What will happen next?

[Ethel Joan]

What will happen next?

Hi all,
Been a member for some time now but have never managed to post much, have looked after my Mom and Husbands Nan, both with Dementia, now helping FIL with Step MIL. (SMIL)
Any advice from you lovely people would be gratefully accepted.

SMIL has been diagnosed for the last 7 years and FIL has managed to look after her at home.
3 Months ago he need a rest and got 10 day respite for SMIL. It went well but he missed her terribly.
On coming home, they arranged for a morning carer to call in and help her to get washed and dressed, she hated it, got very aggressive and FIL ended up doing the job.

From that point on she deteriorated and in desperation he phoned the doctor for help, who advised a stay in local Alz ward for assessment.

FIL accepted this as he knew he couldn’t cope any longer. She has carried on deteriorating since she has been on the ward. She also has other medical issues which put her at risk, so we were presented with a Deprivation of Liberty which he signed and was returned. He also came to terms with the fact that she needed full time care and that shortly we would be looking for a care home.

Now she has been in ward for around 10 weeks and FIL has changed his mind, he wants her home, because she getting better (she’s not) she’s eating more (on forsips no food) can now hold conversation (she cannot complete a sentence) he says he can cope with the changing of pads(now double incontinent) and he’s just a young healthy man ( seventies with a bypass op). And she keeps saying she is wants to go home(which we know is what a lot of our loved ones say) And we now cannot mention her going in a home again.

He has been a wonderful carer and has not given up when many others would. I think now that he has had a rest and a many good night’s sleep, he thinks and wants life to return as it was a few months ago, and of course he misses her terribly
.
While I really feel for him, she needs more care than he can give now.

The Deprivation of Liberty is up within the next few weeks, and I think this is when he thinks he can bring her home. What will happen is he refuses to sign a new DOL and tells them he is taking her home?

Sorry to go on, but I have never had to deal with DOL before and don’t quite understand the ins and outs.

Thanks for any replies, will log in again tomorrow.

Regards
Ethel Joan

 

[Ethel Joan]

Hi,
Well FIL has decided and informed the hospital that SMIL is going home.

Which they have decided will be on Thursday, they are arranging a care package for three times a day with perhaps a sitter for one morning. He has missed her terribily and is quite lonely on his own, and I admire the fact that he wants to care for her himself the best he can.

However he is in complete denial about her condition, she is hardly eating and drinking now, and when she needed the bathroom she gave the performance of her life to the two nurses who assisted her, screaming and shouting. He thinks that when she is at home she will be back to normal, 'shopping and days out'.

I'm concerned at how he will be affected and how he will cope, anyone experienced anything similar, and how did you handle it?
Regards
Ethel Joan

 

[jenniferpa]

First of all I should apologize that no one responded to your first post in this thread. I suspect that it got caught in the forum upgrade, not that this any excuse.

My understanding of a dols order is that it does nothing to stop a family member removing someone from a hospital or care home - it's just needed to legally let the hospital or care home stop someone leaving.

I very much doubt you'll be able to persuade him that he will not be able to cope until he's tried it again. And in reality he has a right to try, no matter how misguided everyone else might think it is. Just be sure you are there to help pick up the pieces when it doesn't work out. I think we have number of posters who thought this, tried it and then realised fairly fast that they couldn't cope. Hopefully one of them will see your post.

 

[chucky]

Hi, i would agree, i think its best to let him try again. Hes forgotten how demanding it is as hes clouded by the want and need to bring her home. Once he realises the severity of the illness, and all it entails, he'll admit defeat and see that its best all round for your mum to be in care. We tend to forget that they appear to be better because we are only seeing them for a short time when visiting, once its back to 24/7 the reality kicks in again. Ive done it myself, ive thought oh its not that bad i'll bring him home many a time but i know in my heart of hearts its not the right thing to do. Let him try, and support him as much as you can, im sure he'll eventually realise it wont work just give him time. Letting go is the hardest part and he needs to find his own way to come to terms with it. Im sure it will all work out eventually , be supportive of his decision for now and step in later should you feel you have to.

 

[Padraig]

Yes, I experienced some thing similar. my wife was in far worse state when I insisted on taking her home. She had stopped eating, no speech etc and I was 71 at the time. I'm aware some may find it boring to have me keep on about my experiences, but I feel very strongly about the loved one's emotional needs.
With the right support package and in the company of someone who loves them the results may be surprising for both of them.
While my wife was in a NH both of us suffered, joined together again we survived almost five good years when I was 76.
What I witnessed in the NH was all too painful, too many people give up and die a lingering painful death. You never know what's possible without trying.
It was once thought impossible to conquer Mount Everest, now it's common place.
Would I do it all over again? In the blink of an eye, it was the most rewarding experience of my life.
How I wish more people could share that experience, there would be less misery all round.

