Coping (just about)

[Rachael81]

The back story in brief:
Mum (16 months from Vascular Dementia diagnosis) fell on a bus the last Friday in April, fractured her hip, had a half hip replacement, stayed in hospital for 18 days and 33 days in a rehabilitation unit. I asked if she could come home as her confusion was increasing and the staff were happy to discharge her.

What's new:
The staff asked if I was okay to support my mum at home as I had before - ensuring she took mediation on a night via a prompt over the phone. I agreed to that and said I would also ensure she got a hot meal once a day - her mobility had been reviewed and she was able to make a little snack for herself.

She see's herself as "poorly" and this means she sits in her chair all day long, refuses to eat what's prepared for her and doesn't make anything herself. She struggles to take her medication and if we (myself and my husband to be) don't wait until it's been swallowed will spit them out again. She's got what I think is water retention in her legs - I'm taking her to the GP today.

She hates me for being bossy and telling her off but I'm doing it from love, she asks the most random questions, and about people who are long since deceased (started to get into the habit of love lies). A new today was asking if she needed to phone work to let them know she was sick - she last worked properly before having me 36 years ago!

She's tried putting mint imperials in her ears instead of her hearing aids, always puts hearing aids in the wrong ears despite the being colour coded with a box which I made to prompt which is which. Also forgets to put false teeth in (and refuses point blank to put bottom set in).

Today's breakfast has taken 90 minutes and that's for a slice of toast - still ¾ left and a half cup of coffee of which only ½ has been drunk.

We've an appointment to see a dietician in just under 2 weeks - but they've already prescribed her energy rich supplement drinks and she refuses to have them.

I have a social worker coming to see me on Wednesday about my role as a carer as this is far more than I was lead to believe it would be from her leaving rehab - our wedding is in 3 weeks and I need things in place for when we go on honeymoon after.

I've also need put in touch with a volunteer based carers support group by mum's physiotherapist which I'm going to go to a coffee and chat session on Monday with.

Really just needed to vent but if anyone has any thoughts, tips or advise I'd greatly appreciate it.

 

[Oh Knickers]

Hi Rachel,

Sorry to read your post. This is sounding like a massive downturn for your mum. Having read other posts this is not uncommon in PWD (people with dementia) after anaesthesia.

Do you have AA(Attendance Allowance) for your mum? That is one of the first actions I would suggest you get in place for your mum. It is also the threshold for concern for SS (Social Services). You can do it online. Just explain what her needs are and what you do to fulfil those needs. e.g. Mother is no longer able to feed herself. I sort out food and encourage her to eat which can take 90 mins for the meal not to be eaten.

Another step to take, in addition to your wedding arrangements , is to get Council Tax Disregard done. With the AA and stopping of Council Tax, you will find a some money to pay for carers. Go online at your local Council. Look for Council Tax Disregard, Mental Impairment Disregard. (Yes, grim title) You will need AA and the diagnosis letter saying your mum has dementia. You then need to print off the form and get the GP or Gerontologist to sign and ensure they sign the date of the diagnosis as the disregard will then be backdated.

Please contact the organisations below. They have a lot of local knowledge and a lot of experience. Scroll down the screen and put in your mum's postcode and the local number will come up

Alzheimer's Society
https://www.alzheimers.org.uk/

Age UK
http://www.ageuk.org.uk/

Admiral Nurses
https://www.dementiauk.org/get-support/admiral-nursing/

Sadly, it does sound as though your mum is now in need of a care home. However, that can wait until you return. Get the guidance on what to do to support your mum between now and your return from honeymoon. At least get your mum on SS radar so should anything happen someone is aware. Very sadly, I don't think your mum will cope with being at your wedding without a lot of support.

In the meantime, I hope your big day goes well.

 

[Amy in the US]

I've no idea if this is possible, but perhaps an urgent/emergency placement in respite, to cover the length of time you will be out of town? I think you'd be able to enjoy your wedding and honeymoon more if you knew she had 24/7 supervising and care.

 

[Rachael81]

[SUP][/SUP]

Do you have AA(Attendance Allowance) for your mum?

