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[CLKD]

I can't understand why the Care Home haven't made it clear especially now, what they expect for your Mum.  I think Hospital is the right place, they too should have sat you down to make a Care Plan.  It's a legal requirement.

If my Mum was being cared for; kept clean, turned to avoid bed sores; I would leave well alone.  She is 2 hours drive away so I would book into a Hotel rather than commute.  Usually at end of Life close relatives are allowed in at any time.  That way any care can be provided without needing to call Staff all the time. 


R U afraid to ask the important question groundhog? 

[CLKD]

Any difference today?   Have the Staff given you advice? Is there a PALS group who could liaise?

[CLKD]

Any news?

[CLKD]

What was decided about your Mum's ongoing care?

[groundhog]

Hi ladies. Sorry for delay.
it's been a harrowing week.  She is still in hospital and still with us.  I've been up most days and sat with her, held her hand . Fed her bits here and there.  She is skeletal.  We saw consultant.  He was a nice man, old school in his 50s.  He kindly told us she  has advanced dementia and is basically dying.  A dementia death is not quick but we are probably looking at weeks or maybe months.  He also said he felt no more should be done in the way of interventions so no more hospital admissions or blood tests or cannulas.  He said they are preventing nature do it's job .  On the day of the meeting she was awful, I thought she was going to die there and then. What was really sad was as I sat with her tears running down my face she raised her hand and wiped them,  my husband cried.  It was very sad.  The next day she was brighter, ate more and we even had a smile.
The plan is for her to go back to the home but as I've said it's a care hime but not nursing although what happens is district nurses and GPS attend to administer what is needed and the carers do the day to day things.
Hi Pennyfarthing - we didn't have this conversation because when she was admitted there she was already brain damaged and had no cognitive abilities.  I don't think she would want to be like she is. 

I've never experienced a dementia death, my dad dropped dead aged 64, other deaths have been cancer,
I don't feel strong to deal with all of this but I must inknow.  I sent a letter to the consultant today asking him to make sure before she is discharged I need to be sure the home can provide this level of care as surely end of life is different to day to day caring .
Il keep you posted ladies xx

[CLKD]

It is hard but Nature will ease your Mum's passing as long as there are no hurried interventions.  The Consultant sounds like he knows how Nature works.

Even though your Mum was accepted into the Care Home groundhog, they have been remiss in not sitting you down to discuss end of life.  My Mum is in a Care Home where the District Nurses attend as necessary.  Nurses can't do any more than care staff will.  The important thing is that your Mum is turned every hour to prevent bed sores which would require anti-biotic treatment.  Which would prolong life .......

If you visit the Surgery who attend the Care Home - the GP/Nurse have a Monday Clinic at Mum's Care home and go when called 4 emergencies - and discuss your worries.  You should be able to talk with the GP responsible for the Home, which is a legal requirement in England, don't know about Wales, in that every Home has to have a local Surgery to keep an over-all eye on residents - and meet the District Nurses.  Take a list of worries!  It won't seem so daunting if you pass on the care to the Team.

Often people with dementia have moments of clarity which is difficult for relatives.  In effect, your Mum is saying goodbye.

[Krystal]

Groundhog, sending you my love and best wishes. I have read your blog and can I identify with how you currently feel. I was in your position 12 years ago and it is so hard.  Life can be so difficult at times and like you I did not know which way to turn. In the end I contacted the care home and said I wanted to discuss mum's end of life care. Once I had done that it felt like a weight had been lifted someone else was taking control.

 Make an appointment with the officer in charge of the care home and say you want to discuss your mums care. Write down what you want to say, take someone with you for support and go to the appointment. At the appointment hand your questions to the person you see and say you want to discuss each point. Sometimes we need to be assertive to get things done. If you are not happy speak out. Do not be afraid taking this course of action.

 By making the appointment you may be surprised at how constructive this will be. The staff at the care home may be sensitive to how you are feeling and do not want to cause any unnecessary distress. After my appointment at the care home the GP intervened and my mum was given access to specialist nurses (DALE Nurses) who help me with an end of life care plan for my mum. Difficult as it was to do the care plan this was implemented, making my life more comfortable with what was happening during that time.                         

