Significant White Matter Loss

[minbari73]

Hi everyone. I thought i'd seek out to read other people's experiences with this the worst of all diseases and perhaps to come to terms with what my Mother and I (and my extended family) are dealing with.

I know things get easier, particularly after the death of a loved one, but to have the living death, that this disease surely is, continually upset me to point of not wanting to see my Mother at all, I thought last night i'd write something i've been wanting to get off my chest for the last year or two. It's a heavily truncated little story that expresses my sadness and the nightmare and also my lack of knowledge about what may be going on inside my Mother's mind. I know it's likely a jumbled mess of half thoughts, but she's still my Mum at times and that occasionally comes through.

Ok, it's not an enjoyable read at all. Please be warned.






Significant White Matter Loss


I was around 16 years old. I walked into the kitchen of our old asbestos house and my Mum was there. I sat down on the stool near the bench as she was cutting vegetables. She appeared as she always did, a short haired lady preparing the nightly meal. She opened her mouth and a loud nonsensical moan came out. I asked her what she was saying. Same again. I became frightened as she continued the noise.

I woke up in a sweat. I was still a 16 year old and it turned out my Mum was ok.

20 years later the doctor came to my Father and I in the waiting area of the Hospital and informed us that they had done full body scans of my Mum and he was sorry to tell us that she had early signs of dementia. Her left breast had just been removed for cancer and my Father decided that we wouldn't tell her of the dementia so as to not worry her. It was to be 10 years before it was noticeable in her behaviour.

10 years of keeping a secret and always expecting the worst. My Father simply forgot about it as that was how he was. That's how he continued.

Things came crashing down for him at 83 when her dementia became so apparent she nearly set the kitchen alight. He still didn't want to believe or know about her problem. He wanted things to stay as they were. He wanted her to cook for him and my suggestion of getting some help, such as meals on wheels was refused. There was no problem you see. Ignorance is indeed bliss. I know he knew, as she was becoming more and more vague in the things she said.

Soon after, he was in hospital as he wasn't feeling well at all. He told his visiting nurse at home that it's the worst he's ever felt. Like death. His debilitating arthritis made his daily struggle worse and his pride of staying on his feet instead of a gopher worse indeed for me. His driving was becoming dangerous, but there was no telling him. The very idea of me making sure he couldn't place others in danger by cancelling his drivers license made him see me as the enemy. His mind was fine for an 83 year old, his body was not.

My Mum and I visited him in hospital daily. I think I didn't want to believe she couldn't take care of herself either. I didn't want any of this to affect my life. I came to pick her up this one day and she was asleep on the couch. I woke her and sat down on the adjacent rocker. I asked her if she was ready to go.

A loud nonsensical moan came from her lips. I cried right there in front of her as she looked puzzled and frustrated at herself.

My mum tried to find the words so hard. They eventually came well enough to tell me about the groups of people milling around outside the house all day. The disco outside. The flashing lights. The people waiting in my fathers car. The woman in white standing in the hallway. There was no one there. Not anywhere.

I'd finally realised she couldn't stay alone.

My father died 2 days later. Leukaemia. He tried so hard to convince the doctors to let him go home to die. For another week of normality. It couldn't happen. He was in pain. So much pain, a feeling of death, I asked the doctor to dose him with morphine for his remaining days. He didn't last long after that, in fact I wondered whether my decision cut short our remaining time with him.

My Mum is in a home now. The antipsychotics helped her but she can't be spoken to. She rarely makes any sense except to say she wants to leave her prison and go home.

There is no home to go back to.

"Take me with you" she says.

"I can't Mum, I'm sorry. See you next time ay"

She can't hear me. I shake my head. If only she wasn't deaf as well.

Her scowl cuts me deep every time. I don't want to go back.

At 48 I sleep more often now, I wonder if it's to simply move things along.

 

[Mrsbusy]

Wow, what a powerful read. Well done and I bet you feel better for it.

Lots of similar feelings here but not so far along as you, but the father pretending all ok and no help needed hits a note with me and many others I guess.

You can only do so much as can we all. Try your best is what we are told throughout lives. Well you did and well done to you for that, many others fall at the first hurdle or don't even try, so hold your head high.

Like you I dread visiting my my parents now, as it's a drama followed by another drama. You feel mean for not visiting for longer, you feel mean for feeling mean, it never stops.

Now she's in the best place, and in her predementia days she would understand and be proud of how you cooed, your Dad too.
Take one day at a time and keep writing.

