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Advice needed, end of life, very agitated mother.

SunflowerLou2

New member
Aug 5, 2020
1
This is my first post as a new member, my mother has vascular dementia. My mother lived with me for over a year before insisting on going into a residential home because she didn't want to be a burdern. It certainly wasn't easy but my mother was very sweet and thanked me every day for looking after her. As much as I told her that she could never be a burden in the end I realised it was playing on her mind and I found a wonderful care home nearby. My mother settled in quickly although did often forget why she was there and I could tell her again that she had requested it but that she could come back to be with me if she so wished. As the year progressed and my mother's health declined I realised that we had made the right decision because her care needs were becoming more than I could probably cope with. It saddened me that after moving her her memory worsened dramatically and I realised that I had been her memory and my constant daily reminders had masked much of her actual ability. I visited at least every 3 days and was able to alert the home of things that they may have missed which they appreciated and put right. I accepted that she would never receive the one to one care that I had given but the staff were very caring and respectful. Lockdown has been awful and my mother had a big TIA at Easter and obviously I wasn't allowed to go. Her decline was evident from the updates I received from nurses and my phone calls to her became harder as she seemed to find it so much harder to follow the conversation or communicate. I managed 3 social distanced visits which highlighted how much the separation and the TIA had impacted. On Friday she had another TIA and on Saturday i was allowed to visit her in her room sadly she can no longer swallow. I had to point out to staff that she was clearly in pain because I could see it in her face and the way she was repeatedly rubbing her side and she cried out when they moved her. When they couldn't get her to swallow liquid paracemol they thankfully made the decision for the GP to be called who agreed it was end of life and so she now has the medication needed. My time is limited because unbeknown to me I am only allowed 3 hours and they pointed this out to me and the fact that I had already used some of that time. I was able to visit for 30 minutes yesterday and this is my question my mother who hadn't been able to speak since Friday kept saying to me help me, help me, help meeeee!. This was extremely distressing, one member of staff said to me oh yes she does that, that's her thing but the other staff, nurses and manager couldn't understand it and said she had been really calmed since my last visit, they wondered if she was trying to communicate something to me. After asking her if she was in pain, or needed anything to no avail, I kept reassuring her and telling her that everything was fine, she didn't need to worry about telling me anything because I remembered everything she had every asked me to do for the future, that everyone loved her , that she was safe etc. The nurse gave her some of the relaxant and that calmed her down and they allowed me to stay until she fell asleep but it has really upset me. A friend has told me that this is common in people with dementia and they get very restless and anxious. I worry that I am missing something and letting her down in some way. I really wish I could just stay with her. Any guidance greatly received, thank you.
 
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Weasell

Registered User
Oct 21, 2019
664
You have my sympathy.
Does she have a syringe driver fitted?
we allowed unlimited visiting to two family members, who’s relative passed away two weeks ago so it must be the homes policy?
I am do not know enough to give more info, hopefully others will be along soon and give you some good advice.
 

Sarasa

Registered User
Apr 13, 2018
1,836
Sorry you've had to find Dementia Talking Point at such a sad time. Your mother sounds lovely, and so wise to insist that she moved to a care home. I would query the homes policy of only allowing you three hours. That might be a sensible policy if your mother was not so ill. At the moment when she appears to be at the end of life I would have thought they would not be enforcing such restrictions.
As my dear mother in law always says don't forget to look after you.
 
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canary

Registered User
Feb 25, 2014
13,646
South coast
My mum passed away from dementia 3 years ago and I will always remember it.

Agitation at the end of life is quite common. As @Weasell says - is she on a syringe driver? This will make sure that she is not in pain as it delivers a constant small amount of drugs via a small needle just under the skin. If she is not on a syringe driver I would talk to the GP who put her on End of Life care.

Mum was terribly agitated for a day or two before she passed away, kicking off all her bedding and trying to remove her clothes, but this stage passed and eventually she was calm and peaceful.

((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))). This is a difficult stage when you feel in limbo. When you visit, make sure you say all the important things - I love you, thank you, forgive me. You might take in a radio or player and see if the home would be willing to have her favourite music playing, or the radio on, so that she does not feel alone.
 
