Rock Bottom

Izzy

Volunteer Moderator
Aug 31, 2003
74,481
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Dundee
.....tomorrow I`m going to listen to Terry Waite talk about his time in captivity.

Terry Waite came to our church some years ago to talk about his time in captivity. It was a really good talk. I bought 2 copies of his book and had them signed by him. To my shame I haven't read my copy as yet. I gave the other as a gift. I hope you find it interesting Sylvia.

@Wifenotcarer - I'm so sorry that you're having such a hard time.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,935
0
Kent
Thanks Izzy. I doubt I will buy the book.

If Dhiren was still here I would definitely buy the book because it would be right up his street.
 

MaNaAk

Registered User
Jun 19, 2016
11,942
0
Essex
Got the call I have been waiting for from Social Worker today. It started off fairly positive in that OH's assessment which (states that he needs 1/1 care 24/7 and that this can only be met via a placement in residential care) has been completed and is now with the senior care manager for rubber stamping.

Then the blow which knocked me sideways - The 'just up the road' lovely care home where my Uncle was so happy, which SW assured me last week would remain in use for at least two years, IS to close shortly and consequently they are not taking any new residents. This will leave no residential care places available locally for the foreseeable future and 40 current residents in the home that is closing who will need to be found places elsewhere. Meantime, our only hope is for a placement in a neighbouring County 30 minutes away by car, 45 minutes + a long walk by bus.

My dream of having OH comfortably settled before I crack-up completely, 5 minutes away from home in a place I know well, with easy access for visiting by me, the family and our neighbours/friends, shattered in one phone call. SW is coming here to discuss other options next week, but I cannot envisage anything suitable being offered and am minded to tell them to leave us alone and soldier on at home rather than accept 2nd, 3rd or 4th best.

*Sweary Word + even worse Sweary Word, Austerity and Council Budget cutbacks. If the powers that be could see the heartache they cause to families with their policy decisions they would surely.......?????. No they wouldn't, they are All Right Jack with their goldplated pensions and private health and care provision.
Dear Wife Not Carer,
They are too busy thinking of Brexit. My thoughts are with you. You have come this far
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Wondering now if I can manage to keep OH at home rather than have him sent to/installed in a Care Home far away. Everyone, including the Daughters was convinced that a move to a Care Home was essential for my own and OH's sake, but that was when the 'just up the road' Care Home was available. I was always willing to soldier on while I had that option coming soon. Now I don't know what to do.
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Wondering now if I can manage to keep OH at home rather than have him sent to/installed in a Care Home far away. Everyone, including the Daughters was convinced that a move to a Care Home was essential for my own and OH's sake, but that was when the 'just up the road' Care Home was available. I was always willing to soldier on while I had that option coming soon. Now I don't know what to do.

Crunch time. SW phoned yesterday while I was out hanging out washing. She left a message to say that OH's assessment had been confirmed and SW would now seek a residential placement for him. I have to phone her back this am to find out what the options are. I must try to keep an open mind, but cannot think of any option that will be ideal. Whatever is on offer will not match up to having OH safe and well looked after in the same village.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Hi Wife not carer!!!
As you know I have always read your posts and have empathised with oh so much!!
What a big disappointment about the local CH BUT..........I firmly believe everything is for a reason, be it almost always hidden at first look.
I suppose the options are 1 . Carry on regardless even with outside care in place you are still 24/7 or 2 except that your ideal CH is no longer an option,
Reading your thread again from start to where you are now , the first option would be probably lead to your health, both physically and mentally suffering. The second option would undoubtedly ( according to other on TP lead to stress, grief and mental suffering. Not much of a choice really.!
However, a choice has to be made.......
As humans we can have selective memory......often forgetting the pain, exhaustion, and hopeless of caring for our OH, of course we want to continue BUT !!!!!!!
The reverse is a different kind of pain I am sure....
I wouldn’t assume to offer an option you should choose except that from other threads it seems that a move to a CH can be of benefit for the PWD and the spouse....giving a way forward , where you would indeed be back to being ‘ a Wife not a carer’
Thinking of you,
sending sincere wishes ... Lady M
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Hi Wife not carer!!!
As you know I have always read your posts and have empathised with oh so much!!
What a big disappointment about the local CH BUT..........I firmly believe everything is for a reason, be it almost always hidden at first look.
I suppose the options are 1 . Carry on regardless even with outside care in place you are still 24/7 or 2 except that your ideal CH is no longer an option,
Reading your thread again from start to where you are now , the first option would be probably lead to your health, both physically and mentally suffering. The second option would undoubtedly ( according to other on TP lead to stress, grief and mental suffering. Not much of a choice really.!
However, a choice has to be made.......
As humans we can have selective memory......often forgetting the pain, exhaustion, and hopeless of caring for our OH, of course we want to continue BUT !!!!!!!
The reverse is a different kind of pain I am sure....
I wouldn’t assume to offer an option you should choose except that from other threads it seems that a move to a CH can be of benefit for the PWD and the spouse....giving a way forward , where you would indeed be back to being ‘ a Wife not a carer’
Thinking of you,
sending sincere wishes ... Lady M

