The roller coaster of the end

[MrsTerryN]

Ok cragmaid i am good with blaming mum lol
Well she is much better. My mother, who is probably 48 kilos now , quickly eyed the pavlova that was dessert with lunch yesterday.
I managed to get some of the roast into her but not masses however the mini pavlova was eaten via spoon (me) and fingers (mum) yep a bit messy but a giggle
Well for the first time in almost 2 weeks i am not there to feed her lunch.
I know it is seafood and easy for fingers so I am ok with that.
My husband made an appointment for the engineers to visit our place to do an inspection on the repairs for midday *sighs*
Oh well I will be glad to see the end of the repairs .
Husband now has some painting for the couple of outside walls that didn't get painted in the repair work

 

[Raggedrobin]

Hi Mrs TM
I haven't been on for a while, saw your thread and my heart went out to you. My Mum is now 99 and still going. She has never got to a point where the staff have officially told me she is end of life but she has been up and down like a yoyo, sometimes bright as anything but generally on a decline. Some days she seems near the others she seems to grip on to life like nobody's business.

She is in a nursing home but even so I have put my life on hold to stay nearby and visit as much as she needs. Even with a nursing home, in the summer I suddenly suffered a sort of 'burn out' where I felt I was losing my sense of compassion, I was actually feeling almost annoyed that she was dwindling on and felt like my life was dwindling off.

So I decided, for the first time, to take some holidays away, still no more than a week at a time, but to stop feeling I had to wait until she had gone to do this. At 99, it is easy to think, well, she won't keep going for much longer, so I will delay that trip. But I found that is what had also happened at age 96, 97 and 98.

In the end I decided, if Mum couldn't let me go, I was going to have to let go of her. And so although I am still mainly staying nearby, I will go for a week away now, to be back with my partner and friends. it sounds incredibly cruel, as if I am ditching her at the last hurdle, but I just couldn't cope with going in to see her so much anymore (I am her only visitor so I feel a lot rides on my visits).

I wish to hell she would just pass away in her sleep, I hate knowing what might lie ahead. I sometimes wonder if the gritty determination to stay alive can be part of the illness for some people. I didn't think she would make it to 99, now I am left wondering if she will be making 100...

 

[MrsTerryN]

Thank you Ragged. Mum is only 81 and up to this last 'turn ".. we kinda didn't consider her even close to death . I thought mum would probable have a fall ,break something and go from that or possible a heart attack..
Mum is stabilised and eating and drinking, lots of chocolate in that . So dehydration and starvation is no longer an issue.
I am sitting here now watching her sleep. She looks so frail now. She is now bed bound and almost non verbal. She only has occasional words.
Mum now has no recognition at all.
Previously even if mum couldn't remember me I would still get smiles (mostly )
Now however she just gets a kinda fearful look.
She is so lost now.

 

[canary]

((((hugs)))) Im so sorry.
There is nothing I can say - just know that we are holding your virtual hand

 

[2jays]

Holding your hand tight too

My Mum has had a major downturn. We have had times when we have thought "this is it" and mum bounced back

This time, her essence has gone.


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[spurs50]

Roller coaster

My mum was also given two weeks to live in July. She has gradually got to being stable. She sleeps a lot as she is in bed full time, however I get some smiles sometimes. It has been a roller coaster for me and my family as she has had three separate incidents of palliative drugs. She only started to stabilise in September.

 

[2jays]

My mum was also given two weeks to live in July. She has gradually got to being stable. She sleeps a lot as she is in bed full time, however I get some smiles sometimes. It has been a roller coaster for me and my family as she has had three separate incidents of palliative drugs. She only started to stabilise in September.

Hugs to you. It's not easy is it xxx


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[canary]

(((hugs))) to spurs and 2jays
From another one who has been told twice this year that we were looking at the end, but mum has bounced back each time.

 

[MrsTerryN]

Canary and spurs how do you do it ? Rhetorical i know but wow.
Ok ramble mode on
I am stresssed to the max. I know the signs which also means blood pressure wont be behaving.
I have a five week trip that has been planned for months. It will be my last with my son as a single at home son and also our last as just husband son and i (husband is the wicked stepfather)
We are a very close family. This trip was always geared as the last one. He is likely to be engaged/married/living with girlfriend in the new year.
Mum is in a wonderful nursing home with dedicated and caring staff. They are all encouraging me to have the holiday. They have said mum has stabilised and no way to tell what is happening.
Ok so what is my issue ?
Caught in traffic coming home my thoughts :
I am a dreadful daughter for abandoning my mother
I am a dreadful wife for not having this family trip when ,oops forgot to mention, son is moving out and husband has his second brain turmour removal early next year . Major surgery up to 16 hours ... six months full incap blah blah blah
I have given up so much for mum already
I havent done enough i should be with her more hours of the day
Etc etc.
Sooo i am going on my trip, thank you for the advice in pm people , sooo glad i have a ton of luggage allowance because i think guilt will be heavy.
I also think i am getting ... upset.. sad etc about mum and my decisions. I have been quite clear that the decisions are all mine and mum's (when she could) i have no interest , even now, in sharing that burden. My uncle is too old.. my son... nope he had enough responsibility and contact and being with my father when he was dying. My son did so much with me at that time. Not prepared to put him through a lengthy similar support role when his new life is beginning.
Ok after my rambling and talking to myself i do know the following
Mum is safe
Mum is cared for
Mum wont notice
My son and my heart would notice if I didnt go on holidays
My mum would kick my butt if i didnt go (when we are all together again )
My uncle has already had words to me emphatically reminding me why i WILL be going (he got very stroppy about the idea of not going )
Actually you know what (if you have lasted this far you are amazing) whatever i do... i wil, have guilt . So this time I pick my husband and son , I have chosen mum over my family before.

