struggling with mum end of life dementia

[rainflower]

Hello everyone, this is my first post so please bear with me I just need to talk to other people who will understand what I'm going through. My mum has always suffered with mental health issues that become particularly bad when I was a teenager, my dad quit work to care for her when I was 15 and it was a very hard time, sadly my dad passed away in 2013 and we made the hard decision to put mum into an assisted care home, it was lovely and for a few years my mum did really well. She gave up smoking and started eating really well, I was very happy with her being there and felt her level of care was excellent. About a year ago she really started to go down hill mentally, became incontinent, had to have assistance with eating, became very confused during conversation etc, the assisted care home said they were struggling with mums care needs. About 3 months ago mum went into hospital as she was poorly with a water infection and ended up staying in hospital for a month as her medication Was causing problem particularly lithium. When mum was due to be discharged the care home said they could not take her back, this was heartbreaking, we then moved her to a nursing home, it is ok but there are so many residents and I worry she now doesn't get as much care. She was in the new home less than a week when she was back in hospital this time with aspiration phenmonia, I was called at 3am in the morning telling me to come in as mum was critically ill, I honestly didn't think she was going to pull through, miraculously she did but was nil by mouth, after a week in hospital they said the kindest thing to do would be to stop all treatments and let her pass, she was on antibiotics, oxygen and iv drip. She was moved into side room we were given end of life brochure, I braced myself for her passing. She pulled through again, this has been such an emotional roller coaster. She is now back in home, this is a few months on and she has lost an incredible amount of Weight and will barely eat. She doesn't usually know who I am, barely talks and just sits in her chair in her room most of the time or sleeps.
It's heartbreaking, iv always visited mum regularly but at the moment I haven't been going as much as usual, I have two little ones and I'm pregnant and it's really taking its toll on me, I'm waiting for a chc assessment to see if we can get more funding to move her somewhere better. Thankyou for reading my post I just feel a bit lost at the moment.

 

[LadyA]

Rainflower, welcome to Talking point. I'm so sorry that you have needed to find us, in such a tragic situation. So many on here have been through what you are going through now, so you are in "good" company here, with people who do understand. My own husband died of aspiration pneumonia in 2015, 10 weeks after being sent back to his nursing home from hospital once treatment had stopped.

I'm sure the Nursing Home are doing all they can to keep your mum comfortable and pain free, and she is taken care of. You need to think of yourself and your children and coming baby too. The Home will call you if you are needed. You can take some time out.

I know others will be along to share with you too. Take care, and do keep posting and let us know how things are.

 

[jaymor]

Hi Rainflower and welcome from me too.

My husband was admitted to hospital with aspiration pneumonia and returned to his nursing home clear of the pneumonia but far from where he was before the illness. We too were told to prepare for the worst. Slowly he rallied but he was now incontinent, had to be hoisted and he never walked again. His appetite deminished but he was alert and continued to frighten us from time to time for a few years more.

I know how wearing it was and I had no one else to look after or worry about so please take care of yourself, your family and take some time for yourself.

 

[lemonjuice]

You are certainly not alone

rainflower it is really tough at this stage.

Like it seems jaymor's experience my mother has been 'potentially end-of-life' for over 2 years now. That's when all medication was stopped, apart from regular doses of parcetamol in case she's in pain, comfort measures only and the just-in-case meds was prescribed.
She comes on and off those meds depending on the emergency. Sometimes we have a 2 month gap, sometimes just a week or even a couple of days between 'events'. These can range from seizures, infections, episodes of unconsciousness, dypsnea . . . complicated by her heart disease and ischemia, which because they are vascular related are probably the cause of many of these emergencies, rather than her dementia.

Over the 2+ years, that has taken it's toll on me and considering she only has occasional episodes of 'responsivesness', even in between the events, I have had to stop visiting so regularly. For my own mental health. Visiting someone who hasn't spoken for over 3 years now and doesn't even react to a hand squeeze, stroking her face etc or even seem aware that anyone is in the room is a pretty pointless exercise. I visit for very short times, often no more than 10 mins and that merely to check on the NH and make them aware that I am on their case and my mother has not been abandoned by me.