No I don't, but reading gov.uk I need to have been providing the level of care I am doing for 6 months before I can... I think? I've only been doing it for about 2 weeks and everyone says I'm doing good except mum who hates me because I'm bossy and tell her what to do.

 

[Rachael81]

I've no idea if this is possible, but perhaps an urgent/emergency placement in respite, to cover the length of time you will be out of town?

I was thinking this but I'll be more hated than ever then! She hated the rehab unit and the strange environment increased her confusion.

 

[Rachael81]

Crushing pills tips?

When doing the breakfast visit this morning I found her on the living room floor wearing yesterday's clothes, she couldn't remember how long she'd been there but I suspect all night. Luckily she'd not fallen but had got there of her own free will, just couldn't get back up!

The LA had promised a care phone urgently 10 days ago, it's now been processed as emergency and should be fitted today so if she gets stuck again she can get help.

I've read up on all her pills and discovered all the day-time ones can be crushed and mixed with juice to take which is so much less of a battle - anyone got any tips for what to use to crush them as I'm conscious the back of the spoon on the kitchen work top may reduce dosage (powder left on surface and bits flying off)?

 

[nitram]

"...anyone got any tips for what to use to crush them..."

>>>pill crusher<<<

Inside a strong plastic bag.

Use something blunt and a cup and as a pestle and mortar.

 

[Rachael81]

"...anyone got any tips for what to use to crush them..."

>>>pill crusher<<<

I thought these only chopped them not ground them to a powder - will look at investing in one, thanks!

 

[Amy in the US]

Regarding the pills: if they can be crushed, you can also try giving them in yogurt, applesauce, pudding, peanut butter, custard, cottage cheese, pureed fruit or veggies (you could get jars of baby food for this), even in the cream filling of a cake, et cetera, and I've also read to use jam (sweet, and the bits of fruit/texture of the jam can help mask the medication).

Some medications can also be prescribed in a liquid form, which would make it easier to put them in beverages. I'd talk to the chemist and see what might be available. Sometimes this can be expensive, though.

A possibly helpful article: https://www.kingswaycompounding.com.au/effective-techniques-masking-medicine-flavour/

If/when you suspect there is a problem with an ability to swallow (rather than just not wanting to take meds/meds taste nasty/et cetera), then I'd ask for a SALT referral from the GP. I'm not saying your mother is there yet, and if she can otherwise eat and drink with no issues, likely not, but something to keep in mind for later down the road.

I hope you're able to find something that works with the medication.

I am sure it was distressing to find your mother on the floor this morning. I would suspect that she did fall, or passed out, or had some kind of vascular event, or felt unwell and got down on the floor. (Blood pressure problems, which can be common in PWDs, can make you feel like you want to get lower, so you end up on the floor. The beginning of an infection can also make a PWD unsteady.) With dementia, of course you can't trust the self-reporting. (If I believed my mother's version of the care home, she never gets her medicine, hasn't eaten in weeks, and never does anything. Not accurate!)

I'm sure this is all not what you would wish to be trying to cope with, while getting ready for your wedding. Sending good thoughts your way.

 

[saskia]

[SUP][/SUP]

No I don't, but reading gov.uk I need to have been providing the level of care I am doing for 6 months before I can... I think? I've only been doing it for about 2 weeks and everyone says I'm doing good except mum who hates me because I'm bossy and tell her what to do.

She doesn't hate you, the constant checking / worrying / caring you are doing, is a constant questioning time for her. She's scared but doesn't know why and any help you give will be pushed away, cos it's not in her norm.
I have done exactly the same for the past year, it comes from love in my mind. But, as my husband pointed out ' you don't realise, but you are constantly fussing' ...my mum's now in a beautiful care home, and yet i still can't stop. Mum accused me on the last visit of ' driving her mad'
It's the life of a daughter ... my brother as I type has taken himself off on holiday!
And of course, ditto all the advice above, however, you must put care package in place for your honeymoon otherwise you will go out of your mind with worry.

Hope you have a fabulous wedding day!

 

[Amy in the US]

I hope one of the UK experts will clarify, please, about applying for Attendance Allowance and getting on board with SS.