Thank you so much for your thoughtful reply. It is just what I needed to clarify my thinking. You are quite right - My favoured option is now off the table, leaving option 2 (keep him at home with me) which I know I cannot sustain over the longer term, which will mean that there will be a crisis point and OH will be placed anywhere which has a space at the time. Which means that it has to be option 3 - a long term placement in a care home which specialises in Dementia Care or has a dedicated Unit. Hopefully one which is not under threat of closure where OH will be able to stay, no matter how much he deteriorates. And I will be able to visit and become again, as you say "Wife not Carer".
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Can't believe it was only last Tuesday when I last posted, because everything has been turned upside down again.

SW came on Wednesday, and told me that all 8 'care' homes in the County, were actually Nursing Homes and therefore not appropriate for OH. She left me with a list of 6 privately run care homes in the neighbouring County, which I am supposed to visit and see if I like any of them. She said that she had little knowledge of any of them, other than that one of them which scored badly in care commission review has had a further review and been uprated and another (run by the Christadelphians) does not force residents into religious practices!!!. I have checked them all out on-line. 1 is over an hour away by car, the 1 with the bad review has tiny bed rooms with no en-suite, 1 is a 'modernised' old asylum & is also miles away, 1 specifies it is for physically disabled (not dementia) the religious 1's website stress that they are dedicated to catering for the 'spiritual' needs of their 8 residents. 1 in the city centre, looks lovely and has great reviews.

However, as I could not believe that none of the local, i.e. 4/5 miles away homes, accepted people with dementia, I checked out them on-line and discovered that they are mainly dual registered i.e. as Nursing Homes and as Residential Care Homes. I have talked to our local Alzheimer's Support Worker, who was astonished at what I had been told/offered and will check it out and get back to me. Have also spoken to my local Councillor, who said that was not his understanding. He is investigating and will also report back.

It is going to be a busy week - Someone coming from Council on Wednesday to complete the Financial Assessment Form and a GP appointment on Thursday to confirm that OH no longer has capacity, so that I can action the POA. Meanwhile OH continues to wander about, peeing and pooing randomly and often. Particularly half an hour before the carer is due to wash and dress him or ALWAYS 5 minutes after she has left.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
Hello Wifenotcarer
May you find the strength you need, at this time you need it most !
No more words....
Just to say
‘Thinking of you! ‘
Sincerely
Lady M
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Hello Wifenotcarer
May you find the strength you need, at this time you need it most !
No more words....
Just to say
‘Thinking of you! ‘


