[Misc] Advice on elderly parent / (possible) dementia / hospital discharge type stuff

[GT49er]

Sorry to hear about your Mum, it’s a distressing situation to be in. I’ve been through it with my Dad.

It sounds like they have made some kind of assessment but has a social worker made that assessment?

When I was dealing with my Dad many years ago I had to fight to get an assessment which was first denied because he was a self funder. West Sussex had a completely different criteria to East Sussex before they would do an assessment. They were of the opinion if an Occupation Therapist was involved that’s all they needed to do.

When I was dealing with my Dad in hospital with dementia many years ago I had to fight to get a social worker’s assessment which was first denied because he was a self funder. West Sussex also had a completely different criteria to East Sussex before they would do an assessment. They were of the opinion if an Occupation Therapist was involved and Doctor’s had said they could be discharged that’s all they needed to do. They also expected the family to arrange all the care.
In Brighton it would be automatic that a social worker would be involved in a complex case such as your mother’s.

A social workers assessment helps to identify what the condition is on discharge and what needs to be in place to support. Most importantly it also should involve your input in the assessment, this gives you the chance to go into more detail about how your Mum was and how she has changed and is a written record.

This assessment also sets a benchmark to measure any future improvement or deterioration. Given the complexities of your Mum’s health and how they have changed so quickly I would recommend you push for a social worker to be involved it will also give you more proactive involvement in the process.

I certainly think (from my brother's experience) that West Sussex Social Services is mainly about not paying for anything, and not helping much. Social Services (as well as GP and any hospital involved) should be involved in any (usually online) assessment for CHC (Continuing Healthcare, for care for people at home who cannot, for instance cook, or do anything else for themselves). They didn't bother to show, preferring instead to bill my brother for £13,000 for the time when his care costs weren't covered by CHC (because Social Services - as well as the GP - hadn't turned up for the assessment).

 

[Giraffe]

Sorry to hear you’re going through this. As you know both of my parents passed away in the last few years and spent their last few weeks in care homes. Both my sister and I did the rounds in checking out the care homes in Worthing and were shocked at the disparity in perceived quality and care. My sister is a carer herself so we had a bit of an insight anyway but we were still both shocked. In the end we took the view that our gut feel about a place was all we could go on and knew that we were doing the best we could for them under difficult circumstances.

As others have already said don’t accept the first answer that is thrown at you. If you don’t think your mum is ready to go home then push against it. If you’re offered a home but it doesn’t feel right look for others. They normally give you a short list anyway.

And finally look after yourself as well. I’ve seen a fair few friends of around our age go through this recently and it’s easy for it to take over your life and you understandably lose your way a bit. Sounds like you have good support from your sister and family though.

I’ll catch up with you when I’m back.

 

[Herr Tubthumper]

I can’t offer any advice but I wish you and your mum well xx

 

[Blue3]

Bozza if your mum is indeed suffering from dementia then it’s very sad news but I would say many other conditions present similar symptoms that are temporary and treatable.
my family has a history of dementia my grandmother all 7 of her children including my father had and passed away as a consequence my brother has recently been diagnosed with it and I am currently undergoing a series of tests having shown early symptoms.
I also know what it’s like supporting my Dad during his early days with dementia it was a period where I was able to connect with him remembering my childhood and his life growing up and then during WW2.
There were some funny moments some sad moments but ultimately the disease progressed to the point where he was unable to do some of the basics and was often no longer recognising who we were, we took the incredibly difficult decision that he need to go into a home where he remained until passing away.
Good luck Bozza but you are doing the right thing in reaching out for support

 

[SIMMO SAYS]

I mentioned on another thread that I am looking after my 90 year old mum for the next two weeks. She has all the signs of short term memory loss. Yet she can finish the Argus crossword every day. My sister and I have had tentative chats about what to do when her health gets really bad. She wants to put her into a local old peoples home. I am for keeping her in her bungalow for as long as possible. But at the moment she is as fit as me (bad) and I'm coming up to 68 years old next month. I have just had breakfast with her and she has asked me five times in five minutes if I take sugar in my tea. I cannot lie I don't want my inheritance to go to a bloke who drives around in a brand new Ferrari.

 

[NS Herald]

Lots of good advice here Bozza - my input having dealt with 2 relatives for several years:

1. Even if you suspect dementia still try and get LPA's in place. There are other roads you can go down to get some control but LPA's are best.
2. Apply for attendance allowance as soon as you can - this isn't means tested but takes quite a while to get in place
3. Home care visits will be invaluable.
4. Look at installing some cameras in her home such as Ring and also a pendant alarm system.
5. Look after yourself - I cannot overstate how important that is.
6. Dealing with people who have dementia can be incredibly challenging from all sorts of perspectives but particularly understanding their 'world'. In that regard perhaps the most useful thing I ever did was to watch the film The Father with Anthony Hopkins. It was absolutely brilliant in making me understand I had to accept and go into their world no matter how daft it may seem. I just accepted answering the same questions 10 times in 10 minutes etc etc which was so valuable in me becoming less stressed.

