Swallowing difficulties

Rebecca O

New member
Jul 12, 2022
4
0
Hi everyone. First time posting here but feel the need to reach out to people going through or have been through what me and my family are currently going through. My mam was diagnosed with early onset alzheimers 12 years ago at age 50. Mam is now bed bound and relies on staff for everything. Mam has had some difficulties with her swallowing for a little while, however 2 weeks ago this took a turn for the worse. We had the really uncomfortable and heartbreaking conversation about the risks associated with feeding her at this point in her illness and agreed that food would continue to be regularly offered but if no interest or if swallowing difficulties were evident then food and fluids would not be given (SALT and GP all involved). At this point the family were preparing for the worst ad very little food and fluids were been taken by mam. However Mam has yesterday and the day before opened her mouth to eat. I feel totally thrown by this and feel like this roller-coaster of an illness has again took another turn. Just when we were getting our head things progressing towards end of life care and now she is eating again. Trying to take each day as it comes but this illness really does mess with your emotions. Has anyone had anything similar happen to them? Can the interest in food and the swallowing function just come back? Any advice would be massively welcomed as I feel like I am going out of my mind ha
Thanks in advance
Rebecca
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
Welcome! I'm in similar circumstances with our Mum... mainly going out of my mind! I can spend hours (literally) trying to tempt her to open her her mouth, then she'll suddenly decide she'll take some food, likes it, and eats a few mouthfuls readily. This comes and goes like the wind though... and she often loses interest mid-mouthful and then holds it there for ages and ages and then doesn't know what to do with it. Same with drinks.

She seems to respond to the warmth of a cup of tea raised to her lips better than cold things, and I have success with "pokeable" food like Walkers French Fries, broken bits of ginger nut, or Chocolate Shreddies to get her jaw going and her mouth "interested". But your Mum sounds like she's beyond the crunchy stage.

Bottom line, I have nothing very useful to add other than the shared experience of tearing your hair out while dementia makes miserable fools of all of us! :)
 

Roman223

Registered User
Dec 29, 2020
366
0
Welcome! I'm in similar circumstances with our Mum... mainly going out of my mind! I can spend hours (literally) trying to tempt her to open her her mouth, then she'll suddenly decide she'll take some food, likes it, and eats a few mouthfuls readily. This comes and goes like the wind though... and she often loses interest mid-mouthful and then holds it there for ages and ages and then doesn't know what to do with it. Same with drinks.

She seems to respond to the warmth of a cup of tea raised to her lips better than cold things, and I have success with "pokeable" food like Walkers French Fries, broken bits of ginger nut, or Chocolate Shreddies to get her jaw going and her mouth "interested". But your Mum sounds like she's beyond the crunchy stage.

Bottom line, I have nothing very useful to add other than the shared experience of tearing your hair out while dementia makes miserable fools of all of us! :)
 

Rebecca O

New member
Jul 12, 2022
4
0
Thanks Andrew for your shared experience. Yes mam is on purified diet and up until recently wouldn't open her mouth for food. This illness is so tough and in a weird way pleased it's not just me going out of my mind (sorry)
 

Roman223

Registered User
Dec 29, 2020
366
0
I've read your posts and can resonate with both! My mum is in hospital and has been having difficulty with swallowing for a number of weeks! She has been holding food in her mouth on and off for a while. Some days I've got from the nursing staff she's eaten a bit. Other days I have had she is very poor at eating and doesn't want to eat. On Friday she took a turn for the worse and was having extreme difficulty with her swallowing and had a few choking issues. She was seen by SALT and is on NBM at present. Like both of you I too am on a very long rollercoaster ride. But unfortunately there is no adrenaline making you want to laugh and scream and definitely no fun to be had ....?
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Hi and welcome to the forum @Rebecca O. My husband was the same. We had many times when no matter what was put in front of him he had no interest. Then there were times when he never opened his eyes so couldn’t see the food but touch his bottom lip with a spoonful and his mouth was open wide and he was eating and drinking. My thoughts and I had a lot of them trying to fathom out dementia, was he wasn’t hungry or thirsty and long gone was his response to eat even if he was not hungry. I think we all do it, can’t finish the main course but can manage the dessert. As much as it worries us we have to accept it is their choice, maybe the only one they have left.
 

Frank24

Registered User
Feb 13, 2018
420
0
I haven’t had this experience but recently lost my mum to this disease, so wanted to say that dementia is one of the worse types of hell you can experience watching someone you love struggle. The unpredictable nature of the end of life is very hard to cope with. I think I did go a bit mad. It’s torture. It’s also very difficult to accept the end after a long illness. Everything you feeling is normal. Yes it is a long roll a coaster ride with no fun to be had.
 

Rebecca O

New member
Jul 12, 2022
4
0
Hi and welcome to the forum @Rebecca O. My husband was the same. We had many times when no matter what was put in front of him he had no interest. Then there were times when he never opened his eyes so couldn’t see the food but touch his bottom lip with a spoonful and his mouth was open wide and he was eating and drinking. My thoughts and I had a lot of them trying to fathom out dementia, was he wasn’t hungry or thirsty and long gone was his response to eat even if he was not hungry. I think we all do it, can’t finish the main course but can manage the dessert. As much as it worries us we have to accept it is their choice, maybe the only one they have left.
Thank you for your reply. Yes I feel this is my mams last choice. She is eating very little now x
 

Chell J

New member
Jul 25, 2022
1
0
Hi, I’m new here. I have had the cruel roller coaster of Alzheimer’s for 6 years now with my lovely mum. She eats very little and is very frail. The worst part is that she spits out all the time, refusing tissues and instead preferring to spit wherever she is. Her weight seems to plummet and then she eats a little bit and puts some of the weight loss back on. It is very hard to understand the effects of this disease and the way I look at it is that mum is losing her understanding of what to do with food and saliva. It’s heartbreaking watching the deterioration.
I’m sorry I can’t really add anything positive to previous comments to help make things easier for anyone. For me, this forum will hopefully help me to feel I am not alone.
 