Sincerely
Lady M

My strength has more or less gone, I feel helpless. BUT not hopeless because our 2 wonderful daughters have stepped up to the plate and are busy contacting the local care homes, Councillors, our MP - anyone who has knowledge and/or influence. One rang the original 'just up the road' care home yesterday, and a member of staff told her that although it IS scheduled to close the staff have been told that their jobs are safe there for 2 to 3 years when they will transfer to the new Care Facility, which has yet to be designed, approved, etc. before they can start to build it.
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
My strength has more or less gone, I feel helpless. BUT not hopeless because our 2 wonderful daughters have stepped up to the plate and are busy contacting the local care homes, Councillors, our MP - anyone who has knowledge and/or influence. One rang the original 'just up the road' care home yesterday, and a member of staff told her that although it IS scheduled to close the staff have been told that their jobs are safe there for 2 to 3 years when they will transfer to the new Care Facility, which has yet to be designed, approved, etc. before they can start to build it.
Hi again.....
Well well, that’s interesting news re the local care home! Maybe something your daughters will pursue for you!
Good on you for enlisting all the help you can....!
Still thinking of you and hoping that your busy week will all go smoothly,
Keep updating on TP!!
Regards! Lady M
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Hi again.....
Well well, that’s interesting news re the local care home! Maybe something your daughters will pursue for you!
Good on you for enlisting all the help you can....!
Still thinking of you and hoping that your busy week will all go smoothly,
Keep updating on TP!!
Regards! Lady M

Well I now have a copy of our Councillor's correspondence 2 with the SW chief. Apparently what has happened is that a proposal to close the Care Home was discussed by the relevant Committee, but pended to the June Meeting for further information. However, at the same meeting a list of around 20 'things to do' which included 'Cease new admissions to ****** Care home from 1st April' (pending closure)' was passed on the nod without scrutiny and subsequently actioned. Thus there are currently no admissions allowed until after the June meeting of the committee, when they will decide on closure or not.

The reply to Cllr. seemed more concerned with how I knew, who told me? that the Home was to close, as all relevant staff were told that there would be no new admissions but that they should not discuss the reasons why with anyone - residents, other staff, the general public.

This leaves me afraid to cling on to the slim chance that OH WILL be able to go there, at least for the next 2/3 years. I can't seem to think about anything else or cope with everyday problems, feel sick and headachey, not sleeping, etc. And of course, this e.mail arrived late on Friday (with both Daughters away for the weekend) so nothing I can do about it before Monday.
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
Here we are on Monday and I have done nothing. No messages from SW nor Cllr. Daughters say I must just be patient and wait to see what is the outcome of the committee meetings - one this week and one at the end of the month. Tonight's care said that today was the due date for an assessment to see if the carers coming in has been of any help. I can't believe it is a whole month since they started. This led me to check the calendar and I see that this all started with a GP appointment on 6th February, when it was suggested that we should try a catheter and bag, which was a disaster. Everything has gone from bad to worse since then. That has been 4 whole months of reports, forms, appointments, etc. and we are still in limbo, which is likely to continue for the whole of June. How can I continue to exist like this, sleep deprived, anxious, upset stomach, on top of my chronic depression, Restless leg and now Sciatica. I'm thinking (half joking, half serious) that the only way forward is to take OH to the local care home and metaphorically 'dump him on the doorstep'.

It is our 53rd wedding anniversary tomorrow. OH is totally unaware and it will be just another exhausting day of cooking, washing, drying, cleaning, bed/trousers/pants changing etc.etc.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,935
0
Kent
This Thread has been running for six months @Wifenotcarer and your situation seems to be going from bad to worse.

I don`t know if you have phoned the Helpline in the past but even so, you have nothing to lose to try to see if they can offer any more constructive suggestions than I have.

National Dementia Helpline

0300 222 11 22


Helpline opening hours:

Monday to Wednesday

9am – 8pm

Thursday and Friday

9am – 5pm

Saturday and Sunday

10am – 4pm


I hope your anniversary isn`t forgotten by your two wonderful daughters even if you feel you have little to celebrate.
 

