What now?

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Evening everyone
Its been a while since i last posted, but feel the need to talk and ask how other people deal with this situation.

Mum has had late onset Alzheimers for 5 years and in care for 3. Must say care home is superb and she is definitely in the best place.

Ive seen massive changes over last few months each time I visit... her speech is next to none, she cant walk much now without support, if at all, she has lost weight due to loss of appetite and now her swallowing is declining, hence unable to eat or drink properly. She had the RS virus over December/January but has pulled through that.

As a family, we have decided we dont want mum put onto a food drip or suchlike if the need arises, or to go into hospital. Just want her to end her life peacefully, with dignity at the care home, as and when the time comes. GP is also on board with our decision.

My brother lives abroad, as done one son and the other one not too near, but Epilepsy and cant drive at the moment. So i have the whole responsibility on my shoulders, as I have done all this time. Im now finding it incredibly hard to deal with how mum is, knowing she really isnt here or there. No quality of life, just existing. I know she is in the last stages of Alzheimers and we all just want her free of that.

I feel like im in limbo... my "real" mum isnt there, but in theory, she still exists. Does that sound odd? I cant grieve, I cant move on. Just waiting for the inevitable. What a way for someone to see out their days.

Thank you for listening. Im sure many of you must be in the same boat as Im in, sadly.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi. I just wanted to ask - did you intend to give your thread the title you did? If not just let me know and a mod can change it for you.
 

Bittermama

Registered User
Jun 9, 2012
27
0
Kingston, Surrey
Hi, I am also in this situation at the moment. Mum still is in her own home with a myriad of carers, as my sister doesn’t want her in a home. She has been battling this terrible disease since 2010 and is now in final stages. She is having a swallowing assessment next week as it’s taking longer to feed her, but she still enjoys her food, albeit puréed. My sister wants to feed her through a tube when she gets to this stage as a friend of hers watched her father starve to death and told her it was terrible. I don’t know what to think or do. I too wish mum would slip away but she is on so much medication it must be keeping her going. We have a non supportive gp who won’t even visit her so we go on and on, and its agony and like you I can’t bear it.
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Hi Bittermama
I completely identify with all you are going through and are feeling. Do we ever know the right things to do, as its all a learning curve? My dad also went into care the same time as mum as he was immobile and frail and and couldnt live alone or cope once mum was taken into care. He sadly passed away after a year but mum was oblivious, and also to the death of 2 of her brothers and a best friend. In a way, ignorance is bliss and she was saved all the grieving, but i had to do that for her too. Ive read that a food tube doesnt improve their quality of life or extend it, so really what is the point? Thankfully my family all agree as does her GP. Sorry yours isnt more supportive. Mum had her swallowing assessed and its really a matter of time. She is having trouble keeping down water sometimes, but carers are good in that they keep trying to give her drinks (through a spouted beaker) very regularly. I feel its almost cruel to keep mum alive, although all the medical staff have a duty of care to keep her alive, but for what... no quality of life, losing her dignity, cant do a thing for herself.... even animals get more consideration when in pain and suffering. Vets can put them out of their misery. I think its the family of an alzheimers sufferer who suffer more, day to day, week by week. Take care of yourself and keep strong. It may be of some comfort to know you arent alone in this horrible situation.
 

Babymare01

Registered User
Apr 22, 2015
315
0
Gosh you are a mirror image of me and I completely understand how you feel. My mum is like yours and like you I am carrying this all on my shoulders with a silent sibling and daughter in Aussie. I to have discussed no drips/hospitals and DNR with the doctor and home and both support me thankfully. And thankfully mum is in a wonderful loving caring NH.