 

[MrsTerryN]

Holding your hand tight too

My Mum has had a major downturn. We have had times when we have thought "this is it" and mum bounced back

This time, her essence has gone.


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So hard

 

[canary]

FWIW, I think that you have made a good decision about the holiday
Try and leave that guilt monster behind.
xx

 

[lemonjuice]

Like canary and spurs, my mother has been expected to die many times during the past 2 years, but always rallies, as her general health other than the dementia is good. We went on holiday recently and shortly before we left my mother had yet another 'acute downturn'. I instructed the Home and my sons which funeral Home to contact. Got out her 'funeral clothes' laid out on our bed and then we went. I told family once we'd left we would not be returning before the end of the holiday.

If something happened, it happened. I've said 'Goodbye' so many times we have nothing left to say and it won't matter if I'm not there at the final end as she almost certainly won't be aware. I always used to joke with her that she'd end up 'crying wolf' once too often even before the dementia set in- she has heart problems and it seems she's determined to prove me right.

No surprise though mother rallied yet again and as usual after one of these events for a short while becomes more awar and even 'tries' to speak, though it just comes out as gobbledegook, either because her brain can't process or because after 2 years of non-use the muscles won't work any more.

Had another TIA this past weekend and yet on Tues was awake and more alert again.
Roller coaster journey it certainly is.

 

[MrsTerryN]

Thank you canary. I am fortunate with the support I have received virtually and here at home.

Lemon juice oh my goodness. As I have said this is mum's first "She is likely to pass " episode but similar to your mum , mum has rallied.
She was even out and walking a few steps yesterday with assistance.
Today I actually got a smile though she is now back to snoring and sleeping.

 

[cragmaid]

Now about this guilt malarky..... Guilt is a heavy burden, so what I suggest is that you pack in in a suitcase and either take it to the airport ( thank you extra baggage allowance) and forget to get that case off the carousel (actually this is my favourite plan, it can be that one case you see on a carousel going round and round unloved and unwanted)....or....pack it in a spare suitcase and forget to take it with you at all ( this means it might still be at home when you get back unless you can arrange for someone to empty it in the dustbin while they water your plants)

So glad you have made this decision......just remember to pack your thermals and your raincoat

 

[MrsTerryN]

Lol thanks cragmaid. Mum today was incredibly perky and actually had semblance of a conversation with me. I had taken the dog in to visit her and of course she was full of beans

 

[MrsTerryN]

Mum and our dog

This morning's visit

 

[MrsTerryN]

And even perkier today. I have spoken to the head of the occupational therapy team and she is going to organise mum to be regularly walked now. She commented that three weeks ago we had organised mouth swabs , palliative drugs and new mattress.

Sister did comment though at this stage mum will not be permitted to be out of bed alone. Prior to the downturn she had had a few falls due to sudden blood pressure drops.
Cant get over the difference

 

[2jays]

Sounds like both our mums are TOB's - Tough old Birds

Mum isn't quite at the stage of actually getting out of bed,

Yesterday, I was told that she was showing signs that she wants to get out of bed and has been trying to help more than hinder during personal care by lifting her head as much as she can when changing her nightie

Such a roller coaster of emotions going round my head just now


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[MrsTerryN]

I don't think I was quite that polite about mum lol 2jays.
I am just stunned at the difference.
I had told her brothers about her impending death so everyone was aware. .
I have now informed my uncle that mum isnt passing at this point and is actually doing quite well.
On a slightly serious note I found the first 10 days or so. . To be incredibly difficult.
I can't fathom how I will be if she continues, as others have said their loved ones do , having episodes of "deaths door " and recovering.

 

[2jays]

This is mums 3rd episode of "deaths door" I have spent the last 2 christmas' with her in hospital. 24/7 care shared between sister and I

This is the first time I've told people/friends/family that mum is "at deaths door"

And, it appears, now maybe she isn't








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