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nita

Registered User
Dec 30, 2011
1,935
Essex
My mother had an end-of-life pack with 3 medications. One of them was midazolam which is a sedative to calm any agitation. I think it can be common at the end stage, even in people without dementia. There was also oxycodone for pain relief and cyclizine for anti-sickenss possibly caused by the painkiller.

My mum (and I) were so fortunate in that she didn't need this at the end - she died naturally in her sleep.

She had MacMillan nurses and I think, once we had the emergency pack, it could have been administered by a district nurse (she was living at home with me). In a care home (is it a nursing home?) I think they can also get hold of specialist palliative care nurses. I would ask for this to make sure she is comfortable. That is supposed to be the aim of end-of-life care as it is horrible for her to be in a distressed state.

I hope she and you can get some relief from this sad stage.
 

SunflowerLou

Registered User
Mar 22, 2019
10
My mum passed away from dementia 3 years ago and I will always remember it.

Agitation at the end of life is quite common. As @Weasell says - is she on a syringe driver? This will make sure that she is not in pain as it delivers a constant small amount of drugs via a small needle just under the skin. If she is not on a syringe driver I would talk to the GP who put her on End of Life care.

Mum was terribly agitated for a day or two before she passed away, kicking off all her bedding and trying to remove her clothes, but this stage passed and eventually she was calm and peaceful.

((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))). This is a difficult stage when you feel in limbo. When you visit, make sure you say all the important things - I love you, thank you, forgive me. You might take in a radio or player and see if the home would be willing to have her favourite music playing, or the radio on, so that she does not feel alone.
Thank you, she wasn't on a syringe driver but they were talking about it yesterday. My sister was allowed 30 minutes today (from the three hours because only one person is allowed) and thankfully my mother was sleeping peacefully. I am hoping to be allowed to go tomorrow the nurse thinks because she has had no fluids since Saturday it will probably be next Saturday but so hard to know and I want to eek out my time to be with her as much as possible.
 
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SunflowerLou

Registered User
Mar 22, 2019
10
You have my sympathy.
Does she have a syringe driver fitted?
we allowed unlimited visiting to two family members, who’s relative passed away two weeks ago so it must be the homes policy?
I am do not know enough to give more info, hopefully others will be along soon and give you some good advice.
I wish we were allowed unlimited visiting, I hate the limitations, I just want to be by her side. Thank you for your sympathy.
 

SunflowerLou

Registered User
Mar 22, 2019
10
My mother had an end-of-life pack with 3 medications. One of them was midazolam which is a sedative to calm any agitation. I think it can be common at the end stage, even in people without dementia. There was also oxycodone for pain relief and cyclizine for anti-sickenss possibly caused by the painkiller.

My mum (and I) were so fortunate in that she didn't need this at the end - she died naturally in her sleep.

She had MacMillan nurses and I think, once we had the emergency pack, it could have been administered by a district nurse (she was living at home with me). In a care home (is it a nursing home?) I think they can also get hold of specialist palliative care nurses. I would ask for this to make sure she is comfortable. That is supposed to be the aim of end-of-life care as it is horrible for her to be in a distressed state.

I hope she and you can get some relief from this sad stage.
Yes she is on midazolam and morphine if she needs it and anti sickness, my sister had 30 minutes with her today and she was calmer so hopefully they will allow me 30 minutes tomorrow as that will leave 1 1/2 to be with her at the end. It would be nice to see her at peace. I feel very helpless not being there. Thank you for your support.
 

May30

Registered User
Feb 25, 2017
48
My dad passed away in April during the peak. I was able to see him for 2 hours before he died. It was hard as his nursing home was really understaffed and there were fewer carers and nurses on duty and the GP was only doing consultations over the phone. After seeing dad I just needed to know that he was being made comfortable and that he was pain free. That was most important to me. I said everything that I wanted to say during the time I was with him. It was hard not being able to be there more but I try to take comfort in the fact that I got the chance to say what I needed to say to him before he left. Thinking of you.
 

nita

Registered User
Dec 30, 2011
1,935
Essex
The three-hour rule is really hard. It should be 3 hours a day at least. I wonder why they are insisting on this - do you wear a mask and take all the precautions? It seems unfair as the rules have been relaxed in many areas. Sorry, perhaps you live in one of the areas where they are imposing tougher restrictions. I am really sorry but hope you feel reassured by what your sister has told you and have a good visit tomorrow, finding your mother peaceful.
 