I don't recall ever hearing about a six month waiting period as a family carer before applying, but certainly could be mistaken.

Can anyone comment on that?

There are other benefits, such as a reduction of council tax, you can apply for (and I believe that one can be backdated).

Also others here can advise on how to sort out Powers of Attorney, if you haven't done so already.

Sorry if this sounds like a to-do list, which I know you don't need!

Saskia is right: she doesn't hate you, that's the disease talking. Generally the PWD (person with dementia) tends to focus most or all of the negative energy and criticism, on the person who is closest/provides the most care/is most familiar, because they are a safe place to direct that, and because "hostess mode" doesn't apply to close family. Most PWDs are scared all the time, scared to be alone, and need a lot of reassurance. Often they sort of know something is wrong, or not quite right, but not what to do about it. It's very hard. Many of us have been there and got the t-shirt.

These are helpful for some: http://www.alz.org/greaterdallas/documents/CompassionateComm.pdf

https://www.alz.org/co/documents/communication_strategies.pdf

 

[DMac]

Applying for Attendance Allowance

I hope one of the UK experts will clarify, please, about applying for Attendance Allowance and getting on board with SS.

I don't recall ever hearing about a six month waiting period as a family carer before applying, but certainly could be mistaken.

Can anyone comment on that?

Yes, it's true that the need for care has to have been in existence for 6 months or more before the applicant can qualify for Attendance Allowance (AA).

However, the chances are your mum HAS had the need for 6 months already - maybe more. You should be able to get advice from your local citizens' advice bureau (CAB), or Age Concern/ Age UK office about getting evidence to show that your mum has had the need for at least 6 months, so needs this allowance NOW. Suitable evidence can come in many forms - notes from social workers, district nurses or GPs.

Another tip - ring the helpline on the gov.uk website and ask for a form to be sent to your mum's address, rather than downloading it. A successful claim will be backdated to the date stamp on the posted form, whereas with a downloaded form, she will only be paid from the date of receipt of that form after it's completed and sent to them. It can take a long time to complete the form and gather all the evidence you need, but the posted form is valid for 6 weeks, so you have time.

Please, do get advice from AC, Age UK or CAB to help you complete the form. It is devilishly complicated, as it is designed for physical rather than mental impairments. The form might seem repetitive, but don't be put off by this. It's all about points scoring.

AA is awarded at 2 rates, basic and higher. I applied for the higher rate for my FIL once he started to need night-time care. I realise now that I could have applied for it sooner, as the higher rate was set to start 6 months from the date of my application. Unfortunately, he died before the 6 months was up.

 

[Shedrech]

hello Rachael81
I don't know how you are making all these arrangements and also organising your wedding
to be honest, I think you have been dropped in the proverbial
from what you describe, it may well be a good idea to ask about full time care when you have the meeting on Wednesday - you are about to embark on a new stage in your own life and it really does sound as though your mum needs support all the time now - please do consider it; at least a respite stay for the days leading up to your wedding and the weeks after so that you can go away with peace of mind
the AA does have the 6 month 'delay' but apply asap and let them sort out whether they will pay straight away or in the future - in the extra comments section you can make it clear how long your mum has had some of the care needs - remember to describe your mum's situation on her worst day and night; I mention night as I just wonder how she is coping then; and be brutally honest, which makes the form pretty uncomfortable reading, sadly - the form is available online, and through the post - I got both and found that doing so made it much easier to work out what I needed to put, and also the initial date of application was registered both ways - it was also useful to use one form to organise the info and the other to actually apply
do check with a pharmacist and her GP about crushing the pills, the GP does need to know and it may be that some of the meds can be prescribed in eg liquid form - check with the pharmacist about a pill crusher too, as I think they are available
best wishes

 

[Amy in the US]

DMac and Shedrech, thank you for clarifying.

A need for care for six months, is not the same as waiting to apply until a family member has been providing care for six months, correct? It's the need, which could be asserted to by a doctor or social worker or similar?

So if the OP's mother fell on 28 April, presumably the need for care goes back at least to that date, if not prior to the fall, if I understand correctly?

