The steps are getting steeper.

[SAP]

@Feeling unsupported , you are definitely not heartless, I can’t imagine most parents would want their children to put their life and wellbeing on hold like we imagine we should do. I certainly would not want my own kids to be in this position. We just need to keep holding each other up and ignor those who have no clue what having a LO with dementia is like.

 

[donkeygirl]

All the replies etc struck a cord with me. My mum was ill at xmas and seems to have gone thru stages fast.
This week could tell she didn't know me. Show her pictures of past and she's OK. Recognised my late dog but not me. She's still getting around the care home(slowly and precariously) not really eating etc. Usually in bed asleep when I go but today she was very restless. Not seen her like it b4. Kept walking around asking for help.
She's waiting to see a doc as she's getting larger but not eating. Water retention? It is such a cruel disease.
But a couple of times there was a glimmer of the old her.
I am not looking forward to what will come. Feel guilty for not being there each day. Guilty for going the days I go. A few weeks ago she said I was acting like her mother...and this is what it comes to. Warm thoughts and hugs to all.

 

[SherwoodSue]

Thank you for this @marieantoinette, I am in exactly the same situation and it is reassuring to know that I am not the only one trying to shake off the guilt of living my own retirement, while I still can. My parents both lived life to the full at my age, travelling the world. I keep reminding myself that mum would want me to do the same. I too wish it was over, but others don't understand this and it feels heartless to admit it.

Not heartless Loving honesty

 

[Postmill]

Hi @SAP Your post really resonated with me today. I visited Mum yesterday having been on holiday and she seemed much frailer. Still understood she knew me, but not sure how. Just drifted in and out of sleep, didn't leave her bed and was unable to talk or understand what I said.

I've been having a really hard time with it all lately - she's in a care home (6 years) but all the visiting is down to me. Having had a break I felt really differently about it: I think somehow I've accepted it and have divorced myself from it all. We have been having a very long goodbye for years now and I've finally come to an acceptance. I've neglected my husband, my children and myself over the last five years by trying to look after mum and I think I have to say 'enough' now.

The reality is that this could go on for years yet and, if I'm not careful, my own old age (I'm retired) will have drifted away looking after mum. I'm going to try to reframe our relationship - more practical, less emotional - and feel less guilt about living my life. I think I give myself permission to visit less, although I'm not sure I will be able to maintain that.

I so wish it was over for both of our sakes. But the future is unknowable and all I can do for now is live in the present and I hope that by living my best life, I am honouring my mum. That's what she would want for me.

Hi, I can so relate to your situation , how I had to juggle looking after my mum after she reluctantly had to move from her home to a retirement flat near to where I live as a result in a life changing accident where she broke her hip. After a couple of years her mental health declined and although she was never formally diagnosed I now realise dementia was creeping in. I had 4 more years with her where we had good and bad days before she passed. I thought I had my life back but my husband now has frontoporal dementia and it’s like it’s all happening again. I feel like a prisoner sometimes with no let up, I do have supportive family but they have their own lives so Most of the time it’s just me and him. I do try and get some me time but it’s so difficult and yes guilt comes in . I know I have to grab the odd day out when possible as my life is full time carer.we shouldn’t feel guilty but unfortunately it’s so hard to switch off , I just have to be grateful I am able bodied at the moment, and hope I can cope with what’s ahead. Take care and try and get through without the guilt.

 

[JackReacher]