Its a waiting game. Sitting watching and waiting. My mum has she was has gone but she is still here! And that I struggle with so much. I feel selfish grieving her now but I do. How can I keep strong for mum because I often feel so weak crying when I sit feeding her lunch. Infact crying all the time for mum - like I am now :( But I know I must stay strong What I would give to have 1 last conversation with mum. Just 1 last chat over a brew like we used to :(

You are not alone xxx
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Babymare01
Oh my goodness.... i see what you mean.. i could have written your post! I dont live near mums care home and it was closed over December/January with flu virus, so will see her at weekend. I feel so guilty not going as often as I should but i have to gear myself up for each visit and then am in a state for a few days after. The image in my head wont leave me. I have to look at old photos to remember her prior to Alzheimers days! Thankfully my granddaughters remember her well before she was ill. My brother is actually over from abroad this weekend to see mum, but think he will get a massive shock, despite me sending photos. I find it hard enough each month but he's not see her since last summer. We are grieving for someone who is "still alive" if thats what its called. Its often easier when someone has died as you accept it and get over it, but this waiting game is horrendous. Im so sorry for what you are going through, but as you say, it does help knowing others feel just the same.

We definitely arent alone! Keep strong. x
 

honeybears

Registered User
Oct 18, 2014
41
0
Hampshire
I too have just had to make the painful decision to prepare for end of life care for my Mum and having read all of your threads I can see so much of my situation in all of yours, so whilst it is easy to think you are the only one going through this, there is some comfort that no-one is alone in this horrible journey, no matter how hard it is.

Mum was taken into hospital just over a week ago from the care home where she has lived for the last three years and was confirmed as having pneumonia - her eating/drinking had been in decline for a couple of weeks previously but that was put down to her having a bit of a cold and she had been on antibiotics prior to that - since being in hospital she has refused to eat/drink and has become more confused and unresponsive to any attempts to treat her.

On Monday having spoken to the Doctor, she said that medically they could do no more for Mum, they had treated the pneumonia and she had responded, but within 48 hours of the completion of the antibiotics her blood test results were showing a general decline and for this reason the decision was made not to continue with any further treatment but to arrange for end of life/palliative care to be put in place for her.

As Crafty J said of her experiences, Mum hasn't been Mum for a very long time now but you still have to watch this person decline who facially is still my Mum even if her spirit is no longer there.

To cap it all, my Dad has mid stage vascular dementia - it has been decided that he isn't told Mum is at end of life stage as it will do nothing to help the situation or the end result as he doesn't understand half of what he is told and only last week he told someone how well she was doing and she was eating her favourite biscuits when the night before he had visited her in hospital and got upset by what he had seen, even though I had warned him not to expect too much.

I too feel like I am going through a waiting game with normal life going on around me, never knowing when the phone will ring to bring bad news but when it does, at least Mum won't be suffering from this horrible illness any longer.

A friend of my said I will need to be strong and that I will.
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
honeybees
So sorry to read you too are in a similar situation. My mum has same symptoms as yours, but minus the pneumonia. From experience of my dad, who didnt have Alzheimers, but was very poorly, once they finally decided they could do no more for him after yet another hospital admittance, they put him onto palliative care back at the care home and i was told this usually lasts up to 5 days. He died on the 5th day. But I had been told 6 months earlier he has 2 weeks for end of life care....shows how powerful the brain is!

How sad for you to have your dad in such a position too. Heartbreaking stuff isnt it? You want to protect him from seeing your mum and as to how poorly she is. I wonder if deep down inside he knows? My dad tried to ignore my mums alzheimers for so long as he was scared of what the future held. I was the one who had to inform GP and take mum to all the diagnosis etc. That was pure hell.

I used to dread the phone ringing, either from carers prior to them going into care, or from the care home or hospital. But now, as weird as it sounds, I want that phone call. The one to end mums suffering and our floating on another planet. She has lost her parents and 4 brothers - Im sure they are all waiting for her.

Like you, you want your mum to have dignity and to end her life in peace, not suffering and to slip peacefully into the next world. I think its amazing how strong we can all be when we have to and this has just proved it.

