My mum is finally dying

Stopped Clock

Hi all. I hope the boards mods won't mind that I'm a re-reg. I'm a regular boards user and I'm a bit paranoid about giving out too much personal information about myself. Members of my own family are big readers of boards.ie so I'm always worried about blowing my cover.

Anyway I felt I needed to chat to someone which is why I'm here. As far as I know I'm not terminally ill but my mum is. She has Alzheimer's disease and has had it for several years. Now she's at what's described as late stage or Severe Alzheimer's. In other words she's no longer aware of her surroundings, is being fed through a tube in her stomach and just lies in her bed in the nursing home. I'm heartbroken and have been for years. If I talk about her for any length of time at all I start to cry. I've been to counselling and it helped but no amount of therapy will ever cure the intense sadness I feel. I don't feel sad all the time. The human brain has a great capacity to numb against awfulness like this.

Anyway it's now looking like my mum is reaching end of days. She's losing weight and getting increasingly vulnerable to chest infections. They're concerned for her in the nursing home. I really don't know what to think and my brain's bouncing all over the place. The other day I got a phone call from someone in my hairdresser's, looking to switch an appointment. I didn't recognise the number and when I answered, the lady on the phone gave her first name. It was the same as the head nurse in the nursing home and I immediately felt sick and started to panic. It took several seconds for the next thing she said ("from Peter Mark") to register with me and by that stage she had gone on to talk about switching the appointment date. I'm sure she was wondering why I was so incoherent and terrified over something so simple.

I feel so conflicted. I know my mother would not have wanted to end her days in the way she has. I've not had a proper mother for many years because of this dreadful illness and I know it has scarred me. When she goes I don't know what to think. Will I miss her even though she's gone already? Will I be relieved that her suffering's over? Or will I be even more upset. I was shocked that I panicked so much over that Peter Mark phone call.

looksee

Stopped Clock, I am not going to make an issue of your rereg for this purpose, I don't blame you at all. I was going to re-reg myself to reply (for the same reasons) but then I decided I could not be bothered with sorting another email address etc.

No-one can tell you how you will feel or react to your mother's death, and it does sound as though she is entering the last stage. It seems to be pretty common when someone has had a considerable amount of stress and grief during a loved-one's last years that the death comes as something of a relief. In my own (fairly recent) case I don't feel anything, not grief, or relief, or sadness or happiness. It seems very strange, but I have accepted that it is just the way it is, it may change, though I do not think so. No-one is responsible for the way they feel.

You will probably grieve to some extent that she has gone, but it has to be mixed with a lot of relief that it is over, for her and for you. Do everything you can to say a loving goodbye, give yourself chance to get your feelings straight; be prepared for feeling muddled and tired and a bit apathetic (as in, I could not be bothered sorting another email address), and in due course, get on with your life.

If the situation is affecting your work, tell your superior what is happening, and possibly go to your doctor and see if he thinks some medication or counselling would help. Sincere sympathy to you.

Stopped Clock

Thanks for replying. I'm glad somebody understands where I'm coming from. I've got a good relationship with my boss and he has been great. His own mother died from it so he understands what's happening. I live away from home so I'm not in a position to visit every day. I hate visiting her in the nursing home but then feel guilty when I go see her. I look at this person in the bed who looks like my mother but doesn't respond. I just have to get out of there before I start to cry. That goodamn place breaks me every time I go near it. I think I visit so that I'll not look like a heartless bitch to my father. He visits a lot. I also am afraid I'll feel guilty about not seeing her more often after she goes. Even though I also know that my mum would never have judged me like that. God, I miss her so much. I hope some day I'll get over this.

Baybay

Stopped Clock, I am very sorry you find yourself in this very difficult situation. Several of my friends had or have parents in similar & each deal with it in differing ways.
My own mother, who didn't have Alzheimer's, died suddenly & unexpectedly a few months ago. She was a healthy enough 85 year old so it wasn't entirely a surprise given her age but it was definitely a shock. What I've told myself & my children is that there is no normal in these circumstances, what we feel & how we react is now our normal. I'd say the same to you. None of us have ever gone through this before so we can't say in advance how we'd react, we can only just go from day to day, dealing with all the feelings, emotions with ordinary life mixed in.
One thing I do know though is that older people change. Even without Alzheimer's. They may be crotchety, set in their ways, feel slighted that a visit only lasted 40 minutes when I'd normally stay at least an hour, become opinionated about things that they have little knowledge about & many, many more idiosyncrasies that I associated with age. As a friend said to me after the death of his non- Alzheimer's mother, his mum died for him about fifteen years before. The fun, lighthearted parent left & someone he hardly recognised took her place.
I'm not trying to make light of your plight. I'm just saying don't beat yourself over your reaction. As do we, our parents change too as they age & sometimes, regardless of what ails them, they're not always the people we remember from times gone by.
It is hard to lose a parent in any circumstance, harder for me to have lost my mum than it was to have lost my dad. I think of her every day & some days are still pretty tearful but we laugh too at memories we have & we talk about the real her, faults & all not some sainted version of her.
This is our normal. You will find yours.
I hope the coming weeks are kind to you. Be kind to yourself too.

