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Might well becoming a regular on this forum so thought I would say hi.

Max68

Registered User
Aug 21, 2018
83
Sussex
Pleased the tears have stopped, yours or hers by the way?
My Dads favourite tune - always look on the bright side of life.
I’m rubbish at whistling but attempt it anyway. The words are very apt ....


Both!!!! I know a few lyrics that might describe dementia but none of them are printable on here!!! ;)
 

Max68

Registered User
Aug 21, 2018
83
Sussex
My sister doesn't think mum will be coming out of hospital, it's heart-breaking. Was in a dreadful state today by all accounts when my sister went in. Took a sip of water and projectile vomited everywhere which begs the question why she isn't placed in a room on her own whilst they find out what's causing it. Nurses didn't seem to know what's going on (I'm sure we have been there before!!). Test results are days late, no-one seems to know what's casing the V and D, the nurse was concerned about mum's skin but couldn't find the words to explain why, and Doctor's seem too few and far between,. My sister said trying to get information is like getting blood out of a stone. Why isn't it like the telly when nice old Charlie Fairhead will sit relatives down in a room and explains exactly what's going on?!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
My sister doesn't think mum will be coming out of hospital, it's heart-breaking. Was in a dreadful state today by all accounts when my sister went in. Took a sip of water and projectile vomited everywhere which begs the question why she isn't placed in a room on her own whilst they find out what's causing it. Nurses didn't seem to know what's going on (I'm sure we have been there before!!). Test results are days late, no-one seems to know what's casing the V and D, the nurse was concerned about mum's skin but couldn't find the words to explain why, and Doctor's seem too few and far between,. My sister said trying to get information is like getting blood out of a stone. Why isn't it like the telly when nice old Charlie Fairhead will sit relatives down in a room and explains exactly what's going on?!
So when Mum was in hospital we had a meeting care - care plan & Discharge; totally different I’m aware for you folks ~ but ask to see the lead consultant if possible, & there should also be a discharge nurse who is able to co ordinate health care etc. I know you aren’t looking for discharge but the discharge team co ordinates beds & seems to be the best informed as to the reality of what’s going on as they liase with consultants, social services, GP, OT & Community Nurse.
Hope this helps a bit.
I also rang & emailed this team & they were the best informed to prognosis etc - long distance carer!
 

Max68

Registered User
Aug 21, 2018
83
Sussex
Thanks DOD. Called in yesterday and saw mum's consultant who is a wonderful guy. Mum was being moved to an isolated ward as she was having D and V again so they now need to assess whether that the drugs causing it or something else. Her potassium has stabilised but she is now low on sodium so they are trying to find out what's causing the electrolyte imbalance. On top of that she is on meds for a slight infection around the heart and in the lungs so they are trying to knock the possibility of pneumonia on the head. He said mum is "stable" and they are trying to keep her from deteriorating. Mum has no strength whatsoever and I rather painfully watched three of them try and get mum from chair to bed yesterday, it's awful really but it is what it is as you can't do anything to help her.

I then rang mum's solicitor because it suddenly occurred to me that there are certain wishes about medical treatment etc in her Health and Welfare LPA. Extremely grey area but the solicitor said in her opinion quite rightly that Doctors are trying to treat infections right now rather than performing life saving treatment but if for instance mum deteriorated the hospital need to know about the LPA so I have informed them. So difficult as they are trying to help her but all it will do is put her back in the care home with a potential drop in her baseline and a lower quality of life. It really is a drain on you mentally with a tug of war in your mind going on on what is "best" for her. She is tough and knowing her she will pull through this time but at what cost to her "quality of life?" Dreadful disease.
 

Sirena

Registered User
Feb 27, 2018
2,294
Sorry to hear about what is happening, @Max68
I agree with you, the doctors are doing their best, but they are potentially just saving her to continue with a lower quality of life. As you say, you just have to let it happen, you have little control over the situation. I too would have very mixed feelings about this. It's hard to know what to hope for, isn't it.
 