 

[minbari73]

Wow, what a powerful read. Well done and I bet you feel better for it.

Lots of similar feelings here but not so far along as you, but the father pretending all ok and no help needed hits a note with me and many others I guess.

You can only do so much as can we all. Try your best is what we are told throughout lives. Well you did and well done to you for that, many others fall at the first hurdle or don't even try, so hold your head high.

Like you I dread visiting my my parents now, as it's a drama followed by another drama. You feel mean for not visiting for longer, you feel mean for feeling mean, it never stops.

Now she's in the best place, and in her predementia days she would understand and be proud of how you cooed, your Dad too.
Take one day at a time and keep writing.

I used to think other people were being thoughtless and cruel by not visiting their elderly parents more often in homes, but you know... ignorance. People deal with things in other ways to make themselves feel better.

As someone who has experienced this feeling now, I still can't quite get to grips with the idea of people who constantly try to make their dementia ridden parent remember them and search for the person they were, as if this makes them personally happy somehow.

I've seen video segments of some people who seem to take great pleasure in that glimmer of personality that still appears sometimes. As if there's still hope where there is none at all. Horses for courses, but it only ever makes me unspeakably sad.

 

[1mindy]

"I've seen video segments of some people who seem to take great pleasure in that glimmer of personality that still appears sometimes. As if there's still hope where there is none at all. Horses for courses, but it only ever makes me unspeakably sad."


That's me. O h been in his home for three days now ,second visit today. I still see that glimmer sometimes,we laughed great deal on the days before he went in ,silly things really .I do know there is no hope but I still hope I am wrong and in the home they will make him right, so silly I know but I want him back so badly xx

 

[cat64]

what a wonderful piece of writing and hopefully cathartic for you,.............my mum has only been in her home for two weeks and she has changed already.............I still have mega guilt that I have caged her but deep down I know its the right time.

We can all only do what we think is best for our loved ones, we all have different situations and we all cope how we can. I don't think there is one right or wrong way its just what's works best.

I hope to visit every week for a couple of hours...I physically can't do it any more....I'm a childminder with long days, have a family of my own and don't drive so I know mum is safe and nearer to me now than she was before.
take care of yourself.

 

[Saffie]

Why would someone not take pleasure in even a glimmer of the person as they were?
It doesn't mean we expect a miraculous recovery, just a moment of comfort in the bleak dementia world. I loved to see just a sparkle of my husband's humour, a smile, a word, when I visited as such sights were few and far between amid his general confusion and suffering.

I know things get easier, particularly after the death of a loved one

Easier. I don't think so. Not in my experience anyway. Practically - and physically too maybe but not emotionally or mentally. Maybe others see it differently.

 

[minbari73]

That's me. O h been in his home for three days now ,second visit today. I still see that glimmer sometimes,we laughed great deal on the days before he went in ,silly things really .I do know there is no hope but I still hope I am wrong and in the home they will make him right, so silly I know but I want him back so badly xx

As do I her.

Thanks for the comments everyone.

It's good to speak to people who know. My Mum's health, apart from the dementia onset and slow increase, has improved when she went in the home. She was 35kg before going in, barely ate anything and now she's around 55. The home is very good. It's a modern facility and it's kept very clean and made to look as much like an elderly person's home as possible.

Her mind is still there enough to hate it, even though she's taken care of and has her hair done regularly, with daily activities and distractions.

My mother cried at my Dad's death bed and funeral, but quickly got over it afterwards. I wondered if it was the dementia making that happen, keeping her mind racing onto other things and then other things, giving her no time to think about it.

I on the other hand, took at least 18 months before finally not crying daily. I came here as the last visit to my Mum brought some things back when she pleaded to come home with me. My son could tell i was upset on the way home. I never hid my grief from him when my Father died. It brought about my own fear of mortality and what he'll eventually go through with me. This upset me even more at the time.

The cocktail of drugs they give her daily have gone a long way in stabilising her moods. They finally found the right combination to stop her saying mean things and lashing out. There was so much more that happened than what I mentioned above.

Thanks again.

 

[minbari73]

Why would someone not take pleasure in even a glimmer of the person as they were?
It doesn't mean we expect a miraculous recovery, just a moment of comfort in the bleak dementia world. I loved to see just a sparkle of my husband's humour, a smile, a word, when I visited as such sights were few and far between amid his general confusion and suffering.



Easier. I don't think so. Not in my experience anyway. Practically - and physically too maybe but not emotionally or mentally. Maybe others see it differently.

