End of Dementia Journey: Just to let you know... - Care Community

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End of Dementia Journey

XSitch38 profile image

Just to let you know we lost mom last week after her long journey through dementia. It was heartbreaking to lose her after everything we have been through and fought together, but it had come time for her to leave and her quality of life had become poor. She was comfortable and pain free and I must say i have nothing but praise for the nursing team that were coming in every day to deal with syringe driver. We are quite rural and bogged down with muddy tracks, but they arrived with a smile and supported me throughout. I just wish everyone's experience of end of life care could be as good. I am doing quite well but had a bad day yesterday, but know this will be all part of the grieving process. I am feeling a bit lost and am not sure what lies ahead, but taking it one day at a time. Thank you all for your support throughout our journey, and sending my best wishes to those who are still struggling with the care of their loved ones.

19 Replies
sassy59 profile image
sassy59Ambassador

So very sorry for your loss X-Sitch. Allow yourself to grieve. We’re all here for you anytime you need us.

Thinking of you at this difficult time. Xxxxc

XSitch38 profile image
XSitch38 in reply to sassy59

Thank you so much. Had bad day yesterday but after good cry when hubby came home, felt better. I know it will happen, and must accept grief is another journey to take in life. Sun is shining today and I am having a tidy up.

Callendersgal profile image
CallendersgalAdministrator

Oh XSitch38, my deepest condolences to you. There aren't really enough words in the universe that can console when you lose one of the dearest of people to you; your mum.

I can empathise with your feeling very lost now. It's a life consuming thing, looking after someone else and when it comes to an end there's not only deep grief but also a feeling of suddenly being redundant.

But of course you aren't redundant. Give yourself the time you need to grieve properly for your loss and then gradually start to give yourself back some of the time that you so lovingly offered up to your mum.

Perhaps get out and about a bit more and socialise and renew old interests or find some new ones. Hopefully, gradually the hole left by your mum's death will start to fill in a bit.

And you are right! It was the right time for her to leave you. It's just that it's such a hard thing to have to accept. But I can see that, in your heart you did know it was time.

Bless you XSitch38 in your time of sorrow.

I hope that you'll continue to stay in touch with us over time and offer us some support and knowledge that I'm sure will help others who are going through a similar experience to yours.

Very best wishes.

Thank you so much for your kind words which sum up exactly how I am feeling. I keep thinking that I must see if she needs a drink, or what I am going to prepare for her tea! I will stay in touch and perhaps may be able to offer my suggestions to others who are beginning or part way along their journey. I went to places with my mom I never thought I would have to with her personal care, took care of pressure sores and learned about contractures and aspiration. I am not sure what I will do now but for the moment I am resting, catching up and discovering the world again. Thank you all for your support.

Thank you for sharing this. I would like to send my sincere condolences to you and your family. If sounds like your mum had a peaceful death which is comforting and you know now that she is at peace.

I send you love and strength to help you through this very difficult time.

Helen xx

XSitch38 profile image
XSitch38 in reply to Hellebelle

Thank you so much. Although looked very poorly at the end, she looked so peaceful and snuggled in bed, dressed in a clean nightie with hair brushed. I knew that it was time and each night I gave her permission to leave if she had to. At 2.30 in the morning I awoke to someone calling my name so I went down to her room to find her only just gone, and at rest. All your good wishes and support are so appreciated, thank you.

Hellebelle profile image
Hellebelle in reply to XSitch38

That is very touching and it sounds as if that is what she needed, the permission to leave. It would be so good if you could remain in touch as you will be able to understand and help others in a similar situation. Helen xx

I'm so very sorry for your loss. Mel x

Thank you so much.

Hi xsitch38. Sorry that ur mum has moved on, and of course u will miss her. I would just like to say thank you for thinking of others at this time too!

Thank you lell1. I feel strongly that if I can help someone else in their journey so it's not as bewildering or stressful, then that would be a lasting legacy to my mom because of all the things I learned with her. My most important message would be to jump into their world and go along with the things they say, playing your part in their make believe world. It is also fun for you too. Best to everyone.

I do feel your pain and what you are going through,Dementia is such a cruel disease,which my partner suffers with too.

You are so fortunate that the nursing team did so much to help you.

My thoughts of comfort I send to you.

And they are so gratefully received. Take care and if ever you need support or advice regarding your partner's dementia journey, please ask and I will try to help. Having someone there either going through or that has been along the same journey is so reassuring.

Hello XStitch! Are you still using this forum?

XSitch38 profile image
XSitch38 in reply to lell1

I haven't been recently to be honest.

XSitch38 profile image
XSitch38 in reply to lell1

Can I help you in any way?

Hi there! No, I was just wondering how you are now (not including covid crap!)

XSitch38 profile image
XSitch38 in reply to lell1

Ah thank you so much. I am well thank you and have been able to feel that mom is now at rest and it's as it should be. When she passed away last year, I would look down at her window when walking the dog in the field behind our house. Some days I would feel my heartbreaking as I let the tears flow. I waited this year until I could see her window once the leaves had dropped, but instead of tears I felt a smile because it was time for her to go, and it would have been cruel if she had still been lying in her bed behind that window. Losing someone you have provided intense care for over several years is the most difficult thing to go through, but a year on I have found comfort in what I was able to do for her, and knowing that she had the best life we could give her. My husband and I can now talk about the funny things, and I keep a picture of her by my seat in the lounge (which was her room actually). How are you, and what is your situation?

lell1 profile image
lell1 in reply to XSitch38

this is all so good to hear XStitch38! It must be a wonderful release for, and your husband, to feel such positiveness!

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