Mum is approaching the end of the road.

[Jeni-_M]

This is the first time I'm writing (other than my introductory note) . Though I've wanted to post on a few occasions now suddenly I feel the need to do so and, if possible, hear back from anyone with whom my situation resonates.

It feels to me that in the past few days Mum, who is 94, has moved into a new place, what in my head I am calling her 'approaching the end of the road': she's sleeping/napping much more, eating miniscule amounts, taking more time than before to respond. We - the woman who is with her during the day who is so loving, so kind - have decided to readjust her 'meals' to whenever she feels she can manage something (so, a single finger of bread with egg salad and a tiny bit of apple juice for breakfast). Somehow it feels wrong to even be coaxing her....The reality is that Mum is going to die sooner rather than later and I am feeling terribly alone in all of this. While I have siblings, who live in another town (I am in India) we seem to inhabit different emotional worlds, with different abilities and needs to articulate difficult stuff. For the past four years since Mum began this particular journey - of dementia, about which so little is understood here; India is several decades behind based on all that I have read since joining this site - I have had a great need to be able to share the gradual unfolding of our mother's self with my siblings, to talk and grieve, but that has never happened. That's not to say that they aren't experiencing their own feelings and thoughts but I've always been closer to Mum, the youngest, the one who moved back this country not exclusively but also to take care of her when she would need looking after...

Well, I guess that's it for the moment. Thank you for reading!

 

[Jezzer]

This is the first time I'm writing (other than my introductory note) . Though I've wanted to post on a few occasions now suddenly I feel the need to do so and, if possible, hear back from anyone with whom my situation resonates.

It feels to me that in the past few days Mum, who is 94, has moved into a new place, what in my head I am calling her 'approaching the end of the road': she's sleeping/napping much more, eating miniscule amounts, taking more time than before to respond. We - the woman who is with her during the day who is so loving, so kind - have decided to readjust her 'meals' to whenever she feels she can manage something (so, a single finger of bread with egg salad and a tiny bit of apple juice for breakfast). Somehow it feels wrong to even be coaxing her....The reality is that Mum is going to die sooner rather than later and I am feeling terribly alone in all of this. While I have siblings, who live in another town (I am in India) we seem to inhabit different emotional worlds, with different abilities and needs to articulate difficult stuff. For the past four years since Mum began this particular journey - of dementia, about which so little is understood here; India is several decades behind based on all that I have read since joining this site - I have had a great need to be able to share the gradual unfolding of our mother's self with my siblings, to talk and grieve, but that has never happened. That's not to say that they aren't experiencing their own feelings and thoughts but I've always been closer to Mum, the youngest, the one who moved back this country not exclusively but also to take care of her when she would need looking after...

Well, I guess that's it for the moment. Thank you for reading!

Hello @Jeni-_M and you are most Welcome at TP although, of course, I am sorry that it is your sadness over your Mum that has brought you here. We are a caring and supportive group and I hope you find friendship, comfort and - if needed -advice here.
As you sadly know, Dementia is a dreadful and cruel illness. It takes away the person we love slowly and at the stage your dear mum (and mine) are, there is little we can do but spend as much time as possible with our mums and continue to love them. You mention grieving and, yes, I understand that very much.
My mum is 90, almost 91, and has resided in a Nursing Home for almost two and a half years. Like your mum, she barely eats or drinks and mainly sleeps. She receives great care but I too felt so lonely until I found Talking Point. Please use it as much and often as you wish. It helps me so much and I hope it will help you too. This is such a difficult time for you but we are here for you. I am sure other members will contact you too. Take care.

 

[canary]

My mum passed away last year, but I remember that twilight zone. Yes, it feels very much like you are inhabiting a different world. I have no wise words Im afraid, but a huge amount of empathy
(((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))

 

[Jale]

This is the first time I'm writing (other than my introductory note) . Though I've wanted to post on a few occasions now suddenly I feel the need to do so and, if possible, hear back from anyone with whom my situation resonates.

It feels to me that in the past few days Mum, who is 94, has moved into a new place, what in my head I am calling her 'approaching the end of the road': she's sleeping/napping much more, eating miniscule amounts, taking more time than before to respond. We - the woman who is with her during the day who is so loving, so kind - have decided to readjust her 'meals' to whenever she feels she can manage something (so, a single finger of bread with egg salad and a tiny bit of apple juice for breakfast). Somehow it feels wrong to even be coaxing her....The reality is that Mum is going to die sooner rather than later and I am feeling terribly alone in all of this. While I have siblings, who live in another town (I am in India) we seem to inhabit different emotional worlds, with different abilities and needs to articulate difficult stuff. For the past four years since Mum began this particular journey - of dementia, about which so little is understood here; India is several decades behind based on all that I have read since joining this site - I have had a great need to be able to share the gradual unfolding of our mother's self with my siblings, to talk and grieve, but that has never happened. That's not to say that they aren't experiencing their own feelings and thoughts but I've always been closer to Mum, the youngest, the one who moved back this country not exclusively but also to take care of her when she would need looking after...

