• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Looks like Mums journey will soon be over 😢

prittlewell

Registered User
Jan 28, 2020
76
0
Mum is 91 and had dementia for 8 years or so. She recently went into hospital overnight for a suspected broken hip, but no fracture was found and she returned to the Care Home the following day. On her discharge she had thrush in her throat which made eating difficult. She did not get any antibiotics for four days due to incompetence of the home/GP/chemist.

She started to eat some food last Sunday, but we received a call yesterday saying Mum had deteriorated severely and was not eating and being given water via a pipette. Mum is bedridden and we spent 2 hours with her last night and she never said a word or smiled. She was drifting in and out of consciousness. We honestly thought she would not make the night.
Mum is under the palliative care team, and today the GP drew up a PEACE document with my help (POA). The GP did a video consult with Mum and agreed she looked very much like the end is close. She has arranged for all possible drugs that might be needed to make Mums passing as comfortable as possible to be kept at the care home for use by district or palliative nurses, and felt it would likely be days as opposed to weeks.

This is where I feel so guilty. I feel I ought to be sitting with Mum, but I don’t think she even knows I am there. I plan to visit once or twice a day, as do my children, but I know if she dies with no one there I will carry that guilt. Mum never wanted to go into care (as her own Mother had dementia) and I know she would not want to go on as she is, but I feel I am letting her down again, if she dies alone.

My family keep telling me I have done everything possible for Mum over the years, but it does not stop me feeling so guilty…..
 

canary

Registered User
Feb 25, 2014
15,541
0
South coast
Hello @prittlewell
Im so sorry to hear your news. We know that this is where dementia ultimately leads, but it is still hard when we get there.

This is a difficult time, but it is unlikely that your mum will pass quickly. When someone dies from dementia the body shuts down slowly over days or weeks. There are usually physical signs which will probably alert the staff that the end is coming soon and will enable you to get there. During this time it is important that you look after yourself too. My mum went 17 days with no food or fluid whatsoever. You must make sure that you eat and sleep.

During this period your mum may not appear to be responsive, but hearing is the last thing to go. Talk or read to her. Play her favourite music. Make sure you say the important things - I love you, thank you and tell her it is OK to go.

I wanted to be with mum right up to the end and stayed with her for the final 3 days, sleeping on the floor of her care home room. Nevertheless, I still wasnt with her when she passed - I had to check on my OH and she passed away within minutes of me leaving. I felt terrible, but an older, and very wise carer told me that she had seen this many times before. She said that people seem to have a certain amount of control over when they finally pass and many of them choose not to pass away in front of relatives. Often it seems to happen when the relative nips out to go to the loo. So if that happens to you prittlewell, please dont feel guilty.

((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))
 

lemonbalm

Registered User
May 21, 2018
1,715
0
She won't really be alone @prittlewell . The carers will be there, looking after her on your behalf. They are doing, and will do, all they can to make everything as easy as possible for your mum. The manager at my mum's care home tells me "we provide the love, the district nurse provides the medication"
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,132
0
Kent
if she dies with no one there I will carry that guilt.

Please don`t think this way.

My son and I sat by my husband`s bed towards the end of his life. As soon as he seemed settled once the drugs were administered we went home for a change of clothes being assured one of the carers would be with him at all times.

Within an hour he died.

As has already been said it is quite common for this to happen and is as if the person at the end of their life has some influence, however hard it is to believe.
 

Whisperer

Registered User
Mar 27, 2017
299
0
Southern England
Dear @prittlewell

Please put feelings of guilt to one side and do what is best for yourself.

My mother died in hospital earlier this year after two days palliative care. We were in national lockdowns and before mum suffered heart failure, I had got exhausted in the caring role on my own.

I sat with mum at the hospital in a side room. I left to get some sleep as I was just so tired. I told mum I loved her and so did my siblings, incase she did not make the night. It was catch twenty two. I was advised mum could pass in five hours or five days, etc, no one could tell. If mum was still alive the next day I needed rest, clean clothes, etc, to be there for her and continue to talk to her. I was advised hearing is the last sense that is lost.

No sooner home and the hospital rang to say mum had died. As @canary has said it is almost like they do not want to die with the family present.

I felt guilty having not been there at the moment of passing. That said I said to mum the important things before I left the room, incase the worst happened in my absence.. The hospital kept her in the room to allow me to return straight away and have a final goodbye with mum. That was a very generous act, remembering how busy hospitals were at the time.

You use the emotive phrase “but I feel I am letting her down again”. If you are referring to putting your mum into care as letting her down for the first time, you are being unreasonable in judging yourself. What choice did you really have. I am sure your mum would have understood why you took the action you did, if Dementia had not taken away her capacity to judge such matters. There often comes a point where only a care home can provide the level of support needed.

