End of life care at home - strugling

Doggy86*

Registered User
Sep 2, 2018
51
0
Islington
Hello,

Has anyone been looking after a loved one at home until they pass away?

We are a family looking after our Mum at home as she never wanted to go into a care home. We are under palliative care, but they are not involved too much yet.

Mum has a UTI and should be taking antibiotics but she is refusing and she is drinking little, we don't think is worth putting her in hospital as she had been in several times now and we don't want to put her through it and she will be the same in hospital, she will not drink and they probably will not give fluids anymore, she has blind since Feb and is bed bound.

I feel in despair as she is so agressive when I try to give her a drink or medicine she tells me to f off and go away. Its hard to know at which stage do you let go and give up or do you keep trying and get the same answer, sometimes we have a small window of oppertuinity to give her a drink or her medicine but its not enough, my Mum was a tubby lady but now she is losing weight. The palliative care nurse did say that when she stopped eating that she is ok and she will not feel hungry but she looks so dry as she is starting to drink less and we are all getting upset. The pallaitive care nurse in coming to speak to us Tuesday.

Has anyone out there had their love one die at home and was it OK?, I am finding it so hard to let her go and give up making her drink if she does not want too.

Mum had frontal lobe dementia and can be agressive which makes it hard too. She is not eating had not eaten for about 8 weeks, living on Milk, tea and high cal drinks, but this last couple of days she has probably only had a litre of fluids, mostly tea and water. She is sleeping a lot too.

Thanks for reading
 

buttercups

Registered User
Dec 31, 2015
26
0
Aw doggy86 I so feel for you. This is such a no win situation. I'm in the same situation though my mum is behind your mum. She is living with myself and husband and is aggressive, restless and demanding. (Complete contrast to pr dementia personality) it's the hardest thing I've ever had to do.
I think your mum does not have long left. Definite signs the end is near. You do your best and try her with antibiotics and food down her, but if you cant dont worry it's not meant to be. Her body doesn't want to take them. We all know when our loved ones are so bad, death is a release for everyone. My mum babbles on incoherently, shes sad and aggressive most of the time. She is still 'sort of' mobile and will not sit still. So I'm chasing after her trying to stop her falling. It's a nightmare I wish would end. I'm Ill (bad head cold) at the moment and absolutely exhausted having been up with mum since 5am.
I'm sure your mum will get help 'soon' with meds being delivered through a syringe driver then it wont be long. I hope for hers and your sake. Big hugs x
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Ah @Doggy86* i have no experience with a loved one passing away at home but both my cousin & a friend had this with a loved one. My cousin’s loved one was a much older husband with cancer & my friend it was her mum with cancer & my friend said that it was not something she would want to go through again.
My own mum passed away a few weeks ago in hospital & although I would have liked to have moved her back to the care home & they would have accepted her back, she was just too poorly to move.

From the symptoms you are describing, it doesn’t sound like your mum has long left & it sounds like you should be talking about a syringe driver to administer end of life care meds which keep your loved one pain free & comfortable. It is horrible accepting the fact that your mum no longer wants food & drink but it is part of the process. Big hugs xx
 

vernon

Registered User
Jul 24, 2014
22
0
north west
Hello,

Has anyone been looking after a loved one at home until they pass away?

We are a family looking after our Mum at home as she never wanted to go into a care home. We are under palliative care, but they are not involved too much yet.

Mum has a UTI and should be taking antibiotics but she is refusing and she is drinking little, we don't think is worth putting her in hospital as she had been in several times now and we don't want to put her through it and she will be the same in hospital, she will not drink and they probably will not give fluids anymore, she has blind since Feb and is bed bound.

I feel in despair as she is so agressive when I try to give her a drink or medicine she tells me to f off and go away. Its hard to know at which stage do you let go and give up or do you keep trying and get the same answer, sometimes we have a small window of oppertuinity to give her a drink or her medicine but its not enough, my Mum was a tubby lady but now she is losing weight. The palliative care nurse did say that when she stopped eating that she is ok and she will not feel hungry but she looks so dry as she is starting to drink less and we are all getting upset. The pallaitive care nurse in coming to speak to us Tuesday.

Has anyone out there had their love one die at home and was it OK?, I am finding it so hard to let her go and give up making her drink if she does not want too.

Mum had frontal lobe dementia and can be agressive which makes it hard too. She is not eating had not eaten for about 8 weeks, living on Milk, tea and high cal drinks, but this last couple of days she has probably only had a litre of fluids, mostly tea and water. She is sleeping a lot too.

Thanks for reading
Hello,

Has anyone been looking after a loved one at home until they pass away?

We are a family looking after our Mum at home as she never wanted to go into a care home. We are under palliative care, but they are not involved too much yet.

Mum has a UTI and should be taking antibiotics but she is refusing and she is drinking little, we don't think is worth putting her in hospital as she had been in several times now and we don't want to put her through it and she will be the same in hospital, she will not drink and they probably will not give fluids anymore, she has blind since Feb and is bed bound.

I feel in despair as she is so agressive when I try to give her a drink or medicine she tells me to f off and go away. Its hard to know at which stage do you let go and give up or do you keep trying and get the same answer, sometimes we have a small window of oppertuinity to give her a drink or her medicine but its not enough, my Mum was a tubby lady but now she is losing weight. The palliative care nurse did say that when she stopped eating that she is ok and she will not feel hungry but she looks so dry as she is starting to drink less and we are all getting upset. The pallaitive care nurse in coming to speak to us Tuesday.