Timro

New member
Jun 4, 2019
6
0
1st load of washing done and now in the tumble drier ( because it is raining again) 2nd load of all he has wet today now on and third load of whites still to do. Earlier I tried to spend a half hour outside sawing wood, popping in every five minutes to see if he was OK only to find that he had put the soaking wet dishes away in all the wrong places and broken a glass, was trying to pick it up in his soaking wet stocking feet and hide it and the next time he had wet himself and the bathroom rug again, hidden the wet clothes in the clean laundry basket, put on pyjama trousers and was sitting in my chair - why? because he had wet his own chair. Gave up the sawing, made lunch (sandwich, soup and a banana) found the banana skin down the side of my chair and half the soup poured into the sink blocking it. All this while wearing 'pull-ups' which remain bone dry because he doesn't pull them down when he goes to the toilet, just pushes them aside, pulls his willy out at the side and pees all down his trousers, and the floor. Sorry to be so graphic. We had to come hope early from Christmas Dinner and again from New year's dinner because he had an accident in the middle of the main course. No once a week day care because they have 3 Wednesdays off for holidays. We have not been apart at all for weeks now.

Audiologist is coming tomorrow to see how he is getting on with his replacement Hearing Aids, (he totally lost the last pair) so I did his ear drops this morning, cleaned the aids & put them in and now they are missing again. Strangely when he has no hearing aids in, he whispers and I cannot hear what he is saying. I did manage to make out him saying that he hears better without them, which is true if he sticks them in without switching them on. I am geared up for supervising their insertion in the morning and removal at night, but he is forever taking them out and planking them wherever, everytime he shaves, combs his hair etc. or because they are 'annoying him'.

We have just heard that a lovely old friend has died and he claims not to remember him at all. I am grieving but no chance of attending the funeral or sharing memories with OH. Also just heard that the Council run Respite Unit has been deemed substandard so no referrals for the foreseeable future. I had been amusing myself planning a break at beginning of February as I suffer from SAD, my depression is always worse this time of year. He decided it was night time when it got dark at 4.00pm and went off to bed in his vest and pants but has been back twice to see if I am OK and ask when I am coming to bed.

I have gone beyond frustration, lost all hope, feel as flat as a pancake, haven't any mental or physical energy left to try and plan ahead. Just carry on like a zombie.

I’m so sorry, it’s so sad to hear. As a newbie to this site if nothing else it makes me realise my situation is not so bad after all x
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
This Thread has been running for six months @Wifenotcarer and your situation seems to be going from bad to worse.

I don`t know if you have phoned the Helpline in the past but even so, you have nothing to lose to try to see if they can offer any more constructive suggestions than I have.

National Dementia Helpline

0300 222 11 22


Helpline opening hours:

Monday to Wednesday

9am – 8pm

Thursday and Friday

9am – 5pm

Saturday and Sunday

10am – 4pm


I hope your anniversary isn`t forgotten by your two wonderful daughters even if you feel you have little to celebrate.
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
I have not phoned the helpline but I do keep in touch with our local Alzheimer's Support Worker, who knows the local set-up vis a vis the Councils, SW and the IJC. The Interim Joint Committee is the entity tasked with managing the integration of Health and Care services for this area. I have the misfortune of trying to secure a safe outcome for OH while everything, including 'who is responsible for what' is in a state of flux. I am sure that it will all work out for the best in time, but ATM all is confusion. It is the old You can't break an omelette without breaking eggs and we happen to be the eggs!

I know it is useless to ponder on 'What Ifs' but IF I had succumbed to carer breakdown 6 months earlier, then OH would now be safely installed in the local Care Home.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,935
0
Kent
I`d still give the Helpline a try @Wifenotcarer. You have nothing to lose and hopefully something to gain.

The National Helpline may have more information to hand than local support workers.
 

Wifenotcarer

Registered User
Mar 11, 2018
342
0
77
Central Scotland
PS: I do tend to use this thread as a place to write down the thoughts churning in my head. This helps me to clear my mind and provides a reference point (of what happened when) for me. I find this off-loading very helpful, but, as I only post when I am stressed out, it probably gives a distorted picture of how bad things are. We no longer have 'good whole days' but we do have some happy times and, because OH retains his sense of humour, we have many laughs.
 

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