This is a difficult emotional time for you. Please do not add to your emotional feelings by adding guilt. I found it very hard sitting with mum, talking to her, holding her hand, for many hours with no sign of her being aware I was there. I made mum a promise that I would sit with her, but those years ago Dementia had not arrived, COVID-19 was yet to appear, I had not expected in the circumstances to be on my own during the palliative care period, but that is how the circumstances unfolded in a pandemic.

You are going to visit your mum daily. She may pass whilst you are present or when you are not there. Just tell her you love her, the rest of the family love her, you will always cherish your memories of her, that it is alright for her to let go and end her cruel link with Dementia.

My words are meant to be supportive, in what are very difficult moments for you. Please let go of guilt. As with so many other elements of caring for a loved one with Dementia there are no easy answers. Think of your mum as she was pre Dementia, your shared life time of memories, all you did to help her through her illness and be gentle with yourself. You could spend days at your mum’s bedside and still miss her passing. Please take care.
 

prittlewell

Registered User
Jan 28, 2020
76
0
Hello @prittlewell
Im so sorry to hear your news. We know that this is where dementia ultimately leads, but it is still hard when we get there.

This is a difficult time, but it is unlikely that your mum will pass quickly. When someone dies from dementia the body shuts down slowly over days or weeks. There are usually physical signs which will probably alert the staff that the end is coming soon and will enable you to get there. During this time it is important that you look after yourself too. My mum went 17 days with no food or fluid whatsoever. You must make sure that you eat and sleep.

During this period your mum may not appear to be responsive, but hearing is the last thing to go. Talk or read to her. Play her favourite music. Make sure you say the important things - I love you, thank you and tell her it is OK to go.

I wanted to be with mum right up to the end and stayed with her for the final 3 days, sleeping on the floor of her care home room. Nevertheless, I still wasnt with her when she passed - I had to check on my OH and she passed away within minutes of me leaving. I felt terrible, but an older, and very wise carer told me that she had seen this many times before. She said that people seem to have a certain amount of control over when they finally pass and many of them choose not to pass away in front of relatives. Often it seems to happen when the relative nips out to go to the loo. So if that happens to you prittlewell, please dont feel guilty.

((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))
Thank you for such a lovely post. Mum is still hanging on but hardly eating or drinking anything. Ironically the palliative care nurse suggested applying for CHC funding yesterday, and I have had it approved today in less than 12 hours. It won’t help Mum in any way, but it will save a little which we can pass to the great grandchildren she never met due to covid.
 

prittlewell

Registered User
Jan 28, 2020
76
0
Thank you all for your kind posts. Mum was becoming a little agitated today, and after an hour and a half, the only thing she said to me and my wife, was not particularly nice. We know that was not Mum talking, but it was still a little hurtful.
The home rang tonight and said due agitation they called the district nurse to administer a little sedation medication. I have a feeling this is not going to be a short journey 😢
I know we are not the only ones, but we are finding sleeping very difficult as we seem to be on constant alert in case the home ring during the night.

Once again, many thanks….
 

prittlewell

Registered User
Jan 28, 2020
76
0
Mum is continuing to ‘tread water’. One minute she looks as though she could go within the hour, then she picks up a little. The home have taken her teeth out, which means when she does try and say something, we cannot understand.

We we’re with her yesterday, and all of a sudden she looked above us at the corner of the room, and called out my Dad’s name really loudly and clearly, and then said ‘Cooeee’ as though she was trying to get his attention.

I have visited three times today and feel exhausted. I am not sleeping well, as feel the home may ring during the night. We stay until Mum appears to be sleeping, but I always want to kiss her when we leave, as it could be the last time, which then seems to wake her up a little, and we then feel guilty leaving!

The GP has withdrawn all medication that Mum was on. My DIL is a palliative oncology staff nurse, and feels, due to heat, and lack of fluids, it may be 3-5 days. Mum is starting to twitch a little which my DIL says is a sign the kidneys are shutting down due to lack of fluids.

My wife is so supportive, and is probably better at dealing with things than I am. The home asked for details of which funeral home we wanted to use, and it had not even crossed my mind, but my wife kindly dealt with it.

Onwards and upwards 🙏
 

canary

Registered User
Feb 25, 2014
15,541
0
South coast
People with dementia seem to cling to life longer than you would think possible.
This roller coaster is way it is Im afraid.
Make sure you eat and sleep
((((((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))
 

Staff online

Forum statistics

Threads
120,681
Messages
1,768,142
Members
71,707
Latest member
Rob W