End stage ... so many mixed emotions

[Linbrusco]

Mum 77 with Alz. Now in 6th year and has been in care 2.5yrs
There has been a rapid decline in Mum in past 9 mnths but especially in the last 2.
Mobility affected, falls, reduced appetite, weight loss... dentures now ill fitting, and removed them.
In past 3 weeks refusing food, fluids, Fortasip, medication a good majority of the time.
In past 10 days nothing more than a total of half a banana and a small bowl of porridge. Never a full bottle of Fortasip and maybe one whole glass of lemon barley a day.
Mum is mildly dehydrated. Nursing staff have discussed IV or subcut injections for fluids but nigh on impossible plus with risks.... and for what? Its not going to improve things long term.
Mum is not agitated or distressed just sleeping more.

At this point in time I’m calm, Ive had years to think of Mums passing, but I just want the easy way out. A phone call to say Mum has passed in her sleep. but then I feel guilty, should I be visiting more, staying longer and spending more time with Mum? But then I have work, and need the money. Mum could be like this for weeks/months?
I have a husband with health issues, a 16 & 21 yo and I care for Dad, who lives next door, and has mild mixed dementia.

Theres another worry... Dad.
He still thinks after 2+ years Mums going to get better and come home.
Despite seeing her the way she is now.
How do you provide comfort & support to a parent with not only Dementia but a parent you have never been close to?
None of us 3 children have.
He was always an abusive bully to Mum.

Many mixed emotions

 

[canary]

((((((((((((((((((((((((((hugs)))))))))))))))))) Lin, so difficult.
Whatever you decide DO NOT FEEL GUILTY. Did you hear me shouting across the globe?

For what its worth I would carry on with what you are doing. The care home will know when she is reaching the final stages and will probably contact you to let you know. I also think you are right in letting nature take its course and not subjecting her to IV fluids - its what I asked for my mum too.

I remember that your dad has FTD in his dementia and a lot of FTD symptoms. I doubt that you will be able to get through to him what is happening and may not be able to comfort him afterwards. I would deal with that after the event and he may not take it as badly as you think - but, whatever, dont worry about that now. Just take things as they come.

 

[Shedrech]

hi @Linbrusco
you say your mum is sleeping a lot so may well just sleep through most visits even if you were there all day
you have stood by her for so long, she 'knows' how much you have done for her and also how much you need to do for yourself and your family, so do whatever is best for you and be sure your mum would understand, indeed be proud of the wonderful daughter she raised - so no guilt, please
from what you have written over time about your dad, there is no way to provide comfort for him and you support so much more than he can ever comprehend - so again, no guilt please
I understand your thoughts about a phone call, I 'look forward to', wish for and dread that call too; whatever is thrown at us, though, we will find ways to cope
my very best wishes to your family, especially you and your mum

 

[MeganCat]

Hi Lin
I havent been on here in ages, my mum has been in her care home for 5 years, immobile and singing then gradually talking incomprehensible words incessantly for the last 4 - how she hasnt lost her voice is beyond me. The last few weeks she has gone silent, sleeping when i visit.
I feel very much like you. I feel guilty for not staying more than 30mins if shes asleep, i jump when the phone rings. Shes still eating but had a sore on her foot. I havent seen her for a week as i am full of cold and spent xmas with my dad who has just been diagnosed with LBD. Still feel guilty!

You shouldnt - i know its easy to say. Xx

 

[Amy in the US]

Hi, Lin. I wish I had brilliant advice for you, but I don't.

I know things with your dad have been a major struggle on so many fronts for so long and it must wear you down.

I'm sorry to hear about your mum.

Please have some (((((((((hugs))))))))) and hope you will keep posting.

 

[KathrynAnne]

Hi @Linbrusco we seem to be at a very similar stage with our Mums. My Mum is asleep most of the time and appears to have completely lost her mobility. Sending love and hugs to you xxx

 

[marionq]

My husband too is sleeping for long periods eg 16 to 18 hours a day, still has some mobility but needs support. When he gets to the stage you describe @Linbrusco i won't allow liquids or foods when he refuses them. I think once the body decides it's had enough then we need to let go too.