Sending you my best wishes and please keep me updated with how things go with your mum. x
 

honeybears

Registered User
Oct 18, 2014
41
0
Hampshire
Thanks Crafty J - as you say, I am dreading the phone ringing but also I want that phone call to come - I went to see Mum yesterday and was shocked at the decline in just 24 hours and whilst I have not experienced end of life for anyone before, I honestly expected that phone call to come during the night but at the moment I am still waiting.

My thoughts are with you too and let me know how things go with your Mum as well - as everyone who posts agrees, just knowing there are others out there at this difficult time is a comfort.
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Honeybears

Sorry I got your name wrong yesterday.

Im amazed when you see such a decline in someone how they can still exist. I didnt think mum would get through 2 winters having chest infections and RS virus, let alone the Alzheimers.

I really feel for you right now and you really are in limbo. It may sound cruel, but i hope your mum is soon at peace and you can move on with the grieving properly. Im pretty sure our mums arent aware of whats going on but its us who have had to deal with it all, and watch our mums disappear in front of us - so hard. Will be thinking of you and your mum.

My brother is seeing mum today for the first time since last summer and he's in for a shock. I will see her on Sunday. Thanks for your kind words too.

It is comforting knowing there are others going through the same hell as all of us - im glad i came back to this forum. Take care. x
 

Sparks 59

New member
Dec 24, 2017
7
0
Hi

I have just been reading all your posts and this is a horrible illness and my heart breaking for you all. It is so wicked for the families watching the person they love fading away peace by peace.

My mum went into hospital on the 12th of December with aspiration pneumonia sepsis and a water infection which she pulled through but she also lost her swallow reflex and was put on an amber pathway.

However she continued to be on Oxygen and antibiotics only to be put back on them as soon as she came of them.

The strange thing was I got my mum back for a few days not sure if it was the oxygen but she had not remembered my name for months or been able to have a conversation with her really that made any sense. However she remembered my name who I was married to my son , sister name and brother the same and I did have a conversation with her which was lovely.

Mum passed away really quickly and suddenly on the 12th of January which took us all by surprise even the doctor. She had woken smiled and spoke to everyone and then passed away within the next 30 minutes. I could not get there in time which is something that will always be with me the doctor spoke to me and said he could not believe it either. She did look at peace and he said it was really quick which I am really thankful for after all she had suffered.

I am so glad they did not ask me about a feeding tube as the lady in the next bed had Alzheimers and had a feeding tube in her nose however because she was scared she kept pulling it out it was horrible to watch.

I really feel for you all as I do know the feeling of dread waiting for the phone to ring.

Now mums passed I thought I would feel an enormous sense of relief as I know she had not had any quality of life for a couple of years now really but I don't I really do not know what I feel. I am so sad and upset that she had to go through that and I just ache to see her face or here her voice it is just a horrible., horrible illness.

All you can do it love and care for the person that was and whatever you do remember you are doing it for there best interests and out of love and compassion.

lots of love to you all xxx
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Hi Sparks

First of all, so sorry to hear about the loss of your mum. No matter what the circumstances, its one of the the hardest things to face.

You will treasure those few days when you "got your mum back" and that she did manage to talk and remember your name... we take it for granted those little things, but once they are lost, its heartbreaking. What I would give to have a chat with my mum... not done that for 3 years or so? Her eyes light up when she sees me though, so that means the world to me.

It sounds like your mum knew in her heart she had seen all those she had wanted to and was ready to go. My best friend sat with her mum for hours and hours, popped home for a short break and her mum passed in the time she was away... but Ive also heard that they wont want to pass away in front of family too.

I agree about not having a feeding tube in. Ive made this clear to care home staff, GP etc and they all agree. Alzheimers patients in hospital would be so bewildered and staff just dont understand them, whereas at least the care home staff know them oh so well.

You have relief in that your mum is no longer suffering, but there are no rules as to how you should feel. Grief takes ages to handle and we all do it in different ways. Ive sort of been grieving for mum as she was for 5 years almost! Just remember all the happy times you had with your mum and keep that image in your head, not as you last saw her.