Max68

Registered User
Aug 21, 2018
83
Sussex
It is indeed Sirena. Your natural human reaction is for your family to be with you always and the slightest thought of "I wish she just went quickly and peacefully" fills me with guilt but at the same time I know for a fact mum wouldn't want her to be like this, it's an awful situation so many of us obviously live with.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
It is indeed Sirena. Your natural human reaction is for your family to be with you always and the slightest thought of "I wish she just went quickly and peacefully" fills me with guilt but at the same time I know for a fact mum wouldn't want her to be like this, it's an awful situation so many of us obviously live with.
The hospital should have done a TEP plan, treatment escalation plan. Ask if you can see it, I didn’t know anything about this until discharge a copy came home with Mum. Bit of a shock but hey it was another piece of the jigsaw .Capacity to understand is an area I don’t even begin to comprehend but the rules & regulations Doctors etc abide by are always “ in the patients best interest”. That can overrule the patients wishes, it’s a complicated thing I kinda bob around the edges of understanding- to do with outcome etc.

Please don’t feel guilty a dignified death isn’t a selfish thing to wish for a loved one.
It’s what we all wish....

Take care
(((Hugs)))
 

Max68

Registered User
Aug 21, 2018
83
Sussex
Thanks all. Mum was a tad more bright today my sister says but I think she is a bit in denial of how poorly mum is, unless that's me!! Mum keeps bringing up food and today they tried her on jelly but everything she takes she can't keep down and just doesn't want to eat. That's not good as no food, less strength, the list goes on. I don't know how she keeps battling on but she is one tough old bird, in the nicest sense of the phrase !
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Thanks all. Mum was a tad more bright today my sister says but I think she is a bit in denial of how poorly mum is, unless that's me!! Mum keeps bringing up food and today they tried her on jelly but everything she takes she can't keep down and just doesn't want to eat. That's not good as no food, less strength, the list goes on. I don't know how she keeps battling on but she is one tough old bird, in the nicest sense of the phrase !
I think that the human body is a thing of wonder, it prepares itself for what it needs. I hope that your Mum is more peaceful soon, v & d are awful especially when frail.
 

Max68

Registered User
Aug 21, 2018
83
Sussex
Hi all, just an update. Mum was discharged back from hospital to the care home last Tuesday and it has been pretty rough. Immobile, incoherent, relying on help for all personal care and feeding, it's a pretty weird experience feeding your own mother!

Today was a little better, she had just seen a physio and had been bathed and had her nails done and was enjoying a coffee and some chocolate. Managed a joke with her that her birthday was coming up soon and suggested a car day at Brands Hatch (black humour obviously). She smiled and said "as long as it's in Concorde" (she designed Concord's windows back in the day)

So all good'ish,,,,,not! As we were leaving the Nurse said that the GP had just phoned and stated that mum's bloods had come back and she was showing kidney failure (probably the cause of the electrolyte imbalance) and he wanted to rush her back to hospital. We then sat down with the Nurse and Care Home Manager to discuss mums wishes as laid out in the Lasting Power of Attorney. We then spoke to the GP and it has been decided that it would be better for mum to just receive palliative care at the care home rather than send her back to hospital where she always deteriorates. They obviously can't cure it, just possibly control it, and it became evident that she would just be going to and fro hospital with a dementia drop each time. Everyone seems to agree and it is in black and white in the LPA but my sister and I almost feel like we have just signed her death warrant but at the same time don't want to see her suffer anymore.

Not sure on the prognosis of kidney failure but I was told she had dropped from 60 to 30 and looking at Google I assume that is Moderate CKD (GFR = 30-44 mL/min). I just cannot believe that she was living at home back in April!!

Wondering if anyone had been through this tug of emotions?
 

witts1973

Registered User
Jun 20, 2018
731
Leamington Spa
Hi all, just an update. Mum was discharged back from hospital to the care home last Tuesday and it has been pretty rough. Immobile, incoherent, relying on help for all personal care and feeding, it's a pretty weird experience feeding your own mother!

