My very first post....

[lolly63]

I have never posted to any forum before but having lost my mum on 29th Sept to either Alzheimer's or Vascular Dementia (depending who you spoke to) I now feel like I need to. I was with mum when she passed away which was a very peaceful and she was 81, no-one in her family had ever lived to this age. Unfortunately though all of this has happened so quickly. Mum only got a diagnosis of Alzheimer's after a CT scan in September last year. She was aware at that time that her memory was poor and this caused her distress but she was quite matter of fact about her diagnosis.

We are a family of nurses, mum was a health visitor and retired as a nurse manager. At the time of her diagnosis and in the months leading up to it when she would become so muddled and mixed up I was working as a district nurse. I had worried that mums memory problems were more than just anxiety (as my sister believed) however despite several trips to the GP and numerous memory tests she appeared to be a class act when it came to completing them! My sister (also a senior nurse) took mum to these appointments and it was almost that the fact mum could do the test all of the other symptoms she had and so we went on.

I know that we are not the first family who have been polarized by this awful illness, but my sister seemed unable to see what I was worried about. As mum became more muddled she could be frustrating, I now know it is impossible to talk someone through how to use a medication tray whilst driving along the motorway - hands-free I promise! This was the least of it, a system on her door to alert us via a phone call when she left the house had its own issues, particularly when she flooded her kitchen at 4 in the morning!

Anyway I am rambling! To be able to cope I found that I had to be with my mum as if she was one of my patients, this helped me to be patient, calm and much more understanding than I really felt deep down. Great at the time but now after mum has passed away I cannot remember her as she was before her illness, I mean I really cannot remember her. As it was such a swift decline with low and lower points. Admission to hospital, discharge into residential dementia care, admission back into hospital with a broken hip (also an un-diagnosed pelvic fracture), from where she was discharged for end of life care into a nursing home. Then miraculously rallying and taking charge of the nursing home - once a nurse manager always one apparently!!

The lady who passed away 3 months later was so much in need of help, support and compassion which we gave as best we could, but she was not my witty, wacky, naughty mum. Maybe I mourned for mum last year but now whilst I feel sad, I don't believe that I am really having a 'normal' response to her dying now. I am not sure what I am hoping the forum can do to help but to be honest writing some of the things down has helped a little.

 

[AlsoConfused]

Your Mum sounds a lovely person. Her peaceful end must be a comfort.

It must have been very hard for you and your family to grapple with such huge unwelcome changes in such a short time ... and then to have to say "good bye" so surprisingly quickly. There must be so much emotional catching up to do.

Perhaps it'll be easier to make sense of things in a few months time?

We haven't had this loss yet in my family. There was a sudden life-threatening emergency (20 years ago now) happily and fairly quickly resolved ... even that fairly small family earthquake took me 12 months to come to terms with. Perhaps confusion, uncertain feelings and (temporarily) upset family relationships are fairly typical in bereavement?

Wishing you comfort and peace.

 

[Mrsbusy]

I think as is often said in this forum, which is great by the way and well done for joining, with Vascular dementia or any dementia you don't just lose the person once but multiple times.

Firstly when it's diagnosed, then each time they hit another slope, then when they become immobile or incontinent, again when they are unrecognisable as the person you knew, then of course the struggle watching their final decline before losing them properly. It's a cruel painful journey for them and us, and each day brings other problems to deal with and get our head around.

You have probably been on automatic pilot for so long now it may not have hit you yet, it is still early days and the recent events will be at the front of your memories until the pain subsides to allow you to remember things about her, little things, that catch you unawares like her sayings, or how she had her tea and of course Chrustmas approaching will be hard.

It will happen just when its time to happen. I do like the thought of your mum taking over where she was staying! Be kind to yourself and take one day at a time.

 

[Spamar]

Mrsbusy is quite right, you lose them multiple times. In my case at first diagnosis, at the point when he couldn't be left alone, when he went into a care home and, of course, when he finally died. Even then, his death was a shock, and not protracted.

It also affects the wider family and friends, something often forgotten.

One thing of note is that a persons intelligence, or native cunning, if you prefer, means they can answer the test questions OK, thus disguising their true diagnosis. In the early days, OH never scored less than 28, usually 30. Then he wasn't tested for years, until he was in such a state all native cunning had gone!

Find some old photos of mum in happier times, make a collage of them, put in a prominent position. Every time you look at it the old mum will be there, not dementia mum. Working for me!

 

[twigs1972]

I have never posted to any forum before but having lost my mum on 29th Sept to either Alzheimer's or Vascular Dementia (depending who you spoke to) I now feel like I need to. I was with mum when she passed away which was a very peaceful and she was 81, no-one in her family had ever lived to this age. Unfortunately though all of this has happened so quickly. Mum only got a diagnosis of Alzheimer's after a CT scan in September last year. She was aware at that time that her memory was poor and this caused her distress but she was quite matter of fact about her diagnosis.

We are a family of nurses, mum was a health visitor and retired as a nurse manager. At the time of her diagnosis and in the months leading up to it when she would become so muddled and mixed up I was working as a district nurse. I had worried that mums memory problems were more than just anxiety (as my sister believed) however despite several trips to the GP and numerous memory tests she appeared to be a class act when it came to completing them! My sister (also a senior nurse) took mum to these appointments and it was almost that the fact mum could do the test all of the other symptoms she had and so we went on.

I know that we are not the first family who have been polarized by this awful illness, but my sister seemed unable to see what I was worried about. As mum became more muddled she could be frustrating, I now know it is impossible to talk someone through how to use a medication tray whilst driving along the motorway - hands-free I promise! This was the least of it, a system on her door to alert us via a phone call when she left the house had its own issues, particularly when she flooded her kitchen at 4 in the morning!