Well, I guess that's it for the moment. Thank you for reading!

Didn't want to read and run and have no wise words - this awful illness drains everyone, I hope that when the time comes your mum passes peacefully. Take care

 

[Jeni-_M]

Thank you for responding, on some days it makes everything a tiny bit more bearable knowing there are people who really do get it. Talking Point has been/is an amazing resource but most of all reading people's posts and feeling very much part of a community. In the meantime, Mum's back to eating proper food and so another cycle begins anew....

 

[Jezzer]

Hello Jeni

Good to hear from you and I'm so glad TP makes your situation a little more bearable. You are right, we are a community and I'm so glad you are now part of our "family". It never ceases to amaze me how physically resilient people with Dementia can be. You mention your mum is eating proper food again - who would have expected that? We just never know from day to day how things will be. How do you cope with this? I find myself feeling constantly "on edge". Are you and the lady you mentioned the only carers for your mum? That must be very hard. Look forward to hearing from you again. With Love xxx

 

[canary]

Im afraid this part of the journey is a roller coaster and it is more common than you would think for people with dementia to be pronounced to be at end of life, only for them to bounce back and start eating again. This happened to mum 3 times before she went into the final decline and passed away.

 

[Jeni-_M]

How lovely to log on and find responses! So, one day of eating more or less properly and then back yesterday to refusing to eat and so her medication schedule was thrown out of whack. Today coming down a bit hard on poor Mum and insisting that she eat....I feel like an ogre and yet what else to do. Jezzer, you asked how I cope and the truth is that my ability to engage is as variable as mum’s appetite! There are two women, one during the day and the other stays the night and that gives me a life of sorts. But really I feel as though i’m in a holding pattern.

Of late mum’s Been asking more and more “when can I go home?” I know a lot of people ask this but now I wonder if this is some way of asking permission to die?? This evening I tried to engage her around this ‘home’
because I am curious to understand why somewhere else would be better than where she is, and she spoke of how I must come to visit (that sort of freaked me out), how it’s a simple place where her parents are ....when I asked if other people at home are folks from the past she was quite clear that they weren’t, that they are of this time. So, needless to say I remain perplexed....

 

[100 miles]

Jeni

I think you are doing the right thing giving your Mum small amounts to eat and drink as often as she will accept it. My Mum ate less and less over the last month and almost nothing in her last week.

Try to remember when talking to her that her 'present' probably isn't the same as yours. Let her lead the conversation and give her whatever reassurance you can.

100 miles

 

[canary]

Of late mum’s Been asking more and more “when can I go home?” I know a lot of people ask this but now I wonder if this is some way of asking permission to die?? This evening I tried to engage her around this ‘home’
because I am curious to understand why somewhere else would be better than where she is, and she spoke of how I must come to visit (that sort of freaked me out), how it’s a simple place where her parents are ....when I asked if other people at home are folks from the past she was quite clear that they weren’t, that they are of this time. So, needless to say I remain perplexed....

When people with dementia say they want to "go home" what they are actually asking for is to go somewhere where they can leave behind the confusion of dementia and be with people they know and they can understand what is happening. Often it is a childhood home or some other place they have lived, but at other times it is a fantasy place. In their mind it is in the present time and they speak of people they have known from the past (often their parents) as if they are still alive. In all cases it is really a state of mind - a longing for security and escape from confusion.

 

[Jeni-_M]

Canary, what you write makes so much sense, that need to move away from the confusions of the present. In the main i’ve understood that but as Mum get frailer and begins to sound more and more tired I have wondered whether something else is creeping in. Oh, but thank you all for this conversation....

 

[Canadian Joanne]

At one point, my mother talked a great deal about her parents and visiting them. I would agree and say we would "go visit them the day after tomorrow, as I have a dentist/ doctor/ work appointment". If she asked how they were, I would say "Fine, same as always", which was technically true, as they had been dead for nearly 40 years at that point.

I agree that wanting to go home is not about a physical place but an emotional place, where life makes sense.