Until fairly recently despite her age (96) nans been doing well, the last 2 weeks have been a rapid decline, she's now confined to a wheelchair, incont, little to no speech, and hasn't been able to feed herself, in the last 24 hours though she's now refusing food and drink the point of pursing her lips shut, I didn't know if anyone else has had this experience or any ideas where I go from here, professionals haven't brought up the idea of a feeding tube, but the little research I've done on the subject doesn't look positive, any ideas welcome
I'm a newbie here, I'm my 96 yo nans carer
- Thread starter Butterfly00
- Start date
I think you should aim for little and often, things like jellies, ice lolly, mousse, that have high fluid content. It doesn't seem appropriate to me to be over forceful. Do you in your heart of hearts feel that a feeding tube is the right way to go?
Could you tell if she really does not want to eat at all because she realises she needs to move on? My experience of MIL was six years in a NH during which time she was more or less level in all her abilities, such as they were. During the last two weeks of her life, she repeatedly told us she had had enough and she set her jaw and "refused" everything - food/drink/personal care. The NH of course ploughed on, as they are required to do, but she had her way in the end and she slipped peacefully asleep two weeks later. For someone with such longevity as your nan, I would think a feeding tube is an unacceptable intrusion. Perhaps the time has come? Stay strong, be guided by her and what you think she would want you to do if that is at all possible. Intolerable for you. Please keep in touch. Sending loving thoughts.X
No I don't feel in these circumstances the feeding tube is the right way to go, it was only a week ago when she could speak that she reiterated she wants to live, she doesn't want to die, she was quite adement about it, so I'll keep at it, today wasn't quite as bad, she wasn't forcing her mouth shut as hard as yesterday
One thing you could try which uses the automatic instinct to open the mouth is to use a teaspoon with something like custard or jelly or ice cream on it and you tap the bottom lip with the spoon. Sometimes this gets a reaction for long enough to put the contents into her mouth. Please make sure that she is sitting upright before you do this to avoid any risk of asphyxiation. If it doesn't work and she continues to clamp her jaw shut, then you will have to respect her wishes.
I know that this can be an emotive issue and that it can make you feel guilty as if she is being starved of food or drink. One way to look at it might be that, having lost so much abilities to this horrible disease, this is the one remaining thing that she still has control over. For this reason we should continue to offer food and drinks but if they are refused then respect that decision.
Fiona
PS Just wanted to add that it is important if someone is not eating or drinking to make sure their mouth is comfortable and that they are not in any pain from oral thrush that can develop or from dentures rubbing and causing sores (remove the dentures if necessary). You need to put something on her lips regularly to keep them moist and stopping then cracking which is painful. The use of flavoured lip salves can be appreciated - my mother loved the strawberry one, for example.
I know that this can be an emotive issue and that it can make you feel guilty as if she is being starved of food or drink. One way to look at it might be that, having lost so much abilities to this horrible disease, this is the one remaining thing that she still has control over. For this reason we should continue to offer food and drinks but if they are refused then respect that decision.
Fiona
PS Just wanted to add that it is important if someone is not eating or drinking to make sure their mouth is comfortable and that they are not in any pain from oral thrush that can develop or from dentures rubbing and causing sores (remove the dentures if necessary). You need to put something on her lips regularly to keep them moist and stopping then cracking which is painful. The use of flavoured lip salves can be appreciated - my mother loved the strawberry one, for example.
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Could you tell if she really does not want to eat at all because she realises she needs to move on? My experience of MIL was six years in a NH during which time she was more or less level in all her abilities, such as they were. During the last two weeks of her life, she repeatedly told us she had had enough and she set her jaw and "refused" everything - food/drink/personal care. The NH of course ploughed on, as they are required to do, but she had her way in the end and she slipped peacefully asleep two weeks later. For someone with such longevity as your nan, I would think a feeding tube is an unacceptable intrusion. Perhaps the time has come? Stay strong, be guided by her and what you think she would want you to do if that is at all possible. Intolerable for you. Please keep in touch. Sending loving thoughts.X
Thankyou, she's held in there for so long and done so well, she's been with me for 9 years now, and we'd talked about her wishes, she always said what will be will be, it's gods will, the decline has been so rapid and severe, this time last year she was actually on a road trip with my mum to Queensland! I've hired a wheelchair accessible van this week and my mum and I plan to get her out and about with the hope it might lift her spirits, we've been confined to the house for the last couple of weeks since she's been in the chair, we'll see.....Thankyou for your thoughts
Thankyou I'll try the lip balm. I've been taking her teeth out the last 2 days when I feed her, to be on the safe side and make sure nothing happens to her dentures.
We've been on only completely smooth food for a week now anything with texture gets spat out, I'll see how we go this afternoon, Thankyou for your feedback
Thank you. It is lovely that you have already spoken with her about this stage in your nan's life. Good on you. She is very lucky to have you and I wish you all much success for your trips out. All the very best.X
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