Good luck

 

[Eric the meek]

A few hints if I may, on how to deal with a dementia patient.

Every time I visited her, my mum never recognised me, so each time I said in a clear voice, 'Hello Mum!' to help her know who I was.

One thing that I don't think has been mentioned, is that dementia patients can still grieve, because they can't remember who is alive or dead.
My mum often used to ask after her mother, her brothers etc, all of whom were long since dead.
In the beginning we foolishly told her the truth, which caused her to grieve for them, again and again, so we quickly learned to tell a little white lie and change the subject.

In her later stages of dementia, she was in a good home, and was the happiest I had seen her for a long time. It was a vast improvement on her barely coping living alone with a carer coming in periodically.

Another aspect of dementia that I found, is that the relatives of someone with dementia, go through the grieving process to an extent, so that when she passes away, it isn't actually as bad as it might have been.

Good luck @Bozza. My thoughts are with you. All this will pass, and in time it will be replaced by fond memories. You will get through it.

 

[Bodian]

So much advice on this thread and via PM - thanks so much everyone. I'll give everything a thorough read.

It feels like the POA ship has sailed unfortunately. I don't see how mum is of sound enough mind, as things stand, to consent with the appropriate level of awareness.

I don't doubt she would consent if I asked, but that's not the same, is it?

It is particularly annoying as I did start the process with an online provider a while back, but got to the bit about needing witnesses (the term they use may be slightly different) and stopped, intending to revisit. I didn't, regrettably.

You can still achieve the same as a POA by applying to the court of protection for a deputyship https://www.gov.uk/become-deputy

Takes longer, and costs more - but worth doing for the long-term.

Although time-wise, we have recently completed POAs for my aunt - and it must have taken well over six months as well, so even if your Mum gets back to a position where she can consent, it's not over quick.

Good luck.

 

[ROSM]

So much advice on this thread and via PM - thanks so much everyone. I'll give everything a thorough read.

It feels like the POA ship has sailed unfortunately. I don't see how mum is of sound enough mind, as things stand, to consent with the appropriate level of awareness.

I don't doubt she would consent if I asked, but that's not the same, is it?

It is particularly annoying as I did start the process with an online provider a while back, but got to the bit about needing witnesses (the term they use may be slightly different) and stopped, intending to revisit. I didn't, regrettably.

Don't stress on that. Hospital delirium can clear (once home, balanced meals, rehydration etc) to a point where someone can reach a point to legally contract. We actually used a solicitor so we had verifiable independent proof dad was ok to do it.

 

[Cheshire Cat]

Regarding care homes. You need to see the home and be able to look past the decor to the level and standard of care offered. If I had had to chose one, I wouldn't have chosen the one my wife is in based on a 4 year old out of date CQC report (which wasn't very good then), and the fact it looks a bit tatty and run down. Social Services found the place for me.

However the staff seem very good and committed, and the standard of care actually provided appears good. The home is also doing a lot to spruce up the decor. The manager is very approachable and on top of issues. I can visit whenever I want. It's not the Ritz but she seems safe there, is warm, fed and looked after better than I could on my own. If and when she has a crisis they are much better equipped and experienced to cope. I don't see any need to move her elsewhere.

On the down side it costs £1,500 a WEEK.

I am effectively buying a new home for her to live in that is better suited to what she has become.

There is also the on ongoing guilt that I failed her by no longer being able to look after her (regardless that I know it was the only option left), and the fact that I don't know how she is when I'm not visiting - she might be fine or "pining for the fiords". She doesn't appear distressed so I have to assume she is ok, but she wouldn't be able to tell me due to her condition. Ultimatel you have to trust the home, and hope your trust is reciprocated.

The Alzhimers Society produce a free booklet on coosing a care home

Choosing a care home for a person with dementia

Our booklet will help if you're caring for or supporting someone with dementia and are looking to choose the right care home. This free resource also has tips for moving into a care home.

www.alzheimers.org.uk

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

 

[Psychobilly freakout]

Sorry to hear this, it’s horrible seeing dementia or Alzheimer’s take hold of someone you love, sometimes it can be rapid, and with my step gran it was gradual, when we looked back on her life the signs were there, silly things, like falling out of chairs, shed giggle about it, and call her daft or batty, there is a lot of sound advice on here, nothing I can really add and I wish you and your mother well.

 

[BrightonCottager]

Excellent advice, and I'd echo what @NS Herald says about Attendance Allowance. Its a 30 page form, and you have to provide medical details about what your mums needs are. Age UK charities can help completing. Once in place though she could get £108/week if she needs a lot of care to do the basics. This continues if she moves into a home, although it's reduced if it's a home paid for by Social Services.

Another thing about looking after yourself. Councils have carer services with help for you including drop-in carer coffee mornings, discounts at local venues and advice.

