Heartbreaking visit.

[Rackjw]

Just somewhere to say how I’m feeling.. I’m not sure if we are at the end or nearing it but I think it’s heading there.

Went and saw mum today and she’s been deteriorating back at the nursing home since her hospital admission in December and covid. It was the first time seeing her in the bed in the nursing home and she looked so small. There was a small smile when we got there but the nurses were about to feed her so I sat by the bed and watched as mum had one spoon of porridge and held it in her mouth for a minute before swallowing. The nurse then attempted again but mum just wouldn’t open her mouth. She then tried to get her to have some of her juice which mum took but again held in her mouth for a while before swallowing.

I said to the nurse perhaps if me and my husband waited outside the room mum might eat a bit more as she was getting distracted by us being there but she still wouldn’t take anymore porridge so off they went to mix it with way more water and get into a beaker for her to drink it basically. Which she had about half a beaker of it. They then surrendered as she wasn’t going to have anymore.

Me and my husband sat with her and we got a few little smiles but no words again. Will be nearly 10 weeks since she talked to me. The nurses say all they have gotten out of her is a couple of hums. She made a few noises as if trying to communicate but they were just grumbles.

I sat and stroked her hand and her head and she dozed off a couple times in the hour. I tried to get her to have more juice and she accepted twice. Took a small sip and held both in her mouth before swallowing after a while.

She seemed to get super tired. So we let her get to sleep.

Spoke to the nurse who advised the SALT team would be in to assess mum.

Was just such a heartbreaking visit seeing her deteriorating so much more. However there was a moment I will cherish forever when I couldn’t help but let a few tears escape and my mum lightly stroked my cheek before drifting into a snooze

I know she could be this way for some time but I just hope she is as comfortable as she can be. I’m so worried she might be coming to the end and I want to make sure I’d be there for it but as with everything in this disease you just never know what’s going to happen next.

 

[Grannie G]

It`s emotional reading your post @Rackjw never mind living it.

Seeing our people with dementia heading towards the end of their lives and so vulnerable is heart wrenching. And when we get weak smiles of recognition , while it`s comforting to know the contact is still there it doesn’t really help.

You would know if your mum was uncomfortable You would see it in her face. I saw it in my husband’s face before the syringe driver was put in place.

I hope you are looking after yourself. This is such an emotionally exhausting time.

 

[Eare]

My mum has been exactly this way over 2 years. The palliative team said she would be gone in a matter of weeks yet here we are. It is an emotional time but impossible to tell just how long they will last.

 

[Rackjw]

On top of everything else going on with Mum, the reduced eating and drinking, bed bound, no talking etc the Nursing home has just called to say she has developed a sore . Does this mean anything in terms of being more likely to moving towards end of life? I've read that skin breakdown can be a part of it

 

[Gosling]

@Rackjw I am so sorry that you are having to witness this deterioration in your Mum. It's just heart breaking. Skin breakdown can be quite common as someone moves towards end of life. you are right.
This is so tough on you emotionally, as I think you know end of life varies so much from person to person, and timewise too. It can be a rollercoaster still of ups and downs. Wishing you strength to get through this.

 

[Hazara8]

Just somewhere to say how I’m feeling.. I’m not sure if we are at the end or nearing it but I think it’s heading there.

Went and saw mum today and she’s been deteriorating back at the nursing home since her hospital admission in December and covid. It was the first time seeing her in the bed in the nursing home and she looked so small. There was a small smile when we got there but the nurses were about to feed her so I sat by the bed and watched as mum had one spoon of porridge and held it in her mouth for a minute before swallowing. The nurse then attempted again but mum just wouldn’t open her mouth. She then tried to get her to have some of her juice which mum took but again held in her mouth for a while before swallowing.

I said to the nurse perhaps if me and my husband waited outside the room mum might eat a bit more as she was getting distracted by us being there but she still wouldn’t take anymore porridge so off they went to mix it with way more water and get into a beaker for her to drink it basically. Which she had about half a beaker of it. They then surrendered as she wasn’t going to have anymore.

Me and my husband sat with her and we got a few little smiles but no words again. Will be nearly 10 weeks since she talked to me. The nurses say all they have gotten out of her is a couple of hums. She made a few noises as if trying to communicate but they were just grumbles.

