Mom in stage 6 of dementia

[Anna_1988]

Hi all, I am very new to this site so apologies if I am posting in the wrong section.
At the moment, my mom is in a care home dealing with stage 6 VD. I know alot of you will know what stage 6 entails, but for those that don't, her speech isn't understandable, she now had to wear paper pants as she has incontinence, and had terrible mood swings, along with violence and agression.
Bit of background info, I am my moms only child, she is seperated from my dad, and about 10 months before her symptoms started showing I moved out of our home to live with my partner.
I them became pregnant and her symptoms got gradually worse, being unaware of conversations we had, confusion of where she was, forgetting to take regular medication. This was managed between me and my dad, we cared for her between us and cooked meals, administered medication and bathed and cleaned her, until one day when my little girl was 11 months, and I turned up at my moms, to find her unable to speak, walk, talk or do anything.
To cut a long story short, she has now been diagnosed with epilepsy which is linked to her dementia, ( i now know she had a fit the morning I found her at home)
Everytime she has a fit, her dementia gets progressively worse, and in 4 years she has gone from no dementia to stage 6 dementia.
Has anybody experienced anything like this or has any advice on how I should deal with this. My mum has always been very lively and happy so before it was easy to still see her original self, but now after her latest fit she is quiet, not happy, a shell of who she once was and each day going to see her breaks my heart. I always took solice in knowing seeing me made her smile and laugh, but now she seems unable to do that sometimes.
Thankyou for reading x

 

[Pigeon11]

Hello Anna

This illness is so terrible isn't it? My dad has had mixed (vascular/Alzheimer's) for about 10 years now but it's difficult to offer any advice about how you should cope as everyone is affected differently. Once they enter a care home, things get easier in some ways - you know they're safe and their needs are taken care of, but then there's the guilt and missing the person they used to be. It's very hard when they seem unhappy or withdrawn like you describe, but a GP once said to me that my dad isn't necessarily unhappy when he's quiet, he just has a different set of priorities, needs and his outlook on life is now different than yours or mine.
I think the best I can say is, visit regularly, but not to the point it takes over your life and look after yourself - it's what your Mum would want for you. As far as your Mum goes, you can do lots of things that will make you feel needed and useful when you visit, even if she isn't able to express that this is the case or seems not to care. I make sure the CH look after him properly, buy him clothes in the styles he likes and have personalised his room so it doesn't look like an institution any more with my own curtains/bedding etc. I also made a life story collage on his wall in his room. I've included A4 prints of family and friends, places he has lived or gone on holiday, things he loved such as cars and historical things, plus I've included a family tree and some interesting things about his life. It makes me feel as though I'm doing something for him on my long visits and it helps staff at the CH see him as a person, instead of a dementia sufferer. I talk to him about daily events even though he can't hear/understand and I hold his hand when he'll let me. It's not the same but at least by doing something for him, I feel a connection with him.

I really hope this helps. People on here will always be there to support you and help you come to terms with things as they are.

Lots of hugs xxx

 

[lilysmybabypup]

Oh Anna, how heartbreaking for you. I am so saddened to read of your poor mum and such a drastic decline. While our situation differs from your mum's I just want to say that I understand that empty ache when the smile and recognition fades. My dad is very much at the end, not eating for weeks, and barely drinking, but up until a few days ago he seemed to still know I was his girl. Now he is barely able to wake long enough to hear my voice, and not really reacting to it any more, although he is still able to speak, amazingly.

I have little help to offer, just an acknowledgement of your feelings right now. I hope you can still derive some comfort from holding her hand and perhaps bringing her some peace and love.

Stephanie, xxx

 

[Anna_1988]

Hello Anna

This illness is so terrible isn't it? My dad has had mixed (vascular/Alzheimer's) for about 10 years now but it's difficult to offer any advice about how you should cope as everyone is affected differently. Once they enter a care home, things get easier in some ways - you know they're safe and their needs are taken care of, but then there's the guilt and missing the person they used to be. It's very hard when they seem unhappy or withdrawn like you describe, but a GP once said to me that my dad isn't necessarily unhappy when he's quiet, he just has a different set of priorities, needs and his outlook on life is now different than yours or mine.
I think the best I can say is, visit regularly, but not to the point it takes over your life and look after yourself - it's what your Mum would want for you. As far as your Mum goes, you can do lots of things that will make you feel needed and useful when you visit, even if she isn't able to express that this is the case or seems not to care. I make sure the CH look after him properly, buy him clothes in the styles he likes and have personalised his room so it doesn't look like an institution any more with my own curtains/bedding etc. I also made a life story collage on his wall in his room. I've included A4 prints of family and friends, places he has lived or gone on holiday, things he loved such as cars and historical things, plus I've included a family tree and some interesting things about his life. It makes me feel as though I'm doing something for him on my long visits and it helps staff at the CH see him as a person, instead of a dementia sufferer. I talk to him about daily events even though he can't hear/understand and I hold his hand when he'll let me. It's not the same but at least by doing something for him, I feel a connection with him.

I really hope this helps. People on here will always be there to support you and help you come to terms with things as they are.

Lots of hugs xxx

Thankyou for your reply Pigeon11, you are right it is such a terrible disease.
Me and my mum have always had a very deep relationship, times we have hated each other, but always known that we are there if the other needs us, which comes as a slight relief because in times she feels down she would always ask for me. Just recently she has aquired a baby doll, and when asked the babies name she replied 'Anna' which is nice to know she still remembers me, even if it is only as a baby.
I feel like since she went into her care home 3 years ago I have always suffered with abit of 'survivors guilt' if you like. My mum used to be an alcoholic, and I was the only person who stayed with her, so I have that 'why didn't I pick up on signs' or 'maybe if i had stayed home and not moved out' but since having my 2nd child these thoughts seen to be diminishing, as I take my children to the home to see their nan on a weekly basis and to see them playing and my daughter trying to chase her nanny is the nicest thing in the world. Xx

 

[Anna_1988]

Oh Anna, how heartbreaking for you. I am so saddened to read of your poor mum and such a drastic decline. While our situation differs from your mum's I just want to say that I understand that empty ache when the smile and recognition fades. My dad is very much at the end, not eating for weeks, and barely drinking, but up until a few days ago he seemed to still know I was his girl. Now he is barely able to wake long enough to hear my voice, and not really reacting to it any more, although he is still able to speak, amazingly.

I have little help to offer, just an acknowledgement of your feelings right now. I hope you can still derive some comfort from holding her hand and perhaps bringing her some peace and love.

Stephanie, xxx

Thankyou for your reply Stephanie, at the moment my comfort comes from my partner and kids keeping me strong, and knowing that if my mum needs something and i cannot do it alone, they will help me all the way.
I am very pleased to hear your dad is still able to talk at such a late stage, as I think this is something very rare and to be cherised xx

 

[zigandzag]

Hi Anna - I'm a fellow brummie so felt compelled to reply to you.

My mom is also at stage 6 with Vascular Dementia - she is at home at the moment but for how much longer I'm not sure. We have carers in 4 times a day and my disabled dad helps out as best he can too.

My mom also declined fast - she was only diagnosed just over a year ago - before that she was as fit as a fiddle - no illnesses/meds etc - the last time she was in hospital was when she was having my sister and that was 45 years ago! so the shock of her fast demise has really knocked us all too.

My mom does know me a the moment but I know it is only a matter of time before she doesn't as every day I lose another little bit of her.

I'm sorry you're going through this - but take some comfort in that you are not alone.

Take care x