Has anyone out there had their love one die at home and was it OK?, I am finding it so hard to let her go and give up making her drink if she does not want too.

Mum had frontal lobe dementia and can be agressive which makes it hard too. She is not eating had not eaten for about 8 weeks, living on Milk, tea and high cal drinks, but this last couple of days she has probably only had a litre of fluids, mostly tea and water. She is sleeping a lot too.

Thanks for reading
 

vernon

Registered User
Jul 24, 2014
22
0
north west
my husband is in the Waiting Room I feel and because of his seizures I just cannot sleep in the same room at present but I read to him until he goes to sleep every night and make sure I am again by his side in the morning with a cup of tea. I can see him from my bed but when he moves out of position and I cant see him, I hold my breath and creep in to see if he is breathing, he has a very bad heart as well and it happens so often and I hate being on my own at night - just in case - although I don't suppose it would be worse than seeing him have night seizures. it is that thought of "what if" all the time and even in the daytime I think it when he is breathless. does anyone else feel frightened like me?
 

huggie

New member
Apr 29, 2019
8
0
Hello,

Has anyone been looking after a loved one at home until they pass away?

We are a family looking after our Mum at home as she never wanted to go into a care home. We are under palliative care, but they are not involved too much yet.

Mum has a UTI and should be taking antibiotics but she is refusing and she is drinking little, we don't think is worth putting her in hospital as she had been in several times now and we don't want to put her through it and she will be the same in hospital, she will not drink and they probably will not give fluids anymore, she has blind since Feb and is bed bound.

I feel in despair as she is so agressive when I try to give her a drink or medicine she tells me to f off and go away. Its hard to know at which stage do you let go and give up or do you keep trying and get the same answer, sometimes we have a small window of oppertuinity to give her a drink or her medicine but its not enough, my Mum was a tubby lady but now she is losing weight. The palliative care nurse did say that when she stopped eating that she is ok and she will not feel hungry but she looks so dry as she is starting to drink less and we are all getting upset. The pallaitive care nurse in coming to speak to us Tuesday.

Has anyone out there had their love one die at home and was it OK?, I am finding it so hard to let her go and give up making her drink if she does not want too.

Mum had frontal lobe dementia and can be agressive which makes it hard too. She is not eating had not eaten for about 8 weeks, living on Milk, tea and high cal drinks, but this last couple of days she has probably only had a litre of fluids, mostly tea and water. She is sleeping a lot too.

Thanks for reading



Dear Doggie86,
I completely feel for you. We are in a similar position to you only with my dad. We are caring for him at home. I think we are slightly ahead though as my dad is hardly drinking or taking in any food. No medication is being given by mouth as he cant swallow properly anymore. We are under the palliative care team and they are now coming in every day with the district nurse to give him extra pain meds. Looks like from next week he will be on a diver for meds. He has morphine pain patches but as hes fully bed bound and has been for 6 months, he is in a fair bit of pain/discomfort. I don't quite know how I feel at the moment. I am an only child but have an amazing husband and children. In someways I think that when the end comes it will be a relief for him and us. Its so hard just watching them get worse in front of you. On the other hand I don't want him to go. I haven't been able to cry yet as I feel he needs me to be strong for him now. I guess my time will come after the event. The only words of comfort I cam say to you is that you are following what she wants by looking after her at home. That's a gift and a show of pure love. I have a feeling that my dad wont be with us for too much longer as once he stops taking any fluid in then the body can only survive for a short time. He hasn't had much to drink in the last 24 hours, just couple of sips. He has slept the rest of the time and fair play to him he has been no trouble. sending you strength. Huggie
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,001
0
72
Dundee
My mum was with us at home when she died. She was on end of life medication and was given a syringe driver towards the end. I can't say it was easy, because it wasn't. I will say, however, that we had marvellous support from our GP practice and the district nurse service. The district nurses came in to wash and turn her and in fact it was one of them who said to me that she thought that it was imminent and mum died earl the next morning. The GP talked to me and my brother about a syringe driver and he made sure that we knew that we were heading to the end with mum. As well as the syringe driver we were given a 'just in case' box. This contained medicines which might be required to manage 'predictable and distressing symptoms'. This meant that they were available without having to get a prescription for them. The nurses who came in had access to these and could use them if necessary.

@Shedrech has given the link for the Marie Cure nursing service. We had some night sits from Marie Cure nurses and these were invaluable. Mum was in a lot of distress even though she had the syringe driver. Having the nurse sits meant that we could get some sleep. The GP and district nurse service sorted these out for us. One of the Marie Cure nurses gave us an 'end of life' booklet to read. I found it very helpful in terms of what to expect as the end drew near. This is the link to the booklet.I hope you don't find it too distressing. I found it very helpful. Of course it is not specific to dementia but from Page 19 I found the information useful.
https://www.mariecurie.org.uk/globa...hat-to-expect-at-the-end-of-someones-life.pdf

Thinking of you and wishing you strength. Wishing your mum peace.
 

AliceA

Registered User
May 27, 2016
2,911
0
My friend had a brain tumour, she died at home with the support of nurses. For the family it was hard but at the same time comforting. It helped with the grieving process. She is still missed.