 

[Grannie G]

It is very easy for a carer to be tempted to take someone home and try again once they are rested. The thought has occurred to me more than once.

However, if your SMIL is on an assessment unit and would be unable to stay there permanently, it might be as well to allow her husband to try to have her home again, just to satisfy him that he has tried. It could possibly work out but perhaps not. Only then would he be able to make the decision and be more or less guilt free.

I would try to help him ensure he has a good care package in place though before your SMIL is discharged.

 

[sussexsue]

Hi, and echo Jennifer in saying sorry that your first post got missed.

I really havent got any advice but just feel so sorry for your FIL who sounds a lovely man and just wants his wife home. Sadly I suspect the reality is the person he wants home (your MIL before she was ill) is not the person he is going to get.

He probably has to experience the reality before anything can change.

Do keep posting - we wont ignore you again

 

[BeckyJan]

I did go through a 6 month spell when I had my husband home with carers set up for morning personal care. Bedroom set up downstairs, wet room installed and all seemed reasonably well. However the falls and agitation at night were the main reason for my complete exhaustion and the need for early respite and permanent care followed.

Having said this I am glad I tried - I can never regret that. As Grannie G has said there are still times when I want to bring my husband home again, especially when he goes through an easier phase and I feel strong and healthy. Commonsense takes over as I know I cannot do the 24 hours of physical care.

Your FIL will do as he wishes but must not feel a failure if it does not work.

 

[kazza73]

When mum was first admitted to the psych unit my dad was determined that she would be coming home once assessments were complete. It took him to have a very upsetting visit, when mum was having a really bad day, for him to realise that there was no way he would be able to cope with her at home even with lots of support.
Dad is heartbroken as he is feeling desperately lonely without her and feels terrible guilt every time he leaves her. The reality is though that he has witnessed the professionals really struggling to manage mum's needs and he has suddenly realised that he could never cope with a 'bad day' on his own.

It may well be that you need to allow FIL to bring SMIL home and try to care for her, with lots of support, and see how things go. I really hope it works out for them both.

It may be that the professionals will suggest a phased return initially so that they can ensure appropriate support etc is in place.

 

[Ethel Joan]

Hi, Thank you all for you kind words and support.

I think you are right to let FIL have SMIL home and see what happens, not that we would have stepped in his way, just to give him support and do the best we can for him.

I'll post with Thursdays events and let you know how it all went.

Regards Ethel Joan

 

[Ethel Joan]

Well wouldn't you know it, FIL was told today SMIL can't come home tomorrow, the care package is not in place, probably take two or three weeks to set up

Is this normal for the care package to take so long?

Regards Ethel Joan

 

[CathT]

Hi Ethel. Just wondering how things are? I find myself in a similar position. My mum was admitted to an assessment unit 5 months ago under a section 2 and her mental and particularly her physical health has deteriorated rapidly. We have a multi team meeting on Thursday when my mum's 'fate' will be determined. The professionals have voiced their concerns about my mum returning home. My dad is 82 and is also in denial and I know he will struggle to care for my mum and himself for that matter. It is heartbreaking to witness their lives being torn apart in such a cruel way.

 

[CathT]

Re time to set up care package, I guess it depends on the complexity and whether you are self funding or not. The OT will probably have to do a home visit and this could be delayed due to leave, availability, etc. If aids and adaptations are required hhis could add to the delay, however, in our case these were supplied very quickly, eg a brand new hospital bed delivered within 2 days. I hope the assessment unit recommended a phased return home. In our case my mum did daily visits home, which were gradually extended. Prior to her recent physical health decline, the plan was for her to do a couple of overnight stays but ATM these have been postponed pending further assessment/recommendation.
It sounds as though they aren't rushing your MILs return home which is reassuring.
Best wishes

 

[Ethel Joan]

Hi all,
Got called to the hospital today with FIL for a meeting with the OT team.

SMIL can come home tomorrow, but they said that it must be on a 24 hour trial basis.
The Doctor and staff and the OT team have concerns that FIL and the care package will not be enought for SMIL's needs.

She is to come home at 3pm for a meeting with the care team people, complete with medication and pads etc. However the care team will report back and if they find her to much to handle they will suggest she goes back in.

If at any time in the 24 hours FIL cannot cope he can phone and they will arrange to take her back straight away.

The thing is I'm away for three days over the weekend and FIL will have no support from us at this time, the OT team said perhaps that would be for the best as FIL will have to rely on himself and the care package.

So sad that it has come to this, they have been a devoted little couple.

Will update after weekend.

Thanks for the support.

Regards Ethel Joan

 

[Ethel Joan]

Just an update on SMIL

Well SMIL has been home for 12 days, with the carers coming in three times a day and FIL on duty 24 hours.

Sleeping has been ok she slept all night and FIL got his rest.