You've had a long difficult time of it. No more could be expected of you.

 

[Timeout]

Our mum is around the same stage, she was poorly over the summer with open leg sores and urine retention, probably due to repeated UTIs and has been mostly bed bound since. We didn’t think she’d see Christmas but here she is, 13 years in.

She’s on a butrans patch and sleeps almost all the time but will eat a good diet, mainly due to the fact she automatically opens her mouth when anything is placed near so in it goes.

That’s the only thing that’s happening at the moment, the last thing she has to lose is eating as she now has the fixed grimace and her head is flexed backwards due to neck contracture. I do think she could go on for quite a while like this as long as she’s eating and there doesn’t appear to be any reduction in appetite at the moment.
I just can’t believe how cruel this disease is, there just doesn’t seem any end in sight.

Sending love and strength to everyone in the same boat x

 

[Linbrusco]

Thanks so much for your replies and kind words.

A question though
staff encourage Mum to eat and drink but after a few attempts, if shes saying No and pushing them away they wait a few minutes and try again, and stop otherwise.
I pretty much do the same whereas I beleive my sister is more forceful and doesnt take a No easily, saying “ come on drink up” or “ “ have anothet bite”and I feel Mum gets a bit agitated.

Wouldnt this be more inclined to cause choking or aspiration??

 

[canary]

I think it probably would, Lin.
I think your sister either doesnt understand, or wont accept her mums stage

 

[Grannie G]

How do you provide comfort & support to a parent with not only Dementia but a parent you have never been close to?

You just do what your conscience dictates Lin. A magic wand cannot be waved to produce feelings of love and kinship just because the person is ill. It`s enough you are providing the basics.

 

[Linbrusco]

Mum is still hanging in with little to no foods... an occasional mouthful or three of porridge or pureed food , maybe 3/4 to 1 full bottle of Fortasip and a glass of lemon barley a day. It takes a carer up to 45 mns to get much into her. By which time they stop.
On a bad day just the lemon barley.
In the last 4 days Mums mobility has declined to just a few steps. They reposition her every 2 hrs 24/7.
GP checks her every 3rd day and she gets weighed weekly, losing about 2lbs every week.

The thing that really gets us now is that Mum pretty much has her eyes closed all the time, even when they are trying to feed her or give her a drink.
Yesterday she was sitting in a chair, on a pressure cushion.
Didnt respond to “mum” but she did to her name.
Her speech is unintelligible and a whisper.
When she did open her eyes briefly they were glazed and she couldnt focus. No recognition of my face or me telling her my name.
She seemed agitated. Never still. Sitting forward as if if to stand, and then sitting back. Constantly picking at her clothes, rubbing her eyes, scratching her head.
When holding her hand she has an almighty grip.
She is still on a low dose quetiapine ( still gets aggressive without it) when they can manage to get a tspn of food into her, but is only on liquid paracetamol.

I am seeing the Dr tomorrow to get her reassesed for a Hospital Level of care rather than her Dementia Unit.
Nurse at her Dementia unit just says its Alzheimers progression.
Yes maybe so, but its also end of life, and I dont feel Mums getting the level of care she needs. Dementia unit has less staff and many more able bodied residents.

 

[canary]

I am so sorry Lin ((((((((((((((((hugs)))))))))))))))))
Mum was in her dementia unit right until the very end and passed away there. She didnt need to be transferred to nursing care. What sort of care do you feel that your mum is not getting?

