Is this the end ?

[winchywendy]

Hello although this has been a difficult time for everyone, the past two months for my family have been doubly hard. My mum was admitted to hospital on 5th April 2020 two weeks into lockdown she suddenly couldn't walk, one of her feet was swollen her memory was terrible, she was wetting herself and they kept her in hospital. We only had the occasional phone call from a doctor to let us know how she was, although my dad spoke to her nearly every day. She was in hospital for 8 weeks and now is in a nursing home, that myself and my sister found for her. We have managed to see her as she is on ground level and has a patio so we do the social distancing.
My mum is completely bed bound, doubly incontinent her colour looks awful she looks so ill. She is sleeping all the time and has not eaten anything since arriving in the care home on 29th May so she is having build up milk shakes. Her fluid in take is very low but is still taking in bits. I feel exhausted as now my dad who cannot live without my mother has started to deteriorate in health because of the seperation so not only are we concerned over mum but also dad. I am not sure if my mother is at the end of this awful disease and how long this indignity can go on she looks so ill, how long can someone live without food and being bed bound ... the questions are numerous but my poor mother is dropping weight, watching this is so heartbreaking. I would love to hear any of your experiences .

 

[Grannie G]

Hello @winchywendy

It`s heartbreaking isn`t it, especially now when you can`t have close visits to your mother.

I don`t know why some people go downhill so quickly while others have a slow progression. Infections play a big part and obviously underlying medical conditions too.

Have the doctors given you any explanation for this deterioration?

Welcome to Talking Point. I hope others with experience of this nature will be able to reassure you somehow.

 

[canary]

Hello @winchywendy

Im sorry to hear about your mum. Hospitals, surgery and/or infections can really take their toll on people with dementia. Unfortunately, it is difficult to answer your question. People in the later stages of dementia tend to have a roller coaster ride with decline interspersed with rallies. What happens is that the body closes down slowly over days and weeks (or even months), so its often difficult to pin-point exactly when they reach End of Life. I was told three times that mum had reached End of Life, only for her rally. Eventually, of course she did not, but by the time she passed away she had not taken in any food or fluid whatsoever for 17 days. Other people, of course, pass away in a very short time. Im afraid that there is no knowing until you get there.

Your mum has only recently moved to the nursing home and it sounds like they are looking after her well. Hospitals are not good environments for people with dementia and now she has been moved, you may find that she improves. She may not be eating as such, but the milk shakes are providing nourishment which may start to increase her weight and the home might be able to get her more mobile - it is not unknown, but there are no guarantees. This lockdown is unfortunate, because normally you would be able to visit and talk to the staff, so that you would get an idea of where your mum is at.

 

[Pete1]

Hi @winchywendy, welcome to the forum. I'm sorry to hear about your situation with Mum and Dad, I can understand that you feel exhausted, it is physically and emotionally draining and with you all the time. I don't know whether you have done this but it might be worth having a discussion with the Nursing Home Manager or Senior, they will have seen your Mum's situation many times before. I did that, and in conjunction with the GP, we had a very clear pathway forward with end of life care.

Are you getting any support to help with Dad?

I can concur that it is incredibly painful to witness and I can only imagine that the social distancing restrictions must make that whole situation much worse. I really do feel for you and the family, you need to make sure that you look after yourselves too. I wish you all the best. Keep posting.

 

[winchywendy]

Hello @winchywendy

It`s heartbreaking isn`t it, especially now when you can`t have close visits to your mother.

I don`t know why some people go downhill so quickly while others have a slow progression. Infections play a big part and obviously underlying medical conditions too.

Have the doctors given you any explanation for this deterioration?

Welcome to Talking Point. I hope others with experience of this nature will be able to reassure you somehow.

No I had no explanation, I know that she was suppose to have covid but no symptoms of it plus she had paratinitus, we just have no clue what was happening in hospital as information was few and far between.