She still has problems eating and drinking take a lot of coaxing.

The trouble starts when the carers want to change her pads or the morning wash.
She hates this and reacts very very loudly and tries to fight her way out.
Yesterday she scratched one of the carers.

Today when they arrived she reacted very agressively towards them and they refused to help her, they called their main office and they sent the CPN (If thats the right title for her) who then phoned for an ambulance to take her back to the assesment hospital, they were here in 10 minutes and she was on her way.

FIL is a little bewilldered to say the least, he said it all happened so fast,I've tried to explain that he couldn't manage anymore ,that she needs more help than he can give,if she wouldn't let anyone wash her she would end up with an infection and then be really ill and what a wonderful job hes done until now. But it still must hurt that his little wife has been taken out of his control for her own and his benefit.

Thanks for listening

Regards
Ethel Joan

 

[knitone]

This is such a sad post.
I really feel for you, SMIL and FIL.
Hospital is no place for people with dementia, and finding the right home, especially under pressure, is hard too.
I do hope things work out for the best, and that FIL will be happy with the arrangements for his wife and the care she receives.

 

[Canadian Joanne]

Hello Ethel Joan,
Your poor FIL must be heartbroken. I so feel for him. But unfortunately for too many of us there comes a time when we can no longer cope.

At least he made the attempt. He gave it his all and you were there to support him.

 

[CathT]

Ethel Joan,
Thank you for the update and sorry that things haven't worked out. We are in a similar position albeit my mum never made it home. The powers that be recommended that my mums care could not be met at home. Tbh I think mum coming home would have finished my dad off but I feel desperately sad but also relieved that he didn't get a
chance to have her home once again. We now face the terrible task of finding a care home for her. We have applied for a couple but they have turned mum down as she now needs so much help with just about everything. I am shocked by the staffing ratios and very fearful for my mums future well being. I never imagined she would get so ill so quickly. I hope Ethel you find a really good care home as I do too.
Kind regards

 

[FifiMo]

Can you maybe get your FIL to see things from a slightly different angle and get him way more positive about a care home and the pluses that i can bring for him and his wife. By this I mean that the care home can deal with all the day to day needs and the areas that she was struggling with at home like eating and washing etc but by doing this it means that your FIL can then visit and spend quality time with his wife. Maybe get him involved in finding a nice home for her, maybe one that is nearby, make a point of getting the home to reassure him that he can visit at any time and spend as long as he wants there with his wife. So rather than him being worn out by seeing to all her needs, he can stay fit and healthy to visit her and spend time with her. Maybe he can start planning some things that will help her - can he make up special photograph albums for her, maybe start a life book to help the staff get to know her and her background etc. A lot of the time, I think the fear is that this is the end rather than it being another step along the journey of life. There is still much that they can do as a couple, just in different ways to what they are used to.

Fiona
x

 

[Ethel Joan]

Overdue Update

Wow, can't believe that it has been all this time that I last posted.

Well, SMIL is still in assesment hospital. (since end March 2011)

We did find a lovely home in Oct and they accepted her on a trial basis, first 12 days were OK, then then next morning, they phoned couldn't cope with her behaviour sending her back to the Hospital for medication assesment and will keep the bed open till the end of the six week trial when her meds should have been looked at and adjusted.

Six weeks came and went, no change in SMIL, home would not have her back.

Still in hospital until we found another home in Jan, took her on a trial basis again, she lasted one night before they sent her back saying they could not cope with her behaviour.

Back to the hospital.

The Doctors suggested that she could go on a long term ward until her needs change and then we could find a home for her. FIL said no he wanted a nice kind and caring home for her and we would look again.

So the doctors said that would be OK but said if we have found nothing in a few weeks they thought it would be best to move her to the other ward, and we could still carry on looking.

So that where we are, FIL has chosen a home and they are waiting to assess her on Monday when the Hospital Doctor is on duty. Don't know how this will turn out FIL is very hopeful, but with her past history, who knows?

The other ward at the hospital is very very nice, lounge is very cosy looking, has french windows onto the garden for the summer, a faux fireplace and some nice looking furniture, the bedrooms are partitioned off (not Curtains round the Beds) to look like private bedrooms, and the visitors lounge is like a bar, it has all the beer pulls etc (everything glued down lol) even the chairs are like being in a local pub. They have tried really hard to make it not look like a hospital.

Now it turns out that FIL has had a bill from the first home back in Oct.

SMIL is fully funded (no savings) and we did not think that we had to pay anything.

Apparently there is a six week rule, where she has to pay £114.75 per week for the first 4 weeks and £30ish for the next 2 weeks and after that she has to pay nothing. Has anyone come across this?
(she was only there 12 days but they kept the bed open for 6 weeks)

We have also now been told that if she goes into this other home the six week rule starts again.

Anyone got any thoughts?

Regards
Ethel Joan