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

[jaymor]

Hi BE,

Another day in dementialand. Yesterday my husband was finishing his lunch when we arrived. He had a lovely bowl of apple pie and ice cream. His plate with a few left over chips and the remnants of fish was till on his table. He pulled the plate back over towards him and started spreading the melting ice cream on a chip. No amount of coaxing could stop him so we left him to it with a rye smile on our faces, a bit like looking at an indulged child. Then his carer said " I wonder what that tastes like" and my husband turned to him and said "try one". Monday, Tuesday and Wednesday had been really bad days for him, no talking, charging around, all in all not in a good place. Yesterday and today fine. Is it the heat?

It really is difficult when even the most simple, basic knowledge goes. Our 18month old grandson knows what to do with a spoon, his granddad does not know what it is let alone what to do with it. So very hard to watch, so hard to accept.

Like Pross I can now accept and smile, a very weak smile but non the less a smile. It is surprising what is left of my husband at the moment and we manage our visits around what there is. When dealing on my own with this at home it was so horrendous and unlike you I did not have a family and job to contend with.

I raise my hat to you BE and everyone else having to juggle everything and deal with a loved one with dementia. I wish I could say it will get better but then you would all know I was lying.

Jay xx

 

[Butter]

hello BE ..... I am kind of catching up with you and your mum and the disintegration that dementia can be.

I have been on this site for over a year now and have done a lot of reading (our son would tell you I am making my husband's dementia my hobby) and have a couple of observations that it might be useful to share here.

As far as I can see, there are some posters - partners, children and - particularly - sufferers - who seem to succeed in a balancing act between the dementia world and the non-dementia world.

Of course it probably doesn't seem like a success to them. But it seems to be a mixture of accepting and adapting while moving on. That may sound a bit wishy washy but the way you appreciate your mum's version of a meal or of dressing (or whatever) ..... seems to me that is exactly what you are doing. She may well be happier eating alone. Our son has pointed out to me that my husband would prefer to eat with the radio or the television. Not anywhere near his family. Especially not near me.

So I hope you will continue to share your journey with your mum with the rest of us. We are all learning as we go.

 

[Moonflower]

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.

Oh BE, you have cheered me up so much. My mother has anosognosia - her lack of insight into the blindingly obvious is stunning at times. And the confabulation that comes with it - the medicine she is on makes it look as if there is poo on her pants, nobody has ever shown her how to use a phone so how would she know what to do - etc etc etc.
So, having seen that you are going to post on this subject, and putting off the ironing, I did a bit of internet searching - apparently anosognosia can be temporarily alleviated by squirting ice cold water into the left ear of the sufferer. I don't think I feel quite brave enough to try this one but the idea did make me smile...

 

[Big Effort]

To dear Butter:

I have been on this site for over a year now and have done a lot of reading (our son would tell you I am making my husband's dementia my hobby) and have a couple of observations that it might be useful to share her

Snap! My husband and my son HATE me to "waste my time" here. They think it is the most time-consuming, trivial exercise and rarely cease to harangue me about it. I explain time and time again that the forum (well actually the people on it) are my life line, my way of coping. This is a fact. I know that I would not cope without a place to let all my hurt and pain out, without a space to hold out a hand to others in distress. So hobby or no, it is a line on a map that guides me from Pain to Coping.

Thank you for writing this. I have had such help and support and deep sharing with people I have never seen and don't know. This is one gift Dementia has inadvertently brought into my life.

You are right about Mum and eating alone. She can do her own thing and we don't have to see it. Pain and suffering spared all around. The downside is, though, that if I continue in this vein, I wouldn't spend any time with Mum. She loves her Jane Austen, she reads a bit too, but it upsets me to think she is in my care and she spends so little time engaged with us. I can't engage at the moment because everything she says, does, doesn't say or doesn't do drives me bananas.

I would not say I am adapting or coping well right at this minute. More like stock taking. And I notice that the shelves are bare, the stocks aren't just low, they have run out. I am running on empty. Need the help of a carer. Too much Dementia going on.