I guess I just see more of what's missing instead of what's still there, as so much has gone. Every time the symptoms manifested, the hallucinations, the mood swings, the wandering, the strange sleep patterns, the mumbling, I saw my Mother, everything she was slipping away. I can't not see it.

 

[fizzie]

I was always thrilled when my mum showed the 'old mum' and my children were too, we all laughed together in those moments and it made the rest easier to bear - the togetherness just for a short while

 

[purplehead]

Minbbar

Hi everyone. I thought i'd seek out to read other people's experiences with this the worst of all diseases and perhaps to come to terms with what my Mother and I (and my extended family) are dealing with.

I know things get easier, particularly after the death of a loved one, but to have the living death, that this disease surely is, continually upset me to point of not wanting to see my Mother at all, I thought last night i'd write something i've been wanting to get off my chest for the last year or two. It's a heavily truncated little story that expresses my sadness and the nightmare and also my lack of knowledge about what may be going on inside my Mother's mind. I know it's likely a jumbled mess of half thoughts, but she's still my Mum at times and that occasionally comes through.

Ok, it's not an enjoyable read at all. Please be warned.






Significant White Matter Loss


I was around 16 years old. I walked into the kitchen of our old asbestos house and my Mum was there. I sat down on the stool near the bench as she was cutting vegetables. She appeared as she always did, a short haired lady preparing the nightly meal. She opened her mouth and a loud nonsensical moan came out. I asked her what she was saying. Same again. I became frightened as she continued the noise.

I woke up in a sweat. I was still a 16 year old and it turned out my Mum was ok.

20 years later the doctor came to my Father and I in the waiting area of the Hospital and informed us that they had done full body scans of my Mum and he was sorry to tell us that she had early signs of dementia. Her left breast had just been removed for cancer and my Father decided that we wouldn't tell her of the dementia so as to not worry her. It was to be 10 years before it was noticeable in her behaviour.

10 years of keeping a secret and always expecting the worst. My Father simply forgot about it as that was how he was. That's how he continued.

Things came crashing down for him at 83 when her dementia became so apparent she nearly set the kitchen alight. He still didn't want to believe or know about her problem. He wanted things to stay as they were. He wanted her to cook for him and my suggestion of getting some help, such as meals on wheels was refused. There was no problem you see. Ignorance is indeed bliss. I know he knew, as she was becoming more and more vague in the things she said.

Soon after, he was in hospital as he wasn't feeling well at all. He told his visiting nurse at home that it's the worst he's ever felt. Like death. His debilitating arthritis made his daily struggle worse and his pride of staying on his feet instead of a gopher worse indeed for me. His driving was becoming dangerous, but there was no telling him. The very idea of me making sure he couldn't place others in danger by cancelling his drivers license made him see me as the enemy. His mind was fine for an 83 year old, his body was not.

My Mum and I visited him in hospital daily. I think I didn't want to believe she couldn't take care of herself either. I didn't want any of this to affect my life. I came to pick her up this one day and she was asleep on the couch. I woke her and sat down on the adjacent rocker. I asked her if she was ready to go.

A loud nonsensical moan came from her lips. I cried right there in front of her as she looked puzzled and frustrated at herself.

My mum tried to find the words so hard. They eventually came well enough to tell me about the groups of people milling around outside the house all day. The disco outside. The flashing lights. The people waiting in my fathers car. The woman in white standing in the hallway. There was no one there. Not anywhere.

I'd finally realised she couldn't stay alone.

My father died 2 days later. Leukaemia. He tried so hard to convince the doctors to let him go home to die. For another week of normality. It couldn't happen. He was in pain. So much pain, a feeling of death, I asked the doctor to dose him with morphine for his remaining days. He didn't last long after that, in fact I wondered whether my decision cut short our remaining time with him.

My Mum is in a home now. The antipsychotics helped her but she can't be spoken to. She rarely makes any sense except to say she wants to leave her prison and go home.

There is no home to go back to.

"Take me with you" she says.

"I can't Mum, I'm sorry. See you next time ay"

She can't hear me. I shake my head. If only she wasn't deaf as well.

Her scowl cuts me deep every time. I don't want to go back.

At 48 I sleep more often now, I wonder if it's to simply move things along.

My heart goes out to you your emotions are in turmoil take time you need to grieve for u dad I guess you now feel the full responsibility for u mum but u need to look after yourself get your thoughts right you will find inner strength to cope

 

[cat64]

My mum is in a MODERATOR NOTE: Name of care home/group removed too....you aren't in Notts are you by any chance?

it is a lovely modern facility too!