Today was a little better, she had just seen a physio and had been bathed and had her nails done and was enjoying a coffee and some chocolate. Managed a joke with her that her birthday was coming up soon and suggested a car day at Brands Hatch (black humour obviously). She smiled and said "as long as it's in Concorde" (she designed Concord's windows back in the day)

So all good'ish,,,,,not! As we were leaving the Nurse said that the GP had just phoned and stated that mum's bloods had come back and she was showing kidney failure (probably the cause of the electrolyte imbalance) and he wanted to rush her back to hospital. We then sat down with the Nurse and Care Home Manager to discuss mums wishes as laid out in the Lasting Power of Attorney. We then spoke to the GP and it has been decided that it would be better for mum to just receive palliative care at the care home rather than send her back to hospital where she always deteriorates. They obviously can't cure it, just possibly control it, and it became evident that she would just be going to and fro hospital with a dementia drop each time. Everyone seems to agree and it is in black and white in the LPA but my sister and I almost feel like we have just signed her death warrant but at the same time don't want to see her suffer anymore.

Not sure on the prognosis of kidney failure but I was told she had dropped from 60 to 30 and looking at Google I assume that is Moderate CKD (GFR = 30-44 mL/min). I just cannot believe that she was living at home back in April!!

Wondering if anyone had been through this tug of emotions?
I feel for you and your sister feeling like that,I had to help a nurse fill out end of life care forms at home next to my mums bed and it made me feel terrible
 

Max68

Registered User
Aug 21, 2018
83
Sussex
So sorry Witts that's awful. It's almost a feeling of a lesser of two evils but is it. There is no angel on one shoulder and the devil on the other just two devils!!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Hi all, just an update. Mum was discharged back from hospital to the care home last Tuesday and it has been pretty rough. Immobile, incoherent, relying on help for all personal care and feeding, it's a pretty weird experience feeding your own mother!

Today was a little better, she had just seen a physio and had been bathed and had her nails done and was enjoying a coffee and some chocolate. Managed a joke with her that her birthday was coming up soon and suggested a car day at Brands Hatch (black humour obviously). She smiled and said "as long as it's in Concorde" (she designed Concord's windows back in the day)

So all good'ish,,,,,not! As we were leaving the Nurse said that the GP had just phoned and stated that mum's bloods had come back and she was showing kidney failure (probably the cause of the electrolyte imbalance) and he wanted to rush her back to hospital. We then sat down with the Nurse and Care Home Manager to discuss mums wishes as laid out in the Lasting Power of Attorney. We then spoke to the GP and it has been decided that it would be better for mum to just receive palliative care at the care home rather than send her back to hospital where she always deteriorates. They obviously can't cure it, just possibly control it, and it became evident that she would just be going to and fro hospital with a dementia drop each time. Everyone seems to agree and it is in black and white in the LPA but my sister and I almost feel like we have just signed her death warrant but at the same time don't want to see her suffer anymore.

Not sure on the prognosis of kidney failure but I was told she had dropped from 60 to 30 and looking at Google I assume that is Moderate CKD (GFR = 30-44 mL/min). I just cannot believe that she was living at home back in April!!

Wondering if anyone had been through this tug of emotions?

Snap!
Dad in care home & I’m sorting out palliative care at this very time. Talking about not giving certain meds as they can’t be crushed & he is in acute kidney & liver failure.

Mum booked in locally to myself & Dad for respite care for a week. Mum is in stage two kidney failure & has just received diagnosis of late to end stage mixed dementia only a week ago today.

It’s almost a race to the finish line between them, but by sheer grit & determination I know Mum will be coming in second.

At the moment the practicalities of sorting out extra care, & being the liaison point co - ordinating all the separate agencies keeps me busy.

I am also enjoying being their daughter & not their carer. Yes I feed Dad at meal times, but it’s optional not expected & I find it precious time together.

Having Mum close for a week will be lovely as will being a daughter again spending time together & making sure Mums last “hurrah” is memorable for all the right reasons & beneficial to her wellbeing.

Dignity, peaceful & pain free has been my goal all the way along, I hope to achieve an easy transition for Mum & Dad, all I can do is hold their hands & cuddle them so they know they are not alone on this journey.

