Is it the beginning of the end?

[Catherine277]

Hello all,

Tough post to write but I can't shake the feeling that 2024 will be the year I lose my Dad. I guess I'm looking for a little clarity... or perhaps some kind of confirmation of that sad niggling feeling.

He was diagnosed in 2017, and things have progressed quite quickly in the last 4 years - I blame the pandemic for a lot of the decline, I'm sure we all do when it comes to caring for someone with dementia. He's had a number of kidney problems, and a few months ago we nearly lost him due to some complications when trying to blast a kidney stone.

He hasn't been able to walk for 3 years, and he's not spoken properly for the past year and perhaps said only a handful of words in that time like yes or no - he no longer talks now, just noises of maybe pain or discomfort. I'd say I last remember properly singing with him... maybe Sept-Dec 2022. That was how we used to connect, so I miss that so much.

He's lost a lot of weight since his hospital stay, and he's now struggling to swallow.. it's been getting worse lately. Making a lot of noises, almost like he's trying to clear his throat, or holding food/water in his mouth. We've had a referral to the SALT team, so just waiting on this. He's got 3 pressure sores, one at the base of his spine, his heel and his toes!! of all places, I can't believe they're on his toes! These are being monitored regularly, by the district nurse.

These things seem like they're getting worse quicker, alongside still having problems with his kidneys/water infections... it just feels to me that perhaps it's time to discuss palliative care? I know it's so hard to know and it affects everyone so differently, but I just feel desperate... wanting to know what might happen when and just to try and be as prepared as possible for this last stage.

If anyone has any experience (which sadly I know so many will) with being able to tell me if this is sounding like the beginning of end of life? and perhaps palliative care should be discussed now... as my mum is struggling with the thought of this, understandably. She cares for him round the clock, and is absolutely incredible.

Thank you in advance for anyone who is able to offer any words of advice or understanding
xx

 

[Harper1207]

I wish I could have some advice to give however I understand how you are feeling as I am going through the same. My mom’s condition has been declining since November. Today she stopped talking. Her doctor says there are going to be days like this but I can’t shake the feeling you are referencing to either. She has been in the hospital since last week and through a lot. She hopefully gets to go home Friday. We have discussed palliative care with her physician and I realize it is best for her. I also feel it helps us as a family. I think it would be helpful to discuss palliative care with your dad’s physician as it can help improve the oversll quality of life for as long as we have them. No one can say how long exactly that may be. As you said, it affects everyone differently. Sending prayers.

 

[Missodell18]

It’s hard because everyone’s journey is different, sometimes shorter, often much longer than you’d expect. My mum stopped talking about a year ago, lost her mobility about 9 months ago, we’ve been told she will die in the next day or so twice before and she didn’t - however she could always eat and swallow but now I think we’re at the proper end as she’s stopped swallowing, so I’m very sorry to say I don’t think that’s a good sign for your dad. However people do rally sometimes. It’s very up and down and emotional. Try and speak to a doctor if you can and just ask the question. I know it’s hard to do it. Wishing you strength and love xx

 

[Catherine277]

I wish I could have some advice to give however I understand how you are feeling as I am going through the same. My mom’s condition has been declining since November. Today she stopped talking. Her doctor says there are going to be days like this but I can’t shake the feeling you are referencing too either. She has been in the hospital since last week and through a lot. She hopefully gets to go home Friday. We have discussed palliative care with her physician and I realize it is best for her. I also feel it helps us as a family. I think it would be helpful to discuss palliative care with your dad’s physician as it can help improve the oversll quality of life for as long as we have them. No one can say how long exactly that may be. As you said, it affects everyone differently. Sending prayers.