In my mother's case, she has been 'dying' for so long, going over 40 years now, I have reached the end of my tether. Even before she developed the dementia, we used to joke about how one day she really would be dying and we'd just think it was one of her usual 'dress rehearsals' , as I've taken to calling them.
Even some of the staff, who've known my mother these past 5+ years tend not to panic straight away. Although we know any of these events could be a 'sentinel event', they usually turn out not to be.

Outsiders say, "Well that's a relief to know your mother is well looked after and you don't have to visit so often.". But that brings it's own 'cares'. Talking about her condition over the phone, when I usually get, "Your mother's fine." doesn't really tell me anything. But as I've often said what can they tell me? Sometimes she will take in a small amount of food and at other times the satff just keep going till the plate is empty. Still having more bad days than good. She gets turned regularly so a slightly different view of a different wall. But she is still breathing.

Sorry I'm going to stop there, but really this is the very worst, worst time in this disease.

 

[Babymare01]

Hello there Rainflower and welcome. Has LadyA has said many of us are or have gone through what you are experiencing so please feel comfortable to keep posting.
I have sadly watched this cruel illness strip my lovely mum of everything she was and now sadly mum is now quite far along this journey bedridden, doubly incontinent and rarely opens her eyes etc. but still has a great appetite. It actually makes me smile as, when you put the spoon to her lips, her eyes closed, her mouth opens like a little baby bird.
I’m sure the home is doing all possible to ensure your mum is cared for and pain free but I know that may not stop you worrying. My mum is in a wonderful nursing home but I still worry.
Please please do not be hard on yourself regarding how often you visit. Actually why not take a break for a week, 2 weeks or however long it takes for you to feel stronger again. You can always ring the home. Maybe speak to the manager to explain how you are struggling at moment. You must think about you and you need to be strong for your 2 little ones and the baby coming. They rely on you but your mother is being cared for. Remember you are not super woman and no one would expect you to be. You need to keep yourself well and strong for your children and I’m sure your mum would agree with that.
So take a step back. Breath.
Please keep posting Rainflower. There is a lot of kind caring support on this forum. It has been my life line
Big hugs

C xx

 

[Slugsta]

Hi and welcome to TP, I'm sorry that you are having such a tough time. As you can see, even 'end of life care' does not necessarily mean that the end is in sight. Please look after yourself, for your own sake as well as your family (((hugs)))

 

[Murper1]

Hello Rainflower and everyone in this situation. My Mum died in spring so I have had time to reflect on things. Like many dementia sufferers she had aspiration pneumonia, even though I put into practice all the advice from SALT. Ultimately her death was serene, pain free and I think she actively composed herself to leave this world. I read somewhere that pneumonia used to be called 'the old man's (woman's) friend'. But her decline prior to this point was of course horrible, frightening and draining. I'm sorry you are having to go through this and I feel for you. All I can say is; you do what you can. That's all. It sounds like you have made sure that your mum is provided for, so you should now take proper care of her daughter/son (that's You!) and her grand children; that is the best you can do. Hopefully you'll have occasions when you can go in to see her, to let her hear your familiar voice, or feel your touch even if she no longer to respond to you; somewhere inside she just may know and appreciate how much you are doing. Out of interest, can you sometimes be there to say goodnight to her? My Mum was at home with me so I put her to bed and I found this was the most responsive time from her, with hugs and the occasional word. At other times I sometimes read out loud from an old children's poetry book and enjoyed her bemused stares at me while I made a fool of myself ! All the best x

 

[rainflower]