 

[Nadsey]

Hiya @winchywendy , I can totally sympathise with you and your moms illness, my story is much the same, my mom has recently been admitted into a nursing home following a fall at home. My Dad and myself were caring for her and it became almost impossible to keep her safe. Since her admission into the nursing home the disease has accelerated at a ridiculous speed, both myself and my Dad visited her yesterday (first time since lockdown rules eased) and we walked straight past her, I could not recognise her, so ill, thin, unable to walk, talk and comprehend who she was let alone us.
I am currently at work, trying to concentrate whilst my head is trying to fathom how my family are to withstand this heart breaking pain, why does my beautiful Mom have to suffer this indignity for the end of her life. It's Cruel.... The only thing I can hold onto is she is till there, a kind person on this forum said that to me, she is still there hidden in the disease but she is still there.

 

[Mindquiz]

Hi @winchywendy i can understand how you are feeling. My sister and I have just faced a similar period of emotional ups and downs with mum being admitted into hospital from a care home due to severe constipation. We hadnt been able to see mum because of the lock down but knew from the video calls we had made to her that she was going down quickly. Despite being reassured by the care home that she was on the list to see the doctor we finally realised that this wasn’t the case.

mum was so ill she was placed on end of life palliative care which came as a huge shock to us all. After four weeks in the hospital they have been able to stabilise her and are wanting to discharge her. However I am reticent to send her back to the care home and wonder what others felt about placing her in a different nursing home. Or alternatively should I work with the current residential home to see if they can get it right this time. I would welcome your thoughts and experiences.

 

[padawan444]

This all sounds so very familiar, and I just wanted to express my sympathy for you. My mum deteriorated extremely rapidly too and much of this took place during a lengthy hospital stay.

I would agree that my mum moving into a nursing home was a source of such relief - she was finally in a comfortable and permanent setting with her own things around her, and it was much nicer for her and her visitors . My mum hasn’t eaten Anything for a long time, other than puddings and milkshakes and I’ve been astonished at how little energy she needs. I find that my distress and sense of unease comes in waves - usually triggered by news from the nursing home. It take a while for me to feel calm and level again, but I do manage a little bit of respite. I find that talking to staff there is reassuring and makes me feel a little more level headed.

I’m so sorry that your dad isn’t well either. what a tough time this is

 

[winchywendy]

Hello @winchywendy

It`s heartbreaking isn`t it, especially now when you can`t have close visits to your mother.

I don`t know why some people go downhill so quickly while others have a slow progression. Infections play a big part and obviously underlying medical conditions too.

Have the doctors given you any explanation for this deterioration?

Welcome to Talking Point. I hope others with experience of this nature will be able to reassure you somehow.

 

[winchywendy]

Hi Grannie G we have had very little interaction with any doctors over the past two months, i just feel mentally exhausted, but thankyou for the welcome.

 

[winchywendy]

Hiya @winchywendy , I can totally sympathise with you and your moms illness, my story is much the same, my mom has recently been admitted into a nursing home following a fall at home. My Dad and myself were caring for her and it became almost impossible to keep her safe. Since her admission into the nursing home the disease has accelerated at a ridiculous speed, both myself and my Dad visited her yesterday (first time since lockdown rules eased) and we walked straight past her, I could not recognise her, so ill, thin, unable to walk, talk and comprehend who she was let alone us.
I am currently at work, trying to concentrate whilst my head is trying to fathom how my family are to withstand this heart breaking pain, why does my beautiful Mom have to suffer this indignity for the end of her life. It's Cruel.... The only thing I can hold onto is she is till there, a kind person on this forum said that to me, she is still there hidden in the disease but she is still there.

 

[winchywendy]

Nadsey ...such a beautiful way of putting the situation. It sounds like yourself and me are going through very similiar situations, i too work full time and trying to concentrate at work is very difficult when all you can think about is our beautiful mothers. Thankyou for sharing your experience x

 

[winchywendy]

This all sounds so very familiar, and I just wanted to express my sympathy for you. My mum deteriorated extremely rapidly too and much of this took place during a lengthy hospital stay.

