End stages, admitted to hospital, advice needed

Tango23

Registered User
Nov 15, 2016
10
0
Hi there,

My aunt is in what I believe to be the end stages of Alzheimer's. She was diagnosed approx 3 years ago and moved to a care home 2 years ago.

Recently, she has suffered from recurrent UTI's that oral antibiotics didn't touch. In the last three weeks, she has become extremely weak and is no longer at all mobile, being either chair or bed bound. She also now has double incontinence and is extremely tired,all of the time. Last week, she had little appetite or thirst and she was admitted to the hospital.

She was treated with IV antibiotics and fluids as she was very dehydrated. The UTI has now cleared, but she refuses to eat and drink and has become extremely disconnected from her environment, and her loved one and is experiencing night hallucinations.

She has not eaten more than a few bites in 6 days - and nothing at all to eat or drink in 4 days - and she does not understand when we try to offer her food or drink, this has got 10x worse since her admittance to hospital.

I am worried that she may be kept in as she is not seen as strong enough to go back to her care home, but feel that she will now neger be strong enough. I was wondering if anyone has had a similar situation and what they have done?

We are going to look into palliative care, but unsure if this could be the form of outpatient at her home or at a hospice. If the Dr's don't agree to discharge her, has anyone done so against their wishes? I don't want to see her end her days in a busy hospital ward with machines beeping when she could be in familiar surroundings with people who love her. Ultimately, this is not my decision to make, but I hope to be able to provide experiences of others to my aunt's next of kin in order to give them the support and answers they need.

Thank you all so much in advance and this horrendously sad time in our families lives,

t23
 

Red66

Registered User
Feb 29, 2016
362
0
Hi Tango23 I am so sorry and saddened to read your post. My Dad passed in August, he had recurrent chest infections and aspiration pneumonia. In the end it was decided he would not be sent to hospital, the last time he was sent he was returned to the EMI nursing home to live out his final days. He died about a month later with the last 12 days refusing food and only the odd spoon of thickened fluid. He was just over 5 stone. My Mum and I met with the Consultant in the nursing home and they agreed that it was unfair to keep pumping him with Iv fluids and antibiotics as they were no longer promoting the quality of life. A hard discussion to have that's for sure.

I do hope as a family the right decision is met, it is so so hard. I feel for you. Red xx
 

snowygirl

Registered User
Jan 9, 2014
151
0
Hi Tango23

I feel my family and I are in a similar position with my mum being in hospital for 8 weeks and up until yesterday we were seeking a nursing care home for her. In just 24 hrs that has all gone wrong as her heart has been failing and her lungs full of fluid and she is no longer 'stable' so cannot be discharged to a nursing home. I cannot bear for her to end her days in the hospital or to continue to have this circle of events but where do we go from here? what happens next to someone unable to go into care as they are too poorly but not getting any better in hospital. I feel for you I really do and I hope that someone can answer your question and help me at the same time. It really is a horrible time for all concerned.
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Tango23 I am so sorry and saddened to read your post. My Dad passed in August, he had recurrent chest infections and aspiration pneumonia. In the end it was decided he would not be sent to hospital, the last time he was sent he was returned to the EMI nursing home to live out his final days. He died about a month later with the last 12 days refusing food and only the odd spoon of thickened fluid. He was just over 5 stone. My Mum and I met with the Consultant in the nursing home and they agreed that it was unfair to keep pumping him with Iv fluids and antibiotics as they were no longer promoting the quality of life. A hard discussion to have that's for sure.

I do hope as a family the right decision is met, it is so so hard. I feel for you. Red xx

Hi Red,

Thank you for your response, and I am so sorry for the loss of your Dad.

I feel like we need to have this type of conversation tomorrow, although I can imagine it being one of the hardest things imaginable to discuss. I'm just not sure who we need to speak to at the hospital? I totally believe in quality of life over length and pray that all involved come to the same conclusions.

Thank you for taking the time to reply x
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Tango23

I feel my family and I are in a similar position with my mum being in hospital for 8 weeks and up until yesterday we were seeking a nursing care home for her. In just 24 hrs that has all gone wrong as her heart has been failing and her lungs full of fluid and she is no longer 'stable' so cannot be discharged to a nursing home. I cannot bear for her to end her days in the hospital or to continue to have this circle of events but where do we go from here? what happens next to someone unable to go into care as they are too poorly but not getting any better in hospital. I feel for you I really do and I hope that someone can answer your question and help me at the same time. It really is a horrible time for all concerned.

