can do. I underestimate the risk in having her at home alone (even if across the road from us).

The past two years, Mum and I have made a lot of jams and preserves. First there is such an abundance of luscious fruit here in France - free most of it. Cherries, quince, strawberries, apricots, rose hips, sloes, greengages, elderflower and so on and on. Second, washing, preparing and chopping fruit for jam making is repetitive and easy, something we can do in companionable silence, listening to music, and remembering how she and Dad sold their produce to Harrods and Liberty.

Since hearing my brother had a serious burst aneurysm in January, Mum is vanishing before my eyes. Here is an example of a timeline of Mum's ability to strip redcurrants off their stalks.

9th July (so just 9 days ago)
I picked a large bowl of luscious redcurrants which a neighbour donated. French redcurrants are nothing like Irish ones. They are fat, glossy, and sun-ripened, an explosion of flavour in the mouth, sweet and tangy.

While hubby, daughter and I worked on our house-restoration, building a stone wall, Mum used a fork to expertly rip ripe redcurrants off each stalk. She worked well, and thoroughly enjoyed it. The first task she has undertaken in about 3 months. Only at the end did she decide she needed to hand-remove the little black dot on the base of each currant. A job well done and 3kg of clean berries were put in the freezer (too hot now to make jam).

11th July
A dear friend arrived today to spend a week with Mum. It should be wonderful for her. In the morning I gave her another bowl of redcurrants to strip off their stalks. She couldn't remember how to use the fork to strip off the berries. She kept reverting to picking each berry off the stalk by hand. I showed her repeatedly. Within seconds (3 perhaps) she could not remember what to do with the fork. The resulting berries were mashed and bruised as she used the fork occasionally to spear a bunch of redcurrants. Then she would use hands to pick each berry off.

18th July
Last day of friend's visit. Other Dutch neighbours brought Mum a smallish bowl of redcurrants to prepare for freezing. Total lack of understanding. She jabbed around in the bowl with a fork. Her friend helped to strip the berries off the stalks using a fork. Fast and efficient and very, very easy. So Mum had a permanent 'How To' example beside her. She could make neither head nor tail of it. Just too complicated. Within about two minutes she gave up and sat watching our friend, who went on to finish the job.

Two interesting little footnotes: Our friend is very patient, but I could observe how even she found constantly explaining to Mum how to use the fork stretched her credibility limits. Mum shows no sign of noticing her rapid drop in skill. In fact I don't think she even remembers having done it on two prior occasions this week.

Conclusion: From able and competent to totally confused and passive within a week.

Her dressing and undressing skills declined in a similar way.
You know, this really hurts. How could anyone find stripping redcurrants too complex? But I have seen it with my own eyes: using a fork was too complicated.

How can I bear it? My Mum was such a gardener and a marvellous cook. Look at her now. Hugs to all, BE

 

[lilysmybabypup]

Hi BE,

I haven't popped into your thread, lots going on right now.

I'm so sorry for your sadness, it's heartbreaking to watch the slow unravelling of a loved one, isn't it? It's even harder when it's sudden and swift. I know exactly what you're feeling. When I trace Dad's journey, it's showering that shows his decline clearly, sometimes suddenly, sometimes gradually.

I started helping him when Mum became ill this time last year. I would only need to direct him in getting undressed, get the water running for him, he would wash himself, and turn off the taps, and dry himself. I would give him the clothes in order so he could put them on. Sometimes it would literally be one day he could do something and the next day he couldn't and it was permanently lost.

The days just before hospital, his contribution was, when I put soap in his hand and told him to wash his "boy bits", which had become a little cursory. He would towel his hair dry over and over until I took the towel, and help me as a baby might as I dressed him, arms up and down, pull his pants up after I got them to his knees, and lift his feet for socks and shoes. He would always start to button the shirt but after one, would stop. As distressing as it was to witness that decline so graphically, I wouldn't exchange that ritual for anything, they were our special times when he would say, "good, good, good," as I rubbed in the skin lotion, or "thank-you Mummy, I love you Mummy," as I dressed him.

These moments are so bittersweet, aren't they? Glad you have a chance to create some cherished memories with your mum, and sad that they so clearly highlight the lapses and losses she's experiencing. It's a real heartbreak, isn't it?

Wishing you more good times than bad, and strength for the hard times.

Big hugs,
Stephanie, xxx

 

[Big Effort]

Snapshot 4: Dementia = Loss of Mind

I have just read someone's definition of De-mentia as Loss of Mind.
Mum is pretty predictable in that she doesn't deal with departure well. A dear friend left after a week of holiday here - left at 7:15 a.m. and by mid-afternoon Mum was in full Dementia Flight.

Really tough. You know, I can't deal with this. I can handle the physical stuff no problem, showering her, cleaning the loo to keep it fresh, dumping the endless tidbits of tissue and loo paper that make up her obsessive need to keep her disposable pants dry.

But the Dementia (loss of mind), now I am not adapting to this at all well. Hubby too, it does his head in.

Here is a brief interlude into our Dementia Encounters.
Mum seems to be losing her ability to understand how to eat. By this I mean the getting food off the plate and into her mouth. For lunch we ate crab sticks (bought for her because she loves them, but she doesn't know that), cheese, a slice of bread. So pretty simple to 'understand'. Crab sticks are finger food. Cheese goes on bread and into mouth. Her IQ just doesn't stretch to that. Non comprendo. "What is this? How do I do it?" Endless puzzled looks and shrugging of shoulders. Little food being eaten. So I cut the bread into cubes and put a little bit of cheese on each piece of bread. I cut up the crab sticks. Eventually it got eaten, but she clearly felt I was pulling a fast one on her. Martian food perhaps?