looksee

Guilt over something that you have no control over is pointless and harmful. Don't feel guilty, now or later. Yes you are going to visit your mother for your father's sake, but also for your own peace of mind. At this stage it does not matter to your mother, though none of us know what flicker of awareness there may be, but for your own sake keep visiting when you can. Afterwards, accept that you did all you could. You are doing really well, all your feelings and experiences are completely normal; you will get over it, and that is not the same as forgetting her.

green n gold

Hi Stopped Clock, sorry to hear about your situation. Not sure I have much words of comfort to offer, I went through this situation a few years ago watching my mother slowly dying for 2 years. The visiting scenario you describe is exactly what I experienced, not seeing any purpose of being there with someone I loved who I doubted realised who I was, it was tough, but looking back now it brings comfort even though it didn't seem like that at the time. The whole experience aged me ten years I think, but matured me more than anything else that's happened in my life (if that makes any sense).Not a day goes by without me having some thought about her, but as the days and months go by those memories are happy ones. I guess what I'm trying to say here is that everything your feeling is normal and you will come through all this a stronger and better person, even if that seems impossible right now. Wishing you all the best and take care of yourself, its a tough road but there's light at the end (jaysus, I need to avoid clichés, don't I ?) tc x

Stopped Clock

Thanks all. I'm feeling better about it now. I get a bit upset sometimes and don't really have anybody to turn to.

childsplay

It sounds like you might be in shock and why wouldn't you be? You are going through a very traumatic event at the minute. Losing your Mother is tough and Alzeimhers is a difficult disease to cope with.
I would think that you need to take care of yourself. Eat well, get enough sleep and find someone that you trust to talk to.
Your Mother will be receiving palliative care now and I would encourage you to ask questions of the nursing home staff in relation to it. Its helpful to know and to understand what will happen now. It might take some of the anxiety and worry out of it.
I wish you well and hope that you find some piece of mind.

Stopped Clock

Yes she's receiving palliative care butt I really don't want to ask questions. I know the basics of what's going on but I can't cope with knowing more. I'm trying to stop my brain from melting.

childsplay

Then maybe just concentrate on taking care of yourself. At least then you will have something in the tank for road ahead.

benjydagg

Good morning, I lost my mum 13 years ago. Ovarian cancer. From being diagnosed to finally saying goodbye was 5 years. The hardest part was the final 3 months when we waited and watched as she got thinner and thinner. Months in a hospice, followed by long weeks at home in her own bed as she requested, until her last final breathe in the early hours of the morning.
The human body is an amazing thing. It will do everything in its power to stay alive.
You seem to feel that death is imminent with your mum, but it could be along way off yet. Be prepared for that.
You need to take each day as it comes. Do not be afraid to ask the professionals the obvious tough questions, they deal with death everyday. And they are the professionals.
Keep your regular routine going, don't feel guilty, because, when your mum passes, no matter what you imagine now, life will go on, as it has to.

Shint0

Stopped Clock wrote: »

I feel so conflicted. I know my mother would not have wanted to end her days in the way she has. I've not had a proper mother for many years because of this dreadful illness and I know it has scarred me. When she goes I don't know what to think. Will I miss her even though she's gone already? Will I be relieved that her suffering's over? Or will I be even more upset. I was shocked that I panicked so much over that Peter Mark phone call.

Stopped Clock, when one of my parents passed away a friend from a different culture and religion came for the wake/removal. He commented that nobody was crying because in his culture all the women would be wailing although he said sometimes it can be a bit too dramatic but is part of the tradition.

I pointed out that the person my parent was had long since passed on in the months previously and their body had just continued to break down until they took their final breath. Instead of the grieving process starting at the time of death it was almost as if it was coming to its conclusion.

The grieving process where a terminal illness is involved can be very different from the usual theories on grief after death which say we go through phases of shock, denial, depression and acceptance.

Depending on the situation and the type of illness there is nothing as stark as having 'the conversation' with the medical team which ultimately leads to signing a 'Do Not Resuscitate' order and agreeing to cease further medical treatment.

This issue can also lead to differences of opinion with family members some of whom might consider it morally wrong to take such an action which happened in our case but they changed their mind quickly once they processed the reality of the situation. Indeed it can feel like you are very much playing God when you put pen to paper in that scenario but it is medically and socially endorsed as an act of kindness to reduce any prolonged further suffering.

Your username is also very appropriate because in some ways you feel as if your own personal life is on hold for an event which you know is inevitable but with no determinate point.