I'm so sorry to read about your Mum, snowygirl.

Your situation has confirmed that my concerns are real. Have the hospital been able to offer you a move to a hospice type ward at all? Or special palliative care for your Mum? Or are you still on a main ward? I really do hope that you manage to get her stable and most importantly, comfortable. Thoughts are with you x
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
In March of this year my husband was admitted to hospital with aspiration pneumonia, he was already being treated for heart failure and aneurisms in his lungs.

After talking with the doctor in charge of his hospital treatment and knowing that medical intervention was useless he arranged arranged for my husband to return to his nursing home. He arranged for the local hospice to provide nurse to help the nursing staff and our family to manage end of life care. We had the medication to make him comfortable and pain free. He arrived at his nursing home at around 11pm where he was washed and changed into his Pyjamas by our daughter and granddaughter and made comfortable. We sat with him and just before 1.30am he passed away peacefully with his family with him. No medication was needed.

We were very thankful for the doctor in hospital making sure our wishes were carried out and the nursing home night staff helping us to make it as good as we could

We thought it was only going to be days not weeks but I am sure the doctor knew it was hours and he worked hard to get my husband back to his nursing home.

I hope that your wishes are taken into account and you get the care where you want it to be, it really does make a difference and made our experience one we will remember with sadness but also calmness and acceptance because it was what we wanted.

Take care
 

HUG

Registered User
Nov 28, 2015
17
0
Tango 23

Sorry to read your post my mum was in hospital last September after have a chest infection. Mum wouldn't take food and drink from the nurses let's face it they are strangers to the person with Alzheimer's.

Is there a person in the care home that regular gives the meals? Could they come and visit and give it a try. Provide they are awake have you tried Capri Sun pouch drinks with a standard drink instead of the tiny straw that comes with the drink. My mum loves them as she doesn't have to suck as you can squeeze the pouch gently to get it into the mouth. The food times in hospital was not right for my mum so I brought her breakfast in with me each morning and fed her myself. The main meal type c puréed was too thick do I took extra gravy in to water it down and I must admit give it some taste!

Hope the above helps




Sent from my iPad using Talking Point
 

Tango23

Registered User
Nov 15, 2016
10
0
Jaymor,

Thank you for sharing your experience. I'm so glad that you had a supportive Dr who worked to take all of your considerations into account. I can't imagine how hard those final hours with your husband must have been, but knowing you were in a familiar and loving surrounding with dignity until the end I hope bought you some comfort. That's all we want for our Aunt also. I hope we receive the same support x
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Hug,

Thank you so much for your suggestions. I will pick up some Capri Sun and Ribena cartons on the way in tomorrow...the last time I saw her drink was on Froday where she downed a cup of coffee, but she hasn't touched a drop of anything since. This definitely sounds like something we should give a go.

Unfortunately, she won't even touch her favorite biscuits or sweets at the moment, but if we can get her to sip a sweet drink, it might make her mouth better on the whole as imagine she must have a horrible taste at the moment.

Thank you, we'll definitely try this. We did speak to the care home as, but unfortunately they are short staffed and unable to send anyone in to try. To be honest, I don't know if it will make a difference.

I hope your mum is comfortable x
 

Emmy_83

Registered User
Mar 8, 2014
72
0
Yorkshire
Re:

Hi Tango

My dad was in hospital for five weeks, 10 days of which he was provided with end of life care before he passed away peacefully last Friday.

My mum had been insistent that he be brought home to die but the doctors advised us he may not make the journey home in the ambulance as he was so weak. They said we could still take him if we wanted but that was the risk.

We decided to leave him in hospital but stayed with him every night. He knew we were there and the staff were excellent and gave him a private room. We couldn't have asked for more from all the staff who ensured all our questions and worries were answered and that he was well cared for, clean and comfortable until the end and were just outside the door 24/7. We had been unsure but it turned out to be the best choice we think in my dad's case. We have no regrets.

Xx
 

snowygirl

Registered User
Jan 9, 2014
151
0
I'm so sorry to read about your Mum, snowygirl.

