Author Topic: My mum passed away 6 months ago  (Read 1532 times)

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Offline Tim_D

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My mum passed away 6 months ago
« on: October 20, 2017, 04:40:28 PM »
Hello All

My mum passed away just over 6 months ago now, and my dad passed away 25 years ago.  The last year has been very tough, and so many changes in my life its sometimes feels a bit overwhelming and surreal.  Just to explain things without going into too much detail.  My mum brought us 3 kids up, since my dad passed when I was 15.  She was very independent, and completely selfless and did everything for  myself, brother and sister.  In the beginning of 2016, my mum was well (except having a hip replacement).  In the Spring time, she started showing unusual behaviour, which we initially  put down to  the pain killers due to the hip operation.  As time progressed, she came off the pain killers and behaviour got worse.  She became apathetic, less emotional, confused, got dates and times mixed up and alarm bells started to ring.  After a battle with the NHS, and mis-diagnosis of a stroke she was diagnosed with Motor Neuron Disease (ALS) with Frontotemporal dementia in September 2016.

Since September 2016, her decline was rapid.  We had to move her to my sisters and she was no longer safe to live in her home of 30 years.  Sadly in January, things progressed even more and with regret we had to move her to a nursing home.  She had lost her speech, and could no longer eat and had a feeding tube.  To add to everything going on, I got married in January (this was pushed forward from May due to my mum’s illness).  The disease spread, and my mum’s dementia got worse as did the motor neuron and my mum was being taken away from us bit by bit.  In April, she had an awful fall at the home as her mobility was so bad, which sadly she never recovered from and passed away 3 days later.

I’m finding things hard, although I know I’m most probably doing as well as expected, but would really like some thoughts, suggestions from you.  I am very fortunate for a loving and caring wife who I can talk to, and brother and sister.  Although apart from another friend that has been very supportive, I don’t really talk to others about how I am and feelings.  I’ll just list some of the things I’m struggling with below:-

1.   I have some awful memories of how my mum was during her illness.  I have a very visual mind, so I can recall conversations, incidents very accurately and these memories are constantly triggered, I know my brother has the same problem and most likely has some worse memories.  My mum’s dementia wasn’t the usual type you associate with memory loss.  Frontotemporal dementia, is all about losing cognitive ability, lack of emotions, loosing language ability, completing tasks.  So from being such an independent woman, she was reduced to a shadow of her formal self.

2.   I know I shouldn’t feel guilt, and this isn’t a major part of the problem but I do from time to time, although I don’t believe any of us could have done more, and I know my mum would have never blame us.  I feel guilty we had to move her from her home, to my sisters and to the nursing home.  I also feel guilty not knowing how much pain she was in her last few days of life.  I also feel guilty we weren’t able to spend any enjoyable time together in the last year, as everything was a constant battle by the time we knew what was wrong she was very unwell and not mentally well.

3.   The last few months I have felt quite lonely.  My wife has been brilliant, but I don’t have a big family except my brother and sister and their families and my mum was the core of the family.  I miss her terribly at times, and sometimes find it hard to be with my wife’s family.  They also have been very supportive, but I can’t help but feel what I am missing out on when I’m with her parents, maybe a bit of jealously.  The vast majority of people at work, have never approached the subject of my mum which made me feel even more isolated.  Friends have been supportive, but after a month or two they never approach the subject and act as if nothing has changed now.

4.   I do feel I’ve lost such a major part of my life, not just my mum (which of course she was a major part).  My brother, sister and I were all brought up in Wales, but all moved when we went to Uni and none of us have lived there for years.  We would always regularly visit our mum in Wales, it was the family home, for about 30+ years.  We are also going through the sale of the house and having to wade through years of memories.  Once the sale goes through, its unlikely we will visit again.  There is no family alive on my dad’s side, and on my mum’s side we rarely see them, although they have been supportive during the last year.

5.   To say the last year has been a roller coaster is an understatement.  There has been so much change to my life I struggle to take it all in sometimes, and now in the last few months the pace of life has slowed down, most probably resulting in me thinking about things much more.  In the last year I’ve moved house, had to deal with my mum’s illness, got married, mum passed away, had a 2nd wedding celebration a week after the funeral (which was meant to be the original wedding), and turned 40.

6.   I do from time to time have dreams about my mum.  I’m lucky they aren’t awful, but they do often feature my mum being unwell and on occasion can really bring me down.

7.   I have thought about talking to someone professionally, but part of me thinks I just need time and part of me feels unsure who to talk to.  I don’t just want to talk to someone about grief, as a lot of the pain I’m suffering is due to the illness my mum had.  As the combination of motor neuron and frontotemporal dementia is rare (and the type of dementia is often confused with the type that causes memory loss).  I don’t really know anyone who can help except the hospice but they have already said they can’t help as I don’t live in the area.


Sorry the email is so long, but I really appreciate the time and any thoughts you may have

Offline Emz2014

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Re: My mum passed away 6 months ago
« Reply #1 on: October 21, 2017, 10:00:48 AM »
Sending a welcome hug  :hug:

6 months isnt long in this grief journey, especially as you've had other big changes in your life.  Even things like weddings bring their own stress. A feeling of guilt seems normal for bereavement, i know I felt that myself. 
I know coming here to talk helped me, being able to talk about how I felt and people understand really helped.  Its a lovely group xx
Even the darkest night will end and the sun will rise. 
Hold on in there xx

Offline Fleur

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Re: My mum passed away 6 months ago
« Reply #2 on: October 22, 2017, 08:09:24 AM »
Hello Tim.
You have lost a major part of your life in losing your mum and I can certainly empathise where her illness was concerned. My mother was taken away from us in stages as her dementia gradually worsened over many years, she too had to live in a care home and it was agony for us knowing that in her more lucid moments she really wanted to be at home. She was safe there though and I'm sure that that's what you wanted your mum to be...safe and cared for.
I recently lost my husband too which has made me feel like the loneliest person in the world, although in reality I'm sure I'm not. I'm telling you this to help you to see that this is all a part of the journey we're all travelling here.
Many painful feelings and memories are a part of this journey as I'm sure you have come to realise and the best advice I can offer you is something that I once heard which is "treat yourself as though you are your only beloved child". This has helped me through so many difficult stages of this journey, I visualise in my minds eye, myself holding my own hand (as it was when I was about three years old) and leading myself gently through situations I'd rather not have to go through. I also try to fill my time with various distractions and I find that helping other people is the best one to take my mind away from painful thoughts and memories.
I hope this helps you in some way and that you will continue coming here and expressing your thoughts and feelings. I know it has helped me a lot, people here understand how long this journey can be.


This too shall pass.