 

[Linbrusco]

@canary
They have 2 carers and 1 activities coordinator , 1 RN, for 20 residents.
When Mum could walk at least she could walk to her room and back. She might not have participated in activities but sat and watched.
Now she can do nothing but sit or lie down with eyes closed.
With carers busy with so many other residents I feel that much of the time in between being repositioned, there is not much interaction or one on one, other when we are there.
Yesterday they had 2 carers taking it in turns to feed 6 residents.
The nursing care I have no issues with, but just the general making Mum comfortable now.
We bought her a special pillow & a small blanket that she could hold and play with instead of the hem of her top, but yet they were in her room.
Hospital level has more carers/RN ratio to residents.

 

[Moose1966]

@canary
They have 2 carers and 1 activities coordinator , 1 RN, for 20 residents.
When Mum could walk at least she could walk to her room and back. She might not have participated in activities but sat and watched.
Now she can do nothing but sit or lie down with eyes closed.
With carers busy with so many other residents I feel that much of the time in between being repositioned, there is not much interaction or one on one, other when we are there.
Yesterday they had 2 carers taking it in turns to feed 6 residents.
The nursing care I have no issues with, but just the general making Mum comfortable now.
We bought her a special pillow & a small blanket that she could hold and play with instead of the hem of her top, but yet they were in her room.
Hospital level has more carers/RN ratio to residents.

Hello I haven’t been on here for a while just getting on with dealing with horrible disease that takes our loved ones . I can relate to your situation 100% my mum is exactly the same although has not been mobile for some months , hoisted and wheelchair . The home still get her up and dressed and into the main lounge, they usually sit her in front of a floor to ceiling window so she can look outside, she doesn’t as she sleeps all the time , possibly has a yoghurt or porridge and then Ensure drinks . We haven’t had a mum daughter chat in months breaks my heart . I like you live with my phone , waiting , dreading but also wishing for that call . I run through in my mind how I will feel but I know when that day does come I still won’t be ready . I heading off to visit now she won’t know I’ve been but I feel I need to give her as much of my time as I can she’s not going to be around much longer so its the least I can do . Thinking of you , stay strong .

 

[Linbrusco]

@Moose1966
Thanks
My Mum is being assesed today to be moved to hospital level care today but since yesterday has developed a chest infection
Went to visit her yesterday and was sound asleep. Couldnt rouse her at all, but she did respond to me touching her feet.
Not long before I was about to leave, she sort of woke and smiled when I told her she had been snoring.... she hadnt, but I just wanted to see what reaction I got Will know more today.

 

[Moose1966]

@Moose1966
Thanks
My Mum is being assesed today to be moved to hospital level care today but since yesterday has developed a chest infection
Went to visit her yesterday and was sound asleep. Couldnt rouse her at all, but she did respond to me touching her feet.
Not long before I was about to leave, she sort of woke and smiled when I told her she had been snoring.... she hadnt, but I just wanted to see what reaction I got Will know more today.

Sounds so similar to my mum , even the sitting forward as if to stand up , mum hasn’t walked or straightened legs since August , I guess in her head she is attempting to stand I really have no clue , I went today and mum was fast asleep like you I stroke her and sing a long to see if she reacts , sometimes I think she’s just ignoring me , mums 86 but has always been very healthy she doesn’t have any underlying health problems , although they do have chest infection going around the care home . They are looking to get her meds in liquid form as she’s not swallowing them, I don’t know if meds are keeping her alive or is it cruel to stop . Will see what this week brings . Thinking of you and it does help to have somebody who feels the same as I do , family sometimes aren’t too interested and I try not to burden them .

 

[canary]

Oh no, not something else?
Topping up your ((((((((((((((((((((((hugs)))))))))))))))))))))

 

[Amy in the US]

Oh, no, Lin, a chest infection. I am sorry to hear that.

I hope you can get your mum the care she needs for both your sakes.

Also sending (((((((((((((((hugs))))))))))))))) to use now or bank for later, as needed. Please keep us updated when you can and when you feel able.

 

[Amy in the US]

@Linbrusco, no need to reply. Just wanted to say hello and thinking of you, your mum, and your family. Sending (((((((((hugs))))))))).