A tough year for Eric...

gigi

Registered User
Nov 16, 2007
7,788
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70
East Midlands
I've been away from TP for so long, but I feel the need to return once more.

It has been a tough year for Eric (my husband) He's now entered his 4th year in care and has substantially deteriorated over the last few months.

He is now classified as end stage dementia. A series of chest infections have left him extremely breathless at rest. SALT have assessed him and he is aspirating..so is now on thickened fluids and a fork mashable diet. His GP has put the 'end of life' care package in place.

Last week we had a Continuing Care Assessment and am now waiting for the outcome. As Eric is in Residential Care it may mean that I will have to move him to a more suitable home with Nursing Care. The current CH are unsure as to whether they can meet his needs as his condition continues to deteriorate.
While I'm reluctant to move him at this late stage, I can see the logic.
Naturally I'm waiting for the assessment outcome before I do anything..I just want what's best for Eric.

Love xx
 

Izzy

Volunteer Moderator
Aug 31, 2003
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Dundee
Hi Gigi. It's lovely to see you back here but I'm sorry to read about Eric. I hope you can get things settled re the CHC and if Eric has to move that you find somewhere suitable for him quickly. xx
 

Noorza

Registered User
Jun 8, 2012
6,541
0
I hope his passing is as peaceful and pain free as it is possible to be.

It's hard to let them go but if there is no way to bring them back to a life worth living, it's right to focus on how to set them free. So sorry that it must be so hard for you.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
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Hi Gigi - lovely to see you again but I'm so sorry about Eric.

You don't think it might be a good idea to have a look at other homes so you have a short list should the current home feel they can't cope? I expect you already have.

Also, what about hospice? I know it's very variable depending on where you are, but from what you say, they might at any rate be able to give you some advice,
 

gigi

Registered User
Nov 16, 2007
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70
East Midlands
Thanks for such prompt replies!

I have a few places in mind..of course it all depends on availability. Thanks for the thought re the Hospice, Jennifer..I hadn't even considered it!
The only snag there may be that Eric's 'condition' is still very much the unknown. There is no way to know how long he will remain as he is, or when the next chest infection will occur. All I know is that when it does occur, antibiotics will not be an option.

I hadn't foreseen that things would happen like this. Eric is still able to stand and walk with assistance on occasions..other times he has to be hoisted. He still can flash a smile..join in a song..sit and play a few notes on the piano. But anything over and above 'normal function' for a couple of minutes leaves him gasping for breath and exhausted.
The old and familiar words from TP come back to me: 'The only predictable thing about dementia is its unpredictability'.

I just feel a bit at sea with it all...like we're starting again on another journey I'd rather not face.

Love xx
 

BeckyJan

Registered User
Nov 28, 2005
18,971
0
Derbyshire
Hello Gigi, its good to see you back although sad to hear about Eric.

I love to hear that he still flashes a smile, plays a few notes and sings a little. Its tough time for you now not knowing what is likely to happen next. Another saying 'one day at a time'. Its wearing for you so take care of yourself too. x
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
Hi Gigi,

I'm so sorry that you have reached the 'getting to the end' stage. His needs have changed now and you are wondering what is to come and how you can make things as best you can for Eric. As you know I was at the same stage at this time a year ago.

If Eric's nursing needs become more important than his dementia needs you may need help to get through the minefield of who pays for what. I don't know how Eric is funded (if at all) but once Ken moved to the hospice, the social worker there said that his mental health funding would cease! I got in touch with Ken's CPN who came to assess Ken in the hospice. As Ken was completely bedridden and fighting and spitting at anyone who came near him, he decided that Ken's funding for mental health needs must continue.

Also most hospices have the policy that they will not admit anyone unless they are completely at the end of life. Ken was at this stage and was admitted to the hospice. He then rallied a little and I was told that the maximum time he could stay there was two weeks. I was devastated and asked to see the consultant at the hospice. She told me that the doctors under her supervision had said that he was not now close to death and that she could do nothing as it was the policy of the hospice that they could only offer a bed for two weeks if it was deemed death was not imminent.

I did find a nursing home although I had to wait a few days for a large room which could accommodate his nursing needs. I was so relieved when the nursing home manager phoned me to say the room was now for Ken but would need a few more days to be redecorated and would I be able to supply the type of specialist bed Ken needed. I went to see her, looked through a catalogue she had and ordered one which cost over £1,000 pounds.

Two days before he was due to be moved he became ill again and died on the day he should have moved to the care home. I had known all the time the hospice doctors were telling me he was not at death's door that he was!

The hospice policy had put me through hell on earth trying to find the right home for him to go to and even when I was paying for the special hospital bed, I was certain that he would never be able to use it, which of course was what actually happened. The nursing home manager managed to get her company to go halves with me on the cost of the completely unused new bed. I was happy with this as I hope it has now been used for some other needy family. I wasn't at all surprised when the nursing home manager told me that the previous resident in the room which had been redecorated for Ken had also come from the hospice and had died five days after arriving at the home. At least Ken was spared the ordeal of being moved by ambulance from the hospice to the nursing home.

However, despite all the above, I would give you the advice to ask that a local Hospice nurse comes to visit and assess Eric's needs. Even if she deems him not ready for hospice care, she can arrange all kinds of help whilst he is in his present condition and even have a hospice nurse visit daily if needed. She might be able to help you to find a nursing home for him because as a local hospice nurse, she will have nursed other end of life patients in local nursing homes.

My love to you and please feel free to phone me if you need any help or support.

xxTina
 
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gigi

Registered User
Nov 16, 2007
7,788
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70
East Midlands
Thanks for such a lengthy reply, Tina.