The complexities of the dying process throw up so many different issues some of which you are experiencing; conflicting emotions, guilt, feelings of obligation, sadness, memories which are positive and in some cases perhaps not so positive.

If it's the first time to experience a close death within a family it can be even more daunting but for those who have been through the process it's good to recognise that those reactions and emotions are quite common without being too critical or harsh on ourselves.

catbear

Recently lost my mum to Alzheimer's. We accepted that she was long gone but didn't really start grieving until her body ran out.

All you can do is accept the natural process of physical deterioration. No one wants to die but its a natural process.

We did all we could do to ensure she was comfortable. That was all that could be done.

WhiteMemento9

Shint0 wrote: »

Stopped Clock, when one of my parents passed away a friend from a different culture and religion came for the wake/removal. He commented that nobody was crying because in his culture all the women would be wailing although he said sometimes it can be a bit too dramatic but is part of the tradition.

I pointed out that the person my parent was had long since passed on in the months previously and their body had just continued to break down until they took their final breath. Instead of the grieving process starting at the time of death it was almost as if it was coming to its conclusion.

The grieving process where a terminal illness is involved can be very different from the usual theories on grief after death which say we go through phases of shock, denial, depression and acceptance.

Depending on the situation and the type of illness there is nothing as stark as having 'the conversation' with the medical team which ultimately leads to signing a 'Do Not Resuscitate' order and agreeing to cease further medical treatment.

This issue can also lead to differences of opinion with family members some of whom might consider it morally wrong to take such an action which happened in our case but they changed their mind quickly once they processed the reality of the situation. Indeed it can feel like you are very much playing God when you put pen to paper in that scenario but it is medically and socially endorsed as an act of kindness to reduce any prolonged further suffering.

Your username is also very appropriate because in some ways you feel as if your own personal life is on hold for an event which you know is inevitable but with no determinate point.

The complexities of the dying process throw up so many different issues some of which you are experiencing; conflicting emotions, guilt, feelings of obligation, sadness, memories which are positive and in some cases perhaps not so positive.

If it's the first time to experience a close death within a family it can be even more daunting but for those who have been through the process it's good to recognise that those reactions and emotions are quite common without being too critical or harsh on ourselves.

This is a very good post. My Mum passed away last week after being diagnosed with a terminal illness in November of last year. After the initial wave of grief what has followed mainly is relief for my mother that her struggle with a truly horrific illness had ended. She endured it with amazing grace, dignity and good humour but in many quiet moments together she talked to me about how enough was enough that she now just wanted to be at peace and no longer had the energy to endure more. The loneliness is the thing I find most difficult at the moment. I have many good people around me but none of them are the person I want to talk to.

Something else strange which I am going to try verbalize but will probably struggle as I'm not quite sure myself what I am trying to saying. I don't think on some level I have accepted that my Mum is gone forever. I am not mad, I know with rational thought on a logical level that my Mum has died. I feel though that on some deeper level that acceptance hasn't translated. I am not spiritual, I have no thoughts on an after life. I mean very much in the here and now. This may sound mental but I feel that because I got so used to seeing my Mum so much over the last while when she was effectively dying that on some level I have convinced myself I will still see her again. Maybe it is too soon. Maybe the length of time my Mum has been sick has led to an internalization of emotions that I haven't caught up with but it all feels very weird at the moment.

Shint0

Very sorry for your recent loss, WhiteM. I had that same experience you had directly after their passing that perhaps it is not the end and almost a sense that their spirit was around.

It was very intense at times and in my own personal situation felt almost closer to them at that point than during their lifetime having conversations with them in my head I wasn't able to have when they were alive. That initial intensity did pass after about two months.

My parent always had a fear around death and even though they were ill for a long time I don't think they fully accepted they were going to die. Watching them go through their biggest fear in some ways I found has made facing my own mortality more comfortable to deal with.

The OP's situation is probably a little different as their mother has Alzheimer's but in any case you are always left wondering when was the last point they were fully aware of their surroundings before they began to slip further and further away.

Stopped Clock

Just wanted to thank you all for your kind words x

looksee

You are very welcome Stopped Clock, please feel free to pop in again if you need to chat or discuss anything.

Stopped Clock

I thought I'd stop by and thank those of you who were kind enough to say nice things on this thread. Your words helped at a tough time in my life. Mum died recently so that chapter has finally closed. Depending on how I feel I might post in the bereavement folder.

Baybay

So sorry for your loss, Stopped Clock. Be kind to yourself, it's a confusing & difficult time.

looksee

I'm sorry for your loss, Stopped Clock, though I know that really the loss was a good while ago. She is at peace now. Thank you for coming back to tell us and take care of yourself.

catbear

Sorry for your loss.

Shint0

Sorry to hear that, Stopped Clock. Any loss no matter what the circumstances is never easy. Wishing you well during this difficult time.