Your situation has confirmed that my concerns are real. Have the hospital been able to offer you a move to a hospice type ward at all? Or special palliative care for your Mum? Or are you still on a main ward? I really do hope that you manage to get her stable and most importantly, comfortable. Thoughts are with you x

Hello Tango23

I found out late this afternoon that my mum is now in 'end of life care' in the hospital as there is nothing else that can be done for her. I am going to see her tomorrow as I cannot get there this evening. My brother is with her now but we do not know how long we are looking at. I have been told that there is no intention of moving her from the hospital and that there is no room available elsewhere. I'm still in a state of shock really as I thought I was ready for this after 8 weeks but I'm obviously not. When I'm there tomorrow I will try to ask about moving her but I'm wondering if maybe she's too frail now. At least in the hospital she is by the window and we will at least have that space to ourselves and the sun can shine in if its willing. I wish you well.
 

HUG

Registered User
Nov 28, 2015
17
0
Hi Tango23

Must ask did the Capri sun help at all?


Sent from my iPad using Talking Point
 

willow4Sam

Registered User
Oct 12, 2010
26
0
Norfolk
Hi Tango23

I am so sorry to hear about your aunt and overwhelmed because your situation is almost identical to mine. I came online to see if there were any threads about refusing food and drink and when I read your post I was so saddened that this appears to be such a common problem and yet no-one seems to have done anything about it.

I would love to be able to offer words of advice, but I am in a state of shock and anxiety myself at this point. My mother is in a residential home (who are not set up for nursing care) but we felt it best as she has always been terrified of being 'locked in' anywhere. She has been there for over 4 years and her Alzheimer's is now advanced but she has done okay until last week. She had a fall and against my advice and wishes the Home sent her to A&E and she became a completely different person after being there for 8 hours. We watched as she became increasingly confused and belligerent and tried to get the doctors to treat her and send her home quickly but they wouldn't with the result that she is now completely aggressive, hostile and unco-operative. She won't eat or drink, let anyone near her or allow me to touch her. The Home are saying she should go to hospital but I know she wouldn't have wanted that and I don't want her to die on a hospital ward. If anyone knows of any way to get her some decent end of life care I would be really grateful. I haven't had any help or advice from the Home, her surgery, the mental health team or the hospital. None of them seems to care and despite endless phone calls, letters and pleas for help, none is forthcoming.

I do so hope you find a solution for your aunt and you are able to get some comfort in this most difficult and heart breaking of times. My thoughts are with you.
 

Tango23

Registered User
Nov 15, 2016
10
0
Update

Hi all,

Sorry for the radio silence, it's been a very busy couple of weeks.

So, working with the hospital and my Aunt's care home, we were able to get her moved back to her room at the home where she currently is.

Since being back, it's been a mixed bag...the very next day she 'woke up', was laughing and talking, enjoying our company and got her eating and drinking, she was like this for a couple of hours so it was great to spend some quality time with her.

Unfortunately, it may have been a one off and she is now back to sleeping the majority of the time and is also very anxious and upset when she is awake. She struggles to communicate and we can tell she wants to say something, but she can't get the words out and there is a lot of repetition or certain sounds and words which can be distressing. She is very frail. We are able to get liquids into her...by syringe! An idea from the care home and it is enabling us to at least keep her mouth more comfortable and hopefully prevent any ulcers, I don't now how we didn't think of it before, it seems so simple now. We have also found that we can get her to eat small quantities of very sweet foods...for example, a couple of spoonful's of chocolate mouse.

Thank you for all of your support and suggestions and I'll go back with answers to those who have asked specific questions now.

Thank you, all.
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Tango23

I am so sorry to hear about your aunt and overwhelmed because your situation is almost identical to mine. I came online to see if there were any threads about refusing food and drink and when I read your post I was so saddened that this appears to be such a common problem and yet no-one seems to have done anything about it.

I would love to be able to offer words of advice, but I am in a state of shock and anxiety myself at this point. My mother is in a residential home (who are not set up for nursing care) but we felt it best as she has always been terrified of being 'locked in' anywhere. She has been there for over 4 years and her Alzheimer's is now advanced but she has done okay until last week. She had a fall and against my advice and wishes the Home sent her to A&E and she became a completely different person after being there for 8 hours. We watched as she became increasingly confused and belligerent and tried to get the doctors to treat her and send her home quickly but they wouldn't with the result that she is now completely aggressive, hostile and unco-operative. She won't eat or drink, let anyone near her or allow me to touch her. The Home are saying she should go to hospital but I know she wouldn't have wanted that and I don't want her to die on a hospital ward. If anyone knows of any way to get her some decent end of life care I would be really grateful. I haven't had any help or advice from the Home, her surgery, the mental health team or the hospital. None of them seems to care and despite endless phone calls, letters and pleas for help, none is forthcoming.