I sat and stroked her hand and her head and she dozed off a couple times in the hour. I tried to get her to have more juice and she accepted twice. Took a small sip and held both in her mouth before swallowing after a while.

She seemed to get super tired. So we let her get to sleep.

Spoke to the nurse who advised the SALT team would be in to assess mum.

Was just such a heartbreaking visit seeing her deteriorating so much more. However there was a moment I will cherish forever when I couldn’t help but let a few tears escape and my mum lightly stroked my cheek before drifting into a snooze

I know she could be this way for some time but I just hope she is as comfortable as she can be. I’m so worried she might be coming to the end and I want to make sure I’d be there for it but as with everything in this disease you just never know what’s going to happen next.

These moments are extremely challenging and with dementia especially so. When one cares for a mother at home, in familiar surroundings and a sense of belonging despite the very real difficulties, the feelings are confined in a way which whilst certainly demanding on both emotion and physical demands nevertheless do not disturb in the same way as when that loved one is removed to a Care or Nursing Home. Then you have relegated care to others and that often profound feeling of being redundant in the caring role is compounded during visits because each time you witness a change or a deterioration it you simply wish to rectify it or at least do everything in your power to afford comfort as you did at home. But its left to those employed to carry out that caring role to provide that comfort. This, when done properly and with dedicated practice can address " best interests" in such a way as to remove any sense of anxiety on your part. Yes, it is helpful to know what "end of life" entails. It can vary in each individual case. But being aware of symptoms and any presentations which accompany the deterioration process can only but alleviate any unpleasant surprises. Of course when you are emotionally attached as with a mother, these challenges can be profound. My late mother was subject to some essential interventions during her last month because she was bed bound and thus needed regular turning etc so l attended in order to comfort her during those procedures which agitated her. Initially one believes all will be well and there can be an underlying wishful thinking process which is of course just that. I believe one has to prepare in both mind and heart for the inevitable. Again, that can be difficult because there is an underlying denial element which is borne out of a deep bond with a loving and loyal mother which refuses to accept end of life might be taking place. I would stress that word "comfort " as being fundamentally at the forefront of the mind. Dementia can claim both mind and body of a loved one and cognition can mean something completely different for such a person. Their world can be one which we cannot share, but we can physically share a comforting hand, a gentle embrace, a meaningful smile. My mother was bed bound for one month. Did not eat nor drink during that time. I administered water via a syringe to irrigate her mouth. I insisted on being with her throughout the four weeks. The nine years that have since passed often seem like an eternity. The dementia care pathway remains exclusively the domain of those who Care. You cannot replicate the journey in any way. You have to have lived it. As a volunteer in a Care Home with residents living with varying dementias l gained real insight into the nature of the disease as it presents in each individual - every case being different. And l do not hesitate in stating once again that the watchword is COMFORT. Like when your mother calmed you as a child after a nightmare, the loving embrace and the reassuring words meant more than anything else. Ensure that ' comfort ' is in
place and that will go a long way to alleviating those pangs of uncertainty which can play on the mind so stressfully. Then the inevitable nature of the disease, taking its course as it does, might prove less a heartache than once feared...

 

[Catherine277]

Just somewhere to say how I’m feeling.. I’m not sure if we are at the end or nearing it but I think it’s heading there.

Went and saw mum today and she’s been deteriorating back at the nursing home since her hospital admission in December and covid. It was the first time seeing her in the bed in the nursing home and she looked so small. There was a small smile when we got there but the nurses were about to feed her so I sat by the bed and watched as mum had one spoon of porridge and held it in her mouth for a minute before swallowing. The nurse then attempted again but mum just wouldn’t open her mouth. She then tried to get her to have some of her juice which mum took but again held in her mouth for a while before swallowing.

I said to the nurse perhaps if me and my husband waited outside the room mum might eat a bit more as she was getting distracted by us being there but she still wouldn’t take anymore porridge so off they went to mix it with way more water and get into a beaker for her to drink it basically. Which she had about half a beaker of it. They then surrendered as she wasn’t going to have anymore.

Me and my husband sat with her and we got a few little smiles but no words again. Will be nearly 10 weeks since she talked to me. The nurses say all they have gotten out of her is a couple of hums. She made a few noises as if trying to communicate but they were just grumbles.