 

[minbari73]

My mum is in a MODERATOR NOTE: Name of care home/group removed too....you aren't in Notts are you by any chance?

it is a lovely modern facility too!

I'm in Perth Australia.

 

[LYN T]

I know things get easier, particularly after the death of a loved one, but to have the living death, that this disease surely is, continually upset me to point of not wanting to see my Mother at all,


.

First of all let me say that I'm very sorry on the passing of your Father and the turmoil involved with your Mum.

I have to comment on the statement you made; in my opinion, and in my experience, things do not get easier after the death of a loved one. Yes, my late Husband is no longer in pain or confusion-but where has that left me? Lost and heartbroken and frankly bitter that my kind and gentle Husband died the way he did. I miss his physical presence, caring for him (he was in a CH but I went in at least once a day to feed him his lunch) and I have lost the main focus in my life. When Pete was alive I had battles to fight (many) and plenty of things to do (GP's/Mental Health Team to visit) etc. I keep very busy now but life is different-but easier? No!

Take care

Lyn T

 

[minbari73]

I have to comment on the statement you made; in my opinion, and in my experience, things do not get easier after the death of a loved one. Yes, my late Husband is no longer in pain or confusion-but where has that left me? Lost and heartbroken and frankly bitter that my kind and gentle Husband died the way he did. I miss his physical presence, caring for him (he was in a CH but I went in at least once a day to feed him his lunch) and I have lost the main focus in my life. When Pete was alive I had battles to fight (many) and plenty of things to do (GP's/Mental Health Team to visit) etc. I keep very busy now but life is different-but easier? No!

Take care

Lyn T

As it was my Father, and not the focus of my life, as your Pete was, I meant that the grief part of it has gotten easier. People may die and leave their loved ones in difficult situations, (as he did to me and Mum) but those things sorted themselves out over time and a lot of money. I can't imagine the difficulties some people in far worse situations go through, with no money or assets to speak of. I was lucky in that respect. You've lost the love of your life, I haven't suffered that particular thing yet. Hopefully, when my time comes to either suffer as Dad did, or lose my mind as my Mum is, I leave having sorted everything out first. Power of Attorneys and Wills etc.

 

[whileaway]

Well, I'm in tears from your post. This is the first time I've opened Talking Point in 2 weeks.
You have been through such a heartbreaking time, and are yet so young. I am almost 20 years older, and my parents are still able to manage, although things will break in the year.
Your story reminds me of Yeats' Easter Rising -which has been on the news lately, in which the normal life, the normal cast of characters, are suddenly- "Changed! Utterly changed!" It is a war, And there is no going back to normality. There is no home to go back to for the utterly ill, your poor Dad, too, except in memories. But you must remember how content they were and what good parenting you had. The loss is greater because you were given such good people to raise you, and (I guess), to Carry On, remembering happy moments in your/their lives, is the greatest homage you can pay them. I'm so sorry.

 

[minbari73]

Here I am three years later, waiting next to my Mums bed in the home she resides in. I’m not sure I will return tonight.

She is slowly starving to death. Her kidneys have failed. Her mouth is open, her breathing slow and rough. Her face is skeletal. The SC nurse has just given her a morphine injection for the twitching. The twitching is pain. Her eyes won’t open. I’m not sure if she can hear me. I’m not sure she can feel my kisses on her forehead or my hand on hers.

I don’t want to watch her die, but I can’t leave.

My dad died without me or her there. I saw his death face and I don’t want to see it again.

I knew this time would come and thought I may not be upset, given the fact I’ve followed every step of her illness.

How very very wrong I was.

I’m trying to tell myself that “end of life” comes to everyone and her pain will soon be over. It’s not helping. Family words of comfort are no comfort at all.

Her chest isn’t rising while breathing. It doesn’t seem to be expanding with air. It’s kind of just squeezing itself. There’s minimal breath.

Goodbye Mum. This atheist says head towards the light. Dad will be waiting there.

 

[canary]

Im so sorry @minbari73 This is a tough time.
My mum passed away the same way last year and it seems to go on forever.

I would just like to mention one thing, though, that might offer a quantum of comfort: your mum is not starving to death - she is dying anyway and her body can no longer process food and drink, which is why she is no longer eating and drinking
The doctors and nurses will make sure that her pain is kept under control so that her passing is peaceful. My mum was put on a syringe driver for her last couple of days to make sure that she had a constant supply of pain killers.

No, nothing prepares you for this, but it will be over soon