I would agree that my mum moving into a nursing home was a source of such relief - she was finally in a comfortable and permanent setting with her own things around her, and it was much nicer for her and her visitors . My mum hasn’t eaten Anything for a long time, other than puddings and milkshakes and I’ve been astonished at how little energy she needs. I find that my distress and sense of unease comes in waves - usually triggered by news from the nursing home. It take a while for me to feel calm and level again, but I do manage a little bit of respite. I find that talking to staff there is reassuring and makes me feel a little more level headed.

I’m so sorry that your dad isn’t well either. what a tough time this is

 

[winchywendy]

padawan44

This all sounds so very familiar, and I just wanted to express my sympathy for you. My mum deteriorated extremely rapidly too and much of this took place during a lengthy hospital stay.

I would agree that my mum moving into a nursing home was a source of such relief - she was finally in a comfortable and permanent setting with her own things around her, and it was much nicer for her and her visitors . My mum hasn’t eaten Anything for a long time, other than puddings and milkshakes and I’ve been astonished at how little energy she needs. I find that my distress and sense of unease comes in waves - usually triggered by news from the nursing home. It take a while for me to feel calm and level again, but I do manage a little bit of respite. I find that talking to staff there is reassuring and makes me feel a little more level headed.

I’m so sorry that your dad isn’t well either. what a tough time this is

 

[winchywendy]

padawan44 thankyou for your kind words, i too hope your situation eases a little like mine. I am so glad mum is out of hospital as during the lockdown we had very little communication from any medical staff. The home she is in seems nice but she has only been there for nearly 2 weeks.

 

[winchywendy]

Hi @winchywendy, welcome to the forum. I'm sorry to hear about your situation with Mum and Dad, I can understand that you feel exhausted, it is physically and emotionally draining and with you all the time. I don't know whether you have done this but it might be worth having a discussion with the Nursing Home Manager or Senior, they will have seen your Mum's situation many times before. I did that, and in conjunction with the GP, we had a very clear pathway forward with end of life care.

Are you getting any support to help with Dad?

I can concur that it is incredibly painful to witness and I can only imagine that the social distancing restrictions must make that whole situation much worse. I really do feel for you and the family, you need to make sure that you look after yourselves too. I wish you all the best. Keep posting.

 

[winchywendy]

Hi Pete 1, my dad will not have any help what so ever only from me or my sister. We did have a chat with the senior nurse and he said mum is not on end of life care which kind of shocked me. How bad does someone have to get its quite frightening x

 

[Pete1]

Hi @winchywendy, the Senior Nurse will have seen the situation many times before so will have a very good understanding of Mum's situation. I remember sitting with Mum during end of life care and not wanting to leave and the Senior told me to go home as it was several days away, which totally shocked me - she was right though. There is nothing wrong though with you continuing to ask for their opinion.

It's a shame Dad won't consider any additional support, and I guess that is understandable as he probably needs to speak and see you at the moment, and won't realise that you can still do that. I don't know what his needs are and how you are managing - if it is becoming more difficult for you and your sister to manage (delivering personal care sometimes doesn't feel appropriate for a parent) perhaps you can explain to Dad you need a bit of help at the moment and he will be doing you a big favour, just for now, and you will still be popping in to see him.

It sounds like you have a lot on your plate at the moment. Take care of yourself.

 

[Hazara8]

Hello although this has been a difficult time for everyone, the past two months for my family have been doubly hard. My mum was admitted to hospital on 5th April 2020 two weeks into lockdown she suddenly couldn't walk, one of her feet was swollen her memory was terrible, she was wetting herself and they kept her in hospital. We only had the occasional phone call from a doctor to let us know how she was, although my dad spoke to her nearly every day. She was in hospital for 8 weeks and now is in a nursing home, that myself and my sister found for her. We have managed to see her as she is on ground level and has a patio so we do the social distancing.
My mum is completely bed bound, doubly incontinent her colour looks awful she looks so ill. She is sleeping all the time and has not eaten anything since arriving in the care home on 29th May so she is having build up milk shakes. Her fluid in take is very low but is still taking in bits. I feel exhausted as now my dad who cannot live without my mother has started to deteriorate in health because of the seperation so not only are we concerned over mum but also dad. I am not sure if my mother is at the end of this awful disease and how long this indignity can go on she looks so ill, how long can someone live without food and being bed bound ... the questions are numerous but my poor mother is dropping weight, watching this is so heartbreaking. I would love to hear any of your experiences .