Thank you all so much for your kind words and support

I'm really glad I joined this website thank you all for your support, it's nice to talk to people who understand what it is like, so sorry for all of your experiences also. I think the thing I am struggling with the most is mum used to constantly ask for me and used to light up when she saw me at the old care home. Now she doesn't know me, the one positive is its allowed me to step back a bit but then I feel guilty if I don't see her.
Merper you are right I need to focus on my girls and pregnancy thankyou x
Slugsta I think that's been the most confusing and upsetting part when you assume end of life is imminent then you have to watch someone you love suffer heartbreaking x
Ccole thank you for your kind post I think I need to not give myself such a hard time for needing a break x
Lemon juice yes I agree it really is the hardest thing to see, I feel very powerless and it would be nice if I felt me bring there bought her comfort like it used to but it doesn't seem to matter to her anymore, very hard to emotionally adjust to x
Thankyou jay more I'm so glad I have got my little ones to look after its a lovely distraction but it's very tiring and I'm so worried about mum x
Thankyou lady a as sad as it is its really helped to join this group and speak to lovely supportive people x

 

[Scouts girl]

It is just so comforting to know that we are not on our own going through this awful journey of watching our loved ones fading before our eyes.

I visited my mum today and seeing her lying in bed looking so frail and unhappy breaks my heart. She has not eaten for some weeks now and is just existing on fluids and complan but even taking this is such a struggle. I try and visit her as often as I can but it is having such an impact on my health now that I know I must step back and let the carers look after her and not feel guilty if I need a few days off. As we know this late stage of dementia can last for a long time and just the thought of how I will manage to see mum struggling fills me with despair. I want to be with her as much as I can but my husband and family need me too so I will now try and not visit so often and I know that the care home will keep me well informed of how mum is. Thank you TP for all your comforting support and advice. It has helped me so much these last few months to know that so many of us are experiencing this same awful journey and to be able to talk about our feelings and emotions is such a comfort.

 

[caringforpat]

Feeling your pain too!

Gosh - and I thought it was only me! I just joined the forum and yours is the first post I read! I am in the same boat - 10 years diagnosed and my mum currently has pneumonia,
we have ceased all meds and trying to keep her comfortable -
but every day that passes seems that there will never be an end to this cruel disease!
x

Hello everyone, this is my first post so please bear with me I just need to talk to other people who will understand what I'm going through. My mum has always suffered with mental health issues that become particularly bad when I was a teenager, my dad quit work to care for her when I was 15 and it was a very hard time, sadly my dad passed away in 2013 and we made the hard decision to put mum into an assisted care home, it was lovely and for a few years my mum did really well. She gave up smoking and started eating really well, I was very happy with her being there and felt her level of care was excellent. About a year ago she really started to go down hill mentally, became incontinent, had to have assistance with eating, became very confused during conversation etc, the assisted care home said they were struggling with mums care needs. About 3 months ago mum went into hospital as she was poorly with a water infection and ended up staying in hospital for a month as her medication Was causing problem particularly lithium. When mum was due to be discharged the care home said they could not take her back, this was heartbreaking, we then moved her to a nursing home, it is ok but there are so many residents and I worry she now doesn't get as much care. She was in the new home less than a week when she was back in hospital this time with aspiration phenmonia, I was called at 3am in the morning telling me to come in as mum was critically ill, I honestly didn't think she was going to pull through, miraculously she did but was nil by mouth, after a week in hospital they said the kindest thing to do would be to stop all treatments and let her pass, she was on antibiotics, oxygen and iv drip. She was moved into side room we were given end of life brochure, I braced myself for her passing. She pulled through again, this has been such an emotional roller coaster. She is now back in home, this is a few months on and she has lost an incredible amount of Weight and will barely eat. She doesn't usually know who I am, barely talks and just sits in her chair in her room most of the time or sleeps.
It's heartbreaking, iv always visited mum regularly but at the moment I haven't been going as much as usual, I have two little ones and I'm pregnant and it's really taking its toll on me, I'm waiting for a chc assessment to see if we can get more funding to move her somewhere better. Thankyou for reading my post I just feel a bit lost at the moment.