I sat and stroked her hand and her head and she dozed off a couple times in the hour. I tried to get her to have more juice and she accepted twice. Took a small sip and held both in her mouth before swallowing after a while.

She seemed to get super tired. So we let her get to sleep.

Spoke to the nurse who advised the SALT team would be in to assess mum.

Was just such a heartbreaking visit seeing her deteriorating so much more. However there was a moment I will cherish forever when I couldn’t help but let a few tears escape and my mum lightly stroked my cheek before drifting into a snooze

I know she could be this way for some time but I just hope she is as comfortable as she can be. I’m so worried she might be coming to the end and I want to make sure I’d be there for it but as with everything in this disease you just never know what’s going to happen next.

So sorry to read this. It’s like reading my situation too, my Dad is at the same stage and it feels torturous not knowing what’s happening next and how long this final stage will be. Sending all my wishes to you and your family, and hope your mum can be as comfortable as possible x

 

[Rackjw]

Thank you all for your messages! Its always a comfort to know that you aren't alone and there are people who understand what you are going through!

 

[Rackjw]

Just a small uodate as I lay in bed trying to sleep but too busy thinking of my dear mum to nod off. She’s been steadily at a decline now for the last few months. She rallied a little to the point she’s more awake now rather than sleeping but her talking is still non existent and her singing and humming has even reduced. She’s eating a bit but I’m noticing how long it’s taking her to swallow and the other day she ended up with 6 grapes just in her cheek! The nurses were so happy she’s rated a bag of grapes it makes me think her eating must be quite bad most of the time for them to make such a big deal of that. My mum is so painfully thin now and although they put her in her chair and strap her in so she doesn’t slid down she looks so much more out of it when she’s in the chair than in the bed. Making sure we make the most of our visits. As ever knowing there’s no timeframe for anything and we will never truly know where she is in her journey. She got moved to a room with an orange name sign on the door in a more monitored part of her nursing home and as she’s very very peaceful I can only think it’s too keep an eye on her as she’s so frail?

 

[sdmhred]

Oh bless you @Rackjw
This is so tough for you to witness.
Im sure they’ve moved your mum to an area where they can keep an eye on her. Have you asked them about this?
In my mum’s home door colour signs are used to indicate what level of care the person needs and if they’re deteriorating or not. This could be the same, it may not be. Perhaps worth checking with them.
we’re with you here.

 

[mhw]

The colour is gold standards framewotk

. Look it up on Internet it works like traffic light. It's universal in hones to indicate length of life expectancy and stage of palliative/eol care.

 

[cymbid]

When you read about these folks who are eating virtually nothing it makes you wonder exactly how many calories you need to survive. Folks report their loved ones being like this for months ....

 

[Rackjw]

The colour is gold standards framewotkView attachment 70631. Look it up on Internet it works like traffic light. It's universal in hones to indicate length of life expectancy and stage of palliative/eol care.

Ah! This is very helpful thank you. X

 

[Rackjw]

Oh bless you @Rackjw
This is so tough for you to witness.
Im sure they’ve moved your mum to an area where they can keep an eye on her. Have you asked them about this?
In my mum’s home door colour signs are used to indicate what level of care the person needs and if they’re deteriorating or not. This could be the same, it may not be. Perhaps worth checking with them.
we’re with you here.

Definitely think ill
Mention this in the morning. Makes sense to them telling me when I asked how she was that she was so so and the focus is to make her as comfortable and as well looked after as possible. I think they try not to give anything that could be seen as bad news or anything too worrying if they don’t have too. They are always super upbeat about any small victories which is lovely but sometimes you just want to know what’s what. But I am very grateful she’s got such a great care team in her nursing home x

 

[LewyDementiaCarer]

When you read about these folks who are eating virtually nothing it makes you wonder exactly how many calories you need to survive. Folks report their loved ones being like this for months ....

True. Humans can have the potential to last up to 3 months without food, as long as they are drinking water.
With the nearing end of life decline you get a drop off with consumption where the PWD simply refuses to eat much or can not due to swallowing issues, so weight loss rapidly increases and the body becomes frail and tiny. -Yet just very small intakes alone (a few tbsp here and there) can keep function to some level, for what often seems like an impossible amount of time.