I come away & sob for a while in the privacy of my car; but now isn’t the time for me. These precious moments will soon be over......so I’m making beautiful memories that I will treasure. With almost every person in my parents care trying to help me , some more than others ,I am able to cope ( not well at times but much better now) with the double whammy dementia has presented.

Life isn’t perfect but by doing my best I will hope to have no regrets.
 

Max68

Registered User
Aug 21, 2018
83
Sussex
So so sorry that is awful. Hugs at this awful time, you are an inspiration and you should be very proud of yourself.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So so sorry that is awful. Hugs at this awful time, you are an inspiration and you should be very proud of yourself.

Trust me I don’t feel inspirational, just blundering along trying my best- I have miserably failed at times in a spectacular manner!!
It’s a surreal situation - each persons dementia journey is unique but has certain similarities; as is the PWD families & loved ones response to this disease.

Having had close family bereavements & experienced regrets at things I didn’t say or do- I was afraid I’d hurt my Gran hugging her in hospice, I didn’t lie down beside my biological mum as I wanted to because I didn’t want to intrude or upset others with my actions; so I’ve taken those life experiences & gone with my heart & what feels instinctively right.

The comfort that cuddling up on Dads bed & holding his hand gives me precious time with him & memories I will treasure.
Making hard choices & honouring his personal wishes are balanced with the knowledge that Dad is calm, comfortable & feels loved.

Tomorrow will be a long day 6 hours of driving to get Mum in respite care. But it’s arranged & I am determined to be “the sunshine girl” that is needed, I will find the positive in life & in the process life’s final journey I will do everything in my power to give my parents the dignity all deserve. I can’t do anymore than that, oh apart from still making them smile at my scatty silliness at least once a day!

I hope you to can find some peace in your loved ones journey & can make some precious memories. It’s so difficult a time but by not having so many regrets i find it comforting myself at this moment in time.

Sending you love & light xx
 

Max68

Registered User
Aug 21, 2018
83
Sussex
Well Mum has incredibly rallied with the Kidney situation and the GP said her levels had increased after last weeks drop. He said that the drop "could" have been due to the lack of care given at the hospital and the increase is due to the improved levels of care at the care home. Unbelievable isn't it, I think hospital is probably the worst place for a sufferer of dementia because they aren't able to converse themselves with the staff and the staff on a general ward are not trained in dementia. The NHS needs to either allow full treatment on Dementia Wards (our local one is merely a holding station for want of a better phrase) or train every single staff member in dementia. It's ridiculous that mum's sudden decline has occurred after two hospital visits.

The GP agreed that mum would be best served with as much treatment as they can at the home and hospital would only be required if for instance she fell and broke her hip or was in such pain the home can't cope. The next month is crucial on seeing how she goes physically as she could improve and then decline or continue some improvement. The dementia however has really taken hold and she is very upset again not knowing what's wrong with her etc. It seems after each hospital visit it's like Groundhog Day where the mental journey goes through exactly the same stages.
 

canary

Registered User
Feb 25, 2014
13,958
South coast
Im glad she is back at her care home and is improving
The GP agreed that mum would be best served with as much treatment as they can at the home and hospital would only be required if for instance she fell and broke her hip or was in such pain the home can't cope.
Mums GP and I agreed the same thing. Its a roller coaster isnt it?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
I was told Dad is now within normal parameters.....
What’s normal for one person isn’t normal for another, so I’m asking for the blood results not parameters.....
 

Sirena

Registered User
Feb 27, 2018
2,294
The manager of my mother's care home is very emphatic that residents should spend as little time in hospital as possible, and preferably avoid it entirely (unless as you say treatment is needed for something like a broken bone). My mother broke her hip last year, the majority of the patients on the ward had dementia and the nurses and healthcare assistants were allegedly experienced in dealing with them - yet they hadn't got a clue. The physios said she wouldn't mobilise so the hospital was reluctant to discharge her, so the CH manager went in and got her mobilising within five minutes. I think it's partly that the hospital staff don't have enough time, but they certainly don't have the right approach either.