Tonight for supper I tried finger food. Tiny cubes of bread, each one spread with something tasty. Cream cheese, humous, pate. And a bowl of luscious fruit salad - which she adores. We live in France so the fruit is all fresh: quartered apricots, halved strawberries, melon, pineapple chunks, kiwi slices, whole stoned cherries, topped off with creme fraiche. It looked simple: a plate of finger food and a bowl of fruit salad.

We have had enough Dementia for today, so ate on our own and I let her make her own way with supper. Oh my! I saw fruit salad juice on the plate, and found pieces of bread and pate floating in the fruit salad bowl as she had left the juice.

I am not feeling too flexible right now so asked her why she put her pate in the fruit salad. Quick as a flash and twice as fluent she replied: "Because I like it that way." When she feels criticised, she can answer in full sentences without thought. It is automatic.

Next I suggest she goes to bed. OK but "Do I have to take these off (clothes)?" I nod. "Well I am not going to wear that (her nightie). I hate it." I point out that there is a whole lot of things she hates at the moment (including me!). "Well, I am entitled to hate my nightie. Look at you. Look at all the things you hate."

Then she wants to show me what the neighbours have done. She points to the hedge that separates her property from the neighbour. "Look" she says, pointing to undisturbed earth beneath her hedge, "the neighbours dug their side of the garden and they threw the earth on my side." Needless to say it is utter rubbish and anyone can see her hedge and its underpinnings are just as they should be.

I have heard and seen just about as much Loss of Mind today as I can take. Husband feels the same. How long can I deal with someone making no sense of anything and yet able to twist what she says, aggressive with me, unhappy with life.

Right now I just feel switched off from her. Uncaring. I want to leave her to her own devices. She knows she is right. She sees nothing wrong in dumping pate into fruit salad, or hating a nightie that she liked yesterday, and believes every word she tells herself. Where will it all end?

It might be me who opts for the asylum. A double room for Best Beloved and I.

I saw this on the Wikipaedia Alzheimers page and it really fits the bill:
"Subjects also lose insight of the disease process and their limitations (anosognosia)"
This just about sums today up. No insight and complete denial. And this drives me crazy and shuts me down totally. I want away from this madness.

Here is a link to anosognosia: http://en.wikipedia.org/wiki/Anosognosia

You are seeing me at my most infantile and pratt-like. Apologies. But no one could put up with this level of Loss of Mind for long. I am going mad.

Good night to all, and may tomorrow be better. BE

 

[Bumblegirl]

Oh dear - it is so waring and you are so fed up with it. Who can blame you? None of us.

You were looking for a carer for your mum- how is that going? Are there any other options such as respite care?

Look after yourself.
BG

 

[Pross]

Hi BE. I'm so sorry you are having to cope with your Mothers's decline daily like this. I do feel for you. I realise everyone's experience is difference so I'm not sure it would be fair to you to say I know how you feel but my experiences are similar though Pj's decline has been more rapid. I ranted, raved and screamed at the end of last year and earlier this year. Now I think I've come out the other side and into calmer waters. I have had it proved to me so often that my husband can do very little, understands very little, says very little. I no longer expect anything. He smiles a lot, possibly a reflexion of my more relaxed attitude. (Most of the time!) . I try not to dwell on what he used to be able to do, what we did together. Sometimes I miss him terribly, the pain is extreme, but it doesn't do to go there. I can now smile ruefully when he puts tomato sauce onto a jammy dodger biscuit instead of his fish fingers - what does it really matter? And I now cut up his food rather than try and make him use a knife as well as his fork. (Cue another rueful shake of the head when he then picks up a knife to cut a biscuit in half.)

This is such a hard and tragic journey we are all making together, isn't it. Don't beat yourself up too much. You're allowed to hate dementia and what it does to all involved, carers as much as the cared for. You're allowed to feel you've had enough and don't want to be involved any more.

Love, big hug, Pross.

 

[Big Effort]

Dear Pross,

I have had another day in Dementia Land. Actually on balance, it wasn't bad. Mum was in a good humour, noticed things like pretty flower gardens on our way to the house we are restoring.

But my limit is reached. Dementia goes on and on and on. Hubby and I agreed I would provide her lunch and she could eat it in the garden (so we didn't have to watch). Food all gone and we weren't so upset we couldn't eat.

But it continues.
Pointing out the window.. "The white...." White what? No point in asking as she can't tell me, and probably doesn't know herself.
It is impossible to get her to have a nap. Today after lunch she wanted to lie down. Really? So I got her lying in the recliner. After much effort. But she wanted to be up within two minutes.
"Where's my dog?" repeated once every minute or two.
Endless misunderstandings. All hers. But as she is in denial (anosognosia), we are always at fault. So that sparks bad temper.
I am still reeling after the numerous issues on Wednesday and Thursday.

I have a carer coming from the UK in mid-August. I hope. And I don't know if I can wait that long.

Now I have little fantasies of imagining visiting her in a care home, clean and showered, fed and watered, and being PLEASED to see me. Over her dead body as she told me herself. She is not going in to care.

Now, I want to write a proper post on this Anosognosia. Mum isn't in denial, she has anosognosia. Why don't Alz Org leaflets deal with this? Now I know why she is so convinced I tell lies, why I took whatever is missing etc.

Will take a shower, gather my strength and then try to write my next Anosognosia post.

Thanks Pross. I hope you can 'enjoy' those glimpses of PJ, and that he keeps smiling. The smiling is your evidence of having made the right decision for him. But it doesn't mean you aren't home alone, missing a loving relationship, your 'real' husband, life as it should have been. That is so cruel.

I appreciate your support hugely. Love from me xxx