Opening post from SAP was excellent and very thought provoking for me. My wife has been in a care home for 16 months now. She went in physically very fit, was in denial re her dementia and remains so. Memory gradually ebbed away, I am no longer remembered as a hubby of almost 50 years. my daughter pops in daily as she lives very close to the care home. But yesterday she said that on an evening visit, her mum did not recognise her for a while. It was a milestone that was inevitable but it is a reminder that the end may not be far away. I could not remain in the Norwich home afterwards, so 4 months ago sold up and now live in an identical house where my wife lived in Lincs, just 11 doors away. I still have great memories of that house and her family, so although just me and the dog now, its good to be walking the dog past daily and remembering better times. Her care home is not brilliant and my wife has never settled. When my daughter complained re her mum not being helped with bathing, dressing or toiletry, the home owner has decided to evict her and now we are looking for a different place.
I have daily feelings of guilt, living in a super house that I desperately would love to share with my wife. But I know I could not cope, it would be selfish on my part.
We have 5 children, one son is near enough to visit regularly but I suspect his mum sees him as a friendly face who visits and not as her son. The children know to simply go with the flow when visiting and make it a happy occasion. We all now need to live in her world.
My daughter is absolutely brilliant, has a very busy family life herself but is always so positive and resourceful. She is managing the care home move and going through all the hoops. But I wish she was still recognised properly. Mums Day soon and I will be visiting, 12 hours of driving to get there and back, maybe collecting sons along the way. Hardest bit will be at the end when she wants to get in the car with me and leave the care home. It breaks my heart for days afterwards, the feeling of guilt return.
We all need to feel that we are doing the right things, tough as they seem.
Onwards and upwards ... kind regards to all, Jack

 

[Pilgrim]

Today was the first time I visited mum where there was no recognition at all. In the last two months she has declined quite steeply. She will no longer weight bear , is refusing food and somewhere inside I saw the light had gone off in her eyes.
Despite my years of knowledge and experience of dementia, nothing in the world prepares you for looking at a loved one and realising they have no clue who you are.
I’ve been thinking a lot about The Long Goodbye campaign, I have no pearls of wisdom on that score but I do know that without this forum I would be feeling so alone right now. I am grateful to those who have gone before me and sad for those who will follow. I used to advise carers at the beginning of their dementia journey not to read too far into the future as they would scare themselves silly but that when the time came it would be beneficial to know that others have stood where they are.
And so it begins, this end stage that has no limits or time frame. I’m dreading it if I’m honest but here we go.
( NB the home are making regular checks for infection, mum can still swallow and will take fluid, she will allow a small amount of food , usually in the evening but needs to be fed. The carers and nursing staff are amazing.

 

[Pilgrim]

Today was the first time I visited mum where there was no recognition at all. In the last two months she has declined quite steeply. She will no longer weight bear , is refusing food and somewhere inside I saw the light had gone off in her eyes.
Despite my years of knowledge and experience of dementia, nothing in the world prepares you for looking at a loved one and realising they have no clue who you are.
I’ve been thinking a lot about The Long Goodbye campaign, I have no pearls of wisdom on that score but I do know that without this forum I would be feeling so alone right now. I am grateful to those who have gone before me and sad for those who will follow. I used to advise carers at the beginning of their dementia journey not to read too far into the future as they would scare themselves silly but that when the time came it would be beneficial to know that others have stood where they are.
And so it begins, this end stage that has no limits or time frame. I’m dreading it if I’m honest but here we go.
( NB the home are making regular checks for infection, mum can still swallow and will take fluid, she will allow a small amount of food , usually in the evening but needs to be fed. The carers and nursing staff are amazing. )

I am so sorry. You must be heartbroken.

 

[SAP]

@JackReacher , it’s a vile disease and I hate it but there is nothing more I can do for mum now . I’m so sorry you are facing this upheaval when all your daughter wanted was for her mum to be well cared for . I hope you find a nice home that will care for her properly.

 

[JackReacher]

People are now living longer and seen by most people as a GOOD thing. I agree its good for young people who need to live a full life span, but for older people with dementia? As people like myself (74) became ill and passed away there was a sort of balance, older folk were never too much of a burden and if illness came along then it was not very long term. Nowadays, not many partners are at home during the day, they ned to be out working. So staying at home to care for an elderly parent becomes difficult, especially if its dementia and specialist needs.
We are in the non-recognition phase with my wife now, plus she is losing weight and was not overweight, angry mood swings, not an easy time for any visitors.
As time passes and things deteriorate further and she does not benefit from the visits, they will perhaps become less frequent. Not much point if everyone ends up very unsettled.
I moved home and now live alone, good and bad days of course, but nothing compared to someone having to nurse or visit an elderly aggressive and confused parent. With no end in sight.
My daughter is the hero, manages all the legal side, has LPA for her mum, but she has her own family and a job to think of as well.
Whatever the case, anyone under stress, please make sure you do not neglect yourself and seek help if you feel its all too much. Just chatting with others can help so much, Jack