Such a sad time


#1
Feels horrible with this but we could be losing my mother. She is only in her early 50''s. Her brother had parkinsons and passed away quite a few years ago and my mother has had a version of it (auto asominal extra something something... can't remember the full name). Throughout her illness she was always with it in the mind. Her problem was with her body (mobility, etc). This meant I didn't treat her like she was ill, I treated her like a mother. That included having some arguments any mother and son would have. It was around Xmas 2015 where we had difficult times. There was some argument and in some ways can be seen as time with her taken away from me. Everything became OK between us just before Xmas and we had a nice Xmas together. The last time I saw her before the decline was at the start of this month. I spent a few days at hers and she was perfectly fine. She was talking, singing to her music and eating perfectly fine. It was barely a week after I left her when she had another chest infection. I went back to hers to help her through it. It started seemingly as nothing too bad. She could still talk, use her laptop and I even took her out in her wheelchair. But then by day 3 of the chest infection she struggled to talk and was very sleepy. An ambulance was called and she then declined more in hospital. The chest infection became pneumonia and it wasn't long before dr's gave up hope. They said she didn't respond to antibiotics, have taken her off the drip and claim its now just about making her as comfortable as possible. She's still with us now. When she's awake she is alert of everything. She knows when I'm there and gets upset when she sees me. The sad thing is this whole thing with her in hospital is with no certainty. They just assume certain things are for the best

#2
I think what really does make it hard is how it seemed like nothing Day 1 in hospital and my mum was talking still (although it was more of a whisper). Ct scan showed nothing. Day 2 family dropped off her things with the plan of going to hospital to take her home. By that evening they hadn't taken her home claiming it's not the best idea. Day 3 I went in and she seemed drugged up and talking was harder for her. She did say to me she wants to go home. I tried to ask Dr's about taking her home and they wouldn't let me. Day 4 family reported back saying she wasn't I'm a good way. I couldn't face going for a few days. Day 6. She was sleeping most of the time. That's when Dr's gave me bad news. That's the worst thing. That sudden decline

#3

My thoughts are with at this time and hope that your mother is comfortable and pain free. Decline is difficult but I agree sudden decline is hard to cope with.

Look after yourself and continue to talk to your Mum and maybe hold her hand. Hearing and touch may still be something your Mum may respond to - even if there is no outward sign.

Take care

Keld

 


#4
Thanks so much. I am there every single day with her. Will be spending the night soon. My mum is everything to me.

#5

I sat with my Mum every day too. I knitted (her hobby not mine but somehow I ended up knitting ....) I hope the sound of the familiar was a comfort to Mum.

Most of the time I slept alongside her bed, but I brushed her hair and held her hand. When she communicated with faint voice - or simply with her eyes - I was there.

One of the nurses said - there are 2 things we do on our own "being born and dying" which supported me for not being there when she died.....but she knew she was loved and we had 'companionship' in those days before that I will never forget.

Look after yourself too. Thinking of you

Keld

 

 

 


#6

Hello  Samp29

          I wont say  I  cannot imagine  your  pain  and  anxiety as  I can,  losing  my  Father under very  similar situation and its truly  awful  I   draw  comfort from  knowing  that Dad is swanning  round  the universe having returned to where all  life  originated ,  look  up  on a  clear  moonless  night and witness a amazing display of  stars planets moons and on occasion  ISS,  travelling  at  5mls  per  second  it  crosses horiizon  to horizon  in  minutes,  Kelds words   have much  truth,  we  are  born we live  we die, its how we handle  the  bit  in  the middle  that counts  your  mum  is  such a very very special  lady she gave  you a set  of  values  and she  will continue in  your  thoughts  and  memories for eternity no matter what ,my  Mother  is  97  and has  told  me  she will  not renew  her  driving licence  on  expiry  in  August,  she is  failing  but will go  down  fighting and how  I  deal  with it  well  I  really do  not know her  loss will be  a  hammer blow but her  stubborn  stand  in the face of  the  inevitable well  she just laughs at her  age, and  thats  the  best  way,, perhaps thats  how  I  have learned to handle  pd

                                      I  wish  you  well,  and your  Mum whatever the  outcome  will find  peace.

                                                   OTan

 


#7

Hello Samp29,

Thinking of you and hope that you are coping OK with all that you are dealing with right now.

Take care, don't forget to look after yourself...hard to remember yourself at times...

Keld


#8

Thank you so much for the replies and kind words, theres certainly some great advice there and theres comfort in reading about your experiences too.

Things have been nothing short of a roller coaster and I haven't been able to post recently. It goes from 1 extreme to the other with things.

So, she was taken in to hospital and as I mentioned at first she was ok, there was nothing more to worry about aside from her getting through the chest infection. Then suddenly we were all told that she wouldn't be with us much longer and it was about making her as comfortable as possible and that she isn't in pain. This was an upsetting time for us all.

About a week ago she started getting better though. They took her off the syringe driver, we were allowed to give her sips of water and she was actually talking again. It was a confused and quieter voice than normal but she was able to say when she wanted a drink, move her hands and there was a lot of progress.

The plan was to leave her in hospital and allow her to build her strength up a bit more, then get her moved to a respite centre/hospice for a week as she used to go there once a week and was more familiar with the staff there. After that she would be back home.

Surprisingly the Dr at hospital got her moved before she was strong enough and within a few hours of being transferred to the respite centre, she went downhill again, is back on the syringe drivers and I had a call from 1 of the people at the centre asking if I could go there asap because they don't think she will be with us much longer.