 

[Scouts girl]

As I have said on TP a few days ago my mum is now really poorly and is confined to bed in her care home. She is drinking some fluids but I can see she is nearing the end of her life with this awful disease. I feel now I want to stay with her all the time as I just have this awful dread that she will pass away when I am not with her and feel I would never be able to forgive myself if I could not be there for her when the time comes. I know she is getting excellent care and the staff have promised to ring me if there is any cause for immediate concern and thankfully I am only 15 minutes away in the car. Her GP has said it could be days or weeks before the end but I am just so worried I won't be there. I visit most days but it is so distressing just sitting watching her go through this. She sleeps most of the time now and is not in any pain or anxiety. What would you do in this situation? This god awful illness just tears us apart.

 

[canary]

Ive been there scouts girl and I understand the feeling of wanting to be there all the time, but honestly hun, unless she has something like a heart attack (which could come to anyone) she will not pass quickly. Even when the staff phone to say that she has reached the end it will almost certainly be several hours before she passes. My mum lasted 48 hours after I was told that her death was imminent. I slept in her room so as not to miss it, but she still passed away when I wasnt there. I was told by one of the older and experienced carers that this happens quite a lot - that the person doesnt want to pass away in front of their loved ones, so they wait until they have nipped to the loo or something and then pass away on their own. So please, please dont get upset if she does pass away when you are not there. Its what you have done in her life that counts, not whether you were there at the point of her death.
((((((((hugs)))))))))

 

[Scouts girl]

Ive been there scouts girl and I understand the feeling of wanting to be there all the time, but honestly hun, unless she has something like a heart attack (which could come to anyone) she will not pass quickly. Even when the staff phone to say that she has reached the end it will almost certainly be several hours before she passes. My mum lasted 48 hours after I was told that her death was imminent. I slept in her room so as not to miss it, but she still passed away when I wasnt there. I was told by one of the older and experienced carers that this happens quite a lot - that the person doesnt want to pass away in front of their loved ones, so they wait until they have nipped to the loo or something and then pass away on their own. So please, please dont get upset if she does pass away when you are not there. Its what you have done in her life that counts, not whether you were there at the point of her death.
((((((((hugs)))))))))

Thank you Canary that's such a comfort to know that you and many others have experienced this time in our lives. I tell her constantly that we all love her and I hope at times she understands when I get a very faint smile. As you say it is the life we have had and all the happy memories that will help us through this sad time. Lots of hugs back to you xxx

 

[lemonjuice]

As I have said on TP a few days ago my mum is now really poorly and is confined to bed in her care home. She is drinking some fluids but I can see she is nearing the end of her life with this awful disease. I feel now I want to stay with her all the time as I just have this awful dread that she will pass away when I am not with her and feel I would never be able to forgive myself if I could not be there for her when the time comes. I know she is getting excellent care and the staff have promised to ring me if there is any cause for immediate concern and thankfully I am only 15 minutes away in the car. Her GP has said it could be days or weeks before the end but I am just so worried I won't be there. I visit most days but it is so distressing just sitting watching her go through this. She sleeps most of the time now and is not in any pain or anxiety. What would you do in this situation? This god awful illness just tears us apart.

Scouts girl you do need to realise that you need to get on with your own life. Sitting by her bedside isn't going to have any effect on how long she takes to reach the end of her journey.

I've lost count of the times when Mum 'could' have been at the end, but hasn't been. Even just a month ago when what we thought could be the beginning of 'the death rattle', with respiratory secretions causing her breathing difficulties and causing her to go blue in the face. However over a month later she is still here and only yesterday, despite another seizure still doesn't seem to be anywhere near the end of her journey. She does 'appear serene' and not in any pain, which has not always been the case recently. But then she's been in this limbo state for years.

As canary points out they often seem to go when relatives are not around. So in fact I 'said' my 'final Goodbye' last month. I explained to my mother I can't sit again by her 'deathbed' watching her suffer and we've covered all the forgive me /I forgive you, /thank you / I love you so many times before. Whether her comprehension was sufficient to understand what I was saying I have no idea, but I know that after so many years of watching and waiting I need to get on with my life.