I do so hope you find a solution for your aunt and you are able to get some comfort in this most difficult and heart breaking of times. My thoughts are with you.

Hi Willow4Sam,

I'm so sorry to hear you're also going through this, thoughts are with you.

I contacted our local Alzheimers Organisation office who were brilliant and got in contact with a local hospice on our behalf. They can provide palliative care at home or at a care home as is required, something we weren't aware of, and completely understood our wishes for her not to end her days in hospital. Our hospital is always 'black listed' and understaffed meaning that although they do their best it was not the right place for her at all and she was just sitting in her bed, fading away.

We have not had to use the hospice's palliative care team as the care home has a hospice team of its own that it works with, but it's not something I would have thought of it if wasn't for their suggestion. Would this work for you? I'll see if I can find the list I used to find out how to contact and will share it on here for you.

Also, we found that using a syringe has allowed us to get liquids in as and when she wants them, even when her body isn't actively allowing her to take them down herself. This is providing relief from the dehydration that she was experiencing. It s not forced on her, only tried and then given if she enjoys it. We've been doing the same with sweet coffee with full fat milk, too, which she seems to enjoy.

I do hope that some of these suggestions help your situation :(
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Tango23

Must ask did the Capri sun help at all?


Sent from my iPad using Talking Point

Hi HUG,

Unfortunately, when we tried she was at the point where she did not want anything at all. Since getting her home, we tried a syringe which has allowed us to get some fluids into her and would work the same as gently squeezing the Capri Sun pouch, so thank you for suggestion. Brainstorming with the care home and suggestions received helped us come up with something that is working for her. Hopefully, others will also read this post and it may just help someone else get much-needed liquids into their loved one.

Thank you x
 

Tango23

Registered User
Nov 15, 2016
10
0
Contact details

Hi Willow4Sam,

If you go to the Alzheimers Org website, click Local Information and scroll to the bottom of the page, it will say Further Information - Find your local office - this is what i did to contact ours, explaining our situation. They in turn contacted our local hospice on our behalf and provided contact details etc. They were really kind and supportive and may be able to help you too. Thoughts are with you x
 

Tango23

Registered User
Nov 15, 2016
10
0
Hi Tango

My dad was in hospital for five weeks, 10 days of which he was provided with end of life care before he passed away peacefully last Friday.

My mum had been insistent that he be brought home to die but the doctors advised us he may not make the journey home in the ambulance as he was so weak. They said we could still take him if we wanted but that was the risk.

We decided to leave him in hospital but stayed with him every night. He knew we were there and the staff were excellent and gave him a private room. We couldn't have asked for more from all the staff who ensured all our questions and worries were answered and that he was well cared for, clean and comfortable until the end and were just outside the door 24/7. We had been unsure but it turned out to be the best choice we think in my dad's case. We have no regrets.

Xx

So sorry to read this, Emmy. But so glad that you were all able to spend time with him, and that he was so peaceful and comfortable till the end. As long as we do what we can to show that they are loved and safe, that's all we can do. It sounds like you made exactly the right decision for him x x.
 

willow4Sam

Registered User
Oct 12, 2010
26
0
Norfolk
Hi Willow4Sam,

If you go to the Alzheimers Org website, click Local Information and scroll to the bottom of the page, it will say Further Information - Find your local office - this is what i did to contact ours, explaining our situation. They in turn contacted our local hospice on our behalf and provided contact details etc. They were really kind and supportive and may be able to help you too. Thoughts are with you x

Hi Tango23

Sorry for the delay in getting back to you. I have had quite a few ups and downs with my Mum but am glad to say that she is on the mend and responding well to the antibiotics and is now eating and drinking again. However, this has really heightened my awareness of the preparations I need to make and so thank you so much for your extremely kind and helpful reply. I will investigate further and if I can get some hospice palliative care in place that would be marvellous. My best wishes to you for your situation and as ever with everyone on the forum my thoughts are with you. xx