I don't know how I feel. When we were told she wouldn't make it before I was very upset and struggled, then there was a change in fortunes and she was going to make it, now its back to her not being with us for much longer


#9

My heart goes out to you, as you are on that roller coaster of emotions.....definitely not alone on that ride....As my Mum would have said "medicine is an art not a science and it doesn't go predictably at all."

Take care, remember to eat and drink, and keep talking to your Mum and holding her hand... 

Keld

 


#10
Mum sadly passed away at around 8am this morning :(

#11

So sorry to read that - thinking of you

S


#12

Hi Samp29,

I am so sorry to hear about your loss.  Please remember that you can call our Helpline team on 0808 800 0303 if you would like to speak to someone. We are here until 7pm this evening, and from 10am-2pm tomorrow.

This page also has some links at the bottom with other organisations you can contact for help or support: https://www.parkinsons.org.uk/content/what-do-when-someone-dies 

Take care,

Joanne 


#13

Thinking of you and will be as you cope with everything you have to cope with over the days ahead.

The time you spent with her recently I hope can give you some comfort - you were there for your mother. The roller coaster ride is hard but sometimes you can't get off. Now you have moved on to a different ride - I sincerely hope it is a calmer one.

Take care, I am glad to read that Joanna has given you contact details in case you'd like to use them.

Keld

 


#14

Sorry I havent been around to say anything else. It's been such a busy time. So many heavy thoughts and emotions. 

Seeing mum at the chapel of rest tomorrow... For the last time ever because then its the funeral on Monday morning. 

It's hard with so many thoughts, I know people say to me in person her suffering is now over but its hard to find comfort in that. Her choice would be to live for longer even if it meant being in the most amount of pain imaginable throughout.

There's so many things to remember about her and I don't know weather it may seem daft but I genuinely want to remember everything I miss about my mum every single day so it eats away at me. 

Life with mum was great, I enjoyed caring for her as until the very end her mind was 100% and as people say, it's her body that let her down. While there was some serious parts to it, it was fun because my mum was such a great person and we always had a laugh about things.

Effectively now though, not only did I lose a person who was like a dad to me 6 years ago (my uncle), who had the same disease and passed away at just 46, but now my mum who didn't live for many more years than he did.

I will try and phone the parkinsons line soon. 


#15

Samp29,

I spent a long time with my Mum at her chapel of rest and held her hand and was just there with her. I left  her with something of mine to hold. I found it helped me, and still does now, to write down things that happen now and when I remember about happier times with Mum. It has helped me not to worry that I would forget. I even took photo's - may sound odd to some - but I always take photo's of significant events.

Don't let things 'eat away' at you  - do what feels right for you and live through these difficult days, other people say the oddest things after someone has died - mostly when they feel out of their comfort zone and don't know what to say.

Hope that there is comfort in the funeral and that you find some peace.

Being a carer is hard work and your Mum was fortunate to have had support from you. Give yourself support as you go through the days ahead. The caring role is over and that is hard too, but you are not alone in dealing with that. I have taken time, and enjoy going through things my Mum loved and are now for me to enjoy and think of her. Her CD collection is a treasure!

Take care and will be thinking of you on Monday - I will be at my son's wedding and have just looked out a photo of my Mum to put in my bag - and am reading her favourite blessing as part of the ceremony - at my son's request. So gone - does not mean forgotten......

Keld

 

 


#16

I've just arrived here...and I'm looking after my partner, wondering what the future holds. I read this post, and am so very sorry to hear about your mum. I know it's a few months ago now, but I hope you've found peace and rediscovered happier memories. 

 


#17

So sorry to hear of your loss, we lost our mum on the 1st September this year.


She had been in and out of many hospitals for months beginning last October. Some of the hospitals were Community Hospitals, which were not .close to us, but we still visited regularly.

In April of this year they decided she could come home with a care plan, which involved 4 calls a day from carers....in a word...it didn't work well.

Mum became even more immobile until she spent alday in her recling chair unless one of us or a friend or neighbour took her out in her wheel chair, she was incontinent too.....it broke our heart to see, what had been a active lady, like this, unable to do anything for herself..


Towards mid August, she was obviously decling, one Friday I had  a call from the morning carer to say she'd called the paramedics as mum had a unresponsive episode ( this wasn't the first) Paramedic checked her over and GP came out and said could be a UTI and gave her antibiotics. Later that evening the teatime carer called to say she was concerned, I rang our GP who rang me back and said he'd got mum a bed in a community hospital just for the weekend, I was very annoyed that when I asked the carer if she could wait 15 minutes until I got there when she replied "NO"!!....I literally pulled up infront of her and she never even got out of her car to speak to me!

The ambulance eventually turned up at 10pm, we went on over to the hospital (over 20 miles away) and waited for mum to arrive, (she had spent time in this hospital before ) so the staff all remembered her. At this point mum could speak, though was not hardly eating.

Over a week she seemed to deteriorate rapidly, she lost the ability to swallow and speak, one day I was told it was end stage Parkinson's and prognosis was 4-6 months.


On visiting on Bank Holiday Monday I could tell something was seriously wrong, I approached the ward sister who advised me to ring my brother ( my sister was with me ) and the Doctor would come and talk to us, they would also move mum to a private room. The Doctor told us it could be hours she had left.


We stayed at the hospital day and night. sleeping (kind of ) too, the hospital were amazing , there were vast members of family there at times, they did not mind at all and continued to treat mum with care, respect and dignity.


She held on for 3 and 3/4 days, and eventually passed away peacefully on 1st September with all of us there. We were and still are heartbroken x