 

[Cheshire Cat]

You might also want to apply for Personal Independence Payments. They are not means tested, and unlike carer allowances you are less likely to go to prison.

 

[jakarta]

End of Life Stuff:

My mother is (very luckily for her) an early dementia nursing home. (excellent care from mostly Filipino nurses)
She is now 90, bed bound but has no quality of life that I can see.
She is still based in Cheshire so an annual visit is all we can manage, she needs reminding who we are on arriving.
Am I wrong in wanting a peaceful death?

 

[BLOCK F]

Hi Bozza,
I am sorry to hear about your mum.
I won’t repeat all the good advice that has been given on here, but I hope that you get the best possible outcome for her.
A word about Care or Nursing Homes. My mother in law was suffering from dementia and passed away in hospital 4 days ago. She was in an excellent home in Chichester for two and a half years, run by Barchester Healthcare, who have homes all over the country, with one in Lewes and one in Shoreham, I believe. They are not cheap, but if all their homes are of the same standard as Marriott House in Chichester, I would recommend them. The care and kindness she received was outstanding.
Best Wishes,
Block F.
P.S. Additionally, both my parents had carers at home and we employed Bluebird Care. They weren’t perfect, but generally did a pretty good job.

 

[BLOCK F]

Excellent advice, and I'd echo what @Eric the meek says about Attendance Allowance. Its a 30 page form, and you have to provide medical details about what your mums needs are. Age UK charities can help completing. Once in place though she could get £108/week if she needs a lot of care to do the basics. This continues if she moves into a home, although it's reduced if it's a home paid for by Social Services.

Another thing about looking after yourself. Councils have carer services with help for you including drop-in carer coffee mornings, discounts at local venues and advice.

I can second that.
Age UK were most helpful in getting the ghastly form completed. A very pleasant and patient lady visited my parents’ home and the assistance was priceless.

 

[Deadly Danson]

End of Life Stuff:

My mother is (very luckily for her) an early dementia nursing home. (excellent care from mostly Filipino nurses)
She is now 90, bed bound but has no quality of life that I can see.
She is still based in Cheshire so an annual visit is all we can manage, she needs reminding who we are on arriving.
Am I wrong in wanting a peaceful death?

No. You definitely aren't wrong. My Mum can't speak, watch TV or read a book, doesn't react to music or people particularly, can't get out of bed, is incontinent and, if she expresses an emotion, it's generally one of unhappiness whilst Dad (also incontinent and very immobile) has no idea that he is still married to her (after 55 years) or that he shares a room with her and has no recollection of the last 50 years or any awareness of where he is. I wish they would quietly and peacefully drift away and boy does that make me feel guilty.

 

[Sussexscots]

Firstly, you absolutely have my absolute sympathy. My mother passed away in the last month. Mainly due to the frailty of old age, but her last few years were blighted by Alzheimer's.

She was able to live relatively independently for a few years with carers visiting and my brother or myself taking her in a daily main meal. Otherwise she wouldn't eat or drink.

Sadly, a fall last year meant she had to spend the last nine months of her life in a home. She was however, looked after there with great dignity and a gentle kindness from the staff

Others have already covered most of this, however, my observations of the last few years are:

Do try to get a proper diagnosis before she is leaves rehabilitation/respite. That can be important for claiming benefit like attendance allowance. We were also able to obtain rebate of Council Tax for mum whilst she was still living at home. If, ultimately, she requires residential care, you'll need a home that is able to accommodate residents with dementia

If you have carers visiting to assist with, eg personal care, be aware that if the end user declines, carers are not able to make the person shower or wash. Latterly, whilst she was still at she home had to shower mum myself as she flatly refused the carers assistance.

If you do have a diagnosis of dementia, do (if she will tolerate it) try to get your mum out for lunch/coffee in different surroundings. It keeps their mind active and the casual interaction with different people - even just a quick good morning or a word about the weather - helps to keep the person feeling part of society. I user to do this a lot with mum (helps that I'm retired) and during the covid restrictions, she definitely went downhill when this wasn't possible.

Research care homes carefully. I consider the one my brother and I found for mum exceptional. The staff were brilliant with her. Even when her behaviour could be challenging. There were lots of activities and different things happening to keep the residents stimulated.

The demands on you and your family as carers are not to be underestimated. You need to schedule time out for yourself and your family.

I wish you strength.

 

[Flounce]

Sorry to hear this Bozza. I had a very stressful time after my mother had a stroke out of the blue and changed beyond recognition. She still knew who I was but basically lost interest in pretty well everything, having been very opinionated and almost controlling previously. It’s a horrible thing to deal with, especially seeing the change in a parent’s character

Some really good advice on here that I can’t really add to, just wishing you the best in dealing with this.

 

[chaileyjem]

PS : Thanks for all of the stories and advice on this thread and everyone willing to share their experiences. As said going through something similar as @Bozza with my Dad and it’s been a heartbreaking , useful and supportive read. NSC can be such a kind place sometimes…