I do think that when Eric's time comes his GP and the DNs will be able to manage his care on the physical side..end of life medication is in place at the Care Home and will remain so until ..and if..the need arises.
Just now I don't realistically think that Hospice is an option..because we have an unknown time scale. We only know that the next chest infection could prove fatal.

My sorrow is in the fact that I have to move Eric at all. He is oblivious to where he is..but I still think another move will not be beneficial to his dementia. On the other hand...if he stays and the CH are unable to care for him properly ..that's not beneficial to him either.

As for funding..he currently pays and the LA pay the rest. The recent assessment put him as qualifying for Continuing Care Funding. If that's approved then I assume the Health Authority pay the bill for wherever he will go.

Just now all I want is for him to be somewhere with gentle people who will take care of him as he deserves to be taken care of.

He is very frail and very, very tired and confused.

Poor man. I hope this doesn't offend anyone but I really wish it was over for him.

Love xx
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hi Becky,

One day at a time is the only way..thanks for that!

Needless to say this is uppermost in my mind, but thankfully I have my work to distract me through the week.

It's odd how 'normal' life goes on...with this all playing in the background most of the time.
Then it suddenly hits you again and you have to try to put it all into perspective.

Love xx
 

hazytron

Registered User
Apr 4, 2008
1,166
0
SOUTH LAKES
Hi Gigi

I am so so sorry that Eric has deteriorated so much. You are treading a path that I have not trodden and am so glad that other "TP ANGELS" can offer you such good and helpful advice.

I hope you will gain the support of all involved with the care of Eric so that you will have confidence and faith in all decisions that have to be made.

In the meantime, I send you my love and gentle hugs and as much strength as you need to see you through yet another stage of the "Dementia" journey.

xx
 

faithy

Registered User
Jul 31, 2013
61
0
Worcester, Massachusetts
I've been away from TP for so long, but I feel the need to return once more.

It has been a tough year for Eric (my husband) He's now entered his 4th year in care and has substantially deteriorated over the last few months.

He is now classified as end stage dementia. A series of chest infections have left him extremely breathless at rest. SALT have assessed him and he is aspirating..so is now on thickened fluids and a fork mashable diet. His GP has put the 'end of life' care package in place.

Last week we had a Continuing Care Assessment and am now waiting for the outcome. As Eric is in Residential Care it may mean that I will have to move him to a more suitable home with Nursing Care. The current CH are unsure as to whether they can meet his needs as his condition continues to deteriorate.
While I'm reluctant to move him at this late stage, I can see the logic.
Naturally I'm waiting for the assessment outcome before I do anything..I just want what's best for Eric.

Love xx
I am fairly new here but I just wanted to say I am truly sorry that the both of you are going through this. My husband has dementia caused by a massive stroke. Prayers coming your way.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
I, too, am sorry that Eric is now at end stage. These times and situations are never easy and I wish you peace and strength as you tread the path before you.

Love
 

DeborahBlythe

Registered User
Dec 1, 2006
9,222
0
I'm really sorry to hear your news about Eric, Gigi. I hope you find a good nursing home for him: one that will care well for Eric and allow you some peace of mind. Love and hugs. x
 

Mameeskye

Registered User
Aug 9, 2007
1,669
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59
NZ
Not often on here but sad to see your message. It is a hard stage to be at...but as a though, is it possible for the district nurses and hospice nurses to support Eric in the current home? I would be hesitating to nice him too and am eternally grateful that Mum was in a full nursing home from the beginning.

Thoughts are with you at this sad stage...and may you both find peace.

Love n hugs
mameeskye
 

ROSEANN

Registered User
Oct 1, 2006
909
0
75
staffordshire
Hi Gigi
You and I seem to be on the same path at the moment.
Like you I do not come on TP much these days as my days are spent with my husband at his nursing home.
J is now on palliative care and has been for the last four weeks since the GP told me it was only a matter of time.
J has been in hospital several times with a twisted bowel and they say he is too ill to have an operation and they don't think it will be appropriate for him to go back to hospital. He has to have Dia-morhine injections to help with the pain and he is having trouble with eating and drinking.
It is heart breaking to see him like this and I pray it will not be too long.
My thoughts are with you
Love Roseann x
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Many thanks to you all...so sorry to hear about your husband, Roseann. It's a long and relentless journey for them and for us.

I've waited until I had some concrete news before I posted again.

Eric has been assessed as needing Nursing Care and has been granted continuing care funding.

He will move next Thursday to Nursing Home which is also a specialist Dementia Care home. It's a purpose built place..lots of space and light, large ensuite rooms and an all-day restaurant type facility. Seems too good to be true. It's certainly a different world from the one he's inhabited for the last 3 years.
CQC report is excellent.
I can only judge from 2 visits...all residents seemed well cared for, relatives I spoke to were happy with the care.
It's a big place..83 beds, but split into smaller units. Staff were friendly and approachable.

Yes, I am reluctant to move Eric...but I do feel long term..(however long that is) this is in his best interest.
I also think that his current care home is experiencing such dire problems with staffing...there is currently no manager...and the level of care has dropped alarmingly..therefore this move is now essential.

His chest is 'noisy' again...thisafternoon I found him with a mugful of ordinary tea which he was trying to drink...and choking over. No thickener in it in spite of the SALT assessment.

So...will keep you posted.

Love to all xx
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Very sorry to hear that Eric now needs nursing care but glad that it seems timely with the staffing problems where he is now. Glad that he has ontinuing health care as this will provide all that he needs.

Love to you both
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi gigi

While obviously a move isn't ideal if everything is equal, it's clear from what you have said that everything isn't equal. The new home sounds much more suitable for Eric than the current one, and I'm so glad (Hmm probably not the right word under the circumstances, perhaps relieved?) that Eric now has the funding he deserves.

Love
 

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