How long do we have?

Jaye Conte

Registered User
Dec 14, 2012
7
0
Hallo. I'm asking for general advice, or information, if anyone can help. My mother, who has had Alzheimer's for some time, fell last year, striking her head, and making her condition far worse. Now she is receiving full-time nursing care, and last week one of the staff let me know that Mum was no longer accepting food or drink. We discussed this, and were in agreement over Mum's right to do just that - no-one wants to put Mum on a drip. This conversation took place last week and I've been in every day since, and I have seen a huge difference in Mum's condition: I've been expecting her to die every day - and I have done some research because I wonder how long she can last. She is so thin, her arms and legs are like sticks. This is the last thing on earth that she would want, and I wonder how much longer she can last.
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Hello. I'm so sorry that you've reached this stage with your mum. It's dreadful to have to just watch and wait. You feel so helpless. All you can do is hold your mum's hand, talk to her now and then, and let her know that it's ok for her to go, that everything is fine, and you will be ok. Also, I would say, give her some time alone. Sometimes, a person doesn't want to go when their loved ones are with them.
There's no way of knowing how long your mum will last. It varies, and depends on other factors, like her health apart from the dementia. But do keep posting if you'd like to. There's almost always someone on, so you need never feel alone.
 

Jaye Conte

Registered User
Dec 14, 2012
7
0
Mum

Thank you. That was a very kind reply and I will take your advice.
At present I'm sitting there with her as we work our way through all the Mozart I can find...! Thank you.
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
Thank you. That was a very kind reply and I will take your advice.
At present I'm sitting there with her as we work our way through all the Mozart I can find...! Thank you.

Wishing you strength at this time.

If they have a strong will it's amazing how long this stage can last so take advice about taking some breaks and time off for yourself. Just make sure you say everything you need to say, so there are no regrets, 'if only I'd . . .'
 

Careforme

Registered User
Apr 15, 2014
53
0
Hello, I am so sorry to hear about your Mum and your situation. My heart goes out to you, your mum and family. It is an extremely difficult time for you and to watch your mother like this. Your mum must have a strong heart and will to keep going. She is a fighter, tough little cookie.

Not to take away anything from your post or situation but just to give you some advice from my experiences.

My mother was diagnosed with Alzheimer's eight years ago when I was 28 and recently passed away three weeks ago.

I completely empathise and feel for you and your family what you are going through.

From the beginning to the very end it was one of the hardest, toughest and emotional experiences I have ever had in my life. Although the hardest and toughest times and days out of everyone was what my mother went through. I forgot about me what I felt and mum was the only person I could feel for and try to make her as happy and content as I could. Everyday was a struggle for her going through all the stages of this awful disease. It was heartbreaking and I just had to hold her hand and guide her as best I could. Mum developed epilepsy in her last year.

Although I know mum has been so very ill all these years from Nov 16 she was admitted to hospital and was in for two months until moving into a nursing home at end of Jan 17. Mum had multiple bouts of pneumonia, sepsis, infections and seizures. On three occasions we were all told to prepare for the worst although each time mum pulled through. Although certainly there was further rapid decline. Within that three month period her speech was non existent, her mobility existed to nothing, swallowing and eating was both difficult and survived on very little spoonfuls of food yoghurt.

I hope this not upset you or scare you which I know it may as it did every time I would read these types of posts but they were some sort of comfort to know what may lie ahead.

I used to ask all the time to doctors and care home could this be it?! No one could ever say which I know no one could. It was all just wait and see. It is just the worst. To watch someone you love so very much just fade away is indescribable. So many emotions

Mum was eventually put on palliative end of life and had to let her take her time. No further antibiotics were to be prescribed as it had just gone too far for her now.

I stayed with my mother every night in hosp and visited everyday numerous times at nursing home along with my brother and dad.

When we could see mum was definitely looking like it may not be long my brother and I stayed with her all day and overnight each day for the week before.

We would sing, talk, listen to music, laugh, cry, everything we would do normally around mum. Had long conversations with her together, on our own. Told her everything I wanted to say but most importantly that it was okay for her to go and that I would look after myself anc brother and dad. It pained me every single time to say it as I didn't want her to go from a very selfish perspective but deep down I knew this can't continue for her it was not fair. I told her I wanted her to be happy see her mum and dad and how proud I was of her.

Everything I did say, I had already told her this everyday for a very very long time even before her illness. We were very close.

I can only imagine how you feel at the moment but please stay as strong as you for your mother. She will be very proud of you. Your mum may not be able to respond but trust me she knows that you are there and will bring great comfort to her. Let her hear your voice. The reassurance to her will be with her forever.

Every individual responds in many different ways and I send your mum and your family comfort and strength on your journey.

Stay strong and I know it is very difficult but take good care of yourself too xx


Sent from my iPhone using Talking Point
 

Jaye Conte

Registered User
Dec 14, 2012
7
0
Mum

I just got in, and went on-line and found your very kind and much appreciated response. I will take on board everything you've said - I lost my dad when I was 28 (lung cancer), and I remember sitting with him at home saying that I loved him and that it was alright for him to go.
I've been saying similar things to Mum, reiterating that I love her and that she'd been a great mum, but tomorrow I am going to go in and tell her that she can stop fighting, and that I love her, and that it's alright to go.
Wish me luck. And I will respond at more length to your very kind message very soon. Thank you for taking the time and sharing all that you did.
Jaye
 

Careforme

Registered User
Apr 15, 2014
53
0
Hi Jaye,

I am sorry to hear about your dad. You really are a tower of strength to your family. They will be proud.

Please do not worry about posting at length, I didn't realise mines was ha.

I think because I have all of it bottled inside and hearing of people asking what happens next it is a kind of comfort.

Each individual is so very different and how their body reacts and copes but your mum is a tough cookie. She will glad you are with her and as much as she may not be able to express her thoughts or feelings she will be proud and will feel your love forever.

I wish you best of luck tomorrow. Be yourself, be how your mum knows you, tell her how freezing it has been outside at this time of year and she is all snuggled up cosy.

Take care of yourself and I say a wee prayer for your mum x


Sent from my iPhone using Talking Point
 

Chuggalug

Registered User
Mar 24, 2014
8,007
0
Norfolk
Hallo. I'm asking for general advice, or information, if anyone can help. My mother, who has had Alzheimer's for some time, fell last year, striking her head, and making her condition far worse. Now she is receiving full-time nursing care, and last week one of the staff let me know that Mum was no longer accepting food or drink. We discussed this, and were in agreement over Mum's right to do just that - no-one wants to put Mum on a drip. This conversation took place last week and I've been in every day since, and I have seen a huge difference in Mum's condition: I've been expecting her to die every day - and I have done some research because I wonder how long she can last. She is so thin, her arms and legs are like sticks. This is the last thing on earth that she would want, and I wonder how much longer she can last.

My husband looked like that when I last saw him. A skeleton covered with skin. I think that was the most frightening thing I'd ever seen. He recently fell, and spent a day in hospital, then, a couple of days after that, he was whizzed back to hospital as the home staff were very worried about him. He eventually went back to the home, and everyone kept a beady eye on him. He lived another three and a half days.

Everyone is different, Jaye. There's no fixed script for this, except one: when you need us, please tell us. We are happy to stand by you and offer you support when you need it. Much love and courage to you, Jaye.