Anyway I am rambling! To be able to cope I found that I had to be with my mum as if she was one of my patients, this helped me to be patient, calm and much more understanding than I really felt deep down. Great at the time but now after mum has passed away I cannot remember her as she was before her illness, I mean I really cannot remember her. As it was such a swift decline with low and lower points. Admission to hospital, discharge into residential dementia care, admission back into hospital with a broken hip (also an un-diagnosed pelvic fracture), from where she was discharged for end of life care into a nursing home. Then miraculously rallying and taking charge of the nursing home - once a nurse manager always one apparently!!

The lady who passed away 3 months later was so much in need of help, support and compassion which we gave as best we could, but she was not my witty, wacky, naughty mum. Maybe I mourned for mum last year but now whilst I feel sad, I don't believe that I am really having a 'normal' response to her dying now. I am not sure what I am hoping the forum can do to help but to be honest writing some of the things down has helped a little.

I too only joined yesterday and found it quite helpful to put into words how I feel. I am sorry to hear about your loss. Your Mum sounded like a very remarkable lady. Try to remember her as the Mum who laughed and smiled and kissed away your tears when you were her little girl, and feel very proud of yourself for the role reversal when she needed that too.

 

[cragmaid]

Hello, I lost my Mum this year. She was nearly 88 and her certificate reads that she died of " Frailty of old age". She had a whole list of ailments, including Mixed Dementia. I wept on Sunday night when I went to her church for a Service of Light, but not the sort of deep cleansing tears I might have expected to cry; not "Normal" grief.
What is normal grief? It isn't the tears I cry when I see a sad film, or hear a beautiful aria, or the ones that a glorious sunset can raise.....or is it?
Grief is the pain that you don't have Mum on the other end of the phone. It's the sadness you feel when your Grand daughter takes her first steps and you can't share it. Grief is the tear you shed in the clothes department when you see a cardigan that would be perfect, if only she was here to wear it. It's knowing that you can't ask her who is in the photograph, or is so and so still alive?
There are so many levels of grief, so many ways of expressing it, and no one has the right to say what you should or shouldn't feel.

Grief is what the lucky feel. Lucky... you are joking No, I'm not joking. We are the lucky ones because we have had someone to love and someone we have lost.

So your pain, your sense of loss is normal.

It will ease eventually.....and keep the tissues handy just in case.

 

[Scarlett123]

Mrsbusy is quite right, you lose them multiple times. In my case at first diagnosis, at the point when he couldn't be left alone, when he went into a care home and, of course, when he finally died. Even then, his death was a shock, and not protracted.

It also affects the wider family and friends, something often forgotten.

One thing of note is that a persons intelligence, or native cunning, if you prefer, means they can answer the test questions OK, thus disguising their true diagnosis. In the early days, OH never scored less than 28, usually 30. Then he wasn't tested for years, until he was in such a state all native cunning had gone!

Find some old photos of mum in happier times, make a collage of them, put in a prominent position. Every time you look at it the old mum will be there, not dementia mum. Working for me!

An excellent post Spamar, which echoes my own feelings so much. Lolly, it has been a huge shock for you to lose your Mum, and all this has happened very quickly. Talking Point is a wonderful place to share your feelings, good or bad, to celebrate even the smallest achievements, or the deepest sorrows.

I too found it very cathartic to sort through photos, and bought new albums in which to remember happier times. Your Mum sounds a remarkable lady, and you have been a remarkable daughter and must have made your Mum so very proud.

 

[truth24]

Agree with the other posters here, lolly. I have no doubt all your memories of your lovely mother will shortly return to you and you will forget the dark days. Many condolences.

 

[lolly63]

Agree with the other posters here, lolly. I have no doubt all your memories of your lovely mother will shortly return to you and you will forget the dark days. Many condolences.

I am humbled by all these responses. Thankyou for such kind words, they strike a chord in so many ways. I too found the all souls service at our church on Sunday a mixed blessing. Beautiful, sad another step on a long journey although it then left me slightly empty. Maybe these are some of the signs of a grief of sorts and maybe it is sometimes difficult to see these in the early days. Mums photos currently sit in my garage in what looks like the worlds largest suitcase! A left over from her travelling the world, such an adventurous, fearless lady. I hate what the dementia robbed her of, all the memories of a life well lived.

 

[Soobee]

...
Grief is the pain that you don't have Mum on the other end of the phone. It's the sadness you feel when your Grand daughter takes her first steps and you can't share it. Grief is the tear you shed in the clothes department when you see a cardigan that would be perfect, if only she was here to wear it. It's knowing that you can't ask her who is in the photograph, or is so and so still alive?

That paragraph really struck a chord with me [[searching for the tissues]]. Put into words very eloquently, thank you cragmaid.

 

[canary]

It is very early days lolly. I remember the feeling of not being able to remember what my dad was like, or look like, or anything after he died - and he didnt have dementia, he died of a heart attack.

I think the grief blanks everything out. I certainly felt numb for several months afterwards and wasnt able to cry. This state doesnt last though. I was able to remember what he was like again and 30 years later I still do.
xx

 

[lolly63]

It is very early days lolly. I remember the feeling of not being able to remember what my dad was like, or look like, or anything after he died - and he didnt have dementia, he died of a heart attack.

I think the grief blanks everything out. I certainly felt numb for several months afterwards and wasnt able to cry. This state doesnt last though. I was able to remember what he was like again and 30 years later I still do.
xx

This really gives me comfort Canary, thankyou for taking the time to reassure me that this feeling (or lack of it) will not last for ever. When my Dad died he was not part of my life - by mutual agreement and the grief at that time was for what could have been in our relationship, this is so different. I can see I need to not panic - things will come back in time - I am just not patient enough for my own good I think!