If you do not say anything to the care home they will do what they think is best and you may not feel you have had any say in your mum's ongoing care.

Sending you best wishes and more love. XXXXX

[CLKD]

   Krystal 

[sheila99]

I wish I could say something constructive. Sending good vibes and wishing you the strength to cope.

[Donnadoobie]

I lost both parents to dementia, Dad had vascular dementia and Mum Alzheimer's.  End of life for Mum was worse and it dragged on a few months.

Really feel for you Groundhog, or anyone else that is going through this, it is heartbreaking.

Big hugs to you.

[Pennyfarthing]

groundhog .... Krystal's advice is good.  As I said earlier Mum's care home and ourselves did an End of Life Care Plan and it is safely filed away but I know it's there if and when Mum deteriorates and that her wishes will be met. 

I am also Mum's Power of Attorney for Health & Welfare as well as Property & Finance and I promised her when we set that up that I would never allow anybody to go against her wishes. 

Sending love to you both. 

[Dorothy]

Just want to send you huge hugs.  This waiting time is so exhausting for the families, mentally, physically & emotionally.  Just been through it in the past couple of weeks with a close friend & fiance's dad, both lost to cancer.  Waiting is the hardest thing xxx

[CLKD]

Dorothy 

[groundhog]

Hi all
Mum is back in the home.  I'm confident as I can be they will care for her as her life comes to an end.  You are right though it's awful just watching and waiting for the phone call.  I go down everyday and hold her hand, stroke her hair and talk to her.  Sometimes I play music that she used to like.  it's just heartbreaking. 
I am power of attourney but not for health and welfare, another mistake we made.  As you know though with mum life changed overnight and we never had these conversations.
I think of my own future and to be honest it all terrifies me now.  Watching her skeletal in the bed,  she's resorted to a foetal position and il be honest it's so difficult. My sister is harder, my daughter has 2 babies and is more emotional than me, my husband did actually get very upset when he saw her last week , her sisters don't want to visit the hime in case they catch something.  Thanks a bunch.
At least she is back in our home town now so that's good, I didn't want her to die in hospital. 
Xxx

[Pennyfarthing]

Hi all
Mum is back in the home.  I'm confident as I can be they will care for her as her life comes to an end.  You are right though it's awful just watching and waiting for the phone call.  I go down everyday and hold her hand, stroke her hair and talk to her.  Sometimes I play music that she used to like.  it's just heartbreaking. 
I am power of attourney but not for health and welfare, another mistake we made.  As you know though with mum life changed overnight and we never had these conversations.
I think of my own future and to be honest it all terrifies me now.  Watching her skeletal in the bed,  she's resorted to a foetal position and il be honest it's so difficult. My sister is harder, my daughter has 2 babies and is more emotional than me, my husband did actually get very upset when he saw her last week , her sisters don't want to visit the hime in case they catch something.  Thanks a bunch.
At least she is back in our home town now so that's good, I didn't want her to die in hospital. 
Xxx

as you say she is closer to home and that is a comfort. When my Dad was dying I managed to get him out of a large noisy hospital 50 mile round trip away to a tiny cottage type hospital just 6 miles from his home. It was quiet and peaceful and he had his last week there.

I can understand you worrying about your future too - I am the same as are most of my friends of a similar age.  The things I am going to make sure are in place are POA for Health & Welfare as well as Property & Finance.  I am also going to make sure I have what I want NOW and not get worried about saving money because I have watched my Mum having every penny she worked so hard for, taken away to pay for her care.  The final thing is, if I get a life threatening illness I am out of here as soon as I am diagnosed as is my husband if it happens to him. 

There is a wonderful book called Safe Journey Home and your library could probably get you a copy or look on Ebay. it's a paperback and not expensive.   it's full of practical ideas you can do to make a person's final weeks comfortable and peaceful.    The book is by Felicity Warner.  Sending you lots of love xx