Thank you and I wish you all the best

Kayleigh123

Registered User
Nov 20, 2016
1
0
Hi,

I've never posted on here before or managed to comment on any of the threads, however I have read many of the comments and threads especially under the 'end of life' category.

My Nan was diagnosed with dementia in September/October last year and a friend of mine whose Mom has dementia told me about this forum and said it was a good place to start to find out what could happen/ symptoms etc.

I found all information on this forum and the website so helpful and I just wanted to say thank you ever so much to everyone who posts on here and for the advice that is on offer.

After my Nan's fast decline and two hospital stays she went in to a wonderful care home just over a month ago. At the time she complained of her head hurting a lot and after many tests at the hospital she was discharged to go in to the care home. She was encouraged to get up, get dressed and eat for a few weeks, even though all she wanted to do was stay in bed. It got to the point where she was on the same side so much that she ended up getting bed sores on one side of her body so they had to order a special bed for her and she was allowed to stay in it as much as she wanted just over a week ago.

On Friday we were told they were putting her on palliative care as she had weeks left to live. On Friday evening I spent the night reading through posts and forums on here on what to expect. It helped as there were little signs that I was looking for what to expect and I felt I needed this over the weekend.

I went to the care home on Saturday morning and my Nan was very distressed and groaning a lot. She wasn't talking much sense and was lying in bed. A lovely carer was on the phone to the doctors when we got there as she said Nan is showing signs of distress so she wanted to make sure the correct medication was in place before it got too bad. As a family we were trying to encourage Nan to drink a bit more as she ended up quite dehydrated and in hospital on a drip. She had 50ml on Saturday morning and at one point she said 'drink' so we put the straw to her lips and she didn't have the energy to suck the liquid up.

We tried to help pour some in her mouth but she ended up choking and coughing it back up and I realised that she was struggling to swallow (which I found out could happen from these forums). After that if we suggested a drink to Nan she didn't see the drink and didn't want any again. The doctors came out and took her obs and as daft as it sounds there was a look shared between them which automatically filled me with dread. I asked how she was doing and they said it's hard to say from the obs that was taken and the main thing was to make her comfortable. My mom asked them how long and they said we can't say because we've been wrong before. Suddenly we realised we didn't have weeks.

The palliative nurses came out and gave her some medication to help the agitation she was experiencing. She settled down within 10 minutes. We decided to come home and grab some rest whilst she was resting but we were back within a few hours as she was agitated again and the nurses were coming out again. After Nan not speaking any sense all day I was shocked when she asked us whether we had our tea and what day it was. We sat with her whilst we were waiting for the nurses and during that time my Nan was reaching out for the ceiling and speaking to it in her way that she had been all day. I know people with dementia see things that aren't there but Nan hasn't done this in the short time of her diagnosis so we took some comfort that maybe passed family members were with her during her distress. Again, she calmed down and fell asleep so we came away.

My mom was back at the care home at 4am because my nan had woken up in the middle of the night and decided to try and go for a walk. She made it to the door of her room and fell over, where she was found by the care home staff and they called my mom back out to be with her. From then on for the rest of Sunday her agitation was awful. She was constantly reaching out, scratching and grabbing what she could, kicking her legs out and the nurses had put her on a syringe driver to help calm her down.

She didn't open her eyes at all on Sunday and kept constantly trying to get out of bed even though for the past month or so all she wanted to do was stay in bed. We held her hands and she was freezing and I realised this was another sign that we were coming to the end. When lifting her legs back on to the middle of the bed I realised her feet were cold too. Sunday was the first time we had indication that she had 2-4 days as she was not gaining any liquids and the target was to make her as comfortable as possible. This didn't seem likely at some stages and the doses of the medication felt like they were not high enough. I asked the care home if there was anything we could do and at one point they said she can't have any more or else she'll overdose and that we just needed to ride it out.

Early Sunday evening she settled down and was relaxed and she stayed like that throughout the night. In the early hours of the morning, her breathing became harsher and the care home staff warned my mom of what would happen next. All weekend we were adamant that we would be there when it happened but in the early hours of Monday morning, my Mom desperately needed to go home and try and get a couple of hours in her own bed (after being at the care home from 4am the previous morning). My Nan passed away peacefully in her sleep as we were making our way back. We have worried ever since about this but apparently it happens a lot where people wait until they are on their own and then pass away.

It still feels quite raw at the moment and we are heartbroken. The weekend was such a struggle for her but I am glad that she had some hours peace before she died. She looked peaceful and I will be forever grateful for that.

I kept everything in mind from what I have read previously and I do believe that by looking for the signs it helped me come to terms with what was happening. As I said Friday evening she was given weeks left to live and by Monday lunchtime she was gone. My Nan was bubbly and daft, but this horrible disease took that away from her and she was not Nan for ages before she died. We had little snippets of her (like when she asked what we had for tea) but for the main part she hasn't been Nan since December.

Nurses and doctors won't give you a specific time and I do think everything with dementia is unknown. All I will say is be there as much as you can for that person. I read that physical contact and the sound of familiar voices often soothes them and although she struggled all weekend, I'd like to think this helped her. We were always holding her hands, stroking her head and arms and I haven't spoken that much to her for ages. I talked about daft things like what was happening on tv, the grand national because that's what we did when she was healthy but we also talked of the days she spent happy with family.

Take each day as it comes and just look for the signs of when the day is nearing- if just to shield your heart a little before it does x
 

Malalie

Registered User
Sep 1, 2016
310
0
Thank you Kayleigh for sharing that most upsetting and personal event in your and your Nans life. It's terrible, but helpful and honest and direct. It helps.

I'm so sorry for your loss, and wish you strength for the coming days. Thank you.
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
So sorry for your loss, Kayleigh. It's never an easy journey. I'm glad you found Talking Point helpful.
 

Lancashire Lou

Registered User
Mar 26, 2017
14
0
W. Yorkshire
Thank you Kayleigh

Kayleigh, i just wanted to say thank you for posting your detailed account of your Nan's passing. I too was very close to my Nanna, and could feel the love you had for yours from what you wrote. I think your post will help future readers (myself included when I will have to face this with my dad) to know a little of what may happen, and thank you for thinking of others by posting. I too am discovering what a comfort it can feel to have access to talking point at any time of day or night and know someone is there who understands.
Sending you and your family a huge hug at this sad time. X
 

rosy18

Registered User
Jul 23, 2016
1,281
0
Blackpool
Thank you Kayleigh for sharing such precious moments spent with your Nan.
My sincere condolences to you and your family
((Hugs))xx
 

Jbob

Registered User
Apr 20, 2016
130
0
Thank you Kayleigh for your post I am about to go through the same with my Dad. He is due back to his nursing home this afternoon on palliative care. Im supposed to go away Saturday for a night but am dreading him passing whilst I'm not there. I know a lot of people have mentioned that their loved ones wait until they are on their own but I hope I can be there. Take care and best wishes