I hope this forum will help you to deal with grief but also knowing so many of us in similar situations. My condolences to you and your family. xx
 

malengwa

Registered User
Jan 26, 2017
258
0
Hi craftyJ, honeybeas, babymare, bittermama just to let you know my thoughts are with you. My mum passed away in December so still quite raw, but I was very much where you are. In many ways I am thankful that mums Alzheimers journey was short, she declined rail in her last year and particularly in the last 4 months. She had cancer too which I think hastened things. Mum was just a shell at the end, and living faraway and working, I only got to visit her weekly or even fortnightly. I was grieving for her whilst she was still alive as many of us do. Now I feel relieved, although I get overwhelming sad feelings too. But I've said many times, I now wallow in memories, photos that make me smile and talking about things we did together. This is what I felt I didn't do enough of in those last month. I was exhausted, still am in some ways, but I am coping better.
I'm waffling I know, but somehow you stay strong because you have to but I do hope you have someone to lean on too, friend or family, just someone.
I wish your mums to pass peacefully and your agonising waiting is short. I will ever be thankful that mine was, and I know it sounds weird.
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
HI Malengwa
So sorry to hear about your mum. Cancer on top of Alzheimers - wow... what a nightmare. Condolences to you and your family but she is free of these awful diseases.

Memories in our minds and photographs help keep people "alive" down the generations and im thankful my granddaughters knew both of my parents, so lucky enough to have great-grandparents and remember them both before they were ill. But photos can tell many a story too. Cant ever have enough of them.

I dont know how i will feel when mum dies. I assume I will feel a sense of relief but i think its going to throw me completely. Just cant guess it, can you? The last 5 years have been a nightmare - wouldnt wish that on anyone, although sadly, there are thousands of us experiencing it.

I find writing on here helps immensely - even if to just get feelings and emotions out of my system. I joined a local choir 4 years ago and thats been the best therapy ever! Many of us there in the same boat too. Have a very supportive husband which has kept me sane.

Whilst we all wait for the inevitable, we know we arent alone. x
 

Sparks 59

New member
Dec 24, 2017
7
0
Hi Sparks

First of all, so sorry to hear about the loss of your mum. No matter what the circumstances, its one of the the hardest things to face.

You will treasure those few days when you "got your mum back" and that she did manage to talk and remember your name... we take it for granted those little things, but once they are lost, its heartbreaking. What I would give to have a chat with my mum... not done that for 3 years or so? Her eyes light up when she sees me though, so that means the world to me.

It sounds like your mum knew in her heart she had seen all those she had wanted to and was ready to go. My best friend sat with her mum for hours and hours, popped home for a short break and her mum passed in the time she was away... but Ive also heard that they wont want to pass away in front of family too.

I agree about not having a feeding tube in. Ive made this clear to care home staff, GP etc and they all agree. Alzheimers patients in hospital would be so bewildered and staff just dont understand them, whereas at least the care home staff know them oh so well.

You have relief in that your mum is no longer suffering, but there are no rules as to how you should feel. Grief takes ages to handle and we all do it in different ways. Ive sort of been grieving for mum as she was for 5 years almost! Just remember all the happy times you had with your mum and keep that image in your head, not as you last saw her.

I hope this forum will help you to deal with grief but also knowing so many of us in similar situations. My condolences to you and your family. xx
Hi Sparks

First of all, so sorry to hear about the loss of your mum. No matter what the circumstances, its one of the the hardest things to face.

You will treasure those few days when you "got your mum back" and that she did manage to talk and remember your name... we take it for granted those little things, but once they are lost, its heartbreaking. What I would give to have a chat with my mum... not done that for 3 years or so? Her eyes light up when she sees me though, so that means the world to me.

It sounds like your mum knew in her heart she had seen all those she had wanted to and was ready to go. My best friend sat with her mum for hours and hours, popped home for a short break and her mum passed in the time she was away... but Ive also heard that they wont want to pass away in front of family too.