I can't believe it is me writing this. But I have a boil under my arm. Have had a stint of amnesia and hospitalisation. Feel tearful and sorry for me!! There is only one thing worse than being mad myself, and that is living 24/7 with total Dementia.

So from one TP hobbiest to another, keep sharing. Life is better that way. Hugs, BE

 

[Big Effort]

Hi Jay,

What a love you are! I have two PMs from you, can't read them yet as they make me cry.... but you will get a response. Right now I am just 'spilling the beans', writing and writing so it settles a bit inside. Then I can lift my head and actually read, understand and respond in an appropriate way.

My distress is overwhelming right now.
I am glad your Pete can enjoy chips with icecream. He is telling his truth. Mum also enjoyed her fruit salad with bits of bread and duck pate floating about. She told me she liked it that way. Her truth. But I find watching these truths very very painful. Because pate and fruit salad don't taste as good together as apart - and this is more evidence that Mum's level of thinking and her IQ available is very very low. And she was such a vibrant, smart, dynamic, wonderful woman. If she knew she was doing things like this she would want to end it all. Instead, she knows there is nothing wrong with her, and she will fight to the death of me to live on forever in this vein.

Anosognosia. That is the explanation. It helps to know.
When Pete is ready, tell him I send my love. Hugs BE

 

[Big Effort]

Anosognosia

Hi Moonflower,

I am delighted that you found this interesting. I read the same data as you about the squirt of ice cold water in the ear!!!

Oh BE, you have cheered me up so much. My mother has anosognosia - her lack of insight into the blindingly obvious is stunning at times. And the confabulation that comes with it - the medicine she is on makes it look as if there is poo on her pants, nobody has ever shown her how to use a phone so how would she know what to do - etc etc etc.
So, having seen that you are going to post on this subject, and putting off the ironing, I did a bit of internet searching - apparently anosognosia can be temporarily alleviated by squirting ice cold water into the left ear of the sufferer. I don't think I feel quite brave enough to try this one but the idea did make me smile...

Moonflower, I am going to write a thread about this as I feel most of us should know about it, I have wasted years writing about denial when it was never denial in the first place.

I hope you will contribute your experience and views on the thread. Lets spread this insight. Yet again I am shocked that people who know about dementia don't include it in their data sheets..... it took good old Wikipaedia to dish up this nugget of wisdom.

Talk soon and hugs in empathy, BE

 

[lilysmybabypup]

Hi BE,
Just going back over snippets of your thread, it's so hard to be the witness, isn't it? To see that awful descent into oblivion, especially when the fall is so great, is more than our souls can bear. Dad was the big strong bear of a man who protected and helped me all my life. He was the man who ran his own businesses, built furniture, built cars, fixed everything, built his house, could do maths like a machine, won awards for taking, processing and printing photographs, pre digital, got his amateur radio licence and had friends the world over, learned to use a computer, all the active things that should stave off dementia. Maybe they did, he didn't develop it until 79, but it seemed inevitable. He has been the most loving husband, father, grandfather, and hopefully will see his first great grandchild in 12 weeks.
Sorry, it's just saying how much he has lost, and I wonder whether it is easier not knowing. He had periods in his early decline where he would cry endlessly, asking Mum why he felt this way, what was wrong, was he going mad? How distressing! So, I think that denial, while being so terribly hard for us, and it is, I know, been there, is the only way to live peacefully with this evil thief.
I haven't given you any help, and knowing why something frustrating is better doesn't make it acceptable, it just doesn't. I've been beyond angry with Dad when he wanted to fix the lawn mower, broken from the last time he "fixed" it, or Mum calling me daily because he insisted he knew how to email but the computer had a problem.
We all know our limits, we know what we can and can't live with, and it's healthy to acknowledge reaching those limits and making choices that preserve those things worth preserving, and letting go of that which is destroying us, as I've called it, our form of Triage.

Much love to you and a huge dollop of empathy.
Stephanie, xxx

 

[1954]

Oh yes found it!