Mum aged 97 not eating or drinking - ( less than 400 calories a day)

[Tezza123]

Hi all , my mum is 97 and for the last 6 months has been in a care home. She has Alzheimer’s and congestive heart failure. She is registered blind. She wasn’t coping at home and was having frequent falls , so for her safety she was placed in a care home on release from hospital. She really hated it, and cried and cried to go home. Her weight plummeted and her condition deteriorated massively. She is a shadow of her former self.

This last month she has all but stopped eating or drinking. She has been ‘pouching ‘ food and has been referred to SALT. She can only speak in whispers. She is now doubly incontinent and unable to move at all herself - so being hoisted in a FB hoist to her wheelchair/chair/bed.

In terms of eating she is only having 300-400 calories at most a day. Her bowels are sluggish and she has a very bloated belly that rumbles and growls, so they’re given her laxido. She is sleeping in bed most of the day or she is asleep in her chair. I think she’s given up. I don’t want to force feed her or give her energy drinks or forstisip drinks, as I don’t see the point ? Her quality of life is zero. I love her dearly but I am struggling to watch her suffer like this. How long can she live like this ? Should she be given extra calories ? Should the carers be feeding her ? What does everyone think. I just don’t know anymore- she seems like she is dying to me !
My brother blames me for her being in the home and therefore for her entire decline. He’s monitoring what she eats and asking the carers to stuff food in her . I think he is being unrealistic, think that if he can build her up she’ll be able to walk again etc.

What do you lovely people think ?

 

[SeaSwallow]

Hello @Tezza123 I am so sorry to read about your mum, this must be so worrying for you. First of all you are not to blame for your mum being in the nursing home, having read back on your previous posts she was just not safe in her own home any longer and needed a team of people to care for her.

From your description it does sound as if she is heading towards the last stages of her dementia journey but it is so hard to say how long this would be. As to whether or not the carers should be feeding her, they can offer food but if she will not eat they cannot force your mum, this could be seen as assault and would also be dangerous if you mum is already having swallowing issues. If you have not already done so I would suggest that you speak to the care home manger or to your mum's doctor to see what they think is the best way forward.

In the meantime please keep posting on the forum as this is such a difficult time to cope with alone and many of our members will understand just what you are going through at present.

 

[Sirena]

As Seaswallow says, the carers can only offer food, they cannot force your mum to eat it. Your brother is being unrealistic, and completely unfair in 'blaming' you. She is 97, she is very much towards the end of her life, and that is just how it is. Please try not to take on any guilt for this.

My mother has been in a care home for several years and is now at a similar stage to your mum, immobile, doubly incontinent. She is fed pureed food which sometimes she accepts and sometimes she doesn't. They can only encourage, they cannot force her. She was referred to the SALT team but as far as I know they were unable to offer anything useful (which isn't surprising).

As to how long it can go on... I'm sorry to say my mother has been like this for a year. Because she has been in her care home for years, I have complete confidence in them doing all they need to, and I know the deterioration is just a function of the illness. I don't think my mother has given up (unfortunately for her - who wants to go on this way?) I have come to terms with the fact that she'll die when it's her time, there is nothing I can do to change it.

 

[Alice_M]

Hi @Tezza123 and welcome to Dementia Support Forum. I hope you find the community a welcoming and supportive place.

It sounds like you are going through a very difficult time, and I can imagine how tough it must be to see your mum like this. You are not alone in this journey.

I am sure other members of the community will be along soon to share their experiences and thoughts.

 

[Tezza123]

Thanks for the lovely replies ! It’s nice to know that I have the support on here of others in a similar boat.

Hello @Tezza123 I am so sorry to read about your mum, this must be so worrying for you. First of all you are not to blame for your mum being in the nursing home, having read back on your previous posts she was just not safe in her own home any longer and needed a team of people to care for her.

From your description it does sound as if she is heading towards the last stages of her dementia journey but it is so hard to say how long this would be. As to whether or not the carers should be feeding her, they can offer food but if she will not eat they cannot force your mum, this could be seen as assault and would also be dangerous if you mum is already having swallowing issues. If you have not already done so I would suggest that you speak to the care home manger or to your mum's doctor to see what they think is the best way forward.

In the meantime please keep posting on the forum as this is such a difficult time to cope with alone and many of our members will understand just what you are going through at present.

Thanks very much for this . I have spoken to the carers and to mums GP and frailty nurse. They’re anxious to do the ‘right thing’ but that involves fortisip drinks, mashing her food and spoon feeding her. Thanks for your support, I really appreciate it !

 

[Tezza123]

As Seaswallow says, the carers can only offer food, they cannot force your mum to eat it. Your brother is being unrealistic, and completely unfair in 'blaming' you. She is 97, she is very much towards the end of her life, and that is just how it is. Please try not to take on any guilt for this.

My mother has been in a care home for several years and is now at a similar stage to your mum, immobile, doubly incontinent. She is fed pureed food which sometimes she accepts and sometimes she doesn't. They can only encourage, they cannot force her. She was referred to the SALT team but as far as I know they were unable to offer anything useful (which isn't surprising).

As to how long it can go on... I'm sorry to say my mother has been like this for a year. Because she has been in her care home for years, I have complete confidence in them doing all they need to, and I know the deterioration is just a function of the illness. I don't think my mother has given up (unfortunately for her - who wants to go on this way?) I have come to terms with the fact that she'll die when it's her time, there is nothing I can do to change it.

I really appreciate this reply and sorry that you are also going through this with your mum. I feel guilty even thinking this, but hope and pray that my mum doesn’t struggle like this for a year. It’s unbearable to watch as I am sure you’ll agree.

I don’t hold out much hope that SALT will fix her swallowing. Will have to wait and see what happens about that and will report back . Thanks for your kind support and good luck with your own mum x

 

[Tezza123]

Hi @Tezza123 and welcome to Dementia Support Forum. I hope you find the community a welcoming and supportive place.

It sounds like you are going through a very difficult time, and I can imagine how tough it must be to see your mum like this. You are not alone in this journey.

I am sure other members of the community will be along soon to share their experiences and thoughts.

Thank you very much for your reply. I’ve had a difficult year with mum but the last 6 months have been hell. Thanks for your kind support , I really appreciate it .

 

[Sirena]

I completely agree with you @Tezza123 that it is very hard to watch, and I too have many times wished my mother would 'give up' (I don't even feel guilty about it now!) I really hope your mother meets a peaceful end sooner than my own mother has.