Firecatcher

Registered User
Jan 6, 2020
53
I’m really sorry your having to deal with what seem callous and inhumane rules at such a difficult time. Could you ask to speak to the manager of the home and explain that they are making a distressing time even more distressing.
 

SunflowerLou

Registered User
Mar 22, 2019
10
My dad passed away in April during the peak. I was able to see him for 2 hours before he died. It was hard as his nursing home was really understaffed and there were fewer carers and nurses on duty and the GP was only doing consultations over the phone. After seeing dad I just needed to know that he was being made comfortable and that he was pain free. That was most important to me. I said everything that I wanted to say during the time I was with him. It was hard not being able to be there more but I try to take comfort in the fact that I got the chance to say what I needed to say to him before he left. Thinking of you.
sorry to hear about your dad, but you are right. I have told her everything it is just a shame that she was so distressed at the time, I am hoping to go briefly tomorrow to at least see her when she is sleeping or calm.
 

SunflowerLou

Registered User
Mar 22, 2019
10
The three-hour rule is really hard. It should be 3 hours a day at least. I wonder why they are insisting on this - do you wear a mask and take all the precautions? It seems unfair as the rules have been relaxed in many areas. Sorry, perhaps you live in one of the areas where they are imposing tougher restrictions. I am really sorry but hope you feel reassured by what your sister has told you and have a good visit tomorrow, finding your mother peaceful.
Yes, I have to wear full PPE and no my area has had very low cases of the virus even in the peak and the home has had no cases whatsoever. I think it is the head office of the group that seem not to be using any common sense per situation. Thank you for your sympathy
 

SunflowerLou

Registered User
Mar 22, 2019
10
I’m really sorry your having to deal with what seem callous and inhumane rules at such a difficult time. Could you ask to speak to the manager of the home and explain that they are making a distressing time even more distressing.
Yes, I have spoken to the manager and she has requested more time for me from head office but currently no change to their rules. I explained that I only have one mother and won't her very much longer she only has days/hours to live. Anyhow just relieved that I am going there today while she is hopefully aware of my presence. Thanks for your sympathy.
 

Weasell

Registered User
Oct 21, 2019
664
it may be an idea to enquire about the progress of the syringe driver?
My thoughts are with you at such a difficult time.
 

Firecatcher

Registered User
Jan 6, 2020
53
Yes, I have spoken to the manager and she has requested more time for me from head office but currently no change to their rules. I explained that I only have one mother and won't her very much longer she only has days/hours to live. Anyhow just relieved that I am going there today while she is hopefully aware of my presence. Thanks for your sympathy.
So sorry - thus must be absolutely heartbreaking.
 

SunflowerLou

Registered User
Mar 22, 2019
10
I thought you would like to know that my mother passed away peacefully on Saturday morning. The medication given prevented any more anxiety, I had been allowed to visit the day before and was going to be going again on Saturday morning when they rang to let me know that she had already gone. I had said everything I wanted to and sad though I was not be by her side at least I was able to tell her how much I loved her. When I visited in the morning with my husband I was filled with dread but it was actually a huge relief because she finally looked at peace, beautiful and serene no more anxiety. It just highlighted how much the disease had tormented her looking at her like her face so calm. The CH had put flowers on her pillow and placed her rosary around her neck. Very sad to say goodbye but so pleased that she is finally released from her dementia.
 

canary

Registered User
Feb 25, 2014
13,646
South coast
(((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))

Im sorry to hear your news, but glad she didnt linger long and you managed to say everything that you needed to say.
Look after yourself now
xx
 

Sarasa

Registered User
Apr 13, 2018
1,836
Sorry to hear your news @SunflowerLou , but glad you managed to say all you needed to your mother and that she is now at peace. Look after you.