In this current lockdown situation people are discovering, perhaps for the very first time, the vulnerable or unexplored regions of relationships, the involuntary focus on that aspect of life and discovering perhaps it is not fundamentally what it has been hitherto perceived. Thus all these seemingly new debates.
With dementia and the relationship with it, we are confronted every waking moment with its unpredictable and often dramatic nature by way of presentation in a loved one. Not just the physical, which is in itself extremely challenging , but the psychological impact which can be immensely so. Every case is different and therefore it is wrong for anyone to compare. Only you know your situation, your anxieties, the relationship that one has with say, a mother or father who is living with dementia in whatever form. I can only know my own journey through dementia with my late mother, which was uneasy to begin with and traumatic towards the end. There is no need for details. So, l really wished to say this. Amidst the seemingly hopeless scenario set before one - sickness, level of care, continuing feedback as to the state of affairs, the recognition of " end of life" whenever it comes, and the whole ongoing business of feeling constantly torn between your own ongoing need to live your life and the perpetual "thinking about what is happening now?" - there remains the fact that with dementia (Alzheimer's, vascular, Lewy bodies et al) the one living with this disease loses " memory" of what is going on around them. This is ironic because it is the forerunner of the progressive decline and that in itself is obviously a problem. But WHILST WE maintain that capacity for anxiety and heartfelt expectation and constant deliberation over the " what ifs" or " why this or that" and the whole exhausting emotional predicament, the loved one is for the greater part oblivious to all of that. This is therefore a kind of ' comfort cushion' for us , the daughter, son, husband or whatever the close relationship exists between the two people in question.

I have said enough l feel. But l can say this. The often long journey through the relationship with dementia in a loved one, can be both life-changing and also heartbreaking. But during the whole four weeks l spent alongside my elderly mother, in hospital ( l slept alongside her in a side room) l came to understand that she was living in a kind of netherworld devoid of all the angst set at my own door. Her life was buried deep in a past which was " present day" reality. Even childhood memory became a living thing when she was able to articulate it. There was a extraordinary absence of awareness of things which evoke anxiety or fear in the present -- all the things we as kith and kin harbour and make our daily bread with all its pain and destructive potential. And so that is a positive thing to keep close to one's heart. And finally this. Just shortly before my mother died and at the same time each day when she would awaken from her long sleep - she opened her eyes wide ( they had been closed for a long time) sat up in bed, turned to me and spoke clearly and lucidly for about thirty seconds just as if she had suddenly become the mother l knew decades before. That is a truth. A fact. And so, yes, l truly believe that the " person" afflicted with dementia will always be there, albeit hidden or camouflaged by behaviours and the features of dementia familiar to us who have cared for a loved one living with this cruel disease. That realisation brings with it an enormous sense of relief and even joy. Because the moments which took place long before the disease claimed the loved one, the moments of childhood, the upbringing the growing up and the fun times and the joy, all of that remains as it happened - untouched by the hand of dementia. There is a great comfort in knowing that.

With my warmest wishes.

 

[padawan444]

@Hazara8 Just a little note to say that I have just read your reply and it makes so much sense - thankyou. I do find that there is barely a minute of the day that goes by, when I am not consumed with thoughts about how my mother must be feeling - how distressed she is, how frightened she must feel etc. It is reassuring that perhaps she is not aware of this. Likewise, on the rare occasions that a phone call is possible - she can say my name so clearly, and that is enough to feel mothered and that all is still safe and familiar. I find that visiting also has tiny glimmers of the mother/daughter relationship that I'm so frightened has disappeared.