I agree about not having a feeding tube in. Ive made this clear to care home staff, GP etc and they all agree. Alzheimers patients in hospital would be so bewildered and staff just dont understand them, whereas at least the care home staff know them oh so well.

You have relief in that your mum is no longer suffering, but there are no rules as to how you should feel. Grief takes ages to handle and we all do it in different ways. Ive sort of been grieving for mum as she was for 5 years almost! Just remember all the happy times you had with your mum and keep that image in your head, not as you last saw her.

I hope this forum will help you to deal with grief but also knowing so many of us in similar situations. My condolences to you and your family. xx
Hi Crafty thank you so much for your kind words it does help knowing that you are not the only one going through this horrible time.
Hi Sparks

First of all, so sorry to hear about the loss of your mum. No matter what the circumstances, its one of the the hardest things to face.

You will treasure those few days when you "got your mum back" and that she did manage to talk and remember your name... we take it for granted those little things, but once they are lost, its heartbreaking. What I would give to have a chat with my mum... not done that for 3 years or so? Her eyes light up when she sees me though, so that means the world to me.

It sounds like your mum knew in her heart she had seen all those she had wanted to and was ready to go. My best friend sat with her mum for hours and hours, popped home for a short break and her mum passed in the time she was away... but Ive also heard that they wont want to pass away in front of family too.

I agree about not having a feeding tube in. Ive made this clear to care home staff, GP etc and they all agree. Alzheimers patients in hospital would be so bewildered and staff just dont understand them, whereas at least the care home staff know them oh so well.

You have relief in that your mum is no longer suffering, but there are no rules as to how you should feel. Grief takes ages to handle and we all do it in different ways. Ive sort of been grieving for mum as she was for 5 years almost! Just remember all the happy times you had with your mum and keep that image in your head, not as you last saw her.

I hope this forum will help you to deal with grief but also knowing so many of us in similar situations. My condolences to you and your family. xx


Hi Crafty thank you so much for your kind words it really means a lot to me especially when I totally understand the stage you are at with your mum so you have your own grief to deal with and it is heart breaking please take care of yourself and be kind to yourself. I will be thinking of you xxxx
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Thank you Sparks 59. Having seen my mum yesterday, she seems to have bounced back from the virus as you will see in my "Quite amazed" thread. Whilst its great to see her more like herself again, I have to still remember the Alzheimers and the hold it has over her. The rollercoaster effect still going on, and its like playing games with my mind. Because she is over the virus, sadly doesnt mean that the Alzheimers has gone.

Just have to take it day by day, week by week, and probably months by months. who knows?

I do hope you are doing OK. x
 

honeybears

Registered User
Oct 18, 2014
41
0
Hampshire
Quick update on Mum and hope everyone is staying strong - Mum is still hanging in there though how she finds the strength to keep going when she is so frail I do not know - the agony for the rest of us however keeps going but it has been decided that she will not be moved to a nursing facility at this late stage but will remain in hospital where she has now been moved to a side room.

Today I have the difficult task of going to the care home where she has lived for the past three and a half years and remove all of her belongings - the last time I was at the care home was a normal visit just before Mum was taken into hospital and I haven't been there since - everything in that room represents her and what we have done for her for the time she has been there - it is something that has to be done but I am not looking forward to it
 

CraftyJ

Registered User
Jan 31, 2014
35
0
Bedfordshire
Hi Honeybears

Amazing your mum is still hanging onto life - it does make you wonder where their strength comes from. She clearly isnt ready to leave yet. At least she is being kept comfortable now and not being moved.

Wont be pleasant for you having to remove all her belongings from her room at the care home, but it makes sense if she is staying in the hospital, so its a job that has to be done. Not an easy one, but necessary.

I had to clear out my parents house when they both went into care, and it seemed hard doing that with them both still alive. Had 62 years of personal stuff and junk to clear and then sell the house.

Will be thinking of you as you clear your mums possessions out. Best wishes to you and hope your mum is comfortable.
 

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