Gosling

Volunteer Host
Aug 2, 2022
1,663
0
South West UK
Hi everyone. First time posting here but feel the need to reach out to people going through or have been through what me and my family are currently going through. My mam was diagnosed with early onset alzheimers 12 years ago at age 50. Mam is now bed bound and relies on staff for everything. Mam has had some difficulties with her swallowing for a little while, however 2 weeks ago this took a turn for the worse. We had the really uncomfortable and heartbreaking conversation about the risks associated with feeding her at this point in her illness and agreed that food would continue to be regularly offered but if no interest or if swallowing difficulties were evident then food and fluids would not be given (SALT and GP all involved). At this point the family were preparing for the worst ad very little food and fluids were been taken by mam. However Mam has yesterday and the day before opened her mouth to eat. I feel totally thrown by this and feel like this roller-coaster of an illness has again took another turn. Just when we were getting our head things progressing towards end of life care and now she is eating again. Trying to take each day as it comes but this illness really does mess with your emotions. Has anyone had anything similar happen to them? Can the interest in food and the swallowing function just come back? Any advice would be massively welcomed as I feel like I am going out of my mind ha
Thanks in advance
Rebecca
Hi Rebecca, shared experience here for sure sadly. My Mum in care home for 8 years - now late stage dementia (91 years old) has to be ' fed and watered' by the care home staff. Literally spoon fed. Some days she will open her mouth and eat food (soft only on a spoon). and other days she refuses to open her mouth. Sometimes the feel of a drinking straw to her lips, then she will open and drink some juice, other times, she keeps her mouth firmly shut.
It's just so horrible. This disease that has made her an absolute shadow of her former self.... she would too absolutely hate to realise or know how she is now. I can always remember her saying, after he cousin went down with 'senility' that '' If ever I get like that, shoot me!'' I can't do that, so all I can do is provide care for her in the best way and visit every other day. It's such a miserable disease.
 

Suze A

New member
Aug 10, 2022
1
0
Hello, I'm new here, but can relate to what everyone is saying.

My heart goes out to you all-it's so hard, overwhelming at times.

My mum was diagnosed 8 years ago with early onset semantic dementia, she was in her 50's-active, running a florist business, being a star, we spoke about everything.
We're now at the stage where she is on a soft diet and needs to be fed. She has lost all movement and speech. She can't tell us anything. We guess how she feels and try to be her voice. Trying to be strong and good humoured but sometimes that feels impossible.

Mum does still giggle at TV sitcom 'Miranda' which I had never watched until a couple of years ago when
we saw how much she enjoyed it. I've now watched every episode numerous times. I can quote it!
We try to take comfort in small things.

Not many laughs with the late stage of dementia.

We have carers throughout the day who change her pad, wash and dress her.

Mum struggles to eat, it exhausts her to swallow.
Sometimes the mornings are better-She can manage soft banana loaf (I bake, as mainly sweet things appeal, and I think eating something is better than nothing)

I also sometimes blend an avocado with honey and coco powder to create a mousse which goes down well.

We''re also getting free rather bland milkshake type drinks from the GP so she's getting essential nutrients.

She sleeps so much it's hard to get enough food and liquids in her. We mainly use a syringe for liquids these days, she often doesn't open her mouth for the beaker.

Her teeth are falling out and rotting, causing pain we imagine.

Today she had a whopping 8 teeth removed in the specialist dental ward of the hospital-must have been agonising.
She always hated the dentist!

A little nervous about the feeding routine over the next couple of weeks as her mouth heals, and worried about the impact of the operation on her.

To cope I'm roping in a friend to help feed for a couple of days.

I feel we'll be watching more Miranda...x
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
eating something is better than nothing
Indeed. I've taken some pleasure in seeing my Mum eat tomatoes straight from the greenhouse and strawberries (from Tesco, sadly!) this week. But our staple recently has been ginger nuts crumbled (for texture) into an Angel Delight/Complan/Fibrogel mix.

Drinking is the bane of my life though. So stressful. Might try a syringe, but I'm increasingly of the opinion that Mum's trying to tell me it's time to stop struggling. Thinking that and doing that are two entirely different matters though!

Fingers crossed for you and your Mum after having all those teeth out. That's going to be a tough road back to "normality". My mother only has six teeth at the front of her lower jaw, but one's been broken for a long time and I live in fear of it causing her trouble. Hopefully after all this time, it won't, but luck's never infinite and... And so far, so good.

Here's hoping some of that finite good luck is keeping an eye on your Mum too.
 

Louise7

Volunteer Host
Mar 25, 2016
4,689
0
Hello @Suze A and welcome. So sorry to hear about your mum and her diagnosis at such a young age but glad that she is still able to have a giggle. My mum is on soft food and, as can be common in dementia, loves sweet things like chocolate mousse, yoghurt and ice cream. I hope the operation doesn't have too much of an impact on your mum and that the hospital provided some pain relief and advice on feeding options during the recovery stage. Enjoy the Miranda repeats - like you I have seen all of the episodes a number of times - but do keep posting as this is a very supportive and friendly community with others who also take comfort in the small things. Best wishes to you and your mum, I hope she heals well.