(You'd think being a carer would be enough, without the wretched paperwork.)

 

[Slugsta]

When I filled in the forms for Mum's AA I explained her daytime needs in detail. I then said that I was not with her overnight but thought it reasonable to expect that someone who needed x,y and z during the daytime would also have nighttime needs. She was awarded the higher rate.

 

[Aisling]

When doing the breakfast visit this morning I found her on the living room floor wearing yesterday's clothes, she couldn't remember how long she'd been there but I suspect all night. Luckily she'd not fallen but had got there of her own free will, just couldn't get back up!

The LA had promised a care phone urgently 10 days ago, it's now been processed as emergency and should be fitted today so if she gets stuck again she can get help.

I've read up on all her pills and discovered all the day-time ones can be crushed and mixed with juice to take which is so much less of a battle - anyone got any tips for what to use to crush them as I'm conscious the back of the spoon on the kitchen work top may reduce dosage (powder left on surface and bits flying off)?

You can buy a pill crusher in a chemist. Pill administration was the bane of my life with OH. I put them in yogurt, drinks etc. Eventually I got some in liquid form.

Aisling xxx

 

[Rachael81]

Smashing time!

Mum smashed her glass of squash yesterday evening... another thing to buy is a plastic sippy cup with handles!

For the second night in a row I've been on my hands and knees wiping the bathroom floor to free it of wee puddles as she's not left enough time. As she forgets to use the Tena pads I bought I'm thinking I need to get the pants ones and hide all her cotton knickers?

Currently printing an AA form to use to draft my answers before fillling out the e-version but st the minute every day seems to have an additional problem the day before didn't!

 

[Rachael81]

Found Mum on the floor again this morning, but much more confused and hadn't got a clue how she'd got there - not even sat up.

Me and HTB managed to get her up, got her to the loo and back to her chair. Phoned NHS direct and an ambulance is on its way for us. Over the last couple of days she's had a strong leaning to the right in sitting, standing and walking, I think it might have been another TIA but there's not much to be done for that - she's on all the right mess.

It's my hen do tomorrow afternoon - we're having afternoon tea and it's a family friendly event. But might have to cancel - will see what medical staff say though.

 

[Bailey2]

She doesn't hate you

She doesn't hate you, the constant checking / worrying / caring you are doing, is a constant questioning time for her. She's scared but doesn't know why and any help you give will be pushed away, cos it's not in her norm.
I have done exactly the same for the past year, it comes from love in my mind. But, as my husband pointed out ' you don't realise, but you are constantly fussing' ...my mum's now in a beautiful care home, and yet i still can't stop. Mum accused me on the last visit of ' driving her mad'
It's the life of a daughter ... my brother as I type has taken himself off on holiday!
And of course, ditto all the advice above, however, you must put care package in place for your honeymoon otherwise you will go out of your mind with worry.

Hope you have a fabulous wedding day!

My daughter said to me "it's not what nana wants but it is what nana needs' when my mum had to go into respite care after leaving hospital. My mum hates it (she has only been there 5 days) but I was struggling on for years driving to see her every day and worrying about what state she would be in when I got there. She wants to just shut herself off and stay in bed in the care home until I go and visit each afternoon after work. I am hoping that in time she will settle (I may look at other homes as I have some reservations about the one she is in) I worry that if anything happens to me then she will be even more isolated and as I have a pacemaker myself my health is suffering and I need care for her. I feel for you but something has to give and I wish you all the luck in the world and you will get there, you have to think of yourself and your physical and mental health to be able to make the right decisions for your mum. Keep strong xxx

 

[Shedrech]

hello Debbie
a warm welcome to TP
what a thoughtful and sensible daughter you have: I'm sure you treasure her - you care so much for your own mother, as your daughter cares for you
I hope you get some time to relax knowing your mum's needs are being met - a good idea to look at other care homes, but don't let it take all your time - having seen the home your mum is in, you'll have a better idea than before what you are looking for and what you need to ask
when you are confident in the home you choose, you'll have the peace of mind to not feel you have to visit every day - at least, that's how I now feel with my dad
best wishes