I'm so sorry to hear about your Mum, I wish no one had to witness or live with this cruel cruel disease. I'm praying your mum can be home tomorrow, I know the anguish and waiting is so tough.
I just need to gently convince my Mum to get in touch with our GP to discuss this next step, I don't think she's quite ready to accept that pallative care would be the next step. She cares for him 24/7, and he's 100% still here because of her. I wish I could see the future! the inbetween is so tough, but that's life. sending prayers back to you, thank you for your reply

 

[Catherine277]

It’s hard because everyone’s journey is different, sometimes shorter, often much longer than you’d expect. My mum stopped talking about a year ago, lost her mobility about 9 months ago, we’ve been told she will die in the next day or so twice before and she didn’t - however she could always eat and swallow but now I think we’re at the proper end as she’s stopped swallowing, so I’m very sorry to say I don’t think that’s a good sign for your dad. However people do rally sometimes. It’s very up and down and emotional. Try and speak to a doctor if you can and just ask the question. I know it’s hard to do it. Wishing you strength and love xx

Thanks so much for your kind words. I'm so sorry you're experiencing such a similar thing with your Mum. Does your Mum have good days and bad with the swallowing? Last week my Dad wasn't doing great but last night he ate all his meal (albeit very slowly) I think that's a sign it's going to be very up and down like you said. Like I just said in my reply to Harper1207, I'm going to gently encourage my Mum to speak with the GP as she's not ready to accept this next stage yet... she's living for the day-to-day, taking each hour as it comes. Whereas I can't quite bear seeing my Dad disappear in front of our eyes for much longer.
Strength and love back to you and your family xx

 

[Missodell18]

Thanks so much for your kind words. I'm so sorry you're experiencing such a similar thing with your Mum. Does your Mum have good days and bad with the swallowing? Last week my Dad wasn't doing great but last night he ate all his meal (albeit very slowly) I think that's a sign it's going to be very up and down like you said. Like I just said in my reply to Harper1207, I'm going to gently encourage my Mum to speak with the GP as she's not ready to accept this next stage yet... she's living for the day-to-day, taking each hour as it comes. Whereas I can't quite bear seeing my Dad disappear in front of our eyes for much longer.
Strength and love back to you and your family xx

Up until about 2 months or so ago my mum had good swallowing and ate well. Then we had the first of 3 hospital admissions and since then it’s been very up and down with the medical people disagreeing sometimes whether she needed proper puréed food or just “soft”, so I guess that indicates how it could come and go. They have “levels” for die to show how and what someone is capable of eating. Finally they settled on a level 6 diet for my mum and she could have things like mashed potatoes and very minced meat and things like that. Similar to what you’d give to a weaning baby I suppose. Since the hospital stays for my mum she’s ate quite significantly less and been more difficult to feed (except for my dad but even he’s been struggling recently). It’s been gradual but with periods of it eating at all when she was very ill with infection. I think it may have been the knock on effect of the infections she had but could also just be the next step along the Alzheimer’s road.

Hope your dad has better news and recovers his eating and swallowing.

 

[Catherine277]

Up until about 2 months or so ago my mum had good swallowing and ate well. Then we had the first of 3 hospital admissions and since then it’s been very up and down with the medical people disagreeing sometimes whether she needed proper puréed food or just “soft”, so I guess that indicates how it could come and go. They have “levels” for die to show how and what someone is capable of eating. Finally they settled on a level 6 diet for my mum and she could have things like mashed potatoes and very minced meat and things like that. Similar to what you’d give to a weaning baby I suppose. Since the hospital stays for my mum she’s ate quite significantly less and been more difficult to feed (except for my dad but even he’s been struggling recently). It’s been gradual but with periods of it eating at all when she was very ill with infection. I think it may have been the knock on effect of the infections she had but could also just be the next step along the Alzheimer’s road.

Hope your dad has better news and recovers his eating and swallowing.

I’m so sorry you’ve had so many hospital stays recently, it completely takes it out of them doesn’t it. How is your Mum doing this week?

Sadly my Dads just been in hospital again for a few days, with aspiration. So he had a SALT assessment in the hospital and he is now on all completely puréed food, he’s a very poorly man. They scored him 9 on the clinical frailty assessment, so sadly it’s confirming that we are at the beginning of the end for him.
Hope we can keep him out of hospital as much as possible, and comfortable in his home xx